Oxford Textbook of Palliative Nursing, Third Edition

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Oxford Textbook of Palliative Nursing

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Oxford Textbook of Palliative Nursing

o] THIRD EDITION

EDITED BY

Betty R. Ferrell, RN, PhD, MA, FAAN, FPCN Research Scientist Department of Nursing Research and Education City of Hope National Medical Center Duarte, California

Nessa Coyle, PhD, APRN, FAAN Pain and Palliative Care Service Department of Medicine Memorial Sloan-Kettering Cancer Center New York, New York

1 2010

1 Oxford University Press, Inc., publishes works that further Oxford University’s objective of excellence in research, scholarship, and education. Oxford New York Auckland Cape Town Dar es Salaam Hong Kong Karachi Kuala Lumpur Madrid Melbourne Mexico City Nairobi New Delhi Shanghai Taipei Toronto With offices in Argentina Austria Brazil Chile Czech Republic France Greece Guatemala Hungary Italy Japan Poland Portugal Singapore South Korea Switzerland Thailand Turkey Ukraine Vietnam

Copyright © 2010 by Oxford University Press, Inc. Published by Oxford University Press, Inc. 198 Madison Avenue, New York, New York 10016 www.oup.com Oxford is a registered trademark of Oxford University Press. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of Oxford University Press. Library of Congress Cataloging-in-Publication Data Oxford textbook of palliative nursing / edited by Betty R. Ferrell, Nessa Coyle. —3rd ed. p. ; cm. Rev. ed. of: Textbook of palliative nursing. 2nd ed. 2006. Includes bibliographical references and index. ISBN 978-0-19-539134-3 1. Palliative treatment. 2. Nursing. 3. Terminal care. I. Ferrell, Betty. II. Coyle, Nessa. III. Textbook of palliative nursing. IV. Title: Textbook of palliative nursing. [DNLM: 1. Nursing Care. 2. Palliative Care. 3. Terminal Care. WY 152 O98 2010] RT87.T45T49 2010 616′.029—dc22 2009029410

9 8 7 6 5 4 3 2 1 Printed in the United States of America on acid-free paper

For ewor ds To the First Edition

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Dame Cicely Saunders, OM, DBE, FRCP Chair St. Christopher’s Hospice Syndenham, London United Kingdom

Palliative care stems from the recognition of the potential at the end of life for discovering and for giving, a recognition that an important dimension of being human is the lasting dignity and growth that can continue through weakness and loss. No member of the interdisciplinary team is more central to making these discoveries possible than the nurse. Realizing how little had been written and even less studied in this field, Peggy Nuttall, a former nursing colleague and then editor of the Nursing Times in London, invited me to contribute a series of six articles on the care of the dying in the summer of 1959.1 A registered nurse and qualified medical social worker, I had trained in medicine because of a compulsion to do something about the pain I had seen in patients and their families at the end of life. During 3 years as a volunteer nurse in an early home for such patients, I had persuaded the thoracic surgeon, Norman Barrett, for whom I was working, to follow up a few of his mortally ill patients both there and in their homes. “Go and read medicine,” he said. “It’s the doctors who desert the dying, and there’s so much more to be learned about pain. You’ll only be frustrated if you don’t do it properly, and they won’t listen to you.” He was right and I obeyed. After 7 years’ work, the first descriptive study of 1,100 patients in St. Joseph’s Hospice, London, from 1958 to 19652 was coupled with visits to clinical pain researchers such as Harry Beecher in Boston and many U.S. homes, social workers, and nurses in 1963. This visit included an all-important meeting with Florence Wald at Yale. A prodigious program of fundraising letters, professional articles, and meetings led to the opening of St. Christopher’s Hospice in 1967, the first inpatient, home care, research, and teaching hospice. All of those early contacts and countless other interested people led to the hospice movement and the palliative care that developed within and from it. Nurses were the first to respond to this challenge and remain the core of the personal and professional drive to enable people to find relief, support, and meaning at the end of their lives. All of the expertise described in this important v

vi

Forewords collection is to this end. The window to suffering can be a window to peace and opportunity. The nurse, in her or his skilled competence and compassion, has a unique place to give each person the essential message: “You matter because you are you, and you matter to the last moment of your life. We will do all we can to help you, not only to die peacefully but to live until you die.”3 Dame Cicely Saunders died in July 2005. The editors and all nurses in hospice and palliative care are grateful for her life contributions.

References 1. Saunders CM. Care of the dying. Nursing Times reprint. London: Macmillan, 1976. 2. Clark D. “Total pain,” disciplinary power and the body in the work of Cicely Saunders, 1958–67. Soc Sci Med 1999; 49:727–736. 3. Saunders C. Care of the dying. 1. The problem of euthanasia. Nurs Times 1976;72:1003–1005.

Florence Wald, RN, FAAN Branford, Connecticut

Nurses of my generation in the second half of the twentieth century were fortunate to be part of the hospice movement and to respond to an eager public with an alternative way of care for the dying. Medical sociologists’ studies of hospital culture showed what many nurses already knew, that when technological intervention failed to stop the course of disease, physicians could not see that the treatment was futile or join the patient in a willingness to cease. By 1950, nurses began to carry out studies as principal investigators and were on their way to being respected by other disciplines. Two outstanding leaders were Hilde Peplau and Virginia Henderson, both educated nurses in clinical practice who established a foundation for the advanced nurse practitioner to be a valued member of an interdisciplinary team. This surfaced first in psychiatric nursing, but as hospice care came into being, the nurse became a pivotal part of the interdisciplinary team. “Hospice nursing,” Virginia Henderson said, “was the essence of nursing”; volunteers came quickly into hospice care, proving Henderson’s precept and giving the lay individual “the necessary strength, will, and knowledge to contribute to a peaceful death.”1 Physicians in the forefront of medical ethics, such as Edmund Pellegrino and Raymond Duff, encouraged physicians to recast their roles as decision makers and communicators so that the whole team could keep the patients’ values and the families’ wants the prime concern. The works of those who have brought alternative therapies into use, for example, Martha Rogers and Barbara Dossey, have added to the spiritual dimensions of care. The growth of

Forewords

vii

the religious ministry movement and the creative addition of the arts and environment round out the cast of contributors. Reviewing the progress we nurses have made allows us to proceed more effectively. Florence Wald died in November 2008 at her home in Bradford, Connecticut at the age of 91. The editors and all nurses in hospice and palliative care are grateful for her life contributions.

Reference 1. Henderson V. Basic Principles of Nursing Care. London: International Council of Nurses, 1961:42.

Jeanne Quint Benoliel, DNSc, FAAN Professor Emeritus Psychosocial and Community Health School of Nursing University of Washington Seattle, Washington

At the end of the Second World War in 1945, people in Western societies were tired of death, pain, and suffering. Cultural goals shifted away from war-centered activities to a focus on progress, use of technology for better living, and improvements in the health and well-being of the public. Guided by new scientific knowledge and new technologies, health care services became diversified and specialized and lifesaving at all costs became a powerful driving force. End-of-life care was limited to postmortem rituals, and the actual caregiving of dying patients was left to nursing staff. Palliative nursing in those days depended on the good will and personal skills of individual nurses, yet what they offered was invisible, unrecognized, and unrewarded. Thanks to the efforts of many people across the years, end-of-life care is acknowledged today as an important component of integrated health care services. Much knowledge has accrued about what makes for good palliative care, and nurses have been in the forefront of efforts to improve quality of life for patients and families throughout the experience of illness. This book is an acknowledgment of the important part played by nurses in helping patients to complete their lives in a context of care and human concern.


Pr eface

o] Compassion and Competence

Betty R. Ferrell, RN, PhD, MA, FAAN, FPCN Research Scientist Department of Nursing Research and Education City of Hope National Medical Center

Nessa Coyle, PhD, APRN, FAAN Pain and Palliative Care Service Department of Medicine Memorial Sloan-Kettering Cancer Center

This third edition of the Textbook comes at a time when palliative nursing has truly come of age. The lessons of hospice nursing paved the way to the broad field of palliative care nursing and, in doing so, care of the seriously ill has expanded across diagnosis and settings of care. We dedicated our second edition, released in 2006, “For Every Nurse—A Palliative Care Nurse,” in recognition that nurses across settings and specialties were providing care that exemplifies palliative care principles. This edition bears a new name—Oxford Textbook of Palliative Nursing. This official designation by Oxford University Press recognizes that this book is a leading resource for the field. We are greatly indebted to our contributing authors, whose quality chapters have made this textbook a success. As this textbook has matured, so has our profession, and raising the bar has meant better care for patients and families. Many years ago, Dame Cicely Saunders said that our patients need both our compassion and our competence. Patients and their families need compassionate care to address their suffering, grief, despair, and loneliness. Compassionate care, as described in these pages, includes spiritual care and attention to depression: it recognizes hope in the face of illness and leads patients and families to moments of joy amidst sorrow. Competent care insures optimum relief of pain, wound care, relief of terrifying dyspnea, and artful skill in approaching ethical issues, complex cultural considerations, and intense family dynamics. Palliative care nursing, which is both compassionate and competent, is as Florence Nightingale described, “an art and a science.” It is our hope that this third edition continues to strengthen nurses, individually and collectively, and that as a profession we continue to grow into the fullness of what Cicely Saunders and Florence Nightingale envisioned: compassionate and competent nurses practicing the art and science of palliative nursing.

ix

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Preface

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About the Forewords On the previous pages, readers will find three Forewords, written for the first edition by three pioneers in the field of palliative nursing: Dame Cicely Saunders (deceased), founder of the modern hospice movement; Florence Wald (deceased), founder of the first hospice in America; and Jeanne Quint Benoliel, pioneer in psychosocial nursing and the role of nursing in caring for the terminally ill. We have reprinted the forewords from these pioneers in this edition because we believe that their legacy is an enduring contribution to all that has come to

be known as palliative nursing care. We are indebted to these women and to the many other nurses who have brought the field of palliative care to the forefront, and whose dedication will provide a foundation for us in the future.

o]

Acknowledgments The editors acknowledge the assistance of Licet Garcia and Andrea Hayward, who served as our research assistants throughout the process of this third edition.

Con ten ts

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Contributors

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Part I o] General Principles 1 Introduction to Palliative Nursing Care

3

Nessa Coyle

2 Hospice Palliative Care for the 21st Century: A Model for Quality End-of-Life Care 13 Kathleen A. Egan City and Mary J. Labyak

3 Hospital-Based Palliative Care

53

Marie Bakitas, Margaret Firer Bishop, and Paula A. Caron

4 Principles of Patient and Family Assessment

87

Elaine Glass, Douglas Cluxton, and Patrice Rancour

5 Communication in Palliative Care: An Essential Competency for Nurses 107 Constance M. Dahlin

Part II o] Symptom Assessment and Management 6 Pain Assessment

137

Regina M. Fink and Rose A. Gates

7 Pain at the End of Life

161

Judith A. Paice

8 Fatigue

187

Paula R. Anderson, Grace E. Dean, and Melany A. Piech

9 Anorexia and Cachexia

211

Dorothy Wholihan and Charles Kemp

10 Nausea and Vomiting

221

Cynthia King and Dana Tarcatu

xi

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Contents

11 Dysphagia, Xerostomia, and Hiccups

239

Constance M. Dahlin, Audrey Kurash Cohen, and Tessa Goldsmith

12 Bowel Management: Constipation, Diarrhea, Obstruction, and Ascites 269 Denice Caraccia Economou

13 Hydration, Thirst, and Nutrition

Michelle Schaff ner Gabriel, Pamela Kedziera, and Nessa Coyle

29 The Meaning of Hope in the Dying 303

321

31 Supporting Families in Palliative Care

16 Lymphedema Management

341

32 Planning for the Actual Death

17A Skin Disorders: Pressure Ulcers—Prevention and Management 359 Barbara M. Bates-Jensen

17B Skin Disorders: Malignant Wounds, Fistulas, and Stomas 387

629

Patricia Berry and Julie Griffie

Part IV o] Spiritual Care 33 Spiritual Assessment

647

Elizabeth Johnston Taylor

Susie Seaman and Barbara M. Bates-Jensen

18 Pruritis, Fever, and Sweats

613

Betty Davies and Rose Steele

Mei R. Fu and Jean K. Smith

34 Spiritual Care Interventions

405

663

Rev. Pamela Baird

Philip J. Larkin

19 Neurological Disturbances

35 Meaning in Illness

415

673

Tami Borneman and Katherine Brown-Saltzman

Judith A. Paice

20 Anxiety and Depression

425

Part V o] Special Patient Populations

Jeannie V. Pasacreta, Pamela A. Minarik, and Leslie Nield-Anderson

36 Caring for Those with Chronic Illness

21. Delirium, Confusion, Agitation, and Restlessness 449

37 Cultural Considerations in Palliative Care

Laura Bourdeanu, Marjorie J. Hein, and Pamela R. Tryon

38 Elderly Patients

713

Susan Derby, Sean O’Mahony, and Roma Tickoo

477

39 Poor, Homeless, and Underserved Populations

Marianne Matzo

Anne Hughes

24 Clinical Interventions, Economic Impact, and Palliative Care 487 Patrick J. Coyne, Thomas J. Smith, and Laurel J. Lyckholm

501

Barton T. Bobb

26 Sedation for Refractory Symptoms and Terminal Weaning 525 Patti Knight and Laura A. Espinosa

27 Complementary and Alternative Therapies in Palliative Care 545 Kate Kravits and Susan Berenson

701

Polly Mazanec and Joan T. Panke

469

25 Urgent Syndromes at the End of Life

687

Terri L. Maxwell

Debra E. Heidrich and Nancy English

23 Sexuality

597

Inge B. Corless

Mikel Gray and Terran Sims

22 Insomnia

579

Mary Ersek and Valerie T. Cotter

30 Bereavement

Deborah Dudgeon

15 Urinary Tract Disorders

Margaret L. Campbell, Linda M. Gorman, and Peggy Kalowes

Part III o] Psychosocial Support

291

14 Dyspnea, Death Rattle, and Cough

28 Withdrawal of Life-Sustaining Therapies: Mechanical Ventilation, Dialysis, and Cardiac Devices 567

40 End-of-Life Care for Patients with Mental Illness and Personality Disorders 757 Betty D. Morgan

41 Patients with Acquired Immunodeficiency Syndrome 767 Deborah Witt Sherman and Carl A. Kirton

42 Caring for the Drug-Addicted Patient at the End of Life 817 Kenneth L. Kirsh, Peggy Compton, and Steven D. Passik

43 Palliative Care of Cancer Survivors Mary S. McCabe and Nancy G. Houlihan

829

745

Contents

Part VI o] End-of-Life Care Across Settings

58 Grief and Bereavement in Pediatric Palliative Care 1081

44 Improving the Quality of Care Across All Settings 843

59 Pediatric Pain: Knowing the Child Before You

Betty Davies, Rana Limbo, and Juhye Jin

Mary Layman Goldstein and Mayuko Sakae

Marilyn Bookbinder

45 Long-Term Care

879

Part VIII o] Special Issues for the Nurse in End-of-Life Care

Sarah A. Wilson

46 Home Care

891

Paula Milone-Nuzzo, Ruth McCorkle, and Elizabeth Ercolano

47 The Intensive Care Unit

905

1121

61 The Experience of the Nurse in End-of-Life Care in the 21st Century: Mentoring the Next Generation 1131

923

Jeanne Robison and Anna R. Du Pen

49 Rehabilitation and Palliative Care

Mary L. S. Vachon and Jayne Huggard

935

Donna J. Wilson and Kathleen Michael

50 The Emergency Department

60 The Advanced Practice Nurse Jay R. Horton and Rose Anne Indelicato

Jennifer McAdam and Kathleen Puntillo

48 The Outpatient Setting

62 Ethical Considerations in Palliative Care

1157

Maryjo Prince-Paul and Barbara J. Daly

949

Garrett K. Chan, Margaret L. Campbell, and Robert Zalenski

63 Public Policy and End-of-Life Care: The Nurse’s Role 1173

51 The Role of Nursing in Caring for Patients Undergoing Surgery for Advanced Disease Betty R. Ferrell, Gloria Juarez, and Tami Borneman

Colleen Scanlon

959

64 Palliative Care and Requests for Assistance in Dying 1185 Deborah L. Volker

52 Palliative Chemotherapy and Clinical Trials in Advanced Cancer: The Nurse’s Role 969

65 Nursing Education

1193

Denice K. Sheehan and Pam Malloy

66 Nursing Research

Virginia Sun

1211

Betty R. Ferrell, Marcia Grant, and Virginia Sun

67 Enhancing Team Effectiveness

1225

Shirley Otis-Green and Iris Cohen Fineberg

Part VII o] Pediatric Palliative Care 53 Symptom Management in Pediatric Palliative Care

Part IX o] International Models of Palliative Care

983

Melody Brown Hellsten and Glen Medellin

54 Pediatric Hospice and Palliative Care

997

Lizabeth H. Sumner

55 Pediatric Care: Transitioning Goals of Care in the Emergency Department, Intensive Care Unit, and In Between 1019 Marcia Levetown, Melody Brown Hellsten, and Barbara Jones

56 End-of-life Decision-Making in Pediatric Oncology 1049 Pamela S. Hinds, Linda L. Oakes, and Wayne L. Furman

57 Palliative Care in the Neonatal Intensive Care Unit 1065 Carole Kenner and Marina Boykova

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68 International Palliative Care Initiatives 1239 Nessa Coyle

69 Palliative Care in Canada

1241

Dennie Hycha and Lynn Whitten

70 Palliative Care in Australia and New Zealand 1255 Margaret O’Connor and Peter L. Hudson

71 Palliative Care in the United Kingdom

1265

Penny Hansford

72 Palliative Care in Europe

1275

Marianne Jensen Hjermstad and Stein Kaasa

73 Palliative Care in Situations of Conflict Nathan I. Cherny and Ora Rosengarten

1293

1099

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Contents

74 Palliative Care in South America

1301

Marta H. Junin

75 Palliative Care in Africa

1319

Faith N. Mwangi-Powell, Henry Ddungu, Julia Downing, Fatia Kiyange, Richard A. Powell, and Abby Baguma

76 Palliative Care in Japan

1331

Hyun Sook Kim and Boon Han Kim

78 A Good Death

1349

Betty R. Ferrell

Appendix Palliative Care Resource List

Sayaka Takenouchi and Keiko Tamura

77 Palliative Care in South Korea

Part X o] Conclusion

Rose Virani and Licet Garcia

1339 Index

1357

1353

Con tr ibu tors

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Paula R. Anderson, RN, MN, OCN Oncology Research Initiatives University of Texas Southwestern Medical Center Moncrief Cancer Center Fort Worth, Texas Abby Baguma, BA Partnerships Manager African Palliative Care Association Kampala, Uganda, Africa Rev. Pamela Baird, AS End-of-Life Practitioner Seasons of Life Arcadia, California Marie Bakitas, APRN, DNSc, ACHPN, AOCN, FAAN Assistant Professor, Clinical Researcher Dartmouth Medical School Nurse Practitioner Department of Anesthesiology, Section of Palliative Medicine Dartmouth Hitchcock Medical Center Lebanon, New Hampshire Barbara M. Bates-Jensen, PhD, RN, CWOCN Associate Professor UCLA School of Nursing & David Geffen School of Medicine, Geriatrics Los Angeles, California Susan Berenson, RN, MSN, OCN Clinical Nurse Specialist Department of Integrative Medicine Memorial Sloan-Kettering Cancer Center New York, New York

xv

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Contributors

Patricia Berry, PhD, APRN, ACHPN, FAAN Associate Professor University of Utah Hartford Center of Geriatric Nursing Excellence College of Nursing Salt Lake City, Utah

Paula A. Caron, MS, ARNP, AOCNP, ACHPN Adult Nurse Practioner Department of Anesthesiology, Section of Palliative Medicine Dartmouth Hithcock Medical Center Lebanon, New Hampshire

Margaret Firer Bishop, MS, ARNP Adult Nurse Practitioner Department of Anesthesiology, Section of Palliative Medicine Dartmouth Hitchcock Medical Center Lebanon, New Hampshire

Garrett K. Chan, APRN, PhD, ACHPN, CEN, FAEN Lead Advanced Practice Nurse and Associate Medical Director Emergency Department Observation Unit Stanford Hospital & Clinics Stanford, California Assistant Clinical Professor University of California San Francisco Department of Physiological Nursing San Francisco, California

Barton T. Bobb, MSN, FNP-BC, ACHPN Palliative Care & Pain Consult Team NP Virginia Commonwealth University Massey Cancer Center Thomas Palliative Care Program Richmond, Virginia Marilyn Bookbinder, RN, PhD Director of Nursing and Quality Department of Pain Medicine and Palliative Care Beth Israel Medical Center New York, New York Tami Borneman, MSN, RN, PHN, CNS, FPCN Senior Research Specialist Division of Nursing Research and Education City of Hope National Medical Center Duarte, California Laura Bourdeanu, MS, PhD Nurse Practitioner Nursing Support, Medical Oncology City of Hope National Medical Center Duarte, California Marina Boykova, MSc, RN Doctoral Student University of Oklahoma Oklahoma City, Oklahoma Katherine Brown-Saltzman, RN, MA Executive Director University of California, Los Angeles, Ethics Center Assistant Clinical Professor University of California, Los Angeles, Medical Center University of California, Los Angeles, School of Nursing Los Angeles, California Margaret L. Campbell, RN, PhD, FAAN Director, Nursing Research Detroit Receiving Hospital Assistant Professor—Research Wayne State University, College of Nursing Detroit, Michigan

Nathan I. Cherny, MBBS, FRACP, FRCP Director Cancer Pain and Palliative Medicine Shaare Zedek Medical Center Jerusalem, Israel Douglas Cluxton, MA, LPC Vice President, Education Ohio Hospice and Palliative Care Organization Columbus, Ohio Audrey Kurash Cohen, MS, CCC-SLP Clinical Specialist Department of Speech, Language and Swallowing Disorders Massachusetts General Hospital Boston, Massachusetts Peggy Compton, RN, PhD Associate Professor University of California, Los Angeles, School of Nursing Los Angeles, California Inge B. Corless, RN, PhD, FAAN Professor MGH Institute of Health Professions School of Nursing Boston, Massachusetts Valerie T. Cotter, DrNP(c), CRNP, FAANP Advanced Senior Lecturer Director, Adult Health Nurse Practitioner Program University of Pennsylvania School of Nursing Philadephia, Pennsylvania Nessa Coyle, PhD, APRN, FAAN (Editor) Pain and Palliative Care Service Memorial Sloan-Kettering Cancer Center New York, New York Patrick J. Coyne, MSN, APRN, ACHPN, FAAN, FPCN Clinical Director Thomas Palliative Care Services Virginia Commonwealth University /Massey Cancer Center Richmond, Virginia

Contributors Constance M. Dahlin, ANP, BC, ACHPN, FPCN Clinical Director Palliative Care Service Massachusetts General Hospital Boston, Massachusetts Barbara J. Daly, PhD, RN, FAAN Professor Case Western Reserve University Director Clinical Ethics University Hospitals Case Medical Center Cleveland, Ohio Betty Davies, RN, PhD, FAAN Professor Emerita Department of Family Health Care Nursing School of Nursing University of California, San Francisco San Francisco, California Professor and Senior Scholar School of Nursing University of Victoria Victoria, British Columbia, Canada Henry Ddungu, MBChB, MMed Advocacy Manager African Palliative Care Association Kampala, Uganda, Africa Grace E. Dean, PhD, RN Assistant Professor of Nursing University at Buffalo Adjunct Assistant Professor of Oncology Roswell Park Cancer Institute Buffalo, New York Susan Derby, RN, MA, GNP-BC Nurse Practitioner Pain and Palliative Care Service Memorial Sloan-Kettering Cancer Center New York, New York Julia Downing, MMedSci, BN(Hons) Dip CN RGN, PhD Deputy Executive Director African Palliative Care Association Kampala, Uganda, Africa

Denice Caraccia Economou, RN, MN, AOCN Senior Research Specialist City of Hope Division of Nursing Research and Education Duarte, California Kathleen A. Egan City, MA, BSN, CHPN Executive Director Suncoast Hospice Clearwater, Florida Executive Committee The Center for Hospice, Palliative Care and End-of-Life Studies University of South Florida Tampa, Florida Nancy English, PhD, APRN Assitant Professor University of Colorado College of Nursing Aurora, Colorado Elizabeth Ercolano, DNSc, RN, AOCNS Associate Research Scientist Yale University School of Public Health New Haven, Connecticut Mary Ersek, PhD, RN, FAAN Associate Professor University of Pennsylvania School of Nursing Philadelphia, Pennsylvania Laura A. Espinosa, RN, MS, CS Administrative Director of Heart and Vascular Services Memorial Hermann Hospital Houston, Texas Betty R. Ferrell, RN, PhD, MA, FAAN, FPCN (Editor) Research Scientist Division of Nursing Research and Education City of Hope National Medical Center Duarte, California

Deborah Dudgeon, MD, FRCPC W. Ford Connell Professor of Palliative Care Medicine Queen’s University Kingston, Ontario, Canada

Iris Cohen Fineberg, PhD, MSW Lecturer International Observatory on End of Life Care Division of Health Research School of Health and Medicine Lancaster University Lancaster, United Kingdom

Anna R. Du Pen, RN, MN, ARNP Adult Nurse Practitioner Kitsap Medical Group Bremerton, Washington

Regina M. Fink, RN, PhD, FAAN, AOCN Research Nurse Scientist University of Colorado Hospital Aurora, Colorado

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xviii

Contributors

Mei R. Fu, PhD, RN, APRN-BC Assistant Professor Course Coordinator Fundamentals of Nursing College of Nursing New York University New York, New York Wayne L. Furman, MD Member Department of Hematology-Oncology St. Jude’s Children’s Research Hospital Memphis, Tennessee Michelle Schaffner Gabriel, RN, MS, ACHPN Palliative Care Coordinator Department of Veterans Affairs VA Sierra Pacific Network Palo Alto, California Rose A. Gates, RN, PhD, NP, AOCN Oncology Nurse Practitioner Rocky Mountain Cancer Center Colorado Springs, Colorado

Julie Griffie, RN, MSN, ACNS-BC, AOCN Clinical Nurse Specialist Froedtert Hospital Milwaukee, Wisconsin Penny Hansford, RN, RM, HV, MSc Director of Nursing St. Christophers’s Hospice London, England Debra E. Heidrich, MSN, RN, CHPN, AOCN Palliative Care Clinical Nurse Specialist Bethesda North Hospital, TriHealth, Inc. Cincinnati, Ohio Marjorie J. Hein, MS Nurse Practitioner Nursing Support, Medical Oncology City of Hope National Medical Center Duarte, California

Elaine Glass, RN, MS, ACHPN Clinical Nurse Specialist Palliative Care at Grant Medical Center Columbus, Ohio

Melody Brown Hellsten, RN, MS, PNP-BC Pediatric Nurse Practitioner University of Texas Health Science Center, San Antonio Program Coordinator Pediatric Palliative and Supportive Care CHRISTUS Santa Rosa Children’s Hospital San Antonio, Texas

Tessa Goldsmith, MA, CCC/SLP, BRS-S Assistant Director Department of Speech, Language and Swallowing Disorders Massachusetts General Hospital Boston, Massachusetts

Pamela S. Hinds, PhD, RN, FAAN Director of Nursing Research Children’s National Medical Center Professor of Pediatrics George Washington University Washington, DC

Mary Layman Goldstein, RN, MS, APRN, BC Nurse Practitioner Pain and Palliative Service Memorial Sloan-Kettering Cancer Center New York, New York

Jay R. Horton, ACHPN, FNP-BC, MPH Clinical Program Coordinator The Lilian and Benjamin Hertzberg Palliative Care Institute The Brookdale Department of Geriatrics and Palliative Medicine Mount Sinai School of Medicine New York, New York

Linda M. Gorman, RN, MN, CNS-BC, CHPN, OCN Clinical Nurse Specialist Palliative Care Cedars-Sinai Los Angeles, California Marcia Grant, DNSc, RN, FAAN Research Scientist and Director Division of Nursing Research and Education City of Hope National Medical Center Duarte, California Mikel Gray, PhD, FNP, PNP, CUNP, CCCN, FAAN Professor and Nurse Practitioner Department of Urology and School of Nursing University of Virginia Charlottesville, Virginia

Nancy G. Houlihan, RN, MA, AOCN Clinical Program Manager, Survivorship Program Memorial Sloan-Kettering Cancer Center New York, New York Peter L. Hudson, RN, PhD Director and Associate Professor Centre for Palliative Care Education & Research St. Vincent’s Hospital and The University of Melbourne Fitzroy, Victoria, Australia

Contributors Jayne Huggard, NZRN, Dip Couns., Dip AdTertEd, MHSc (Hons) MNZAC Staff and Family Support, Mercy Hospice Auckland Senior Tutor, School of Nursing Faculty of Medical and Health Sciences University of Auckland Auckland, New Zealand Anne Hughes, RN, PhD, ACHPN, FAAN Advance Practice Nurse, Palliative Care Laguna Honda Hospital & Rehabilitation Center/SFDPH San Francisco, California Dennie Hycha, RN, MN Program Director Regional Palliative Care Program Alberta Health Services, Capital Health Grey Nuns Community Hospital Edmonton, Alberta, Canada Rose Anne Indelicato, RN, MSN, ANP-BC, ACHPN, OCN Nurse Practitioner, Palliative Care Sound Shore Medical Center of Westchester New Rochelle, New York Instructor of Medicine New York Medical College Valhalla, New York Marianne Jensen Hjermstad, RN, MPH, PhD Associate Professor Pain and Palliation Research Group Department of Cancer Research and Molecular Medicine Faculty of Medicine Norwegian University of Science and Technology (NTNU) Trondheim, Norway Senior Researcher The Cancer Center Oslo University Hospital HF, Ulleval Oslo, Norway

xix

Marta H. Junin, RN Palliative Care Service Bonorino Udaondo Hospital Palliative Care Nurse Educator University of Buenos Aires Buenos Aires, Argentina Stein Kaasa, MD, PhD Professor Pain and Palliation Research Group Department of Cancer Research and Molecular Medicine Faculty of Medicine The Norwegian University of Science and Technology and The Palliative Medicine Unit St. Olavs Hospital Trondheim, Norway Peggy Kalowes, RN, PhD, CNS Director, Center for Women’s Cardiac Health and Research Memorial Heart and Vascular Institute Long Beach Memorial Medical Center Long Beach, California Pamela Kedziera, RN, MSN, AOCN Clinical Nurse Specialist Pain Management Center Fox Chase Cancer Center Philadelphia, Pennsylvania Charles Kemp, FNP, FAAN Senior Lecturer Baylor University Dallas, Texas Carole Kenner, DNS, RNC-NIC, FAAN Dean/Professor School of Nursing Northeastern University Boston, Massachusetts

Juhye Jin, RN, MS, PhD PhD Graduate Department of Family Health Care Nursing School of Nursing University of California, San Francisco San Francisco, California

Boon Han Kim, RN, PhD Professor Department of Nursing, Hanyang University President Korean Hospice Palliative Nurses Association Seoul, South Korea

Barbara Jones, MSW, PhD Assistant Professor Co-Director, The Institute for Grief, Loss, and Family Survival The University of Texas at Austin Austin, Texas

Hyun Sook Kim, PhD, RN Associate Professor Department of Elderly Health & Welfare, Chungju National University Director Research Institute of Health, Welfare & Education, Chungju National University Chungju, South Korea

Gloria Juarez, RN, PhD Assistant Professor Division of Nursing Research and Education City of Hope National Medical Center Duarte, California

xx

Contributors

Cynthia King, PhD, NP, MSN, CNL, FAAN Professor and Nurse Scientist Presbyterian School of Nursing Queens University of Charlotte Owner and Consultant Special Care Consultants Charlotte, North Carolina

Rana Limbo, PhD, RN, CNS-BC,PMHCNS-BC Director of Bereavement and Advance Care Planning Services Faculty Associate, University of Wisconsin—Madison School of Nursing Gunderson Lutheran Medical Foundation, Inc. La Crosse, Wisconsin

Kenneth L. Kirsh, PhD Assistant Professor Assistant Director for Research Symptom Management and Palliative Care Program Division of Hematology/Oncology Department of Internal Medicine Markey Cancer Center University of Kentucky Lexington, Kentucky

Laurel J. Lyckholm, MD Professor and Fellowship Program Director Hematology/Oncology and Palliative Care Medicine The Massey Cancer Center Virginia Commonwealth University School of Medicine Richmond, Virginia

Carl A. Kirton, DNP, RN, ANP-BC, ACRN Nurse Practitioner and Clinical Manager The AIDS Center Mount Sinai Hospital and Medical Center New York, New York Fatia Kiyange, BA, MA Education and Standards Manager African Palliative Care Association Kampala, Uganda, Africa Patti Knight, RN, MSN, CS, CHPN Palliative Care Unit Patient Manager Department of Palliative Care and Rehabilitation Medicine University of Texas MD Anderson Cancer Center Houston, Texas Kate Kravits, RN, MA, LPC, ATR-BC, HNB-BC Senior Research Specialist Division of Nursing Research Department of Population Sciences City of Hope National Medical Center Duarte, California Mary J. Labyak, MSW, LCSW President and Chief Executive Officer Suncoast Hospice Clearwater, Florida Philip J. Larkin, RN, RSCN, RHV, RNT, BSc(Hons), MSc, PhD Associate Professor Clinical Nursing [Palliative Care] School of Nursing, Midwifery & Health Systems University College Dublin Belfield, Dublin, Ireland Marcia Levetown, MD, FAAP HealthCare Communication Associates Houston, Texas

Pam Malloy, MN, RN, OCN, FPCN Project Director ELNEC Project American Association of Colleges of Nursing Washington, DC Marianne Matzo, PhD, GNP-BC, FPCN, FAAN Professor and Frances E. and A. Earl Ziegler Chair in Palliative Care Nursing Sooner Palliative Care Institute University of Oklahoma College of Nursing Adjunct Professor, Department of Geriatric Medicine Oklahoma City, Oklahoma Terri L. Maxwell, PhD, APRN, ACHPN Vice President of Clinical Initiatives Hospice Pharmacia, A Division of excelleRx, Inc., Philadelphia, Pennsylvania Polly Mazanec, PhD, ACNP-BC, AOCN Assistant Professor Frances Payne Bolton School of Nursing Case Western Reserve University & CNS, Ireland Cancer Center, University Hospitals Case Medical Center Cleveland, Ohio Jennifer McAdam, PhD, RN Assistant Professor Dominican University of California Department of Nursing San Rafael, California Mary S. McCabe, RN, BA, MA Director Survivorship Program Memorial Sloan-Kettering Cancer Center New York, New York Ruth McCorkle, PhD, FAAN Florence S. Wald Professor of Nursing and Director Center for Excellence in Chronic Illness Care Yale University School of Nursing New Haven, Connecticut

Contributors Glen Medellin, MD, FAAP Assistant Professor, Division of General Pediatrics Interim Greehey Distinguished Chair in Palliative Care for Children Clerkship Director, Department of Pediatrics University of Texas Health Science Center, San Antonio San Antonio, Texas

Sean O’Mahony, MBBCh, BAO Medical Director Palliative Care Service Montefiore Medical Center Assistant Professor Albert Einstein College of Medicine Bronx, New York

Kathleen Michael, PhD, RN, CRRN Assistant Professor University of Maryland Baltimore, Maryland

Shirley Otis-Green, MSW, LCSW, ACSW, OSW-C Senior Research Specialist Division of Nursing Research and Education City of Hope National Medical Center Duarte, California

Paula Milone-Nuzzo, PhD, RN, FAAN, FHHC Dean and Professor School of Nursing The Pennsylvania State University University Park, Pennsylvania Pamela A. Minarik, MS, APRN, BC, FAAN Professor of Nursing Professor, Office of International Affairs Yale University School of Nursing Psychiatric Consultation Liaison Clinical Nurse Specialist Yale-New Haven Hospital New Haven, Connecticut Betty D. Morgan, PhD, PMHCNS, BC Associate Professor, Department of Nursing School of Health and Environment University of Massachusetts Lowell Lowell, Massachusetts Faith N. Mwangi-Powell, Msc(Econ), PhD Executive Director African Palliative Care Association Kampala, Uganda, Africa Leslie Nield-Anderson, APRN, BC, PhD Private Practice Geropsychiatric Consultant Sunhill Medical Center Sun City Center, Florida Linda L. Oakes, MSN, RN, CCNS Pain Clinical Nurse Specialist St. Jude’s Children’s Research Hospital Memphis, Tennessee Margaret O’Connor, RN, DN, MN, B.Theol President, Palliative Care Australia Vivian Bullwinkel Chair in Palliative Care Nursing Palliative Care Research Team, Monash University Frankston, Victoria, Australia

Judith A. Paice, PhD, RN, FAAN Director, Cancer Pain Program Division of Hematology-Oncology Northwestern University Feinberg School of Medicine Chicago, Illinois Joan T. Panke, APRN, ACHPN Palliative Care Nurse Practioner Nurse Educator Capital Hospice Washington, DC Jeannie V. Pasacreta, PhD, APRN Director Integrated Mental Health Services LLC Newtown, Connecticut Steven D. Passik, PhD Associate Attending Psychologist Memorial Sloan-Kettering Cancer Center New York, New York Melany A. Piech Research Assistant State University of New York at Buffalo Holland, New York Richard A. Powell, BA, MA, MSc Monitoring, Evaluation and Research Manager African Palliative Care Association Kampala, Uganda, Africa Maryjo Prince-Paul, PhD, APRN, ACHPN Assistant Professor Frances Payne Bolton School of Nursing Case Western Reserve University Research Associate Hospice of the Western Reserve Cleveland, Ohio Kathleen Puntillo, RN, CNS, DNSc, FAAN Professor of Nursing and Research Scientist Department of Physiological Nursing University of California, San Francisco San Francisco, California

xxi

xxii

Contributors

Patrice Rancour, MS, RN, PMHCNS-BC Prospective Health Care Program Manager The Ohio State University Faculty/Staff Wellness Program Columbus, Ohio Jeanne Robison, RN, MN, ARNP Oncology Nurse Practitioner Rockwood Cancer Treatment Center Spokane, Washington Ora Rosengarten, MD Oncologist, Palliative Care Physician Department of Medical Oncology Shaare Zedek Medical Center Jerusalem, Israel Mayuko Sakae, MD Pediatrician University of Florida Pediatric Residency Programs Jacksonville, Florida Colleen Scanlon, RN, JD Senior Vice President, Advocacy Catholic Health Initiatives Denver, Colorado Susie Seaman, MSN, NP, CWOCN Nurse Practitioner Sharp Rees-Stealy Medical Group Wound Clinic San Diego, California Denice K. Sheehan, PhD, RN Assistant Professor College of Nursing Kent State University Kent, Ohio Deborah Witt Sherman, PhD, APRN, ANP, BC, ACHPN, FAAN Professor and Assistant Dean for Research Co-Director of the Center for Excellence in Palliative Care Research Senior Faculty for Palliative Care and Center for Excellence Baltimore, Maryland Terran Sims, RN, MSN, ACNP Nurse Practitioner Department of Urology Univeristy of Virginia Charlottesville, Virginia Jean K. Smith, RN, MS, OCN Lymphedema Clinical Nurse Specialist Centura Health Penrose Cancer Center Colorado Springs, Colorado Thomas J. Smith, MD, FACP Massey Endowed Professor for Palliative Care Research Medical Director, Thomas Palliative Care Unit Richmond, Virginia

Rose Steele, RN, PhD Professor School of Nursing Faculty of Health, York University Toronto, Ontario, Canada Lizabeth H. Sumner, RN, BSN Director The Center for Compassionate Care The Elizabeth Hospice Escondido, California Virginia Sun, PhD(c), RN Senior Research Specialist Division of Nursing Research and Education City of Hope National Medical Center Duarte, California Sayaka Takenouchi, RN, BSN, MPH PhD Student Kyoto University Graduate School of Medicine Department of Biomedical Ethics Osaka, Japan Keiko Tamura, RN, PhD, OCNS Nurse Manager/Certified Nurse Specialist in Cancer Nursing Yodogawa Christian Hospital Osaka, Japan Dana Tarcatu, MD Temporary Physician Pain and Palliative Care Service City of Hope National Medical Center Duarte, California Elizabeth Johnston Taylor, PhD, RN Associate Professor School of Nursing Loma Linda University Loma Linda, California Mary Potter Hospice Wellington, Aotearoa New Zealand Roma Tickoo, MD, MPH Pain and Palliative Care Physician Pain & Palliative Care Service Memorial Sloan-Kettering Cancer Center New York, New York Pamela R. Tryon, MS Nurse Practitioner Nursing Support, Medical Oncology City of Hope National Medical Center Duarte, California Mary L. S. Vachon, RN, PhD Psychotherapist and Consultant in Private Practice Professor Department of Psychiatry and Dalla Lana School of Public Health University of Toronto Toronto, Ontario, Canada

Contributors Rose Virani, RNC, MHA, OCN, FPCN Senior Research Specialist Nursing Research and Education City of Hope National Medical Center Duarte, California

Donna J. Wilson, RN, CNS Clinical Nurse Specialist/Fitness Coordinator Department of Integrative Medicine Memorial Sloan-Kettering Cancer Center New York, New York

Deborah L. Volker, PhD, RN, AOCN Associate Professor The University of Texas at Austin School of Nursing Austin, Texas

Sarah A. Wilson, PhD, RN Associate Professor Director, Institute for End-of-Life Education Marquette University College of Nursing Milwaukee, Wisconsin

Lynn Whitten, BN, MSA, CHPCN(c) Manager Palliative and Hospice Care Service Alberta Health Services, Calgary Health Region Calgary, Alberta, Canada

Robert Zalenski, MD, MA Professor of Emergency Medicine Wayne State University School of Medicine Director of Research Maggie Allesee Center for Quality of Life Hospice of Michigan Detroit, Michigan

Dorothy Wholihan, MSN, ANP-BC, AHPCN Program Coordinator Adult Primary Care/Palliative Care Nurse Practitioner Program New York University College of Nursing New York, New York

xxiii


I General Principles

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1o]

Nessa Coyle

Introduction to Palliative Nursing Care My life’s work is done but I am not able to die. How can the day-to-day time I have left be given a sense of meaning? The hardest thing is living without a goal, a new way of being—just being. That’s the hardest thing. I know that I’m going to die at some point but I don’t want it to be a painful and undignified death. This is the most important time in my life and yet I feel disconnected from it. It’s hard to talk to my family about how I feel—they don’t understand. —Palliative care patient

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Key Points Palliative nursing reflects “whole person” care. Palliative nursing combines a scientific approach with a humanistic approach to care. The caring process is facilitated through a combination of science, presence, openness, compassion, mindful attention to detail, and teamwork. The patient and family are the unit of care.

The goal of palliative nursing is to promote quality of life across the illness trajectory through the relief of suffering, including care of the dying and bereavement follow-up. As reflected by the words of the patient quoted, illness both affects and is affected by all aspects of the individual’s being. The potential for healing in the face of progressive disease is a potential rooted in the special relationship between the healer and sufferer.1 The genuine, warm and compassionate relationship of a palliative care or hospice nurse with his or her patient is frequently a healing relationship. The nurse gives attention to the physical, psychological, social, spiritual, and existential aspects of the patient and family—whole person care. Palliative nursing care is a combination of state-of-theart clinical competence with fidelity to the patient, the ability to listen and to remain present in the face of much suffering and distress, and communication at a deeply personal level with the patient and family. Palliative care nursing involves having a genuine interest in the person as an individual, and the ability to convey hope even in the face of death. What appears in the abstract to be a daunting task is practiced every day throughout the world by skilled and compassionate palliative care nurses. Specialized education and training, as well as mentoring by seasoned palliative care nurses, is recognized as a needed foundation for palliative care and hospice nursing. Without such training, nurses will inevitably find themselves in situations where they are unable to provide the necessary symptom control and amelioration of suffering for those living with advanced progressive disease and those near death. “I failed to care for him properly because I was ignorant”— these are haunting thoughts, sometimes expressed in words, other times borne silently, by the nurse. This experience is as true today as it was several decades earlier. Nurses cannot practice what they do not know, so patient and family needs are not met. However, when under the care of a skilled palliative care nurse, patients and their families struggling to live in the face of progressive, symptomatic, and debilitating disease 3

4

General Principles

can be well cared for and supported throughout this process— and find meaning and peace even in the face of death. This is the essence of skilled palliative nursing care—to facilitate the “caring” process through a combination of science, presence, openness, compassion, mindful attention to detail, and teamwork. It remains true, however, that although we have both the knowledge and the art to control the majority of symptoms that occur during the last months, weeks, and days of life, we still have much to learn about how to alleviate the psychological and spiritual distress that comes with life-threatening illness.2 Listening to the experts—our patients and their families—will help us obtain this necessary knowledge. Advanced-practice palliative care nurses have pioneered models of palliative nursing care in many different settings in the United States, as well as elsewhere around the world. For example, a former critical care nurse may now provide palliative care at an urban/trauma emergency center. Her focus is on patients who are not expected to survive their hospital stay, many of whom are respirator dependent. She may not work as part of a standing palliative care team, but has access to the multiple disciplines within the institution whom she can call on as needed. Another nurse practices at an urban acute care teaching hospital as part of a palliative care team. The patients he works with may not be actively dying, but are in need of symptom management, psychosocial support, grief and bereavement counseling, discharge planning, and/ or long-term care planning. Continuity of care is emphasized, as well as education of nursing and medical staff. A third nurse practices at a large inner-city hospital serving a disadvantaged urban population. She heads the interdisciplinary End-of-Life Consultation Service and sees patients and their families concerning pain, grief and ethical questions. In contrast, a nurse with expertise in both geriatrics and palliative care works at a university-affiliated geriatric practice. Generally, the patients she serves have advanced chronic illness such as end-stage heart and lung disease, dementia or cancer. Many of these patients are at risk for “falling through the cracks,” as their prognosis and trajectory of dying may be uncertain and they do not fit into established categories for provision of home care. A fift h example is a nurse practitioner who works in a rural primary care practice with an emphasis on palliative care. He focuses on integrating palliative care into traditional health services for an underserved, sparsely populated rural community. As in the case of many senior palliative care nurses, this nurse practitioner mentors graduate and undergraduate students. A last example of this diversity in practice settings is a clinical specialist who practices at a long-term care facility—a setting where palliative care needs of patients have only recently begun to receive due attention. This nurse’s focus is to integrate palliative care into the normal flow of clinical care at the nursing home. The role of the Advanced-Practice Palliative Care Nurse is addressed in detail in Chapter 60. Other examples of advanced-practice palliative care nursing are illustrated throughout the text, including Part ΙX—International Models of Palliative Care reflecting various stages of development.

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Shifting the Paradigm of End-of-Life Care to Palliative Care Advances in health care have changed the trajectory of dying. Improved nutrition and sanitation, preventive medicine, widespread vaccination use, the development of broadspectrum antibiotics, and an emphasis on early detection and treatment of disease have resulted in fewer deaths in infancy and childhood, and fewer deaths from acute illness. The combination of a healthier population in many developed countries and effective treatments for disease has resulted in the ability to prolong life. This has led to both benefits and challenges for society. For example, in the United States, more than 70 of those who die each year are 65 years of age or older. The majority of these deaths, however, occur after a long, progressively debilitating chronic illness, such as cancer, cardiac disease, renal disease, lung disease, or acquired immunodeficiency syndrome (AIDS).3,4 It is also now recognized that the palliative-care needs and end-of-life needs of children have long been ignored.5 The field of palliative care nursing has expanded in response to these challenges. It has built on the long tradition of hospice care and the models of excellent nursing care within hospice.

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The Relationship of Hospice Care to Palliative Care in the United States of America The hospice model of care was developed to address the specific needs of the dying and of their families, so long neglected by the medical system of care. The modern hospice movement started in England in 1967, through the work of Dame Cicely Saunders (who was trained as a nurse, a social worker and a physician) and colleagues at St. Christopher Hospice in London. The hospice movement came to the United States in the mid-1970s, when Dr. Florence Wald, a nursing pioneer, led an interdisciplinary team to create the first American hospice.6 Hospice care became a Medicare benefit in the 1980s. Patients traditionally followed in hospice programs could no longer receive life-prolonging therapy, and it was required that they be certified by a physician as having a life expectancy of 6 months or less. This presented a problem for patients living with a chronic debilitating disease, whose life expectancy was unclear or was greater than 6 months, or who, for a variety of reasons, did not want to be “identified” as a hospice patient. The palliative care and family-centered care provided through hospice programs was needed, but the rationing of hospice programs (based on prognosis) and the requirement of denying life-prolonging therapies were barriers that deprived many individuals of the benefit of such care. The palliative care model evolved from the traditional hospice perspective to address quality-of-life concerns for those patients living for prolonged periods with a progressive,

Introduction to Palliative Nursing Care debilitating disease. It recognized the change in the trajectory of dying in many industrial countries, from that of a relatively short illness leading to death, to one involving a progressive and prolonged debilitating illness frequently associated with multiple factors affecting the quality of life. It recognized that such factors required skilled and compassionate palliative care interventions, regardless of prognosis, life-prolonging therapy, or closeness to death. In looking at the relationship between hospice and palliative care, perhaps hospice can best be described as a program through which palliative care is intensified as an individual moves closer to death. Ideally, patients and families living with a chronic, debilitating and progressive disease receive palliative care throughout the course of their disease and its treatment. As they come closer to death, they are able to transition seamlessly and without added distress into a hospice program of care. The “Open Access” hospice approach—a blended model between curative and palliative care—is a recent development with the goal of mainstreaming hospice care into the current system of care. The goal of open access is to deliver hospice care concurrently with the patient’s other treatments, allowing state-of-the-art end-of-life care for a much longer period. The hope was that patients would access hospice earlier and would have the space and support to come to terms with their ambivalence about dying.7 Eligibility for hospice services would be determined solely by the regulatory requirements. However, open access programs remain the exception because of cost. According to the Centers for Medicare and Medicaid Services (CMS), only 2.5 of the country’s over 4,000 hospices have an average daily census above 400—the commonly considered minimum requirement for open access programs.7 With a large average daily census of patients, the hospice program is able to balance the cost of patients opting to continue with expensive palliative therapies, with those who prefer to have comfort measures alone.

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World Health Organization Definition of Palliative Care In recognition of the changing trajectory of dying and the implications for palliative care, the World Health Organization (WHO) modified its 1982 definition of palliative care to the following: “Palliative care is an approach to care which improves quality of life of patients and their families facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychological and spiritual problems.”8 The new WHO definition broadens the scope of palliative care beyond end-of-life care and suggests that such an approach can be integrated with life-prolonging therapy and should be enhanced as death draws near. In a similar vein, the National Comprehensive Cancer Network (NCCN) developed guidelines to facilitate the “appropriate integration of

5

palliative care into anticancer therapy.”9 The focus of all these efforts is to change the standard practice of palliative care (identified as “too little, too late”)—in which there is a distinct separation between diagnosis, treatment, and end-of-life care—to a vision of the future in which there is “front-loading” of palliative care.10 This means, for example, that at the time of the cancer diagnosis and initiation of treatment, the patient would also have access to psychological counseling, nutrition services, pain management, fatigue management, and cancer rehabilitation.10 Such a model is appropriate for other chronic diseases as well. MediCaring, a national demonstration project spearheaded by the Center to Improve Care of the Dying, is an example of an attempt to integrate palliative care into medical and disease management for seriously ill cardiac and pulmonary-disease patients who have a life expectancy between 2 to 3 years. The intent is to make this program a Medicare benefit, as is the case with hospice care.11

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The Distinctive Features of Palliative Care Nursing With this as a background, it is important to define the field of palliative care nursing and to recognize how it differs in essence from other areas of nursing care. In this way, nurses can be educated and trained appropriately, and the special nature of such education and training can be recognized. Palliative care nursing reflects a “whole-person” philosophy of care implemented across the lifespan and across diverse health care settings. The patient and family are the unit of care. The goal of palliative nursing is to promote quality of life along the illness trajectory through the relief of suffering, and this includes care of the dying and bereavement follow-up for the family and significant others in the patient’s life. Relieving suffering and enhancing quality of life include the following: providing effective pain and symptom management; addressing psychosocial and spiritual needs of the patient and family; incorporating cultural values and attitudes into the plan of care; supporting those who are experiencing loss, grief, and bereavement; promoting ethical and legal decision-making; advocating for personal wishes and preferences; using therapeutic communication skills; and facilitating collaborative practice. In addition, in palliative nursing, the “individual” is recognized as a very important part of the healing relationship. The nurse’s individual relationship with the patient and family is seen as crucial. This relationship, together with knowledge and skills, is the essence of palliative care nursing and sets it apart from other areas of nursing practice. However, palliative care as a therapeutic approach is appropriate for all nurses to practice. It is an integral part of many nurses’ daily practice, as is clearly demonstrated in work with the elderly, the neurologically impaired, and infants in the neonatal intensive care unit. The palliative care nurse frequently cares for patients experiencing major stressors, whether physical, psychological,

6

General Principles

social, spiritual, or existential.12,13 Many of these patients recognize themselves as dying and struggle with this role. To be dying and to care for someone who is dying are two sides of a complex social phenomenon. There are roles and obligations for each person.12,14 To be labeled as “dying” affects how others behave toward an individual and how the individual behaves toward self and others.12,14 The person is dying, is “becoming dead” (personal communication, Eric Cassell, January 1, 2000), with all that implies at both an individual and a social level. A feeling of failure and futility may pervade the relationship between the patient and a nurse or physician not educated or trained in hospice or palliative care. They may become disengaged, and the potential for growth on the part of both patient and clinician may be lost—“I failed to care for him properly because I was ignorant . . . the memory haunts me.”

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The Palliative Care Nurse and the Interdisciplinary Palliative Care Team: Collaborative Practice The composition of teams providing palliative care varies tremendously, depending on the needs of the patients and the resources available. The one common denominator is the presence of a nurse and a physician on the team. Regardless of the specific type of palliative care team, it is the nurse who serves as a primary liaison between the team, patient, and family, and who brings the team plan to the bedside, whether that is in the home, the clinic, or the inpatient setting. Because of the close proximity of the nurse to the patient and family through day-to-day observation and care, there is often a shift in the balance of decision-making at the end of life from physician to nurse. However, continued involvement of the physician in palliative care should still be fostered and encouraged; it is a myth that the physician need be less involved as the goal of care shifts from cure to comfort. Not uncommonly, a physician oriented toward life-prolonging therapies, who has provided care for a given patient over a number of years, may feel lost, helpless, overwhelmed, and uncertain of his or her role in the care of the dying. Yet, the patient and family may feel very close to that physician and have a great need for him or her at this time. Fear of abandonment by the patient, and the physician’s desire to “do everything” rather than abandon the patient, may result in inappropriate and harmful treatments being offered and accepted. A nurse who is educated and trained in palliative care and end-of-life care can do much to guide and support the physician during this transition, and to redirect or reframe the interventions from “doing everything” toward “doing everything to provide comfort and healing.” There may be other reasons why patients want to continue aggressive, life-prolonging interventions in the face of impending death. Understanding why patients sometimes seek aggressive medical care and life-prolonging measures is an integral part of the role of the nurse on the palliative care team. This is illustrated in the following case example:

o] CASE STUDY Mr. Stevens, a Patient with Lung Cancer Mr. Stevens, a 30-year-old man with far-advanced, non-small cell lung cancer and rapidly failing pulmonary status, wanted every measure to be taken to maintain his life, including experimental chemotherapy and ventilator support if needed. He had a 9-month-old daughter and a wonderful and caring wife and extended family. Whatever he wanted was what they wanted. As Mr. Stevens’ respiratory status continued to deteriorate, the nurses who were involved in his care felt that by respecting his wishes in providing what they considered “futile care,”they were doing harm. After discussion with the patient’s attending physician, a palliative care consult was initiated with the purpose of addressing goals of care and the benefits and burdens of ongoing experimental chemotherapy. Code status also needed to be addressed. An experienced palliative care nurse met with the patient and his wife and the following story unfolded. Mr. Stevens had emigrated from Russia to the United States as a child. He had overcome a difficult childhood, and had finally achieved what he wanted: a family of his own and a job that allowed him to care for them. He had overcome seemingly insurmountable odds in the past, and found it impossible to accept that his life was coming to an end—a life that was only just beginning. It was too painful for him. After many sessions in which the palliative care nurse bore witness to his grief at losing all that he loved, as well as the grief of his wife, Mr. Stevens gradually came to terms with the powerful legacy that he was leaving behind. He recognized that his life, however short, had made a difference, that he would not be forgotten, and that he had a loving wife, a child, and a legacy of courage, love and achievement. When the “silence” of his pending death was broken, friends and family were able to share with him how he had influenced their lives and what he meant to them. Although Mr. Stevens decided to continue in chemotherapy for several more weeks, when the burden became too great for him he was able to say “enough is enough,” that he had fought the disease as long as he could and now was the time to rest and be at peace. He had done what he could. Mr. Stevens died at home, and though never quite accepting hospice support, received excellent palliative and supportive care in a manner that was acceptable to him. o] Although other members of the interdisciplinary team, including the chaplain and social worker, were involved with this patient and family’s care, and in family and staff “debriefing” and bereavement follow-up sessions, the palliative care nurse played a central coordinating and mentoring role in meeting the needs of the patient, family, physician, and nursing staff. However, clearly no single discipline can meet all the needs of most patients and their families; an interdisciplinary team greatly enhances such care.15

Introduction to Palliative Nursing Care How little is known about patients, their families, and their aspirations, is illustrated in this case.16 What seems to be an irrational choice to health care providers may be eminently sensible to the patient and family. The frequent struggle and suffering of nurses and physicians as they grapple with their own mortality and with being asked to provide care they think is inappropriate or harmful for dying patients is also demonstrated.17 Assessment and communication skills, as well as a firm foundation in the ethical principles of palliative care and end-of-life care when treating such patients, are clearly important.

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End-of-Life Care in the United States Today: Improving But Still a Long Way To Go The inadequacy of care for the dying, who are among the most voiceless and vulnerable in our society, came into national focus during the debates over the past two decades surrounding physician-assisted suicide and euthanasia. The national dialogue was fueled by: the actions of Dr. Jack Kevorkian and his suicide machine; the rulings of two United States Appeals Courts on the right to die18,19; findings from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)20; interviews with family caretakers21; a review of end-of-life content in nursing and medical texts22,23—which reflected minimal to no such content—and the Institute of Medicine’s reports on end-of-life care, with its series of recommendations to address deficiencies in care of the chronically ill and dying, both children and adults.3,5 Means to a Better End, a report card generated by Last Acts (a Robert Wood Johnson-funded coalition created with almost 1,000 national partner organizations dedicated to end-of-life reform), was the first attempt at a comprehensive report on the state of end-of-life care in the United States.24 Between August 30 and September 1, 2002, slightly more than 1,000 Americans were surveyed by telephone and asked their opinions regarding the quality of health care at the end of life. Three quarters of those surveyed had suffered the loss of a family member or close friend in the last 5 years. Each of the 50 states and the District of Columbia were represented in the survey and were rated on eight criteria: state advance directive policies, location of death, hospice use, hospital end-of-life care services, care in intensive care units at the end of life, pain among nursing home residents, state pain policies, and the presence of palliative care-certified nurses and doctors. The findings suggested that, “despite many recent improvements in end-of-life care and greater public awareness about it, Americans had no better than a fair chance of finding good care for their loved ones or for themselves when facing a life-threatening illness.” For example, nationally only 25 of deaths occur at home, although 70 of Americans say that they would prefer to die at home; about half of all deaths occur in hospitals, but fewer than 60 of the hospitals

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in any given state offer specialized end-of-life services; and most states have only “fair” hospice use.24 In 2007, there were approximately 4,700 hospice programs in the United States, caring for over 1.4 million patients and their families, indicating that about 38.8 of all deaths in America are under hospice care. Of these patients, approximately 50 had a cancer diagnosis, 12 had end-stage cardiac disease, 10 had dementia, 3 had end-stage kidney disease, and 2 had endstage liver disease.25 Although the 2002 state report card measures were very disturbing, activities at the federal, state, and community levels continue to work toward improving access to skilled palliative care and end-of-life care.25 Some broad examples of these initiatives by professional organizations supported through philanthropic funding include the following: • Promoting Excellence in End-of-Life Care, a program of the Robert Wood Johnson Foundation that provides grants and technical support to innovative programs throughout the United States to improve care of the dying.26 • The End-of-Life Nursing Education Consortium (ELNEC), a national and international education program to improve end-of-life care.27 • The Education on Palliative and End-of-Life Care (EPEC) project, a national program for physicians to improve end-of-life care.28 • The pain standards supported by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO), which hold institutions accountable for assessment and management of pain among the patients in their care.29 In addition, philanthropically supported programs to improve care of the dying have been developed at a community level to meet the needs of specific populations (e.g., the Missoula Demonstration Project30) or underserved communities (e.g., the Harlem Palliative Care Network31). Unfortunately, many such philanthropically supported programs are unable to self sustain once the financial support comes to an end. There are also a growing number of palliative care programs being developed within institutions and long-term care facilities, as well as end-of-life pathways and critical care pathways for the dying.32 Home hospice programs that offer palliative care consultation services to the broader patient population are a recent innovation that may improve access to palliative care in non-hospice patients. Board certification in palliative nursing and palliative medicine are also important milestones in recognizing the specific body of knowledge and expertise necessary to practice with competence in this specialty. Many professional, state, and community initiatives address the barriers identified by the National Cancer Policy Board that keep individuals with progressive cancer from receiving excellent palliative care.33 These barriers include • The separation of palliative and hospice care from potentially life-prolonging treatment within the health

8

General Principles

• • •

• • •

care system, which is both influenced by and affects reimbursement policy. Inadequate training of health care personnel in symptom management and other end-of-life skills. Inadequate standards of care and lack of accountability in caring for dying patients. Disparities in care, when available, for African Americans and other ethnic and socioeconomic segments of the population. Lack of information and resources for the public dealing with end-of-life care. Lack of reliable data on the quality of life for patients dying of cancer (as well as other chronic diseases). Low public sector investment in palliative care and end-of-life care research and training.

The National Institute of Medicine Report on improving care at the end of life3 suggested that people should be able to achieve a “decent” or “good” death—“one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural and ethical standards” (p. 24). The report and recommendations focused on the interdisciplinary nature of palliative care, of which nursing is the core discipline. Traditionally, nursing has been at the forefront in the care of patients with chronic and advanced disease, and recent advances in symptom management, combined with the growing awareness of palliative care as a public health issue, have provided the impetus for bringing together this compendium of nursing knowledge. The general public and the health care community, of which nurses are the largest group, have been confronted with facts about care for the dying and with the task of determining how to achieve quality of life even at the end of life.34,35 In December 2001, a consortium of five national palliative care organizations came together in New York because of the identified need to: expand access to palliative care for patients and families; to increase the number of reliable, high-quality programs; and to ensure quality.34 Participants from these organizations were nominated by their peers, with palliative care nursing leadership well represented by Connie Dahlin, Betty Ferrell, Judy Lentz, and Deborah Sherman.

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array of professionals, providers, and consumers involved in and affected by palliative care; (2) to create voluntary clinical practice guidelines for palliative care that describe the highest quality services to patients and families; (3) to broadly disseminate the clinical practice guidelines to enable existing and future programs to define better their program organization, resource requirements, and performance measures; (4) to help clinicians provide the key elements of palliative care in the absence of palliative care programs; and (5) to promote recognition, stable reimbursement structure, and accreditation initiatives.34 The clinical practice guidelines cover in detail eight domains identified as being crucial to the delivery of comprehensive palliative care: the structure and process of care; the physical domain; the psychological and psychiatric domain; the social domain; the spiritual, religious, and existential domain; the cultural domain; the imminently dying patient; and ethics and the law. The guidelines were released in April 2004, and a revised version released in March 2009. These guidelines are outlined in Appendix 1–1. Progress is being made and palliative care nurses have been involved each step of the way. There are a growing number of palliative care programs being developed within institutions and long-term care facilities. Some hospice programs offer palliative care consultation services to the broader patient population—a fairly recent innovation that may improve access to palliative care for non-hospice patients. Board certification in palliative nursing at both the generalist and advanced-practice levels are also important milestones in recognition of the specific body of knowledge and expertise necessary to practice with competence in this area. In addition, as mentioned earlier, there has been a steady growth in hospice programs over the past decade. In 2007, there were over 4,700 hospice providers in the United States, with hospice reaching 38.8 of all deaths. Hospice nurses would have been intimately involved in the care of each of these patients and their families. The number of patients served has increased to over 1.4 million and more patients followed by hospice are dying in the place they call “home.” Th is includes a private residence, nursing home or residential facility.25 The number of palliative care programs in hospitals has also increased significantly over the past 5 years. In 2006, 30 of hospitals had a palliative care program, up from 15 in the year 2,000. In addition, 64.4 of hospices report provision of palliative care outside of their hospice program.25

The National Consensus Project for Quality Palliative Care o] The National Consensus Project consisted of four key national palliative care organizations: American Academy of Hospice and Palliative Medicine; Center to Advance Palliative Care; Hospice and Palliative Nurses Association; and the National Hospice and Palliative Care Organization. The consensus project had five goals: (1) to build national consensus concerning the definition, philosophy, and principles of palliative care through an open and inclusive process that includes the

The Scope and Aims of the Third Edition of the Textbook of Palliative Nursing Reflect State-of-the-Art Palliative Nursing Care Palliative nursing is a world of many connections. To see the world of the individual, a multidimensional, multi-lens perspective is needed. Often, this complexity is best conveyed through simple stories.36,37 This duality of complexity

Introduction to Palliative Nursing Care and simplicity is incorporated into the structure of the current and expanded third edition of the Oxford Textbook of Palliative Nursing. Each chapter is introduced by a quotation from a patient or family member to illustrate the content of the chapter. Key Points are included as a quick reference and also as an overview of the chapter content. In addition, brief case examples are used to anchor the theoretical and practical content of the chapter in real-life situations. The textbook, which includes an international perspective, is intended as a comprehensive resource for nurses in the emerging field of palliative care. The approach has been to incorporate the principles of palliative care nursing throughout the course of a chronic, progressive, incurable disease rather than only at the end of life. The scope is broad. The content, contributed by more than 100 national and international nursing experts and divided into 78 chapters in ten parts, covers the world of palliative care nursing. Part I provides a general introduction to palliative nursing care and includes an in-depth discussion of hospice care as a model for quality end-of-life care, the principles of family assessment, and the principles of communication in palliative care. Part II moves into the critical area of symptom assessment and management. Each of the 28 chapters in this section addresses the assessment and pathophysiology of the symptoms, pharmacologic interventions, non-drug treatments, and patient/family teaching within the goals of palliative care. Based on suggestions from readers of the previous edition of the textbook, two additional chapters have been added to this section: Insomnia and Withdrawal of Life Sustaining Treatment. Part III addresses psychosocial support in palliative care and at the end of life. Here the focus is on the meaning of hope at the end of life, bereavement, family support, and planning for the death and death rituals. Spiritual care and meaning in illness are addressed in Part IV. The impact of spiritual distress on quality of life at the end of life has become increasingly clear, and the ability of the nurse to recognize such distress in patients and their families, and to make appropriate interventions and referrals, is an essential component of palliative care. Much remains to be learned in this area. In Part V, the needs of special populations and cultural considerations in palliative care are addressed. Included here are the elderly, the poor and underserved, individuals with AIDS, and care for the drug-addicted patient at the end of life. Additional chapters have been added to this section, including Caring for those with Chronic Illness, Palliative Care in Psychiatric Illness, and Cancer Survivorship. Part VI focuses on improving the quality of end-of-life care across settings. After a practical overview on monitoring quality and development of pathways and standards in end-of-life care, subsequent chapters discuss long-term care, home care, hospital care, intensive care, rehabilitation, and care in the outpatient or office setting. Part VII remains entirely devoted to pediatric palliative care across care settings. Part VIII moves into special issues for nurses in end-of-life care that include ethics, public policy, requests for assistance in dying, nursing education, and

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nursing research. Two additional chapters have been added to this section: The Advanced Practice Nurse, and Teamwork in Palliative Care. Part IX explores international models of palliative care reflecting various stages of national development. Four new chapters have been added representing palliative care in Canada, Africa, Japan, and Korea. Part X gives voice to the patient and family, exploring the concept of “a good death” through a detailed case discussion. The appendix provides a very comprehensive and useful list of community and professional resources. The purpose of the Oxford Textbook of Palliative Nursing is to organize and disseminate the existing knowledge of experts in palliative care nursing and to provide a scientific underpinning for practice. The focus is on assessment and management of the wide range of physical, psychosocial, and spiritual needs of patients, their families, and staff in palliative care across clinical settings. Topics frequently cited as challenges in nursing care at the end of life—including palliative sedation, communication, ethics, research, and providing care for the underserved and homeless—are specifically addressed. As illustrated throughout, the world of palliative care nursing is complex, scientifically based, and immensely rewarding.

REFERENCES 1. Kearney M. Mount B. Spiritual care of the dying patient. In: Chochinov HM, Breitbart W, eds. Handbook of Psychiatry in Palliative Medicine. Oxford: Oxford University Press, 2000:357–373. 2. Kuhl D. What Dying People Want: Practical Wisdom for the End of Life. New York: Public Affairs, 2002. 3. Field M, Cassel C. Approaching Death: Improving Care at the End of Life. Committee on Care at the End of Life, Institute of Medicine. Washington, DC: National Academy Press, 1997. 4. Corr C. Death in modern society. In: Doyle D, Hanks WC, MacDonald N, eds. Oxford Textbook of Palliative Medicine, 2nd ed. Oxford: Oxford University Press, 1998:31–40. 5. Institute of Medicine. When Children Die: Improving Palliative and End-of-life Care for Children and their Families. Washington, DC: National Academy Press, 2003. 6. Wald FS. Hospice care in the United States: A conversation with Florence S. Wald. JAMA 1999;281:1683–1685. 7. Wright AA, Katz IT. Letting go of the ropes—aggressive treatment, hospice care, and open access. N Eng J Med 2007; 357:324–327. 8. World Health Organization. Palliative care. Available at: http://www.who.int/cancer/palliative/defi nition/en (accessed November 16, 2008). 9. National Comprehensive Cancer Network (NCCN). Practice guidelines in oncology: Palliative care, version 1.2004. Available at: http://www.nccn.org (accessed October 12, 2008). 10. Oncology Roundtable. Culture of Compassion: Best Practices in Supportive Oncology. Washington, DC: The Advisory Board Company, 2001:98–99. 11. Washington Home Center for Palliative Care Studies (CPCS). MediCaring. Available at: http://www.medicaring.org (accessed December 1, 2008).

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12. Cassell EJ. Diagnosing suffering: A perspective. Ann Intern Med 1999;131:531–534. 13. Aries P. Western attitudes towards death: From the Middle Ages to the present. Baltimore, Md.: Johns Hopkins University Press, 1974. 14. Cherny N, Coyle N, Foley KM. Suffering in the advanced cancer patient. Part I: A defi nition and taxonomy. J Palliat Care 1994; 10:57–70. 15. Ingham J, Coyle N. Teamwork in end-of-life care: A nurse– physician perspective on introducing physicians to palliative care concepts. In: Clark D, Hockley J, Ahmedzai S. New Themes in Palliative Care. Buckingham: Open University Press, 1997:255–274. 16. Coyle N. Suffering in the first person. In: Ferrell BF, ed. Suffering. Boston: Jones and Bartlett, 1996:29–64. 17. Ferrell BF, Coyle N. The Nature of Suffering and the Goals of Nursing. Oxford: Oxford University Press, 2008 18. United States Court of Appeals for the Ninth Circuit. Compassion in Dying v. State of Washington. Fed Report. 1996 Mar 6 (date of decision);79:790–859. 19. United States Court of Appeals for the Second Circuit. Quill v. Vacco. Fed Report. 1996 Apr 2 (date of decision);80:716–743. 20. SUPPORT Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA 1995;274:1591–1598. 21. Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J, Claessens MT, Wenger N, Kreling B, Connors AF Jr. for SUPPORT investigators. Perceptions by family members of the dying experience of older and seriously ill patients. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Ann Intern Med 1997;126:97–106. 22. Ferrell BR, Virani R, Grant M, Juarez G. Analysis of palliative care content in nursing textbooks. J Palliat Care 2000;16:39–47. 23. Rabow MW, Hardie GE, Fair JM, McPhee SJ. End-of-life care content in 50 textbooks from multiple specialties. JAMA 2000; 283:771–778. 24. Last Acts. Means to a better end: A report card on dying in America today. November 2002. Available at: http://www.rwjf. org/fi les/publications/other/meansbetterend.pdf (accessed November 16, 2009). 25. National Hospice and Palliative Care Organization. NHPCO facts and figures. Available at: http://www.nhpco.org/fi les/ public/statistics_Research/NHPCO_facts_and_figures.pdf (accessed November 16, 2009). 26. Promoting Excellence in End-of-Life Care website. Available at: http://www.promotingexcellence.org (accessed December 12, 2008). 27. American Association of Colleges of Nurses. End-of-Life Nursing Education Consortium (ELNEC) website. Available at: http://www.aacn.nche.edu/ELNEC/ (accessed December 11, 2008). 28. The Education on Palliative and End-of-Life Care (EPEC) project website. Available at: http://www.epec.net (accessed December 8, 2008). 29. Joint Commission on Accreditation of Healthcare Organizations and National Pharmaceutical Council, Inc. Improving the quality of pain management through measurement and action. Available at: http://www.reliefinsite.com/downloads/ Improving_the_Quality_of_Pain_Mgmt_Thru_Measurement_ and_Action_JCAHO.pdf (accessed November 16, 2009).

30. Life’s End Institute. Missoula demonstration project. Available at: http://www.missoulademonstration.org (accessed December 8, 2008). 31. Payne R, Payne TR. The Harlem Palliative Care Network. J Palliat Med 2002;5:781–792. 32. Coyle N, Schacter S, Carver AC. Terminal care and bereavement. Neurol Clin 2001;19:1005–1025. 33. Institute of Medicine and National Research Council. Improving Palliative Care for Cancer: Summary and Recommendations. Washington, DC: National Academy Press, 2001:5. 34. National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care. 2004. Available at: http://www.nationalconsensusproject.org (accessed December 8, 2008). 35. National Quality Forum. National framework and preferred practices for palliative and hospice care. 2006. Available at: http:// www.qualityforum.org/Projects/n-r/Palliative_and_Hospice_ Care_Framework/Palliative_Hospice_Care_Framework_ and_Practices.aspx (accessed November 16, 2009). 36. Steeves RH. Loss, grief and the search for meaning. Oncol Nurs Forum 1996;23:897–903. 37. Ferrell BR. The quality of lives: 1525 voices of cancer. Oncol Nurs Forum 1996;23:907–915.

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APPENDIX 1–1 Summary of the National Consensus Project Clinical Practice Guidelines Domain 1: Structure and Practice of Care • Care starts with a comprehensive interdisciplinary assessment of the patient and family. • Addresses both identified and expressed needs of the patient and family. • Education and training available. • Team is commitment to quality improvement. • Emotional impact of work on team members is addressed. • Team has a relationship with hospice. Domain 2: Physical • Pain, other symptoms, and treatment side effects are managed using best practice. • Team documents and communicates treatment alternatives, permitting patient/family to make informed choices. • Family is educated and supported to provide safe/ appropriate comfort measures to the patient. Domain 3: Psychological and Psychiatric • Psychological and psychiatric issues are assessed and managed based on best available evidence. • Team employs pharmacologic, non pharmacologic and Complementary and Alternative Medicine (CAM) as appropriate. • Grief and bereavement program is available to patients and families.

Introduction to Palliative Nursing Care Domain 4: Social • Assessment includes family structure, relationships, medical decision-making, finances, sexuality, caregiver availability, access to medications and equipment. • Individualized comprehensive care plans lessens caregiver burden and promotes well-being. Domain 5: Spiritual, Religious, and Existential • Assesses and addresses spiritual concerns. • Recognizes and respects religious beliefs—provides religious support. • Makes connections with community and spiritual religious groups or individuals as desired by patient/ family. Domain 6: Cultural • Assesses and aims to meet cultural-specific needs of patients and families. • Respects and accommodates range of language, dietary, habitual, and religious practices of patients and families.

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• Team has access to/uses translation resources. • Recruitment and hiring practices reflect cultural diversity and community. Domain 7: The Imminently Dying Patient • Team recognizes imminence of death and provides appropriate care to the patient and family. • As patient declines, team introduces hospice referral option. • Team educates the family on signs/symptoms of approaching death in a developmentally, age, and culturally appropriate manner. Domain 8: Ethics and Law • Patient’s goals, preferences, and choices are respected and form basis for plan of care. • Team is knowledgeable about relevant federal and state statutes and regulations. (Source: National Consensus Project, reference 34.)


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Kathleen A. Egan City and Mary J. Labyak

Hospice Palliative Care for the 21st Century: A Model for Quality End-of-Life Care My dad and I would like to thank hospice for the support, help, information, guidance, love and compassion they provided during the entire time my mom was in hospice care. They were so knowledgeable and everyone worked so quickly and efficiently that they became instant and trusted friends. Somehow they knew just when to explain what was going on and what to expect with each phase of her illness. We would have been heartbroken if we weren’t able to keep her at home. With the support of hospice, we learned how to keep her comfortable, how to decrease her anxiety, and even how to find moments of laughter and joy as we grew closer remembering our lives together. Ultimately, hospice gave us confidence and peace of mind that our mother and wife was finally receiving the type of care she needed to peacefully and comfortably find the path to the next stage of her existence. A heartfelt thanks to everyone at hospice.—Adult daughter of a hospice patient.

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Key Points Nurses must understand and honor each patient’s and family’s unique experiences near life’s end, addressing the physical, emotional, and spiritual dimensions of the experience through holistic care guided by what is most important to the patient and family at this time in their lives. Hospice blends compassion and strategic skilled services to support patients and families through life-limiting illnessess so they may find meaning and purpose, optimizes dignity and comfort at life’s completion, enhance meaningful closure of relationships for the patient and family. Hospice care models are expanding to serve people across the lifespan and across care settings with a variety of services that are helpful from the time of diagnosis of a life-limiting condition through bereavement. including preventive approaches found in public health models. By understanding the impact of illness on people’s lives and their hopes, dreams, and relationships, nurses gain more insights into the value of hospice and how to introduce it to patients and families in a supportive way. Nurses working with the dying and bereaved can experience cumulative loss, and can balance that with experiences of great meaning and purpose in their work.

To provide care and services that optimally support patients and families in the last years of life, one must first understand the experiences of illness and their impact on the patient and family. The experiences of illness, caregiving, dying and bereavement are more than physical events focused on disease and symptom management. The specialty of hospice palliative care nursing provides this broader perspective, with an understanding that illness and dying include suffering beyond the physical aspects for both the person who is ill and his or her family. People who are dying experience all the emotions people feel through the course of a lifetime. As much as they might know fear, loneliness, guilt, shame, and despair, they can also experience hope, joy, love, compassion and intimacy. Dying is not void of the painful emotions we experience in living. At the same time dying, like living, presents opportunities for personal growth and development, renewal or repair of relationships, and review of the meaning of life’s experiences.1 It is within the framework of this realization that nurses can learn the skills to be present with, communicate with, and compassionately foster patient and family resolution and a dignified closure that honors their lives and relationships. Instead of asking the patient and family members to fit into a caregiving system, hospice extends services according to their unique situation and personal values, and focuses through holistic, compassionate care. Compassionate care by its very nature is shaped to fit the individual needs and values of the people involved. Rather than having professionals direct the patient and family experiences, hospice establishes a relationship of care and support that is directed by the patient and family, focusing on the individual’s and family’s world, encouraging personal choices and meaningful experiences around the process of illness, dying, death, and bereavement. The “Hospice Experience Model” and “experience approach” blends compassion and skill to assist patients and 13

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General Principles

their families in creating their own experiences around their life-limiting illnesses and caregiving. Ultimately, patients and families can experience optimal comfort and dignity, gain or retain control over their lives, reflect on what is most important to them at this time in their lives, and unwind their lives or relationships in a way that is meaningful. Hospice is a program of care provided across all care and home settings that involves a variety of services. Based on the understanding that dying is part of the life cycle, hospice manages disease symptoms but does not stop there. It offers excellent disease and symptom management so the patient and family can have the energy and ability to focus on what is most important to them at this time. Dr. David Kuhl spent years researching the end of life experiences of patients. He stresses the importance of people simply wanting to tell their stories, to relate to someone about living with dying. He summarizes their stories by outlining nine concerns or themes that capture their experiences, and that include: 1. Their changing perceptions of time, what it means, and how to spend it. 2. The suffering that resulted from the experience of hearing their terminal diagnosis for the first time and the need to communicate effectively with health care professionals. 3. Physical pain, its reality, and its effect on who they were. 4. The importance of being touched and being “in touch.” 5. The natural process of reviewing one’s life (looking back) once one understands that dying is a reality. 6. Speaking and hearing truth. 7. Longing to belong, that is, to understand who they were in the past with regard to their original families, as well as in the present with regard to their chosen (adult) family. 8. Asking the question, “Who am I?” in the search to know who they are in the present, free of the expectations of others. 9. Experiencing transcendence–meaning, value, God, spirituality, a higher being greater than oneself. As people experience this last phase of life, hospice provides comprehensive palliative medical and supportive services, compassion, and care with the goals of comfort and meaningful life completion for the patient and relationship closure for the family. A hospice supports the patient through the dying process and the family through the experience of caregiving, the patient’s illness, dying, and their own bereavement. Understanding that the last phase of life is as individual as each person who experiences it, hospice advocates so that people may live the remainder of their lives with dignity and in a manner that is meaningful to them. Hospice focuses on caring, not curing, and in most cases, care is provided in the patient’s home. Hospice care also is provided in freestanding hospice centers, hospitals, and nursing homes and other long-term care facilities. Hospice services are available to patients of any age, religion, race, or illness.

Typically, a family member serves as the primary caregiver and, when appropriate, helps make decisions for the terminally ill individual. Members of the hospice staff make regular visits to assess the patient and provide additional care or other services. Hospice staff is available through 24 hours a day, seven days a week to assist patients and families through this journey.2

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Hospice in the United States Hospice began in the United States as a grassroots effort to improve the quality of the dying experience for patients and their families in communities where the traditional medical systems fell short. Historically, health care delivery systems have been disease driven, with the focus on cure and rehabilitation. Approaches have focused on scientific knowledge of diseases, which drives the care processes. However, approaches to care are different when cure is the goal and when cure is no longer possible. End-stage disease progression and resulting symptoms produce different physiological responses, as well as different emotional responses. Hospice care began to fill the gap where systems fell short of addressing those differences. The beginning of the contemporary hospice movement is credited to Dame Cicely Saunders. Beresford3 described her pioneering work as follows: “Her concept of hospice was to combine the most modern medical techniques in terminal care with the spiritual commitment of the medieval religious orders that had once created hospices as way stations for people on pilgrimages.” Learning from Dame Saunders, Florence Wald became one of the first pioneers promoting the growth of hospice in the United States. When Wald was dean of the nursing school in the 1960s, the medical establishment was focused entirely on cures, with little attention given to palliative care and the patients’ wishes about their care. In particular, most physicians were loath to prescribe narcotics to ease terminal patients’ pain for fear that the patients would become addicted. Her transformation of the situation had its germ in a 1963 lecture at Yale by Dr. Cicely Saunders, founder of St. Christopher’s Hospice in London. Saunders’ lecture emphasized minimizing pain in terminal cancer patients so that they could focus on their relationships and prepare for death. Wald immediately began reshaping the nursing school curriculum to put more focus on patients and their families and to emphasize care of the dying. But feeling that further effort was required, Wald resigned as dean and went to London to study at St. Christopher’s. Upon her return, she organized the first U.S. hospice in Branford in 1971, Connecticut Hospice, which began by offering in-home care but eventually built its own inpatient facility and became a model for hospice care here and abroad. “Hospice care for the terminally ill is the end piece of how to care for patients from birth on,” she wrote. “As more and more people—families of hospice patients and hospice volunteers—are exposed to this new model of how to approach

A Model for Quality End-of-Life Care end-of-life care, we are taking what was essentially a hidden scene—death, an unknown—and making it a reality. We are showing people that there are meaningful ways to cope with this very difficult situation.” In the process, she made nurses an integral part of the care of patients and forged a new coalition between doctors, nurses and patients—replacing the long-held tradition that the doctor reigns supreme. The core idea of this new coalition was that, when hope for a cure is gone, attention should shift to a dying patient’s physical, emotional and spiritual comfort. “In some ways, we have to reform our end goals,” she said in a recent interview before her death in 2008. “We need to cure sometimes but care always.”4 No specific therapy is excluded from consideration. The test of palliative care lies in the agreement between the individual, his or her physicians, the primary caregiver, and the hospice team that the expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancement of the quality of life. The decision to intervene with active palliative care is based on an ability to meet stated goals rather than affect the underlying disease. An individual’s needs must continue to be assessed, and all treatment options must be explored and evaluated in the context of the individual’s values and symptoms. The individual’s choices and decisions regarding care are paramount and must be followed. Hospice palliative care is considered to be the model for quality, compassionate care at the end of life. Hospice care involves a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is extended to the patient’s family as well. At the center of hospice is the belief that each of us should be able to live and die free of pain, with dignity, and that our families should receive the necessary support to allow us to do so.4 The Standards of Practice for Hospice Programs of the National Hospice and Palliative Care Organization (NHPCO) describes palliative care as follows: Patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information, and choice. (Definition recommended by CMS in the Medicare Hospice Conditions of Participation and adopted by the National Quality Forum (NQF), with agreement by NHPCO and CAPC.)5 Statewide surveys completed by the American Association of Retired People (AARP) show similar results that were seen in Massachusetts. More than 90 percent surveyed said they have heard of hospice, although fewer than four in ten know that Medicare pays for it. Three quarters of those who know about hospice would want hospice care if they were dying. Members surveyed are willing to think and talk about these important end-of-life decisions, but they need help to start these conversations and understand end-of-life care issues. This provides

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an opportunity for the medical, legal, and spiritual professionals to be well-versed in end-of-life issues so they can help their clients have these important conversations and make well-informed decisions for their end-of-life care.6 Comparing the AARP statistics with the national statistics on hospice utilization, there continues to be a large gap between what people want and how they are cared for at life’s end. In 2007, an estimated 1.4 million patients received services from hospice compared to 950,000 in 2003. For 2007, NHPCO estimates that approximately 38.8 of all deaths in the United States were under the care of a hospice program. Half of hospice patients received care for less than three weeks and half received care for more than three weeks.7 These statistics reflect how important it is for nurses and other health professionals to be more aware of when to think about hospice and how to communicate the value of hospice to patients and families sooner.

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Hospice Palliative Care: A Holistic Approach Focusing on the Experiences of the Patient and Family Understanding the need for a better way to care for the dying, the hospice movement began to provide alternatives to the traditional curative model. Hospice expanded the traditional model, not only to address end-stage disease and symptom management but also to provide for the emotional, social, and spiritual dimensions of the patient’s and family’s experiences around their illness, dying, caregiving, and bereavement. The experience of the last phase of life is an individual journey involving one’s mind, body, and spirit. Cassell8 described a theory of personhood reflecting that each person is a holistic being with dynamic, interrelated dimensions that are affected by the changes and adaptations experienced with progressive illness and dying. These dimensions involve the physical experience of end-stage disease, the emotional experience of one’s relationships, and the way in which one defines spiritual existence.9 As the disease progresses and the physical dimensions decline, the other dimensions (i.e., interpersonal and spiritual) take on added meaning and purpose. What one defines as quality of life changes substantially for people with life-limiting illnesses. Life perspectives, goals, and needs change. It is a time of reflection on a broader sense of meaning, purpose, and relationships, based on each individual’s values. Hospice grew from this understanding of full personhood; it is designed to offer expert end-of-life care to patients and families that addresses all of these dimensions through a holistic approach. Each patient and family is supported by an interdisciplinary group (IDG) consisting of physicians, nurses, social workers, counselors, chaplains, therapists, home health aides, and volunteers. These disciplines reflect the expertise needed to address the varied dimensions that are affected through the course of illness, caregiving, dying, and bereavement.

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General Principles

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The Medicare Hospice Benefit Service The initial design of the Medicare Hospice Benefit program is still consistent in its overall structure including the following hospice services: nursing care, medical and social services, physician services, counseling/pastoral services, short-term inpatient and respite care, medical appliances and supplies including drugs and biologicals, home health aide and homemaker services, therapies (physical, occupational, speech), dietary/nutrition counseling, bereavement counseling, and drugs for symptom management and pain control.10 The levels of care outlined in the Medicare Hospice Benefit reflect the variations in care intensity that are required to meet patient and family needs in the last phase of life. Medicare provides coverage for hospice care to Medicare beneficiaries who have elected the hospice benefit and who have been certified as terminally ill with a prognosis for a life expectancy of 6 months or less. Once elected, Medicare pays one of four prospective, per diem rates for hospice care: routine home care, continuous home care, respite care, general inpatient care. Each of these payment categories is defined later. Changing the level of care is determined through a collaborative effort by the hospice IDG, patient, family, and primary physician. The four levels of care include: 1. Routine Home Care: Routine home care is provided in the patient’s home, nursing home, or residential care setting or wherever the patient and family reside. 2. Continuous Home Care: A continuous home care day is a day on which a patient receives hospice care consisting predominantly of nursing care on a continuous basis at home. Home health aide or homemaker services, or both, may also be provided on a continuous basis. Continuous home care is only furnished during brief periods of crisis and only as necessary to maintain the terminally ill patient at home. 3. General Inpatient Care: Patient receives general inpatient care in an inpatient facility for pain control or acute or chronic symptom management which cannot be managed in other settings. 4. Inpatient Respite Care: Patient receives care in an approved facility on a short-term basis in order to provide respite for the family caregiver.7 Continuity across all care settings with hospice professional management of care was and continues to be a strong underpinning of the benefit.

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Aging in the United States and End-of-Life Care The aging of America has changed the nature and needs of people who are in their last years of life. The Medicare Hospice

Benefit was designed to provide substantial professional and material support (e.g., medications, equipment) to families caring for dying individuals at home during their last 6 months of life. The benefit was designed for, and lends itself well to, the predictable trajectory of end-stage cancers but not as well to unpredictable chronic illnesses such as congestive heart failure, chronic lung disease, stroke, and dementing illnesses.11 An examination of hospice care and the delivery of quality end-of-life services must reflect the societal change in aging demographics and the resulting varied needs in end-of-life care models. In our society, the overwhelming majority of dying people are elderly, and they typically die of a slowly progressing, chronic disease or of multiple coexisting problems that result in multisystem failure. Their final phase of life, which often lasts several years before death, is marked by a progressive functional dependence and associated family and caregiver burden. Hospice programs in demographic areas that represent the future of our aging society, such as Florida, have expanded their care and service options well beyond the original defi nition of the MHB to more fully respond to the frail elderly in their communities who are dying of chronic, progressive illnesses. These expanded hospice delivery models (Table 2–1) are: applying hospice approaches through a variety of services throughout the lifespan, long before the last 6 months of life, recognizing the variable dying process; and providing an array of services so that individuals may age in their own homes, or wherever they choose, until death. The expanded services models are reflected in the 69.8 percent of hospices operating service delivery programs outside of the Medicare Hospice Benefit model and include: • From 15.9 operating formal pediatric palliative care programs with specialized staff. • 79.6 offering palliative consult services in any setting. • 73.4 offering palliative care services at home or in an inpatient facility. • 62.5 offering post-hospice support programs for patients discharged alive.12

o]

Expanded Hospice Palliative Care Models Although hospice appears to add value to end-of-life care, and although it does not cost government payers significantly more, the Medicare Hospice Benefit alone is not meeting all the needs of communities for comprehensive, high-quality hospice and palliative end-of-life care.13 The most prevalent model of U.S. hospice care, the “Medicare hospice model,” is not viewed as the answer to the challenge of just or equitable access to hospice care nationwide.14 Hospices compatible with this model provide all or almost all of their care within the eligibility requirements and funding parameters of the Medicare (and Medicaid) hospice benefit; this creates numerous access barriers. These hospice models are much less likely

Table 2–1 Suncoast Hospice Coordinated Continuum of Hospice Services Across the Lifespan Center for Caring Center for Community • Pubilc Engagement • Community Mobilization • Advocacy • Web Access/& Virtual Communities • Advance Directive Campaigns • Community Ethics Center • Advisory Counsels • Community Education/End of Life Issues • Speakers Bureau • Workplace Awareness • Community Library • Faith In Action • Hospice Teen Volunteers • Hospice Youth Promoting Excellence • Veterans Partnership • Child and Family Support –Children’s Education • AIDS Service of Pinellas –Preventive Education • Diversity Initiatives PERSONS SERVED • Everyone in Our Community • Worried Well • Friends, Neighbors, Caregivers

Center for Living & Wellness • Welcome/Comfort • Service Inquiries • Information & Referral Resources • Care Planning • Decision Making Consults • PATH • Advance Directives • Patient/Caregiver/Client Counseling • Wellness and Spiritual Direction • Workplace Initiatives Regarding Illness & Caregiving • Family & Children’s Counseling (CFSP) • AIDS Testing and Counseling PERSONS SERVED • All Who Come to The Center Seeking Our Services • Clients Needing Assistance—Not Physical Care

Palliative Care

Hospice

Center for Loss & Healing

• Palliative Care—Decisions—Consults • Hospitals/NH—Palliative Care Partnerships • Suncoast Supportive Care >1 yr Life Expectancy • Palliative Home Care • Partners in Caring: Together for Kids (CFSP) • Home Health Care • AIDS Medicaid Waiver (ASAP) • HIV Specialty Home Care • Clinical Education in the Community

• Hospice at Home • Continuous Care/Respite • Hospice in Long Term Care • Hospice in ALFs • Inpatient Hospice in Hospitals & Nursing Homes • Woodside Hospice House Inpatient • Residential • Caregiver Program • Caregiver Support Education/Inspiration • Caregiving Network Incl. Families Out of Area • Jewish Hospice • Children’s Hospice • HIV Hospice • Team IMPACT • IV Team • Pharmacy • DME • Bereavement Care • Quality of Life Funds • Palliative Arts • Suncoast Supportive Care 1 yr. Life Expectancy & Their Care Givers

PERSONS SERVED • Persons with 50 kg

Dose If Patient < 50 kg

Acetaminophen*†

4000 mg/24h q 4–6h

Aspirin*†

4000 mg/24h q 4–6h

Ibuprofen*† Naproxen*† Choline magnesium trisalicylate*§ Indomethacin†

2400 mg/24h q 6–8h 1000 mg/24h q 8–12h 2000–3000 mg/24h q 8–12 h 75–150 mg/24h q 8–12h

Ketorolac‡

30–60 mg IM/IV initially, then 15–30 mg q 6h bolus IV/IM or continuous IV/SQ infusion; short-term use only (3–5 days) 100–200 mg PO up to b.i.d.

10–15 mg/kg q 4h (oral) 15–20 mg/kg q 4h (rectal) 10–15 mg/kg q 4h (oral) 15–20 mg/kg q 4h (rectal) 10 mg/kg q 6–8h (oral) 5 mg/kg q 8h (oral/rectal) 25 mg/kg q 8h (oral) 0.5–1 mg/kg q 8–12h (oral/ rectal) 0.25–1 mg/kg q 6h short-term use only (3–5 days) No data available

Celecoxib§¶ *Commercially

available in a liquid form. available in a suppository form. ‡Potent antiinfl ammatory (short-term use only due to gastrointestinal side effects). §Minimal platelet dysfunction. ¶Cyclooxygenase-2-selective nonsteroidal antiinfl ammatory drug. †Commercially

Nonsteroidal Antiinflammatory Drugs Nonsteroidal antiinflammatory drugs (NSAIDs) affect analgesia by reducing the biosynthesis of prostaglandins, thereby inhibiting the cascade of inflammatory events that cause, amplify, or maintain nociception. These agents also appear to reduce pain by influences on the peripheral or central nervous system independent of their antiinflammatory mechanism of action. This secondary mode of analgesic efficacy is poorly understood. The “classic” NSAIDs (e.g., aspirin or ibuprofen) are relatively nonselective in their inhibitory effects on the enzymes that convert arachidonic acid to prostaglandins.63 As a result, gastrointestinal (GI) ulceration, renal dysfunction, and impaired platelet aggregation are common.64,65 The cyclooxygenase-2 (COX-2) enzymatic pathway is induced by tissue injury or other inflammation-inducing conditions.66 It is for this reason that there appears to be less risk of GI bleeding with short-term use of the COX-2 selective NSAIDs.67 However, although several studies demonstrate prolonged GI-sparing effects,68 others suggest that these benefits may not extend beyond 6 to 12 months, and there may be a risk of cardiovascular events with prolonged COX-2 selective NSAID use.69–74 Additionally, because there is crosssensitivity, patients allergic to sulfa-containing drugs should not be given celecoxib (Table 7–2). The NSAIDs, as a class, are very useful in the treatment of many pain conditions mediated by inflammation, including those caused by cancer.64,75 There are insufficient data to determine whether the COX-2 agents have any specific advantages over the nonselective NSAIDs in the management of pain due to conditions such as metastatic bone pain. The NSAIDs do offer the potential advantage of causing minimal nausea, constipation, sedation, or other effects on mental functioning, although there is evidence that short-term memory in older

patients can be impaired by them.76 Therefore, depending on the cause of pain, NSAIDs may be useful for moderate to severe pain control, either alone or as an adjunct to opioid analgesic therapy. The addition of NSAIDs to opioids has the benefit of potentially allowing the reduction of the opioid dose when sedation, obtundation, confusion, dizziness, or other central nervous system effects of opioid analgesic therapy alone become burdensome.77 As with acetaminophen, decreased renal function and liver failure are relative contraindications for NSAID use. Similarly, platelet dysfunction or other potential bleeding disorders contraindicate use of the nonselective NSAIDs due to their inhibitory effects on platelet aggregation, with resultant prolonged bleeding time. Proton pump inhibitors can be given to prevent GI bleeding.78

Opioid Analgesics As a pharmacological class, the opioid analgesics represent the most useful agents for the treatment of pain associated with advanced disease. The opioids are nonspecific insofar as they decrease pain signal transmission and perception throughout the nervous system, regardless of the pathophysiology of the pain. Moderate to severe pain is the main clinical indication for the opioid analgesics. Despite past beliefs that opioids were ineffective for neuropathic pain, these agents have been found to be useful in the treatment of this complex pain syndrome.79 Other indications for opioid use include the treatment of dyspnea, use as an anesthetic adjunct, and as a form of prophylactic therapy in the treatment of psychological dependence to opioids (e.g., methadone maintenance for those with a history of heroin abuse).80–82 The only absolute contraindication to the use of an opioid is a history of a hypersensitivity reaction (rash, wheezing,

Pain at the End of Life

Table 7–3 Definitions

Table 7–4 Guidelines for the Use of Opioids

Addiction: Addiction is a primary, chronic, neurobiological disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.

Clinical studies and experience suggest that adherence to some basic precepts will help optimize care of patients who require opioid analgesic therapy for pain control: • Intramuscular administration is highly discouraged except in “pain emergency” states when nothing else is available. (Subcutaneous delivery is almost always an alternative.) • Noninvasive drug delivery systems that “bypass” the enteral route (e.g., the transdermal and the oral transmucosal routes for delivery of fentanyl for treatment of continuous pain and breakthrough pain, respectively) may obviate the necessity to use parenteral routes for pain control in some patients who cannot take medications orally or rectally. • Anticipation, prevention, and treatment of sedation, constipation, nausea, psychotomimetic effects, and myoclonus should be part of every care plan for patients being treated with opioid analgesics. • Changing from one opioid to another or one route to another is often necessary, so facility with this process is an absolute necessity. Remember the following points: —Incomplete cross-tolerance occurs, leading to decreased requirements of a newly prescribed opioid. —Use morphine equivalents as a “common denominator” for all dose conversions in order to avoid errors.

Physical dependence: Physical dependence is a state of adaptation that is manifested by a drug-class-specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist. Tolerance: Tolerance is a state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug’s effects over time. Pseudoaddiction: Pseudoaddiction is the mistaken assumption of addiction in a patient who is seeking relief from pain. Pseudotolerance: Pseudotolerance is the misconception that the need for increasing doses of drug is due to tolerance rather than disease progression or other factors. Sources: Adapted from reference 53.

edema). Allergic reactions are almost exclusively limited to the morphine derivatives. In the rare event that a patient describes a true allergic reaction, one might begin therapy with a low dose of a short-acting synthetic opioid (e.g., IV fentanyl) or try an intradermal injection as a test dose. The rationale for using a synthetic opioid (preferably one without dyes or preservatives since these can cause allergic reactions) is that the prevalence of allergic reactions is much lower. If the patient does develop a reaction, using a low dose of a shortacting opioid will produce a reduced response for a shorter period of time when compared to long-acting preparations. Because misunderstandings lead to undertreatment, it is incumbent upon all clinicians involved in the care of patients with chronic pain to clearly understand and differentiate the clinical conditions of tolerance, physical dependence, addiction, pseudoaddiction, and pseudotolerance (Table 7–3). It is also critically important for clinicians who are involved in patient care to be aware that titration of opioid analgesics to affect pain relief is rarely associated with induced respiratory depression and iatrogenic death.83,84 In fact, the most compelling evidence suggests that inadequate pain relief hastens death by increasing physiological stress, decreasing immunocompetence, diminishing mobility, increasing the potential for thromboembolism, worsening inspiration and thus placing the patient at risk for pneumonia, and increasing myocardial oxygen requirements.49,50 Furthermore, in a recent survey

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Sources: Adapted from reference 53.

of high-dose opioid use (299-mg oral morphine equivalents) in a hospice setting, there was no relationship between opioid dose and survival.85 And, finally, in a small study of opioid use for the treatment of dyspnea, there was no increased risk of respiratory depression in opioid naïve patients when compared to those patients who had been receiving opioids.86 In a study of patients with advanced cancer, no reliable predictors for opioid dose were identified.9 There is significant inter- and intraindividual variation in clinical responses to the various opioids, so in most cases, a dose-titration approach should be viewed as the best means of optimizing care. This implies that close follow-up is required to determine when clinical end points have been reached. Furthermore, idiosyncratic responses may require trials of different agents to determine the most effective drug and route of delivery for any given patient. Table 7–4 lists more specific suggestions regarding optimal use of opioids. Another factor that needs to be continually considered with opioid analgesics is the potential to accumulate toxic metabolites, especially in the face of decreasing drug clearance and elimination as disease progresses and organ function deteriorates.87 Due to its neurotoxic metabolite, normeperidine, meperidine use is specifically discouraged for chronic pain management.88 Propoxyphene (e.g., Darvocet N-100) also is discouraged for use in palliative care due to the active metabolite, norpropoxyphene, its weak analgesic efficacy, and the

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Symptom Assessment and Management

Table 7–5 Approximate Equianalgesic Doses of Most Commonly Used Opioid Analgesics Drug

Parenteral Route

Enteral Route

Morphine† Codeine

10 mg 130 mg

Fentanyl‡††

50–100 mcg

Hydrocodone Hydromorphone§ Levorphanol¶

Not available 1.5 mg 2 mg acute, 1 chronic See text & Table 7–7 Not available

30 mg 200 mg (not recommended) OTFC and buccal available‡ 30 mg 7.5 mg 4 mg acute, 1 chronic See text & Table 7–7 20–30 mg

Methadone¶ Oxycodone††

*Dose conversion should be closely monitored since incomplete crosstolerance may occur. †Available in continuous and sustained-release pills and capsules, formulated to last 12 or 24 hours. Interindividual variation in duration of analgesic effect is not uncommon, signaling the need to increase the dose or shorten the dose interval. ‡Also available in transdermal and oral transmucosal forms, see package insert materials for dose recommendations. OTFC=oral transmucosal fentanyl citrate. §Available as a continuous-release formulation lasting 24 hours. ¶ These drugs have long half-lives, so accumulation can occur; close monitoring during fi rst few days of therapy is very important. **Available in several continuous-release doses, formulated to last 12 hours. Interindividual variation in duration of analgesic effect is not uncommon, signaling the need to increase the dose or shorten the dose interval. ††Fentanyl 100 mcg patch ≈ 4 mg IV morphine/h. Sources: Adapted from references 53, 56, 57, 59.

significant acetaminophen dose found in some formulations.53 As well, the mixed agonist–antagonist agents, typified by butorphanol, nalbuphine, and pentazocine, are not recommended for the treatment of chronic pain. They have limited efficacy, and their use may cause an acute abstinence syndrome in patients who are otherwise using pure agonist opioid analgesics. Morphine Morphine is most often considered the “gold standard” of opioid analgesics and is used as a measure for dose equivalence (Table 7–5).53 Although some patients cannot tolerate morphine due to itching, headache, dysphoria, or other adverse effects, common initial dosing effects such as sedation and nausea often resolve within a few days. In fact, one should anticipate these adverse effects, especially constipation, nausea, and sedation, and prevent or treat appropriately (see below). One metabolite of morphine, morphine-3-glucuronide (M3G) is active and may contribute to myoclonus, seizures and hyperalgesia (increasing pain), particularly when patients cannot clear the metabolite due to renal impairment.87,89 Side effects and metabolic effects can be differentiated by the time course. Side effects generally

occur soon after the drug has had time to absorb, whereas there usually is a delay in metabolite-induced effects by several days. If adverse effects exceed the analgesic benefit of the drug, convert to an equianalgesic dose of a different opioid. Because cross-tolerance is incomplete, reduce the calculated dose by one third to one half and titrate upward based on the patient’s pain intensity scores (see Chapter 19 for more information on the neurotoxicity of opioids).53 Morphine’s bitter taste may be prohibitive, especially if “immediate-release” tablets are left in the mouth to dissolve. When patients have dysphagia, several options are available. The 24-hour, long-acting morphine capsule can be broken open and the “sprinkles” placed in applesauce or other soft food.90 Oral morphine solution can be swallowed, or small volumes (0.5–1 mL) of a concentrated solution (e.g., 20 mg/ mL) can be placed in the mouth of patients whose voluntary swallowing capabilities are more significantly limited.91,92 Transmucosal uptake of morphine is slow and unpredictable due to its hydrophilic chemical nature. In fact, most of the analgesic effect of a morphine tablet or liquid placed buccally or sublingually is due to drug trickling down the throat and the resultant absorption through the GI tract. Furthermore, again due to the hydrophilic nature of morphine, creams, gels and patches that contain morphine do not cross the skin and therefore do not provide systemic analgesia.93 Another useful route of administration when oral delivery is unreasonable is the rectal route.94 Commercially prepared suppositories, compounded suppositories, or microenemas can be used to deliver the drug into the rectum or stoma.95 Sustained-release morphine tablets have been used rectally, with resultant delayed time to peak plasma level and approximately 90 of the bioavailability achieved by oral administration. Fentanyl Fentanyl is a highly lipid soluble opioid that has been administered parenterally, spinally, transdermally, transmucosally, and by nebulizer for the management of dyspnea.75,96 Because of its potency, dosing is usually conducted in micrograms. Transdermal Fentanyl. Transdermal fentanyl, often called the fentanyl patch, is particularly useful when patients cannot swallow, do not remember to take medications, or have adverse effects to other opioids.97 Opioid-naive patients should start with a 12.5-mcg/h patch (currently the lowest available dose) or a 25-mcg/h patch after evaluation of effects with immediate-release opioids (Table 7–6). Patients should be monitored by a responsible caregiver for the first 24 to 48 hours of therapy until steady-state blood levels are attained. Fever, diaphoresis, cachexia, morbid obesity, and ascites may have a significant impact on the absorption, predictability of blood levels, and clinical effects of transdermal fentanyl; thus, this form of administration may not be appropriate in those conditions.98,99 The specific effects of body mass and temperature on absorption have not been studied. Some believe the changes in fat stores (seen with cachexia) alter the fat depot

Pain at the End of Life

Table 7–6 Fentanyl Patch Instructions to Patients and Caregivers 1. Place patch on the upper body in a clean, dry, hairless area (clip hair, do not shave). The patch does not need to be placed over the site of pain. 2. Choose a different site when placing a new patch, then remove the old patch. 3. If a skin reaction consistently occurs despite site rotation, spray inhaled steroid (intended for inhalational use in asthma) over the area, let dry and apply patch (steroid creams prevent adherence of the patch). 4. Remove the old patch or patches and fold sticky surfaces together, then flush down the toilet. 5. Wash hands after handling patches. 6. All unused patches (patient discontinued use or deceased) should be removed from wrappers, folded in half with sticky surfaces together, and flushed down the toilet. Sources: Adapted from references 97–99.

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should be disposed of by placing under hot water or inserting the unit in a child-resistant temporary storage bottle provided when the drug is first dispensed. Buccal. The fentanyl buccal tablet has been shown to be effective and to provide more rapid onset of pain relief for breakthrough pain.104 When compared with OTFC, fentanyl buccal tablets produce a more rapid onset and greater extent of absorption.105 The adverse effects are similar to those seen with other opioids, although a small percentage of patients do not tolerate the sensation of the tablet effervescing in the buccal space.106 There does not seem to be a significant difference in absorption of the drug when comparing individuals who have mucositis with those who do not have an altered oral mucosa.107 For patients who cannot place the tablet buccally (between the gum and cheekpouch), sublingual (under the tongue) administration produced comparable bioequivalence.108 Bioadhesive fi lms impregnated with fentanyl are under investigation as an alternate to tablet formulations.109 Oxycodone

needed for absorption of this lipid-soluble compound. There is some suggestion that transdermal fentanyl may produce less constipation when compared to long-acting morphine.97 Further study is needed to confirm these findings. Some patients experience decreased analgesic effects after only 48 hours of applying a new patch; this should be accommodated by determining if a higher dose is tolerated with increased duration of effect or a more frequent (q 48 h) patch change should be scheduled. As with all long-acting preparations, breakthrough pain medications should be made available to patients using continuous-release opioids such as the fentanyl patch. Several reports have documented the safe and effective use of subcutaneous fentanyl when the transdermal approach could no longer provide relief or side effects occurred with other opioids.97 However, parenteral fentanyl is commercially available in a 50-mcg/mL concentration. Higher doses may preclude the subcutaneous route. When this occurs, the intravenous (IV) route is warranted. Oral Transmucosal Fentanyl Citrate. Oral transmucosal fentanyl citrate (OTFC) is composed of fentanyl on an applicator that patients rub against the oral mucosa to provide rapid absorption of the drug.100,101 This formulation of fentanyl is particularly useful for breakthrough pain, described later in this chapter. One example of OTFC use would be pain relief of rapid onset or during a brief but painful dressing change. Adults should start with the 200-mcg dose and monitor efficacy, advancing to higher dose units as needed.102 Clinicians must be aware that, unlike other breakthrough pain drugs, the around-the-clock dose of opioid does not predict the effective dose of OTFC. Pain relief can usually be expected in about 5 minutes after beginning use.103 Patients should use OTFC over a period of 15 minutes because too-rapid use will result in more of the agent being swallowed rather than being absorbed transmucosally. Any remaining partial units

Oxycodone is a synthetic opioid available in a long-acting formulation (OxyContin), as well as immediate-release tablets (alone or with acetaminophen) and liquid. It is approximately as lipid soluble as morphine, but has better oral absorption.110 The equianalgesic ratio is approximately 20–30 mg:30 mg of oral morphine. Side effects appear to be similar to those experienced with morphine; however, one study comparing these two long-acting formulations in persons with advanced cancer found that oxycodone produced less nausea and vomiting.111 Despite significant media attention to OxyContin and its role in opioid abuse, it does not appear to be inherently “more addicting” than other opioids used in palliative care. Because of this attention, however, several states have restricted the number of tablets that will be distributed to an individual per month. Methadone Methadone has several characteristics that make it useful in the management of severe, chronic pain.112–114 The half-life of 24 to 36 hours or longer allows prolonged dosing intervals, although for pain control, every-eight-hour dosing is recommended.115 Methadone may also bind as an antagonist to the N-methyl-daspartate (NMDA) receptor, believed to be of particular benefit in neuropathic pain.116 Additionally, methadone can be given orally and parenterally, and sublingual administration is under investigation.117 Furthermore, methadone is much less costly than comparable doses of proprietary continuous-release formulations, making it potentially more available for patients without sufficient financial resources for more costly drugs. Despite these advantages, much is unknown about the appropriate dosing ratio between methadone and morphine, as well as the safest and most effective time course for conversion from another opioid to methadone.118 Early studies

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Table 7–7 Rotation to Methadone from Other Opioids in Oral Morphine Equivalents Bruera, E. & Sweeney, C.113 If oral morphine < 100 mg, change to methadone 5 mg every 8 hours. If oral morphine > 100 mg, use 3-day rotation period: Day 1—Reduce oral morphine dose by 30–50 and replace opioid using a 10:1 ratio. Administer methadone every 8 hours. Day 2—Reduce oral morphine by another 35–50 of original dose and increase methadone if pain is moderate to severe. Supplement with short-acting opioids. Day 3—Discontinue oral morphine and titrate methadone dose daily.

Begin methadone at 10 mg or less per day given in divided doses (every 8 hours). Do not increase the dose by more than 25–50 weekly

Source: www.zerodeaths.org (accessed November 30, 2009).

suggested the ratio might be 1:1, and this appears to be true for individuals without recent prior exposure to opioids. Newer data suggest the dose ratio increases as the previous dose of oral opioid equivalents increases.119–121 Systematic review of exisiting studies do not favor one approach over another122 (Table 7–7). Furthermore, although the long half-life is an advantage, it also increases the potential for drug accumulation before achieving steady-state blood levels, putting patients at risk for oversedation and respiratory depression. This might occur after 2 to 5 days of treatment with methadone. Close monitoring of these potentially adverse or even life-threatening effects is required and most experts suggest that methadone only be prescribed by experienced clinicians.123,124 Myoclonus has been reported with methadone use.125 Finally, recent studies suggest high doses of methadone may lead to QT wave changes (also called torsade de pointes).126–128 Methadone is metabolized primarily by CYP3A4, but also by CYP2D6 and CYP1A2. As a result, drugs that induce CYP enzymes accelerate the metabolism of methadone, resulting in reduced serum levels of the drug. Th is may be demonstrated clinically by shortened analgesic periods or reduced overall pain relief. Examples of these drugs often used in palliative care include several antiretroviral agents, dexamethasone, carbamazepine, phenytoin, and barbiturates.129 Drugs that inhibit CYP enzymes slow methadone metabolism, potentially leading to sedation and respiratory depression. These include ketoconazole, omeprazole, and SSRI antidepressants such as fluoxetine, paroxetine, and sertraline.113,115 Patients currently receiving methadone as part of a maintenance program for addictive disease will have developed cross tolerance to the opioids and, as a result, require higher doses than naive patients.130 Prescribing methadone for addictive disease requires a special license in the United States. Therefore, prescriptions provided for methadone to manage pain in palliative care should include the statement “for pain.”

Hydromorphone Hydromorphone (Dilaudid) is a useful alternative when synthetic opioids provide an advantage. It is available in oral tablets, liquids, suppositories, and parenteral formulations, and a long-acting formulation is under investigation in the United States (these are currently available in Canada and elsewhere).131 As a synthetic opioid, hydromorphone provides an advantage when patients have true allergic responses to morphine, or when inadequate pain control or intolerable side effects occur. Recent experience suggests that the metabolite hydromorphone-3-glucuronide (H3G) may lead to the same opioid neurotoxicity seen with morphine metabolites: myoclonus, hyperalgesia, and seizures.89,132,133 Th is is of particular risk in persons with renal dysfunction.134–136 Oxymorphone Oxymorphone is a semi-synthetic opioid that has been available in a parenteral formulation for almost 50 years and is now available in oral immediate-release and extended-release formulations. The safety and efficacy profile in people with cancer is similar to other opioids, such as morphine and oxycodone.134,135 In a study of people with low back pain, the equianalgesic dosage of extended-release oxymorphone was approximately 50 of the oxycodone extended-release dose.137 Other Opioids Codeine, hydrocodone, levorphanol, oxymorphone and tramadol are other opioids available in the United States for treatment of pain. Their equianalgesic comparisons are included in Table 7–5. Buprenorphine, a partial agonist, is typically used as part of an opioid maintenance program instead of methadone. A buprenorphine patch has been used in Europe for relief of

Pain at the End of Life cancer pain; however, this is not yet available in the United States.138 Furthermore, because of its partial agonist properties, an appropriate breakthrough medication (oral buprenorphine) is not currently available in the United States.

Alternative Routes of Administration for Opioid Analgesics Many routes of administration are available when patients can no longer swallow or when other dynamics preclude the oral route or favor other routes. These include transdermal, transmucosal, rectal, vaginal, topical, epidural, and intrathecal. In a study of cancer patients at 4 weeks, 1 week, and 24 hours before death, the oral route of opioid administration was continued in 62, 43, and 20 of patients, respectively. More than half of these patients required more than one route of opioid administration. As patients approached death and oral use diminished, the use of intermittent subcutaneous injections and IV or subcutaneous infusions increased.10 Thus, in the palliative care setting, nonoral routes of administration must be available. Enteral feeding tubes can be used to access the gut when patients can no longer swallow. The size of the tube should be considered when placing long-acting morphine “sprinkles” to avoid obstruction of the tube. The rectum, stoma, or vagina can be used to deliver medication. Thrombocytopenia or painful lesions preclude the use of these routes. Additionally, delivering medications via these routes can be difficult for family members, especially when the patient is obtunded or unable to assist. Because the vagina has no sphincter, a tampon covered with a condom or an inflated urinary catheter balloon may be used to prevent early discharge of the drug.139 As previously discussed, transdermal, transmucosal or buccal fentanyl are useful alternatives to these techniques. Parenteral administration includes subcutaneous and IV delivery (intramuscular opioid delivery is inappropriate in the palliative care setting).140 The IV route provides rapid drug delivery but requires vascular access, placing the patient at risk for infection and potentially complicating the care provided by family or other loved ones. Subcutaneous boluses have a slower onset and lower peak effect when compared with IV boluses.53 Subcutaneous infusions may include up to 10 mL/h (although most patients absorb 2 to 3 mL/h with least difficulty).141,142 Volumes greater than these are poorly absorbed. Hyaluronidase has been reported to speed absorption of subcutaneously administered drugs. Intraspinal routes, including epidural or intrathecal delivery, may allow administration of drugs, such as opioids, local anesthetics, and/or α-adrenergic agonists. One randomized controlled trial demonstrated benefit for cancer patients experiencing pain.143 However, the equipment used to deliver these medications is complex, requiring specialized knowledge for health care professionals and potentially greater caregiver burden. Risk of infection is also of concern. Furthermore, cost is a significant concern related to high-technology procedures. See Chapter 24 for a review of high-technology procedures for pain relief.

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Preventing and Treating Adverse Effects of Opioid Analgesics Constipation. Patients in palliative care frequently experience constipation, in part due to opioid therapy.1a,144 Always begin a prophylactic bowel regimen when commencing opioid analgesic therapy. Most clinicians recommend a laxative/softener combination, although a recent study found that senna alone was more effective than senna and docusate.145 Avoid bulking agents (e.g., psyllium) since these tend to cause a larger, bulkier stool, increasing desiccation time in the large bowel. Furthermore, debilitated patients can rarely take in sufficient fluid to facilitate the action of bulking agents. Fluid intake should be encouraged whenever feasible. Senna tea and fruits may be of use. A novel compound, methylnaltrexone, has been shown to be effective in relieving opioid-induced constipation when given subcutaneously at doses of 0.15 mg//kg.146,147 For a more comprehensive review of bowel management, refer to Chapter 12. Sedation. Excessive sedation may occur with the initial doses of opioids. If sedation persists after 24 to 48 hours and other correctable causes have been identified and treated if possible, the use of psychostimulants may be beneficial. These include dextroamphetamine 2.5 to 5 mg PO q morning and midday or methylphenidate 5 to 10 mg PO q morning and 2.5 to 5 mg midday (although higher doses are frequently used).148,149 Adjust both the dose and timing to prevent nocturnal insomnia and monitor for undesirable psychotomimetic effects (such as agitation, hallucinations, and irritability). Interestingly, in one study, as-needed dosing of methylphenidate in cancer patients did not result in sleep disturbances or agitation, even though most subjects took doses in the afternoon and evening.Modafinil, a newer agent approved to manage narcolepsy, has been reported to relieve opioid-induced sedation with once-daily dosing.150 Respiratory Depression. Respiratory depression is rarely a clinically significant problem for opioid-tolerant patients in pain.53 When respiratory depression occurs in a patient with advanced disease, the cause is usually multifactorial.83,74 Therefore, other factors beyond opioids need to be assessed, although opioids are frequently blamed for the reduced repirations. When undesired depressed consciousness occurs along with a respiratory rate less than 8/min or hypoxemia (O2 saturation 4 on a scale of 0–10 would require referral to a psychologist, social worker and/or pastoral care, depending on the apparent cause and the patient response to the referral. A reduction in the distress level may result in improved sleep, but this too requires consistent re-evaluation. (3) His reduced activity level may be the result of his medical history, current diagnosis, current treatment regimen and/or other contributing factors along with deconditioning. A referral to physical therapy for evaluation will identify the specific level of muscle deconditioning and will assist with a plan of care. Remaining active, energy conservation, and energy restoration are all interventions that may be of benefit to Mr. Ives. A thorough history and physical/psychosocial assessment will lead to individualized interventions to help alleviate patients’ symptoms and enhance quality of life.

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Assessment of Fatigue They told me that I might experience fatigue. But I thought, “Who cares about that, I have cancer.” Now I know what they meant. It is a suffocating cloud that slowly overtakes my thinking and my responses. I cannot find words when I speak and I cannot make myself get going. I could have never anticipated how completely consuming the fatigue would be. —A breast cancer long-term survivor.

Fatigue assessment of the whole person is essential—of the mind and spirit as well as the body. When assessing fatigue,

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Table 8–2 Proposed Criteria for Diagnosing Cancer-Related Fatigue These symptoms have been present almost every day during the same 2-week period in the past month: Significant fatigue, diminished energy or increased need of rest, disproportionate to any recent change in activity as well as five or more of the following: 1. Complaints of generalized weakness or limb heaviness 2. Diminished concentration or attention 3. Decreased motivation or interest in engaging in usual activities 4. Insomnia or hypersomnia 5. Sleep is unrefreshing or nonrestorative 6. Perceived need to struggle to overcome inactivity 7. Marked emotional reactivity to feeling fatigued (sadness, frustration, irritability) 8. Difficulty in completing daily tasks attrubuted to feeling fatigued 9. Perceived problems with short-term memory 10. Post-exertional malaise lasting several hours The symptoms cause clinically significant distress or impairment in social, occupational or other important areas of functioning. There is evidence from the history, physical examination or laboratory findings that symptoms are a consequence of cancer or cancer-related therapy. The symptoms are not primarily the consequence of comorbid psychiatric disorders, such as major depression, somatization disorder, somatoform disorder or delirium. Source: Adapted from Cella (1998), reference 66

the literature on pain assessment is useful. In pain assessment, the patient is considered the expert on his or her pain. Pain is whatever the patient says it is; so, too, it should be with fatigue. Caregiver or staff perceptions may be quite different from those of the person experiencing fatigue. There is no agreement on one definition for fatigue—it is the patient’s definition or description of fatigue that counts. Th is personal fatigue may include any reference to a decrease in energy, weakness, or a tired or ‘wiped out’ feeling. There are numerous methods of assessing and diagnosing fatigue. Recognizing the importance of cancer-related fatigue, the diagnosis has been proposed for inclusion in the International Classification of Diseases66 (Table 8–2). However, some researchers suggest that the diagnostic criteria are too stringent and the strict exclusion of those with possible “mood disorders” is of concern and may underestimate fatigue occurrence.62 Many scales have been developed to measure fatigue in the adult, with varying levels of validity and reliability. Examples of fatigue measurement tools include the Multidimensional Assessment of Fatigue, the Symptom Distress Scale, the Fatigue Scale, the Fatigue Observation Checklist, and a Visual Analogue Scale for Fatigue.67 These scales are available

for use in research and may be used in the clinical area. A comprehensive review by Piper and colleagues68 describes the advantages and disadvantages of the single item as well as multi-item, multidimensional cancer-related fatigue measures currently in use. The European Association for Palliative Care compiled a list of assessment instruments that have been used in research for fatigue in the palliative care group.5 One scale that has been used extensively in the oncology population is the Piper Fatigue Scale. This questionnaire has 22 items that measure four dimensions of fatigue: affective meaning, behavioral/severity, cognitive/mood, and sensory. This scale measures perception, performance, motivation, and change in physical and mental activities.68 In clinical practice, however, a verbal rating scale may be the most efficient. Fatigue severity may be quickly assessed using a “0” (no fatigue) to “10” (extreme fatigue) scale. As with the use of any measure, consistency over time and a specific frame of reference are needed. During each evaluation, the same instructions must be given to the patient. For example, the patient may be asked to rate the level of fatigue for the past 24 hours. Fatigue, as with any symptom, is not static. Changes take place daily and sometimes hourly in the patient with an advanced illness. As such, fatigue bears repeated evaluation on the part of the health care provider. One patient, noticing the dramatic change in his energy level, remarked “Have I always been this tired?” He seemed unable to discern whether there had ever been a time when he did not feel overwhelmed by the impact of fatigue. The imperative for palliative care nursing is to consistently take the initiative and ask the patient—and then continue to ask—about fatigue, keeping in mind that the ultimate goal is the patient’s comfort. An example of a thorough assessment of the symptom of fatigue is found in Table 8–3, which utilizes both a subjective and objective framework to ascertain patient fatigue and possible underlying physiological events that may exacerbate the fatigue. Fatigue assessment tools for use in the young pediatric population are in the developmental stages, but research has been progressing. Many fatigue questionnaires and guidelines developed for the adult patient with cancer may provide a framework for use in pediatrics. Three instruments to assess fatigue in children with cancer between the ages of seven and 12 have been tested and demonstrated strong initial validity.69 The tools consisted of a parallel parent, staff and child assessment of fatigue. Although larger patient samples are needed, results from the Childhood Fatigue Scale are encouraging. The PedsQL Multidimensional Fatigue Scale has also been used in the pediatric oncology population.70 Until a valid and reliable tool is available , a simple assessment of fatigue severity may be used. In the adolescent patient population, the assessment of fatigue is equally challenging. One researcher used a Fatigue and Quality of Life Diary to elicit the depth of the problem for this age group across three phases of illness. Patients were evaluated while undergoing treatment, in early remission and in the follow-up stage.23 Other studies focusing on adolescents employ a variety of tools. A review by Erickson21

Fatigue

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Table 8–3 Primary Fatigue Assessment Physical exam based on subjective symptom: Review of systems. Significant co-morbidities? Is there anything on exam that could account for the fatigue (recurrence, progression of disease, nerve damage, dehydration, cachexia)? Medications: Is the patient taking any medications that could contribute to the fatigue (pain or sleep medication, OTC medications, supplements, new medication changes)? Location: Where on the body is the fatigue located: Upper/lower extremities? All muscles of the body? Is there mental/attentional fatigue? Is rising from a chair difficult? Intensity/severity: Does the fatigue interfere with activities (work, role/responsibilities at home, social interaction), patient’s usual enjoyable activities? Duration: How long does the fatigue last (minutes, hours, days, time of day)? Has it become chronic (lasting more than 6 months duration)? What is the pattern (wake up from a night’s sleep exhausted, evening fatigue, transient, unpredictable, unfading, are circadian rhythms affected)? Any changes over time? Aggravating factors: What makes it worse (rest, activity, social interaction, other symptoms, environmental heat, cold, noise)? Alleviating factors: What relieves it (a good night’s rest, food, fluids, caffeine, listening to music, exercise)? Knowledge of fatigue: Had the patient been prepared for fatigue occurrence? What meaning does the patient assign to the symptom of fatigue (getting worse, disease progression, dying)? Muscle strength: Tests to elicit muscle strength are available if necessary (Jamar grip strength, nerve conduction studies). General appearance: Assess general appearance and look for pallor, monotone voice, slowed speech, dull facial expression, stooped shoulders or weight loss. Vital signs: Anything out of the ordinary to explain fatigue (fever, low blood pressure, irregular heart rate, shortness of breath, weight/caloric intake changes). Laboratory results: Oxygenation status (pulse oximeter, hemoglobin, hematocrit), electrolytes, thyroid and adrenal status, increased white count, increased erythrocyte sedimentation rate). Level of activity: Has the patient’s usual activity changed? How many hours/day in bed or resting? Affect: What is the mood of the patient (anxious, depressed, sad, apathetic, withdrawn, flat)? Source: Adapted from NCCN v.1.2008, reference 4.

indicates that often a single-item fatigue assessment is utilized. Although a small number of adolescents have participated, results indicate that fatigue continues to be a problem lasting well into the post-treatment phase for adolescents.

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Management/Treatment of Fatigue I fall into bed exhausted. I can’t wait one minute longer or speak one more sentence. But within a couple of hours, I’m wide awake. My eyes will not rest, my mind will not rest. I hear every sound in the neighborhood. It’s horrible not being able to sleep when I know I’m completely spent. I try to numb myself with a sleeping pill and wine. It doesn’t help. —A palliative care patient at home

When considering palliative care, the management of fatigue is extremely challenging. By its very definition, palliative care may encompass a prolonged period before death, when a person is still active and physically and socially participating in life, to a few weeks before death, when participatory activity may be minimal. With fatigue interventions, the wishes of the patient and family are paramount. One must consider

management in the context of the extent of disease, other symptoms (pain, nausea, diarrhea, etc.), whether palliative treatment is still in process, age and developmental stage, and the emotional “place” of the patient. Barriers to fatigue assessment as well as intervention exist and must be considered in the context of the patient, health care provider, and within the health care system itself. Patients may feel that their fatigue is not a paramount problem compared to other disease and treatment-related side effects unless their physician asks. Health care providers and their systems may not have the time/staff to routinely assess fatigue, and may believe that disease-related fatigue has no concrete solution potential. Current results in translational research on the implementation of a patient and staff fatigue education program using the NCCN fatigue guidelines indicate a significant decrease in barriers and fatigue in the intervention sample.71 Interventions for fatigue have been suggested to occur at two levels: the management of symptoms that contribute to fatigue, and the prevention of additional or secondary fatigue by maintaining a balance between restorative rest and restorative activity.72 Fatigue interventions have been grouped into two broad categories: pharmacologic interventions and nonpharmacologic interventions.

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Pharmacologic Intervention Pharmacological approaches to treat fatigue in patients with cancer and chronic progressive diseases have increased (Table 8–4). The categories outlined in the table include both FDA approved medications, as well as complementary alternative medications. The most promising randomized controlled trials of drug therapies as well as non-pharmaceutical interventions targeting adult cancer patients are outlined in an extensive review and meta-analysis.73 Pharmacologic therapies include: antidepressants, psychostimulants, progestional steroids, tumor necrosis factor alpha, micronutrients such as L-carnitine and various other classes of drugs.74,75 Methylphenidate, a psychostimulant, has been shown to improve quality of life when given to depressed, terminally ill patients. It has also been shown to counteract opioid somnolence, enhance the effects of pain medication, improve cognition, and increase patient activity level.12,76 Appropriate initial dosing for this drug is between 5 mg–10 mg orally at breakfast and 5 mg at lunch daily. Some patients require higher doses. The elderly may require a downward dose adjustment. However, further research is needed to confirm methylphenidate use in cancer-related fatigue.20 Pemoline had been used in the past to treat fatigue. Reports of liver toxicities resulted in this drug being withdrawn from the market. Dextroamphetamines, a potent CNS stimulant, may also be used. They are quickly absorbed from the gastrointestinal tract with high concentrations in the brain. Antidepressants have shown some effectiveness when a patient experiences both fatigue and depression. Efficacy has been shown with both nortriptyline and amitriptyline.74 The use of Sertraline in advanced cancer patients has shown no significant effect on fatigue,77 whereas Bupropion, used with cancer patients with a concomitant psychiatric diagnosis, showed improvement in fatigue.78 Corticosteroids have been used to increase energy levels at a dose of about 20 mg–40 mg/day. Prednisone has been shown to decrease the degree of fatigue experienced in some patients. Results from one study indicated an increase in activity level when palliative care patients were treated with methylprednisolone.79 The side effects that may occur with these drugs are always a concern. Both progestational steroids and paroxetine showed no superiority over placebo in treating cancer related fatigue.20 Anemia as a result of chemotherapeutic regimens has been very responsive to interventions. Erythropoietin alpha has been important in increasing hemoglobin levels for some cancer patients to improve quality of life. Doses varying from 10,000U subcutaneously given three times per week, to 40,000U given once a week, have resulted in a similar increase in hemoglobin level.58 In one study of 4382 anemic cancer patients, the highest quality of life was experienced when hemoglobin was maintained between 11 g–13 g/L with the use of epoetin alfa.80 Although results suggest that erythropoietin has a positive effect on fatigue, two studies terminated their drug trials early due to safety concerns over possible thromboembolic events.81,82

Other drugs have been used to combat chronic disease-related fatigue. Clinical trials of Tumor Necrosis Factor Alpha (etanercept) for fatigue have had varied results. In cancer patients receiving docetaxel, there was a significant decrease in fatigue and improved tolerability of the chemotherapy.141 In rheumatoid arthritis, human immunodeficiency virus and acquired immunodeficiency disease, this drug may reduce fatigue and shows promise for improvement of cachexia.83,84 Modafanil has been useful predominately in patients with multiple sclerosis, where some studies report clear improvement in fatigue.85,86 Levo-Carnitine, a micronutrient, was used in a small group of advance cancer patients with carnitine deficiency and appeared to provide fatigue improvement.87 A trial using Bisphosphonate Ibandronate in over 400 breast cancer patients showed significant improvement in fatigue and possibly in overall quality of life.88 Initial research of Co-enzyme Q1089 and American Ginseng90 for fatigue is underway. Exploration and positive fi ndings with multi-use drugs and alternative medicines are very encouraging for patients with chronic progressive disease and associated fatigue.

Non-pharmacological Interventions Interventions for cancer-related fatigue encompass several disciplines. Historically, nurse clinicians and researchers have been the trailblazers in assessing and managing fatigue in the clinical setting. Research has been conducted on all of the fatigue management strategies listed in Table 8–5. Included are: patient and staff educational interventions; studies on disrupted sleep patterns; nutritional deficits and their effect on patient quality of life; symptom management; and physical and attentional fatigue. Sample sizes have often been small and groups homogeneous, but the studies highlight the contribution of nurse researchers. A recent review on the effect of exercise on fatigue has been undertaken with the evaluation of twenty-eight studies representing 2083 participants. The outcome measures were diverse and included, but were not limited to, the Functional Assessment of Cancer Therapy-Fatigue (FACT-F), Profi le of Mood States (POMS), Piper Fatigue Scale, the Brief Fatigue Inventory and the SF-35 vitality scale. The authors concluded that the use of exercise can be beneficial for cancer-related fatigue during and after cancer treatment.91 An additional meta-analysis of 14 studies concentrating on breast cancer patients and survivors by McNeely et al.92 concluded that exercise has an effect on improving quality of life, fitness, physical functioning and decreasing fatigue. Several other investigators have reported the benefits of a consistent exercise regimen in breast cancer patients.93–96 Their research confirmed that exercise decreased perceptions of fatigue and increased quality of life, and indicated that those patients who exercised reported half the fatigue level of those who did not exercise. In palliative care, a group exercise program was piloted for those with incurable cancer and a short life expectancy. Outcomes indicated that physical fatigue was reduced.97

Table 8–4 Selected Pharmacologic Studies for Fatigue in Cancer and Chronic Progressive Diseases Drug Category

Medication/Action

Antidepressants

Paroxetine Hydrochloride (Paxil) Serotonin reuptake inhibitor

Description of Trial

Measurement Tool

Findings

Breast cancer patients on treatment N = 94 Ambulatory cancer patients on chemotherapy Breast Cancer more than 50 of patients N = 479 Palliative care/Advanced cancer patients N = 189

Fatigue Symptom Checklist plus single item fatigue measure Fatigue Symptom Checklist, plus one item fatigue measure

No difference between paroxetine and placebo for CRF. Increase in mood, no fatigue difference between paroxetine and placebo.

FACT-F and FACT-G

No significant effect on fatigue. Measured effects on symptoms and survival.

Moss 2006121 Convenience sample referred for depression

Various cancer diagnoses (Brain, breast, hematological, head and neck, others ) N = 21

Improvement in depression & fatigue in small sample of depressed and non depressed group.

Cullum 200478 Prospective open label trial

Various cancer diagnoses N = 15

Brief Fatigue Inventory, Hamilton Depression Scale, City of Hope QOL scale. Global Clinical Improvement Scale

Bruera 2006122 Randomized (DBPC)

Cancer patients off active treatment. Patient controlled dosing. N = 112

FACIT-F (13 item fatigue subscore)

Hanna 2006123 Convenience sample. Drug with dose escalation @ week 2 if needed Roth 2006124 Randomized (DBPC)

Stage I-III breast cancer patients w/o disease or treatment for 6 months. N = 32 Ambulatory Prostate Cancer Patients N = 24

FACT-F and Brief Fatigue Inventory

Breitbart 2001125 Randomized (DBPC) Methylphenidate vs. Pemoline vs. placebo

Ambulatory Human Immunodeficiency Virus (HIV) patients N = 144

Piper Fatigue Scale and Visual Analog Scale

Roscoe 2005119 (DBPC) Morrow 2003120 Double Blind Placebo Controlled (DBPC)

Sertraline (Zoloft) Selective serotonin reuptake inhibitor Bupropion (Wellbutrin-SR) Non serotonergic antidepressant with psychostimulant properties

Psychostimulants

Methylphenidate (Ritalin) Stimulates the CNS by blocking presynaptic dopamine reuptake

Stockler 200777 (DBPC)

Subjects/N

Self Report of Fatigue

Improvement in fatigue. 13/15 pts. psychiatric diagnosis. Significant fatigue improvement day 8 both drug and placebo. No improvement in FACIT-F score. Suggests that women with moderate to severe fatigue will have benefit. Preliminary report indicates fatigue reduction, 6/17 withdrew due to cardio effects. Ritalin & Pemoline, significant fatigue improvement vs. placebo. No difference between drugs. (Continued)

Table 8–4 Selected Pharmacologic Studies for Fatigue in Cancer and Chronic Progressive Diseases (continued) Drug Category

Medication/Action

Description of Trial Sarhill 2001149 Open label pilot Sugawara 2002126 Preliminary study

Dexmethylphenidate d-MPH (Focalin)

Modafanil (Provigil) CNS stimulant, adrenergic agonist.

Subjects/N Advanced cancer patients, various tumor types N = 11 Advanced cancer patients referred to psychiatrist for fatigue N = 16

Measurement Tool

Findings

Visual Analogue Scale

9/11 patients had improvement. No valid fatigue measure used. Findings suggest drug may be effective.

Schwartz 2002150 Methylphenidate plus exercise comparison to historical control

Melanoma patients pilot study of interferon induced fatigue N = 12

Fleishman 2005127 Randomized (DBPC) Patients on single blind placebo without improvement, randomized to double blind with dosing adjustment Morrow 2007 128 Modafanil vs. placebo

All cancer patients treated with chemo, breast cancer patients = 110/152 N = 152

Kaleita 2006129 Double blind dose-controlled randomized

Primary Brain cancer or non malignant brain tumor patients N = 21

Morrow 2005130 Modafanil vs. placebo Prospective open label Stankoff 2005131 Randomized (DBPC)

Breast cancer patients completed treatment 2 years prior N = 51 Multiple Sclerosis patients N = 115

Visual Analog Scale?

Rabkin 2004132 Open-label

HIV patients on antiretroviral medication N = 30

Fatigue Severity Scale

Cancer patients receiving chemotherapy

Schwartz Cancer Fatigue Scale, Medical Outcomes Study Short Form 36 (SF36) FACIT-F

Fatigue lower for exercise and drug group. Randomized trial is needed.

Brief Fatigue Inventory, POMS, Fatigue Severity Scale Fatigue Severity Scale and Visual Analogue Fatigue Scale (VAFS)

No published results.

Modified Fatigue Impact Scale

Significantly effective treating fatigue over placebo.

Improved fatigue outcome measures. Side effects included headache, insomnia, dizziness. Improvement in fatigue that had persisted for 2 years. No significant improvement in fatigue compared to placebo. Significant improvement in all measures of fatigue.

Progestational Steroids

Megestrol Acetate or Medroxyprogesterone Acetate (Megace)

Rammohan 200286 Single blind pilot study at 2 centers. Modafanil vs. placebo

Multiple Sclerosis patients N = 72

Modified Fatigue Impact Scale, VAS-F

Zifko 200285 Open label 2 center, dose escalating trial Bruera 1998133 DBPC cross-over study

Multiple Sclerosis patients N = 50

Fatigue Severity Scale

Advanced solid tumor cancer patients off active treatment. N = 84

Piper Fatigue Scale

Advanced cancer all tumor types N = 42 Advanced stage any cancer type N = 206 Advanced stage any tumor type not receiving treatment N = 244 11/13 trials of cancer patients on chemotherapy 13 trials N = 3735

POMS fatigue subscale

Significant fatigue improvement vs placebo. Six patients stopped due to adverse events. Reported clear improvement in fatigue in 43 patients. Significant difference in progestational steriods and placebo for CRF. No significant change in fatigue.

EORTC QLQ 30 fatigue subscale

General QOL indicated no measurable effect.

EORTC QLQ 30 fatigue subscale

Did not show improved QOL.

O’Shaughnessy 2005137 Randomized (DBPC)

Breast cancer patients on Anthracycline therapy N = 94

FACT-AN

Leyland Jones 200581 (DBPC)

Breast cancer patients N = 939

FACT-AN VAS

DeConno 1998134 (DBPC) Simons 1996135 Randomized (DBPC) Westman 1999136 Randomized (DBPC) Hemopoetic Growth Factors

Epoetin Alpha (Procrit) 13 trials Mimicks erythropoietin stimulates RBC production

Selected Studies Minton 200820

All showed evidence of effect of erythropoietin over placebo for CRF. Results suggest epoetin attenuated cognitive impairment and fatigue. Epoetin group had increased 4 month mortality. Trial ended early possibly due to thromboembolis. (Continued)

Table 8–4 Selected Pharmacologic Studies for Fatigue in Cancer and Chronic Progressive Diseases (continued) Drug Category

Medication/Action

Darbopoetin (Aranesp) Synthetic of erythropoietin, longer duration. 4 trials combined20

Tumor Necrosis Factor Alpha Blockade (TNF-alpha)

Etanercept (Enbrel) TNF decoy receptor

Description of Trial

Subjects/N

Measurement Tool

200782

Wright Randomized multicenter (DBPC)

Non Small cell lung cancer. N = 300

FACT-AN

Hedenus 2003138 Kotasek 2003139 Smith 2003140 Vansteenkiste 200235 (All trials placebo controlled) Monk 2006141 Open label

Hematologic malignances, lung cancer, various tumors types N = 1650

FACT-F Used by all investigators

Any cancer patients on Docetaxel for 18 weeks. N = 12 Rheumatoid Arthritis (RA)

Fatigue Symptom Inventory

Moreland 200683 Multicenter Randomized DBPC 12 months then open label for 12 months. Methotrexate vs. study drug Ting 200684

Health Assessment Questionnaire Vitality Domain

HIV and AIDS patients to examine safety

Findings Decreased survival in Epoetin group compared to placebo. Terminated trial early due to safety concerns. Small but statistically significant difference between darbopoetin and placebo for CRF.

Statistically significant decrease in fatigue QOL tool. Etanercept reduced fatigue in recent onset RA and established RA.

TNF may improve ulcers, cachexia, dementia and fatigue. Shows promise in this patient group.

Under current study with Etanercept

Thomas 2007142 Etanercept vs. placebo

Lung & Prostate patients receiving radiation

Quality of Life

Donepezil (Aricept) Reversible inhibitor of acetylcholinesterase (AChE) appears to enhance cholinergic function

Bruera 2007143 Randomized (DBPC)

Any cancer patient receiving strong opioids experiencing sedation. N = 142

FACIT-F

Ongoing Medication/ CAM Studies No significant fatigue improvement between groups.

Levo Carnitine (L-carnitine) Micronutrient important for acids and energy production.

Bisphosphonate Ibandronate Binds on bone, Delays skeletal events, improves bone pain. Co-Enzyme Q10 Dietary supplement that boosts the immune system American Ginseng May lessen sense of fatigue that cancer patients experience. Adenosine 5’- Triphosphate (ATP) Intracellular energy-transferring role . Extracellular ATP is involved in neurotransmission, muscle contraction Dexamphedamine Causes stimulation of cerebral cortex, respiratory, vasomotor centers. Amantadine Releases endogenous dopamine from basal ganglia and acts as a central stimulator

Cruciani 2008144 L. Carnitine vs. placebo double blind phase followed by open label phase

Advanced cancer patients both on or off chemo with carnitine deficiency N = 29

FACT-AN fatigue subscale

Gramignano 2006145 L. Carnitine open label non-randomized

Advanced solid tumor cancer patients with concurrent anticancer treatment. N = 12

Diel 200488 Randomized (DBPC)

Breast cancer patients only. Dose open label due to infusion volume. N = 466

Multidimensional Fatigue Symptom Inventory-SF and QOL EORTC QLQ 30 fatigue subscale

Lesser 200889 Drug vs. placebo

Breast cancer patient on chemo

FACIT-F

Barton 200890 American Ginseng vs. placebo

Any tumor type. Stratified by stage of disease

Brief Fatigue Inventory, POMS

Results unpublished.

Beijer 2007146 RCT Open label infusion vs. usual care

Palliative home care cancer patients all tumor types. N = 100

Short Fatigue Questionnaire 4 Items and QLQ-C30

Changes in QOL including fatigue final results in analysis.

Auret 2008147 Randomized (DBPC)

Advanced Cancer all tumor types. N = 50

Brief Fatigue Inventory

Zifko 2004148 Review article summarizing 4 studies

Multiple Sclerosis Total N = 213 over 4 studies

Various measurements utilized.

Transient fatigue improvement but no statistical difference in fatigue. Found to be superior to placebo in some not all endpoints. Not all studies used blinding or randomization.

Showed significant fatigue improvement when treatment phases combined. Suggests a larger study justified. Fatigue decreased significantly. Limited sample size. No adverse events. Significant improvement in fatigue in patients receiving 6 mg. May improve overall QOL. Results unpublished.

Abbreviations: Double Blind Placebo Controlled (DBPC), Randomized Control Trial (RCT), Cancer Related Fatigue (CRF), European Organization for the Research and Treatment of Cancer (EORTC), Quality of Life (QOL), Quality of Life Scale-Core 30 Questionnaire (QLQ-C30); Profi le of Mood State Fatigue Subscale (POMS-F); Functional Assessment of Cancer Therapy-Fatigue Subscale (FACT-F); Functional Assessment of Cancer Therapy-Anemia Subscale (FACT-AN); Functional Assessment for Chronic Illness Therapy-Fatigue (FACIT-F); Visual Analog Global Scale of Fatigue (VAS-F), Complementary Alternative Medicine (CAM).

Table 8–5 Non-Pharmacologic Symptom Management Strategies for Fatigue Problem

Intervention

Rationale

Lack of information or lack of preparation

Preparatory sensory information reduces anxiety Explain complex nature of fatigue and fatigue. and importance of communication of Realistic expectations decrease distress and fatigue level with health care providers. fatigue. Explain causes of fatigue in advanced cancer and chronic progressive diseases and evaluate fatigue level with each visit. • Fatigue can increase in advanced disease. • Cancer cells can compete with body for essential nutrients. • Palliative treatments, infection and fever increase the body’s need for energy. • Anxiety, depression and tension can contribute to fatigue. • Changes in daily schedules, or interrupted sleep schedules contributes to fatigue development. Prepare patient for planned ADL and daily events (eating, moving, visitors, healthcare provider appointments).

Disrupted rest/sleep patterns

Evaluate/establish sleep routine: Minimizing time in bed helps patients feel • Usua l sleep pattern, length of uninter- refreshed, avoids fragmented sleep, and strengths circadian rhythm. rupted sleep, temperature in room, activity prior to sleep. • Eating habits prior to sleep, medications, exercise. • Establish/continue regular, routine bedtime and awakening. • Obtain as long sleep sequences as possible, plan uninterrupted time. • Take short rest periods/naps that do not interfere with night sleep. • Use light sources to cue the body into a consistent sleep rhythm. • Pharmacologic management of insomnia should be used when behavioral and cognitive approaches have been

exhausted. Deficient nutritional status

Recommend to patient:

• High protein, nutrient dense food to “make every mouthful count.” • Use protein supplements to augment diet. • Suggest small, frequent meals. • Coordinate time up in chair with meal arrival time. • Socialization may increase oral intake. • Encourage adequate intake of fluids, 8 glasses/day or whatever is tolerated, unless contraindicated. • Consider requesting an appetite stimulant like Medroxyprogesterone Acetate (Megace).

202

Increased nutrition will raise energy level. Less energy is needed for digestion with small, frequent meals.

Fatigue

203

Table 8–5 Non-Pharmacologic Symptom Management Strategies for Fatigue (Continued) Problem

Intervention

Rationale

Multi-symptom occurrence

Assess and control symptoms contributing to or coexisting with fatigue such as: Pain, sleeplessness, depression, nausea, diarrhea, constipation, electrolyte imbalances, dyspnea, dehydration, infection. Assess for symptoms of anemia and evaluate for the possibility of pharmacologic intervention or transfusion.

Multiple distressing symptoms drain energy and will contribute to marked physical/ mental fatigue.

Decreased energy reserves

Plan/Schedule Activities: • Identify a person to be in charge (fielding questions, answering the phone, organizing meals). • Adjust method/pace of care and move slowly when providing care. • Prioritize and save energy for the most important events. • Eliminate or postpone noncritical activities. • Learn to listen to body; if fatigued,

Energy conservation helps to reduce fatigue burden and efficiently use energy available. Pleasant activities may reduce/relieve mental (attentional) fatigue.

rest. Obtain Physical Therapy Consult: • Mild physical therapy may help joint flexibility & prevent pain. • Engage in individually tailored, team approved exercise/yoga program. Use Distraction/Restoration • Encourage activities to restore energy: spending time in natural environment, gardening, listening to music, praying, meditating, engaging in hobbies (art, reading, journaling). • Spend time with family/friends, joining in passive activities (riding in car, watching meal preparation).

Toward the end of life, the NCCN guidelines recommend general strategies for fatigue management that begin with energy conservation techniques, prioritizing activities, delegating, taking rest periods and using labor-saving devices. They also recommend optimizing patient activity levels with the consideration of a referral to both physical and occupational therapy. Increased caution was emphasized for those with bone metastases and immunosupression.4 Attentional fatigue has been noted to be disturbing to many patients. It is defined by one author as a decreased capacity to concentrate or direct attention during stressful situations. When attention-restoring interventions were used with cancer patients, it was found that attention capacity was enhanced and fatigue was reduced.98,99 Restorative activities are based on a program that required patients to select and engage in a favorite activity for 30 minutes three times a week. The use of this technique provided restorative distraction and replaced boredom and understimulation. Included in the activities were spending

time in a natural environment, participating in favorite hobbies, writing, fishing, music, and gardening. Regardless of the limitations of the patients with advanced disease, incorporation of some of these activities may prove helpful. Nutritional consultation for patients has been shown to be key to managing the physiological deficiencies from cachexia, nausea and anorexia.100 Adequate hydration and the replacement of lost electrolytes enable the fatigue-sufferer to have the best opportunity to control fatigue symptoms that are physiologically based. The National Institutes of Health identified a major barrier to effective fatigue management as a lack of knowledge and awareness among physicians and patients.101 Educational intervention at all levels opens a broad category for fatigue intervention including taking advantage of every educational opportunity during the advanced disease course. With education of both the patient and the family as a constant theme, every attempt should be made to forewarn of changes

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in disease progression, procedures, treatment, medication side effects, or scheduling. Even a personnel change can be enough to impact the physical and emotional energy reserves. Nurse-initiated and planned educational sessions with both the patient and family give a forum in which to field forgotten questions, reinforce nutritional information, and together manage symptoms. Sleep disruption is a common problem encountered by the patient with advanced chronic progressive disease as identified in the case study. Sleep cycles may be negatively affected by innumerable internal and external factors.155 The disturbances may be actual or perceived but result in daytime impairment. Common sleep disturbances include insomnia, breathing disorders, and movement disorders. Complete measurement of sleep–wake disturbances are described extensively by Page et al and include an evaluation of: total sleep time, sleep latency, awakenings and wakefulness after sleep onset. Additional measurements include an evaluation of time spent napping, excessive daytime sleepiness, perceived quality of sleep, sleep efficiency and circadian rhythm.102 Simple changes in environment and habits may improve sleep distress tremendously. One study evaluated the feasibility of sleep interventions while patients underwent adjuvant chemotherapy. Components of the intervention included sleep hygiene (maintaining regular sleep schedule, low lighting, cool room), relaxation therapy (warm bath, reading, massage), stimulus control and sleep-restriction techniques (use bed for sleeping and sex only—avoid day napping).103 For those situations where pharmacological intervention is necessary, a thorough assessment of past and current sleep habits is essential. The temporary use of sleep medications such as Ambien (zolpidem tartrate) may be used to minimize sleep deprivation enough to energize the patient into trying nonpharmacological measures. Psychosocial techniques are the last broad category of fatigue intervention. A recent meta-analysis of cancer related fatigue research aimed to evaluate both physical and psychosocial interventions (cognitive behavioral therapy and counseling), as well as behavioral and alternative treatments (massage, yoga) and their effect on fatigue. The findings provide evidence that psychosocial interventions, restorative approaches, and counseling therapies have a moderate to strong effect in not only reducing fatigue, but in increasing vigor and vitality as well.104 Additionally, a review of 22 studies of psychosocial treatment with cancer patients reported findings that indicate psychosocial support and individualized counseling have a fatigue-reducing effect.105 If deemed appropriate, the patients and/or family should be encouraged to participate in disease-specific support groups. If unable to travel, there are support groups offered by telephone and/or internet. Individual counseling by nurses, social workers, or psychologists may also help. Fatigue-management interventions need to be considered within the cultural context of the patient and family. For some cultures, this may include only the “nuclear” family, whereas in other cultures, there are ritual or extended relatives. When

information is shared and decisions are made regarding an intervention, the “family” is acknowledged formally, and care should be made inclusive of these cultural variations.106 Management of, and interventions for, fatigue in pediatric oncology have mirrored intervention techniques used in adults. Taking into account the developmental stage of the pediatric patient will provide the structure needed to be effective.9 Children up to 13 years old with cancer consider taking a nap or sleeping, having visitors, and participating in fun activities to be fatigue alleviating behaviors. Adolescent patients with cancer add their own perceptions of what helps their fatigue by including interventions such as going outdoors, having protracted rest time, keeping busy, taking medication for sleep, receiving physical therapy as well as blood transfusions.9 Pediatric interdisciplinary palliative care teams are becoming more common and can provide a comprehensive range of nonpharmacologic interventions for fatigue including exercise, psychosocial interventions, and complementary and alternative therapy.107 As the practice guidelines and standards for fatigue management in palliative care continue to evolve,152–154 the NCCN fatigue guidelines provide a framework for adults, children and adolescents suffering from cancer-related fatigue. Consolidation of the standards provides recommendations that: fatigue commonly occurs with other symptoms and all patients—regardless of age or extent of disease—should be screened, assessed and managed according to clinical practice guidelines, by a multidisciplinary team, at regular intervals throughout the disease course. They also recommend patient, family and health care provider education programs be ongoing and that quality of fatigue management be implemented as continuous quality improvement projects. Finally, guidance is given that suggests that medical care contracts include reimbursement for fatigue and that disability insurance address coverage for long-lasting fatigue.4

o]

Summary Th is chapter has provided an overview of fatigue as it spans the illness trajectory and end-of-life experience for patients with chronic progressive disease. While fatigue is a complex phenomenon that has been widely studied, there is no universally accepted definition. Fatigue is experienced by individuals with cancer and many other chronic, progressive diseases. It is influenced by many factors such as age, psychological state, social support, stage of disease, polypharmacy issues, cognitive impairment and other comorbid conditions. Fatigue has a myriad of causes. The authors have provided a fatigue-assessment checklist that can be used to identify potential sources and/or antecedents for the patient’s fatigue. As there is no instant fi x for fatigue, the patient may become frustrated, and feel too fatigued to introduce life changes that require the habitual practice of non-pharmacologic interventions. Nurses are challenged

Fatigue to provide ongoing fatigue management education and to support and encourage the patient to actively participate in fatigue-management strategies. Patient referral to appropriate members of the treatment team and utilization of their services is always warranted. In the last stages of life, many patients experience fatigue in the context of multiple symptoms and comorbidities. Assessment of all treatable factors known to contribute to fatigue will impact on fatigue amelioration. As patients decline toward end of life, fatigue may provide a comforting form of protection and an insulation from suffering. It is essential to identify the point at which active fatigue intervention is no longer appropriate.

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and depression: A randomized, double-blind trial from the University of Rochester Cancer Center Community Clinical Oncology Program. J Clin Oncol 2003;21:4635–4641. Moss E, Simpson SA, Pelletier G, Forsyth P. An open-label study of the effects of Bupropion SR on fatigue, depression and quality of life of mixed-site cancer patients and their partners. Psycho-Oncol 2006;15:259–267. Bruera E, Valero V, Driver L, Shen L, Willey J, Zhang T, Palmer JL. Patient-controlled Methylphenidate for cancer fatigue: A double-blind, randomized, placebo-controlled trial. J Clin Oncol 2006;24:2073–2078. Hanna A, Sledge G, Mayer ML, Hanna N, Einhorn L, Monahan P, Daggy J, Bhatia S. A phase II study of methylphenidate for the treatment of fatigue. Supportive Care Cancer 2006;14: 210–215. Roth AJ, Nelson CJ, Rosenfelf B, O’Shea N, Slovin S, Scher HI, Breitbart W. Randomized controlled trial testing Methylphenidate as treatment for fatigue in men with prostate cancer. ASCO Prostate Cancer Symposium 2006. Available at www.asco.org (accessed December 31, 2008). Breitbart W, Rosenfeld B, Kaim M, Funesti-esch J. A randomized, double-blind, placebo-controlled trial of psychostimulants for the treatment of fatigue in ambulatory patients with human immunodeficiency virus disease. Arch Intern Med 2001;161:411–420. Sugawara Y, Skechi T, Shima Y, Okuyama T, Akizuki B, Nakano T, Uchitomi Y. Efficacy of methylphenidate for fatigue in advanced cancer patients: a preliminary study. Pall Med 2002;16:261–263. Fleishman S, Lower E, Zeldis J, Faleck H, Manning D. A phase II, randomized, placebo-controlled trial of the safety and efficacy of dexmethylphenidate (d-MPH) as a treatment for fatigue and “chemobrain” in adult cancer patients. Breast Cancer Res Treatment 2005;94:S214. Morrow GR. Modafinil in treating fatigue in patients receiving chemotherapy for cancer. [NCT00042848]. Available at www. clinicaltrials.gov (accessed December 31, 2008). Kaleita TA, Wellisch DK, Graham CA, Steh B, Nghiemphu P, Fort JM, Lai A, Peak S, Cloughesy TF. Pilot study of modafinil for treatment of neurobehavioral dysfunction and fatigue in adult patients with brain tumors. J Clin Oncol 2006; ASCO Meeting Proceedings Part 1;24:18S:1503. Morrow GR, Gillies LJ, Hickok JT, Roscoe JA, Padmanaban D, Griggs JJ. The positive effect of the psychostimulant Modafinil on fatigue from cancer that persisits after treatment is completed. J Clin Oncol 2005; ASCO Meeting Proceedings Part 1:23:16S:8012. Stankoff B, Waubant E, Confavreux C, Edan G, Debouverie M, Rumbach L, Moreau T, Pelletier J, Lubetzki C, Clanet M; French Modafi nil Study Group. Neurology 2005;64:1139–1143. Rabkin JG, McElhiney MC, Rabkin R, Ferrando SJ. Modafinil treatment for fatigue in HIV+ patients: A pilot study. J Clin Psych 2004;65:1688–1695. Bruera E, Ernst S, Hagen N, Spachynski K, Belzile M, Hanson J, Summers N, Brown B, Dulude H, Gallant G. Effectiveness of megestrol acetate in patients with advanced cancer: A randomized, double-blind, crossover study. Cancer Prevent Contr 1998;2:74–78. DeConno F, Martini C, Zecca E, Balzarini A, Venturino P, Groff L, Caraceni A. Megestrol acetate for anorexia in patients with far-advanced cancer: A double-blind controlled clinical trial. Eur J Cancer 1998;34:1705–1709.

Fatigue 135. Simons JP, Aaronson NK, Vansteenkiste JF, Ten Velde GP, Muller MJ, Drenth BM, et al. Effects of medroxyprogesterone acetate on appetite, weight and quality of life in advanced stage non-hormone sensitive cance: A placebo controlled multicenter study. J Clin Oncol 1996;14:1077–1084. 136. Westman G, Bergman B, Albertsson M, Kadar L, Gustavsson G, Thaning L, Andersson M, et al. Megestrol acetate in advanced, progressive, hormone-insensitive cancer. Effects on quality of life: A placebo-controlled, randomised, multicentre trial. Eur J Cancer 1999;35:586–595. 137. O’Shaughnessy JA, Vukelja SJ, Holmes FA, Savin M, Jones M, Royall D, George M, Von Hoff D. Feasibiliity of quantifying the effects of epoetin alfa therapy on cognitive function in women with breast cancer undergoing adjuvant or neoadjuvant chemotherapy. Clin Breast Cancer 2005;5:439–446. 138. Hedenus M, Adriansson M, San Miguel J, Kramer MHH, Schipperus MR, Juvonen E, et al. Efficacy and safety of darbopoetin alfa in anemic patients with lymphoproliferative malignancies: A randomized, double-blind, placebo-controlled study. Brit J Haemat 2003;122:394–403. 139. Kotasek D, Steger G, Faught W, Underhill C, Poulson E, Colowick AB, et al. Darbopoetin alfa administered every 3 weeks alleviates anemia in patients with solid tumors receiving chemotherapy; results of a double-blind, placebo controlled randomized study. Eur J Cancer 2003;39:2026–2034. 140. Smith RE Jr, Tchekmedyian NS, Chan D, Meza LA, Northfelt Dw, Patel R, et al. A dose-and schedule-finding study of darbopoetin apfa for the treatment of chronic anemia of cancer. Brit J of Cancer 2003;88:1851–1858. 141. Monk JP, Phillips G, Waite R, Kuhn J, Schaaf LJ, Otterson GA, Guttridge, D, Rhoades C, Shah M, Criswell T, Caligiuri MA, Villalona-Calero MA. Assessment of tumor necrosis factor alpha blockade as an intervention to improve tolerability of dose-intensive chemotherapy in cancer patients. J Clin Oncol 2006;24:1852–1859. 142. Thomas CR. Enbrel versus placebo with radiation therapy to combat fatigue and cachexia. [NCT00127387]. Available at www.clinicaltrials.gov (accessed December 31, 2008). 143. Bruera E, El Osta B, Valero V, Driver LC, Pei BL, Shen L, Poulter VA, Palmer JL. Donepezil for cancer fatigue: A double-blind, randomized, placebo-controlled trial. J Clin Oncol 2007; 25: 3475–3481. 144. Cruciani RA, Dvorkin E, Homel P, Culliney B, Malamud S, Lapin J, Protneoy RK, Esteban-Cruciani N. L-Carnitine supplementation

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in patients with advanced cancer and carnitine deficiency: A double-blind, placebo-controlled study. J Pain Symptom Manage 2009;37:622–631. Gramignano G, Lusso MR, Madeddu C, Massa E, Serpe R, Deiana L, LaMonica G, Dessi M, Spiga C, et al. Efficacy of L-carnitine administration of fatigue, nutritional status, oxidative stress, and related quality of life in 12 advanced cancer patients undergoing anticancer therapy. Nutrition 2006;22:136–145. Beijer S, van Rossum E, Hupperets PS, Spreeuwenberg C, van den Beuken M, Winkens RA, Ars L, van den Borne BE, de Graeff A, Dagnelie PC. Application of adenosine 5’-triphosphate (ATP) infusions in palliative home care: design of a randomized clinical trial. BioMed Centr Pub Health 2007;7:4–11. Auret KA, Schug SA, Bremner AP, Bulsara M. A randomized, double-blind, placebo-controlled trial assessing the impact of dexamphetamine on fatigue in patients with advanced cancer. J Pain Symptom Manage 2009;37:613–621. Zifko UA. Management of fatigue in patients with multiple sclerosis. Drugs 2004;64:1295–1304. Sarhill N, Walsh D, Nelson KA, Homsi J, Lerand S, Davis MD. Methylphenidate for fatigue in advanced cancer: A prospective open-label pilot study. Am J Hospice Palliat Care 2001;8:187–192. Schwartz AL, Thompson JA, Masood N. Interferon-induced fatigue in patients with melanoma: A pilot study of exercise and Methylphenidate. Oncol Nurs Forum Online Exclusive 2002;29:E85–E90. Barnett ML. Fatigue. In: Otto SE, ed. Oncology Nursing 3rd ed. St. Louis: Mosby, 1997:670. Aistars J. Fatigue in the cancer patient: A conceptual approach to a clinical problem. Oncol Nurs Forum 1987;15:199–207. Piper BF, Lindsey AM, Dodd MJ. Fatigue mechanisms in cancer patients: Developing nursing theory. Oncol Nurs Forum 1987;21:17–23. Winningham ML, Nail LM, Burke MB, Brophy L, Cimprich B, Jones LS, Pickard-Holley S, Rhodes V, St. Pierre B, Beck S, et al. Fatigue and the cancer experience: The state of the knowledge. Oncol Nurs Forum 1994;21:23–36. Berger AM, Mitchell SA. Modifying cancer-related fatigue by optimizing sleep quality. J National Compre Cancer Network 2008;6:3–13. Olson K, Krawchuk A, Quddusi T. Fatigue in individuals with advanced cancer in active treatment and palliative settings. Cancer Nurs 2007;30:E1–E10.


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Dorothy Wholihan and Charles Kemp

Anorexia and Cachexia When my husband stopped wanting to eat, I knew it was the beginning of the end. He made an effort sometimes because he knew how much I worried when he didn’t eat. I brought him food from home but he only took a few bites to please me. I felt so helpless. I watched him just start to waste away, and I knew he would be going sooner than I was ready for. It was heartwrenching.—Wife of a man with metastatic colon cancer

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Key Points Anorexia and cachexia are a distressing part of advanced illness. They are distinct syndromes but clinically difficult to differentiate. Metabolic alterations are the primary cause of anorexia/cachexia syndrome. Assessment and treatment of anorexia and cachexia include determining whether exogenous etiologies such as nausea and pain are involved and vigorous treatment of any such etiologies if present.

Anorexia is defined as the loss of desire to eat1 and is a symptom which accompanies many common illnesses. In acute events, anorexia usually resolves with resolution of the illness, and any weight lost may be replaced with nutritional supplements or increased intake.2 Unchecked, anorexia leads to insufficient caloric intake and protein-calorie malnutrition. Weight loss from this starvation phenomenon usually involves loss of fat, rather than muscle tissue.3 Anorexia is common among patients with advanced cancer and acquired immune deficiency syndrome (AIDS), but also characterizes the clinical course of patients with other chronic progressive disease, such as COPD, CHF, and end-stage renal disease.4 Anorexia and cachexia are two distinct clinical syndromes, but are often intertwined in chronic progressive disease. Cachexia is a complex syndrome that usually involves anorexia, along with significant weight loss, loss of muscle tissue as well as adipose tissue, and generalized weakness.3 The word “cachexia” is derived from the Greek kakos, meaning bad, and hexis, meaning condition or appearance; throughout medical history, cachexia has been associated with the gravely ill.5 The first clinical definition can be traced to Hippocrates earlier than 400 BC: “The flesh is consumed and becomes water . . . the abdomen fi lls with water, the feet and legs swell, the shoulders, clavicles, chest and thighs melt away . . . the illness is fatal.”6 It is important to differentiate the cachexia syndrome from simple anorexia or starvation. Anorexia resulting in decreased intake is usually a component of both phenomena, but cachexia can still be found in the absence of decreased appetite. Anorexia alone does not account for the magnitude of weight loss seen in diseases like cancer, and nutritional supplementation does not restore the lean body mass of cancer anorexia/cachexia syndrome.1 Cachexia is defined as a state of “general ill health and malnutrition, marked by weakness and emaciation”; it occurs in more than 80 of patients with cancer before death and is the main cause of death in more than 20 of such patients.7 In contrast to the starvation seen in anorexia, in cachexia there 211

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is approximately equal loss of fat and muscle, significant loss of bone mineral content, and no response to nutritional supplements or increased intake. Weight loss, regardless of etiology, has a decidedly negative effect on survival, and loss of lean body mass has an especially deleterious effect.2 Evidence-based reviews about prognosis reveal a significant correlation between anorexia/ cachexia and survival in newly diagnosed cancer patients8 and in patients with advanced disease.9 Weight loss is also linked to decreased survival in congestive heart failure,10 chronic obstructive lung disease,5 end-stage renal disease, and AIDS.11 The term anorexia/cachexia syndrome (ACS) has been used mostly in reference to patients with cancer, and is sometimes termed cancer-related anorexia/cachexia (C-ACS).7 Varying terminology has been used to describe the syndrome in other disease states for instance, HIV wasting syndrome, cardiac cachexia, pulmonary cachexia syndrome, and, in patients with advanced renal disease, the ACS has been named “malnutrition-inflammation-cachexia syndrome” (MICS).5 Table 9–1 lists the various terms used to describe anorexia–cachexia and estimated prevalence in different disease states. The pathophysiology and clinical presentation of ACS overlap in these various diseases, even though the underlying metabolic and neurohormonal imbalances may differ. The basic issue of underlying chronic inflammation can be seen in them all.12 For the purposes of this chapter, the term ACS shall refer to all chronic, advanced disease-related anorexia/cachexia syndromes. The anorexia/cachexia syndrome of all diseases is characterized by a variety of signs and symptoms that represent interference with energy intake (decreased appetite, early satiety, taste changes, etc.) and nutritional status, i.e. increased metabolic rate, weight loss, hormonal alterations, muscle and adipose tissue wasting, fatigue and decreased

Table 9–1 Anorexia/Cachexia Syndrome in Various Disease States

performance status.4 Whatever the specific disease, the development of ACS poses a significant clinical problem. It is a grave prognostic sign, but also has a detrimental effect on quality of life, as documented by studies of all the above major diagnoses.5 Th is syndrome leads to serious physical and functional deficits, and can be devastating to selfimage, social and family relationships, and spiritual well being.

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Pathophysiology of ACS The basic etiologies of anorexia/cachexia syndrome are: (1) decreased food intake, (2) metabolic abnormalities, (3) the actions of proinflammatory cytokines, (4) systemic inflammation, (5) neurohormonal dysregulation, (6) tumor by-products, and (7) the catabolic state.7 These result in derangement of function with negative effects on survival and quality of life. There is within some of these mechanisms a mutually reinforcing aspect; for example, anorexia leads to fatigue, fatigue increases anorexia, anorexia increases fatigue, and so on. Table 9–2 summarizes the mechanisms and effects of ACS. The anorexia/cachexia syndrome is categorized as primary or secondary, depending on its etiology. Primary ACS results from endogenous metabolic abnormalities such as cytokine production which stimulates chronic inflammation and resulting catabolism. The syndrome is called secondary if it results from exogenous etiologies, caused by symptoms which interfere with the intake or absorption of nutrients. Examples of such interfering symptoms are pain, nausea, intestinal obstruction, or psychosocial distress.7

Table 9–2 Mechanisms and Effects of ACS Mechanisms

Effect

Loss of appetite

Generalized host tissue wasting, nausea or “sick feeling,” loss of socialization and pleasure at meals

Reduced voluntary motor activity (fatigue)

Skeletal muscle wasting and inanition (fatigue) Skeletal muscle wasting and asthenia (weakness)

Disease

Terminology

Estimated Prevalence: Highest In Advanced Disease

Cancer

Cancer-related ACS

Up to 86

CHF

Cardiac cachexia

16–36

COPD

Pulmonary cachexia syndrome

30–70

HIV disease

HIV wasting syndrome

10–35

Reduced rate of muscle protein synthesis

Renal disease

MIC: MalnutritionInflammation Cachexia syndrome

30–60

Decreased immune response

Increased susceptibility to infections

Decreased response to therapy

Earlier demise and increased complications of illness

Sources: Adapted from Bennani-Baiti & Davis (2008), reference 1; Morley et al. (2006), reference 3; Tan & Fearon (2003), reference 5.

Sources: Adapted from Bennani-Baiti & Davis (2008), reference 1; Morley et al. (2006), reference 3; Strasser (2005), reference 13.

Anorexia and Cachexia

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Primary ACS

Physical Symptoms

The pathogenesis of primary ACS is multifactorial, complex, and incompletely understood. Accumulating evidence suggests that chronic illness disrupts the homeostatic function of the central nervous system leading to profound metabolic changes. Peripheral input causes the awareness of threats such as a growing tumor, or cardiac or renal failure, and this promotes a catabolic effect which results in increased energy expenditure, reduced intake, increased muscle breakdown, and loss of adipose tissue.4

A number of physical symptoms of advanced disease may contribute to or cause anorexia, including pain, dysguesia (abnormalities in taste, especially aversion to meat), ageusia (loss of taste), hyperosmia (increased sensitivity to odor), hyposmia (decreased sensitivity to odor), anosmia (absence of sense of smell), stomatitis, dysphagia, odynophagia, dyspnea, hepatomegaly, splenomegaly, gastric compression, delayed emptying, malabsorption, intestinal obstruction, nausea, vomiting, diarrhea, constipation, inanition, asthenia, various infections (see below), and early satiety. Alcoholism or other substance dependence may also contribute to or cause anorexia. Primary or metastatic disease sites have an effect on appetite, with cancers, such as gastric and pancreatic, having direct effects on organs of alimentation.15 In general, people who are seriously ill and/or suffering distressing symptoms have poor appetites. In addition, in cancer, metabolic paraneoplastic syndromes such as hypercalcemia or hyponatremia (SIADH) may also cause anorexia or symptoms such as fatigue that contribute to anorexia. Patients with HIV disease may also develop primary muscle disease, leading to weight loss. Many cancer or human immunodeficiency virus (HIV) treatments have deleterious effects on appetite or result in side effects leading to anorexia and/or weight loss.15,16 Each of these should be ruled out as a contributing cause of anorexia and, if present, treated as discussed elsewhere in this book.

Metabolic Alterations Metabolic alterations are common in cancer and other diseases and are thought to be due in large part to the systemic inflammatory response and stimulation of cytokine production (principally tumor necrosis factor alpha [TNFα), prostaglandins [PG], interleukin-1 [IL-1], interleukin-6 [IL-6], interferon α [IFN-α], and interferon β [IFN-β]). Other catabolic tumor-derived factors thought to play a role in cachexia include proteolysis-inducing factor (PIF) and lipid mobilizing factor (LMF).7 Major metabolic alterations include glucose intolerance, insulin resistance, increased lipolysis, increased skeletal muscle catabolism, negative nitrogen balance and, in some patients, increased basal energy expenditure.7 A number of different theories regarding the pathophysiology of ACS are under study. The maladaptive activation of oxidative processes which may be seen in chronic illness are also thought to be partially responsible for the cachexia syndrome.12 Recent advances in genomics suggest that specific genetic polymorphisms contribute to the prominent inflammatory component of this problem.12 The melanocortin system of the hypothalamus which coordinates appetite and feeding is influenced by peptide hormones such as leptin7 and ghrelin.13 Disturbances in these hormonally regulated feedback loops appear to play a role in ACS. Other potential mediators of ACS include testosterone, insulin-like growth factor-1, myostatin, and adrenal hormones.3 In sum, the underlying pathophysiological processes of ACS are complex and not yet fully understood. Researchers postulate that the above mechanisms play different roles of varying importance in different diseases.7 The relative importance of these factors and the interplay among them remains unclear. However, irrespective of the underlying mechanism or specific medical illness, patients experience progressive worsening of their clinical condition, and ultimately they perish soon after the development of cachexia.11

Secondary ACS Secondary causes of ACS include exogenous factors that can frequently lead to weight loss, anorexia, fatigue, or other symptoms associated with this wasting syndrome.

Treatment Side Effects Many interventions used to treat advanced chronic disease have adverse effects on nutritional status. The many medications used to treat HIV/AIDS and its sequela are an excellent example. Despite the success of HAART in curbing ACS in many patients, the myriad of medications involved in the prevention and treatment of AIDS complications often lead to anorexia and malabsorption themselves.17 Cytotoxic drugs can be emetogenic, cause taste changes, or cause other GI side effects such as oral stomatitis and diarrhea.16 Radiotherapy can also lead to significant side effects, including nausea, vomiting, diarrhea, xerostomia, and severe fatigue.16 Among patients with advanced renal disease on dialysis, there is a high prevalence of protein-energy malnutrition.18

Psychological and/or Spiritual Distress Psychological and spiritual distress are often overlooked causes of anorexia. The physical effects of the illness and/or treatment coupled with psychological responses (especially anxiety and depression) and spiritual distress, may result in little enthusiasm or energy for preparing or eating food. As weight is lost, and energy decreases, changes in self image occur. Appetite and the ability to eat are key determinants of physical and psychological quality of life. 15 Cultural influences must always be considered. For example, for Southeast

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and East Asians, some degree of obesity is perceived as a sign of good health and weight loss is seen as a clear sign of declining health.19 For many patients, the net result of ACS and weight loss constitute a negative-feedback loop of everincreasing magnitude and increased suffering in multiple dimensions. Clinicians evaluating patients with anorexia are encouraged to review basic principles for the assessment and management of depression, as covered in detail in Chapter 20. Treatment of underlying depression can improve appetite considerably.

Oral Issues Special attention should be directed toward the oral cavity of patients with advanced disease. The fit of dentures may change with illness, or already poorly fitting dentures may not be as well tolerated in advanced disease. Dental pain may be overlooked in the context of terminal illness. Oral and esophageal infections and complications increase with disease progression and immunocompromise. Xerostomia and worsening of tooth decay can occur with radiation therapy. Basic oral hygiene can often be neglected in the setting of advanced illness. Aphthous ulcers, mucositis, candidiasis, aspergillosis, herpes simplex, and bacterial infections cause oral or esophageal pain and, thus, anorexia.15,16,20

addition, simple assessment questions about change in appetite can be transformed into a numerical assessment scale. Intake can be measured retrospectively by recall or prospectively by calorie count. Detailed exploration with appropriate physical examination can identify associated factors (i.e., dysphagia, nausea, oral issues, or pain). Open ended questions can be helpful in eliciting specific characteristics of the eating problem. A variety of methods can be used to assess nutritional status, from basic tools such as the Subjective Global Assessment for Nutrition (SGA) to sophisticated anthropometric and laboratory testing.22 Common lab values may reveal decreased serum albumin, a prognostic indicator of increased morbidity and mortality, as well as changes in several electrolyte and mineral levels.16 Perhaps the most important component of assessment in ACS involves the patient’s goals of care. Since palliative care encompasses the entire disease continuum, stage of illness and goals of care should be clearly determined before detailed assessment and intervention are planned or initiated. It is imperative to evaluate the degree of suffering or distress experienced as a result of the ACS. A cost/benefit analysis should be undertaken to determine if a diagnostic workup is valuable in light of the effort, cost, or discomfort it may incur. At some point in the illness, even basic assessments, such as weight, serve only to decrease the patient’s quality of life. Assessment parameters are summarized in Table 9–3.

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Assessment Anorexia and weight loss may begin insidiously with slightly decreased appetite and slight weight loss characteristic of virtually any illness. As the disease progresses and comorbid conditions increase in number and severity, anorexia and malnutrition increase, and a mutually reinforcing process may emerge. For example, poor appetite and intake leads to fatigue, which in turn leads to more pronounced anorexia and malnutrition, which then leads to increased fatigue and weakness that may accelerate the metabolic processes of ACS. With ACS common, and in many cases inevitable, among patients with advanced or terminal illness, identifying specific causes is an extremely challenging task. There is of yet no clear and widely accepted defi nition or diagnostic criteria for ACS. There have been standardized tools for the general assessment of nutrition status, but none specific to ACS for palliative care.21 Nevertheless, anorexia from some etiologies is treatable; hence, assessment of the possible presence of etiologies noted above is integral to quality palliative care. Assessment parameters are used according to the patient’s ability to tolerate and benefit from the assessment. Assessment parameters should include appetite, nutritional intake, and basic nutritional status.21 Appetite is a component of several well validated tools of global symptom assessment, such as the Edmonton Symptom Assessment Scale23 or the Memorial Symptom Assessment Scale.24 In

Table 9–3 Assessment Parameters in Anorexia and Cachexia The patient is likely to report anorexia and/or early satiety. Weakness (asthenia) and fatigue are present. Mental status declines, with decreased attention span and ability to concentrate. Depression may increase concurrently. Inspection/observation may show progressive muscle wasting, loss of strength, and decreased fat. There often is increased total body water, and edema may thus mask some wasting. Weight may decrease. Weight may reflect nutritional status or fluid accumulation or loss. Increased weight in the presence of heart disease suggests heart failure. Triceps skinfold thickness decreases with protein calorie malnutrition (PCM, skinfold thickness and mid-arm circumference vary with hydration status). Mid-arm muscle circumference decreases with PCM. Serum albumin concentrations decrease as nutritional status declines. Albumin has a half-life of 20 days; hence, it is less affected by current intake than other measures. Other lab values associated with anorexia/cachexia syndrome include anemia, increased triglycerides, decreased nitrogen balance, and glucose intolerance.1,3,7,13 Sources: Bennani-Baiti & Davis (2008), reference 1; Morley, et al. (2006), reference 3; Innui (2002), reference 7; Strasser (2005), reference 13.

Anorexia and Cachexia Assessment also includes a psychosocial evaluation, particularly concerning food, determining usual intake patterns, food likes and dislikes, and the meaning of food or eating to the patient and family. Too often, a family member attaches huge significance to nutritional intake and exerts pressure on the patient to increase intake: “If he would just get enough to eat.” Giving sustenance is a fundamental means of caring and nurturing, and it is no surprise that the presence of devastating illness often evokes an almost primitive urge to give food. In some cases the patient is less troubled than the family by poor nutritional intake. Clinicians should explore the meaning of feeding in the context of the family’s cultural and religious background, and help identify other ways in which the family can participate in caring for the patient.25

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Interventions The palliative approach to care of the patient with ACS focuses on improving patient comfort and minimizing distress caused by the anorexia and weight loss. Assisting patients and families to adapt to progressive symptoms and alleviating symptoms which may be exacerbating the problem are two foci of interventions. Interventions may combine a variety of approaches, including exogenous symptom management, nutritional support, enteral and parenteral nutrition, pharmacological management, and psychosocial support.

(Exogenous) Symptom Management The presence of symptoms that may cause or exacerbate secondary anorexia and weight loss should be evaluated. For example, if anorexia is due to an identifiable problem, such as pain, nausea, fatigue, depression, or taste disorder, appropriate interventions as discussed elsewhere in this book should be instituted.

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Nutritional Support Oral nutritional support, to increase intake or to maximize nutritional content, may be helpful to some extent, especially early in the disease process or in specific disease states. For example, there is strong evidence that nutritional supplementation can be effective in patients with COPD.5 However, cancer related ACS studies have been disappointing. The current evidence reveals that improving the quantity and quality of nutrition does not improve lean body mass in patients with cancer.27 A recent systematic review on non-pharmacologic interventions found that interventions which were able to increase protein and calorie intake showed no resulting improvement in nutritional status, tumor response, survival, or quality of life.29

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Helping family members understand nutritional needs and limitations in terminal situations is essential. Consultation with a nutritionist is usually warranted for the purpose of education and recommendation of appropriate supplements. General guidelines for nutritional interventions include the following:16,19, 22, 25–28 • The nutritional quality of intake should be evaluated and, if possible and appropriate, modified to improve the quality. Patients who are not moribund may benefit from supplementary sources of protein and calories. Clinicians should determine the meaning to the patient and family of giving, taking, and refusing food. Strong and even unconscious beliefs about food are difficult to modify, and many families require education and frequent support in the face of helplessness and frustration related to ever-diminishing intake. • Culturally appropriate or favored foods should be encouraged. Preserving cultural or social traditions around meals may also be helpful. Families should be encouraged to share mealtime with patients or continue habits such as a glass of wine with meals, if medically appropriate. • Small meals, on the patient’s schedule and according to the taste and whims of the patient, are helpful, at least emotionally, and should be instituted early in the illness so that eating does not become burdensome. • Foods with different tastes, textures, temperatures, seasonings, degrees of spiciness, degrees of moisture, and colors, for example, should be tried, but the family should be cautioned against overwhelming the patient with a constant parade of foods to try. Room temperature and less spicy foods are preferred by many patients. • Different liquids should also be tried. Cold, clear liquids are usually well tolerated and enjoyed, though cultural constraints may exist. For example, patients with illnesses that are classified as “cold” by some Southeast Asians and Latinos are thought to be harmed by taking drinks or foods that are either cold in temperature or thought to have “cold” properties. • Measures as basic as timing intake may also be instituted. Patients who experience early satiety, for example, should take the most nutritious part of the meal first. Filling fluids without nutritional value (such as carbonated soda) should be avoided at mealtime Oral care must be considered an integral part of nutritional support. Hygiene and management of any oral pain are essential in nutritional support. Procedures, treatments, psychological upsets (negative or positive), or other stresses or activities should be limited prior to meals.

Enteral and Parenteral Nutrition Enteral feeding (via nasoenteral tube, gastrostomy, or jejunostomy) may be indicated in a small subset of terminally

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ill patients.Many clinicians postulate that there exist certain patients with a relevent starvational secondary component to their ACS, and that these patients may benefit from invasive nutritional interventions. Examples include patients with head and neck cancer with severe dysphagia who are undergoing radiation therapy, patients with slow growing tumors causing bowel obstruction, patients undergoing certain surgeries for UGI malignancies, or those undergoing bone marrow transplant.12 However, the evidence remains insufficient to recommend specific guidelines, and the clinical indications in non-cancer diagnoses are less defined.26 The use of parenteral nutrition in ACS has been controversial within the palliative care field.17,30 Some guidelines recommend the use of PPN or TPN for a subset of patients who meet the following criteria: total gastrointestinal failure, limited life expectancy were TPN not initiated, expected survival of more than a few months, and sufficient performance status, QOL, and home environment for the successful use of the intervention.30 However, sytstematic reviews evaluating the use of TPN in cancer patients found very limited benefit.22 The use of parenteral nutrition should be carefully assessed on an individual basis. Although it may have clinical implications in a few patients, it has greater potential for complications than does enteral nutrition, seldom improves outcomes, and thus is rarely indicated in terminally ill patients with advanced disease.2,13 The choice of nutritional support depends on the cause of the malnutrition, the expected survival, goals of care and planned therapy, and patient preferences. General consensus within palliative care is that the indications for parenteral nutrition are limited and routine use should be discouraged.13

Pharmacological Interventions A plethora of pharmacologic studies have targeted cancerrelated ACS,1,7,26 and recent work includes other chronic advanced disease.4,11,13,14 The most frequently prescribed and

most studied drug is Megestrol Acetate (MA), a synthetic progestogen agent which acts to increase appetite and weight gain. Although the mechanisms by which MA operate are not well understood, most hypothesis suggest that the medication acts on cytokines, inhibiting the tumor necrosis factor.30 A recent Cochrane review31 reviewed 34 trials which examined different aspects of the use of MA to stimulate appetite and weight gain. The review found that MA significantly increased both appetite and weight in cancer patients, but there was not enough evidence to make definitive conclusions about its effect on quality of life, the optimal medication dose, or the effects of MA on patients with other underlying diagnoses. Side effects of Megestrol Acetate include hypoadrenalism, hypogonadism, and most concerning, thrombosis and DVT. However, the recent systematic reviews30,31 found the rate of adverse effects to be insignificant, and concluded that MA is an effective and safe medication for improving appetite and weight in cancer patients. The medication has also shown positive results in patients with COPD and AIDS.32,36 The benefit of Megestrol in other non-cancer diagnoses remains unclear; more study is needed to make conclusive recommendations. However, it has not been studied in heart failure, and more study is needed to make conclusive recommendations in non-cancer diagnoses. Glucocorticoids are widely used in the palliative care setting to address a number of symptoms, including pain, dyspnea, and nausea.15 In cancer patients, steroids have been shown to have a limited positive effect (up to four weeks) on appetite, nutritional intake, and sense of well being, but no demonstrable effect on weight.7 The wide range of side effects, including adrenal suppression, hyperglycemia, and peptic ulceration may preclude its use in some patients. Cannabinoids have shown similar positive effects: improved appetite and mood, but without weight gain.7 However, the CNS side effects also limit use of this medication. Commonly used pharmacological options with indications and notable side effects are presented in Table 9–4.

Table 9–4 Medications Commonly Used in ACS Medication Effects and Common Dosing

Indications

Side Effects and Considerations

Progestational agents esp: Megestrol acetate 160–800 mg/day

Improves appetite, weight gain, and sense of well being

Thromboembolic events, glucocorticoid effects, GI upset, heart failure, menstrual abnormalities, tumor flare

Corticosteroids e.g.: Decadron 4 mg/day

Improves appetite and sense of well being

Immunosuppression, masks infection, HTN, myopathy, GI disturbances, dermal atrophy, increased ICP, electrolyte imbalances, avoid abrupt cessation

Cannabinoids Dronabinol 5–20 mg/day

Increases appetite and decreases anxiety

Somnolence, confusion, dysphoria, especially in elderly

Metoclopramide 10 mg before meals

Improves gastric emptying, decreases early satiety, improves appetite

Diarrhea, restlessness, fatigue, drowsiness, extrapyrimidal S/E

Sources: Innui (2002), reference 7; Rosenzweig (2006), reference 16; Berenstain & Ortiz (2008), reference 32; Bruera et al. (2005), reference 33.

Anorexia and Cachexia

Table 9–5 Components of a Multimodal Approach to ACS 1. Early and ongoing determination of goals of care. 2. Optimal treatment of underlying disease according to goals of care. 3. Prevention, recognition, and prompt treatment of exogenous causes. 4. Guidance from nutrition specialists. 5. Appropriate pharmacologic interventions. 6. Resistance exercise as appropriate. 7. Compassionate counseling to patient, family, and significant caregivers. Sources: Rosenzweig (2006), reference 16; Fainsinger & Pereira (2005), reference 22; Institute for Clinical Systems Improvement (2008), reference 25; Andrew et al. (2007), reference 28; Zinna & Yarasheski (2003), reference 35.

Future directions in pharmacologic management target various pathways implicated in ACS. Neurohormonal manipulation, cytokine inhibition, and anti-inflammatory interventions all show some promise in clinical trials. The peptide hormone ghrelin is a circulating mediator of appetite and has been implicated in ACS. Early trials which supplement ghrelin in various illnesses have shown shortterm increases in caloric intake in patients with cancer and renal failure, and improved lean body mass and exercise capacity in those with COPD and CHF.14 Thalidomide is a controvesial medication of interest to ACS researchers. Previously withdrawn from the market due to its teratogenic side effects, thalidomide is now under study in advanced disease due to its potent anti-emetic and TNF inhibitor activity. Although its safety profi le remains a concern, this medication may be a useful option and is under study.1,33,34 Other medications under study include melanocortin (thought to decrease circulating TNF), various anabolic steroids, such as growth factor, insulin-like growth factor, and testosterone derivatives, N-3 polyunsaturated fatty acids (as found in fish oils), B-adrenergic agonists, and anti-inflammatory medications.7,11,12

Multimodal Approach The devastating consequences, pathophysiologic complexities, and treatment resistance of ACS lead inevitably to consideration of a multimodal approach.15,16,22,25,28 A summary of what should be included in this approach is summarized in Table 9–5.

9= CASE STUDY Some Issues Commonly Associated with ACS Mr. WD was an 84-year-old man with hormone refractory prostate cancer treated with radiation therapy for bone metastasis in his thoracic spine. He was residing in a longterm care facility while undergoing rehabilitative therapy

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for deconditioning. A community hospice consulted on his care. Although Mr. D’s previous symptom of bone pain was well controlled on opioids, the staff noted that he had become less energetic, more withdrawn, staying in his room, and eating less. His weight had dropped eight pounds in the past month. Six months previously he had developed a left DVT while on Megestrol Acetate, so this was not a therapeutic option. Upon closer assessment, the nurse discovered that Mr. D had been experiencing opioid-induced constipation and fatigue (felt to be related to his past radiation and underlying anemia of chronic disease). He complained of anorexia and early satiety. He was started on Decadron 4 mgm QD, and his constipation resolved with an improved bowel regimen. The patient initially felt more energy and slight increase in appetite, but this was short lived, and within two weeks, he refused to get out of bed and barely interacted with staff and family. At this point, he only took about ½ can of supplement drink for each meal. His wife became despondent and frustrated that he was “giving up.” The staff performed a basic screen and felt that the patient was depressed. He was started on Methylphenidrate 2.5 mgm at 8 AM and 12 PM. with resulting increase in activity, mood, and appetite. He continued to lose weight, but with counseling, his wife understood that his anorexia and weight loss were mostly related to his underlying cancer. The patient’s daughter arrived from out of state to assist with care, and he was able to return home where he died peacefully three weeks later. o]

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Summary Increasingly, ACS is recognized as a serious aspect of advanced or terminal illness and as an area requiring further research, especially with respect to (1) the pathophysiology of cachexia and (2) increasing treatment options. The management of ACS is complicated by numerous obstacles, including lack of clear definition and guidelines, inconsistency in assessment and management strategies, and knowledge deficits about this complex clinical syndrome in health professionals and caregiving families. The challenge is compounded by the interwoven emotional symbolism of food and nurturance. As palliative care providers, we should strive to support, understand, and translate the developing evidence which guides our care . The complex and potentially devastating impact of this problem demands a holistic response. Palliative care nurses are optimally situated to coordinate and drive the necessary multidisciplinary approach to address anorexia and cachexia in advanced, progressive disease. Current understanding of ACS includes the following: • Anorexia and cachexia are distinct syndromes but clinically difficult to differentiate.

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• Anorexia is characterized by decreased appetite that may result from a variety of causes (including unmanaged symptoms such as nausea and pain) It results primarily in loss of fat tissue, and resultant weight loss is reversible. • Cachexia is a complex metabolic syndrome thought to result from the production of proinflammatory cytokines such as TNF and IL-1. In cachexia, there is approximately equal loss of fat and muscle and significant loss of bone mineral content. Weight loss from cachexia does not respond to nutritional interventions. • Assessment and treatment of ACS include determination of whether exogenous etiologies such as nausea or pain are involved, the vigorous treatment of any such etiologies, and nutritional support if indicated. • Treatment of cachexia is unsatisfactory, but some temporary gains may occur with progestational agents, especially megestrol acetate and a multimodal approach such as discussed above.

REFERENCES 1. Bennami-Baiti N, Davis MP. Cytokines and the cancer anorexia cachexia syndrome. Am J Hosp Palliat Care 2008;25: 407–409. 2. Van Halteran HK, Bongaerts GPA, Wagener DJ. Cancer cachexia: what is known about its etiology and what should be the current treatment approach? Anticancer Res 2003; 23:5111–5116. 3. Morley JE, Thomas DR, Wilson MG. Cachexia: pathophysiology and clinical relevance. J Clin Nutr 2006;83:735–743. 4. Laviano A, Innui A, Marks DL, Meguid MM, Pichard C, Fanelli Fr, Seelander M. Neural control of the anorexia– cachexia syndrome. Am J Physiol Endrocrinol Metab 2008;298:E1000–E1008. 5. Tan BH, Fearon KC. Cachexia: prevalence and impact in medicine. Curr Opin Clin Nutr Metab Care 2003;11:400–407. 6. Doehner W. Cardiac cachexia in early literature: a review of research. Int J Cardiol 2002;85:7–14. 7. Innui A. Cancer anorexia–cachexia syndrome: current issues in research and management. CA: Cancer J Clin 2002;52: 72–91. 8. Hauser C, Stockler M, Tattersall M. Prognostic factors in patients with recently diagnosed incurable cancer: a systematic review. Support Care Cancer 2006;14:999–1011. 9. Maltoni M, Caraceni A, Brunelli C, Broeckaert B, Christakis N, Eychmueller S, Glare P, Nabal M, Vigano A, Larkin P, DeConno F, Hanks G, Kaasa S. Prognostic factors in advanced cancer patients: evidence-based clinical recommendations—a study by the steering committee of the European Association for Palliative Care. J Clin Oncol 2005;23:6240–6248. 10. Anker S, Negrassa A, Coat AJ, Afzal R, Poole-Wilson RA, Cohn JN, Yusuf S. Prognostic importance of weight loss in chronic heart failure and the affect of treatment with angiotensin-converting enzyme: an observational study. The Lancet 361:1077–1083.

11. Lainscak M, Podbregar M, Anker SD. How does cachexia influence survival in cancer, heart failure, and other chronic diseases? Curr Opin Supp Pall Care 2007;1:299–305. 12. Kalantar-Zadeh K, Anker SD, Horwich TB, Fonarow GC. Nutritional and anti-inflammatory interventions in chronic heart failure. Am J Card 2008;101:89E–103E. 13. Strasser F. Pathophysiology of the anorexia/cachexia syndrome. In: Doyle D, Hank G, Cherny NI, Calman K, eds. Oxford Textbook of Palliative Medicine, 3rd ed. Oxford: Oxford University Press, 2005:520–530. 14. Ashby D, Choi P, Bloom S. Gut hormones and the treatment of disease cachexia. Proc Nut Soc 2008;67:263–269. 15. Cunningham RS. The anorexia–cachexia syndrome. In: Yarbro CH, Frogge MH, Goodman M, eds. Cancer Symptom Management, 3rd ed. Boston: Jones and Bartlett, 2004: 137–167. 16. Rosenzweig MQ. Anorexia/cachexia. In: Camp-Sorrell D, Hawkins RA, eds. Clinical Manual for the Oncology Advanced Practice Nurse, 2nd ed. Pittsburgh: Oncology Nursing Society, 2006. 17. Woodruff R, Glare P. AIDS in adults. In: Doyle D, Hanks G, Cherny NI, Calman K, eds. Oxford Textbook of Palliative Medicine, 3rd ed. Oxford: Oxford University Press, 520–530. 18. Kalantar-Zadeh K, Ikizler TA, Block G. Malnutrition– inflammation–cachexia syndrome in dialysis patients: causes and consequences. Am J Kidney Dis 2003;42:864–881. 19. Kemp C, Rasbridge L. Refugee & Immigrant Health. Cambridge: Cambridge University Press, 2004. 20. Stroll RA, Camp-Sorrell D. Stomatitis/xerostomia. In: CampSorrell D, Hawkins RA, eds. Clinical Manual for the Oncology Advanced Practice Nurse, 2nd ed. Pittsburgh: Oncology Nursing Society, 2006. 21. Churm D, Andrew IM, Holden K, Hildreth AJ, Hawkins C. A questionnaire study of the approach to the anorexia–cachexia syndrome in patients with cancer by staff in a district general hospital. Support Care Cancer, 2009;17:503–507. 22. Fainsinger RL, Pereira J. Clinical assessment and decisionmaking in cachexia and anorexia. In: Doyle D, Hanks G, Cherny NI, Calman K, eds. Oxford Textbook of Palliative Medicine, 3rd ed. Oxford: Oxford University Press, 200: 520–530. 23. Bruera E, The Edmonton Symptom Assessment Scale: A simple method for the assessment of palliative care patients. J Pall Care 1991;2:6–9. 24. Chang VT, Hwang SS, Kasimis B, Thaler B. Shorter symptom assessment instruments: The Condensed Memorial Symptom Assessment Scale (CMSAS). Cancer Invest 2004; 22:526–536. 25. Institute for Clinical Systems Improvement. Clinical Practice Guideline: Palliative Care 2008. Retrieved November 15 from: http://www.guideline.gov/summary/summary.aspx?doc_id=1 2618&nr=0065268&string=cachexia. 26. Lennie TA, Nutritional self-care in heart failure: state of the science. J Cardiovasc Nurs 2008;23:197–204. 27. Brown JK. A systematic review of the evidence on symptom management of cancer-related anorexia and cachexia. Oncol Nurs Forum 2002;29:517–532. 28. Andrew I, Hawkins C, Waterfield K, Kirkpatrick G, Williams S. Anorexia–cachexia syndrome—improving the patient experience. Hosp Pharmacist 2007;14:265–266. 29. Yavuzsen T, Davis MP, Walsh D, LeGrand S, Lagman R. Systematic review of the treatment of cancer-associated anorexia and weight loss. J Clin Oncol 2005;23:8500–8511.

Anorexia and Cachexia 30. Mirhosseini MD, Fainsinger RL, Baracos V. Parenteral nutrition in advanced cancer: indications and clinical practice guidelines. J Pall Med 8:914–918. 31. Lopez AP, Figuls MR, Cuchi GU, Berenstain EG, Pasies BA, Alegre MB, Herdman M. Systematic review of megestrol acetate in the treatment of anorexi cachexia syndrome. J Pain & Symptom Mange 27:360–369. 32. Berenstain EG, Ortiz Z. Megestrol aceate for treatment of anorexia–cachexia syndrome. Cochrane Database Syst Rev 2008;4:1–8. 33. Bruera E, Sweeney C. Pharmacological interventions in cachexia and anorexia. In: Doyle D, Hanks G, Cherny NI,

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Calman K, eds. Oxford Textbook of Palliative Medicine, 3rd ed. Oxford: Oxford University Press, 2005:520–530. 34. Tassineri D, Santelmo C, Tombesi P, Sartori S. Thalidomide in the treatment of cancer cachexia. J Palliat Care 2008;24: 187–189. 35. Zinna EM, Yarasheki KE. Exercise treatment to counteract protein wasting of chronic diseases. Curr Opin Clin Nutr Metab Care 2003;6:87–93. 36. Weisberg J, Wanger J, Olson J, Streit B, Fogaraty C, Martin T, Casaburi, R. Megestrol acetate stimulates weight gain and ventilation in underweight COPD patients. Chest 2002;121: 1070–1078.


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Cynthia King and Dana Tarcatu

Nausea and Vomiting I feel so nauseated all the time. I am miserable. Even the smell of food makes me retch. It is hard on my family. —Palliative care patient

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Key Points Nausea and vomiting are common and significant symptoms experienced by over 50 of patients with advanced diseases. There are multiple receptors in the central nervous system which are involved in the development of nausea. Blocking of these receptors forms the basis of antiemetic medications. These receptors are: dopaminergic, muscarinic, cholinergic, histaminic, and serotonergic. The choice of antiemetic therapy should be based on the presumed underlying cause of the nausea, i.e. a mechanismbased approach. Nurses in all settings can play an important role in advancing the knowledge and skills related to nausea and vomiting in palliative care.

Nausea and vomiting are symptoms commonly experienced by patients with advanced disease. The majority of available research on nausea and vomiting deals with cancer patients.1 Therefore, this chapter will use advanced cancer patients as a model for assessment and treatment of nausea and vomiting, but these principles can be extrapolated to other patients with advanced non-oncological diseases. For cancer patients, nausea and vomiting may be experienced secondary to the underlying malignancy, as well as to the frequent treatment toxicities. To date, most research has been focused on treatment-induced nausea and vomiting in patients receiving chemotherapy used either with curative or palliative intent. Unfortunately, there is a paucity of literature on the assessment and management of nausea and vomiting in cancer patients who are experiencing these symptoms from causes other than chemotherapy or terminal illness.2 Research has shown that over 50 of patients with advanced cancer experience nausea and/or vomiting. These symptoms are more common in patients under 65 years old, in women, and in patients with cancer of the gastro-intestinal tract or breast. For stomach cancer, the high frequency may be due to local causes such as gastric outlet obstruction. For breast cancer, the causes may be multifactorial and include metabolic abnormalities like hypercalcemia, increased intracranial pressure from brain metastases, medications, and gender.3–5 Ross and Alexander5 describe the “11 Ms” of nausea and vomiting in terminally ill patients. These include: (1) metastases (cerebral or liver), (2) meningeal irritation, (3) movement (causing vestibular stimulation), (4) mentation (e.g., cerebral cortex), (5) medications (e.g., opioids, chemotherapy), (6) mucosal irritation (e.g., hyperacidity, gastroesophageal reflux), (7) mechanical obstruction (e.g., constipation, obstipation, tumor), (8) motility (e.g., ileus), (9) metabolic imbalance (e.g., hypercalcemia, hyponatremia), (10) microbes (e.g., esophagitis), and (11) myocardial dysfunction (e.g., ischemia, congestive heart failure). The level of distress associated with nausea and vomiting may be profound.6,7 If these symptoms are left untreated, 221

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they can interfere with usual daily activities, increase anxiety and other symptoms, and impair quality of life (QOL).7–13 It is essential that these symptoms be adequately treated throughout the trajectory of cancer care and across all settings. As more aggressive symptom control is provided in outpatient settings like patients’ homes and hospices, it is important to involve the patients and their families in the management of nausea and vomiting. Nurses who provide palliative care to cancer patients of any age and in any setting need to have the skills to adequately assess for nausea and vomiting, and provide appropriate pharmacologic and nonpharmacologic interventions.10 Teaching of self-care to patients and families is essential, as is the evaluation of the outcomes of all interventions. The approach must be practical, with the goal being relief of symptoms as soon as possible. Management should be “mechanism based” and reflect the most likely underlying cause of the nausea and vomiting.

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Nausea and Vomiting and Quality of Life The distress and disruption in daily activities caused by nausea and vomiting impairs QOL for patients with advanced disease. Although there is controversy over the number and exact dimensions of QOL, the City of Hope National Medical Center QOL model includes four dimensions: physical well-being, psychological well-being, social well-being, and spiritual well-being.14 The impact of nausea and vomiting is reflected on one or all of the four dimensions of QOL (Figure 10–1).15 Therefore adequate management of nausea and vomiting can positively affect all dimensions of a patient’s QOL. The patient may regain a sense of control over his or her body and life, anxiety and fear as well as fatigue may decrease, some degree of appetite may be regained, and there may be an increase in the patient’s physical, social, and cognitive functioning even at the end of life. Caregiver burden may also be markedly lessened.13,15

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Conceptual Concerns Related to Nausea and Vomiting To thoroughly examine the problem of nausea and vomiting in palliative care, it is important to be clear about certain concepts. Symptoms such as nausea and vomiting are composed of subjective components and dimensions unique to each patient. Symptoms are different from signs, which are objective and can be observed by the health care professional.16,17 Symptom occurrence is comprised of the frequency, duration, and severity with which the symptom presents.13 Symptom distress involves the degree or amount of physical, mental or emotional upset and suffering experienced by an individual. This is different from symptom occurrence.16,17 Lastly, symptom experience involves the individual’s perception and response to the occurrence and distress of the symptom.16,17

Physical Well-Being Nutritional loss Fluid and electrolyte imbalance Fatigue Functional ability Self-care

Psychological Well-Being Distress Anxiety Fear Happiness Enjoyment

Nausea and Vomiting

Social Well-Being Roles Relationships Affection/sexual function Caregiver burden

Spiritual Well-Being Meaning of illness Suffering

Figure 10–1. The effect of nausea and vomiting on the domains of quality of life (QOL). Source: Grant (1997), reference 15, used with permission.

The terms “nausea” and “vomiting” represent clearly distinct concepts. Unfortunately, terms used to describe them are frequently used interchangeably. This may result in confusion during assessment, measurement, treatment, or patient and family education. Nausea is a subjective symptom involving an unpleasant sensation experienced in the back of the throat and the epigastrium, which may or may not result in vomiting.16–19 Other terms used by patients include “sick to my stomach,” “butterflies,” “queasiness” and “fish at sea.” The symptoms of increased salivation, dizziness, light-headedness, difficulty swallowing, and tachycardia may accompany the feeling of nausea. Patterns of nausea include acute, delayed, and anticipatory. Acute nausea occurs within minutes or hours after events such as having chemotherapy. Delayed nausea generally occurs at least 24 hours after events like chemotherapy and may last for several days. Anticipatory nausea occurs before the actual stimulus and develops only after an individual has had a previous bad experience with an event such as chemotherapy that resulted in nausea or vomiting.16,17,19–22 Vomiting is often confused with nausea but is, in fact, a separate phenomenon and may or may not occur in conjunction with nausea. It is a self-protective mechanism by which the body attempts to expel toxic substances and involves the expulsion of gastric contents through the mouth, caused by forceful contraction of the abdominal muscles. Vomiting is frequently described as “throwing up,” “pitching,” “barfing,” or “upchucking.” Retching involves the spasmodic contractions of the diaphragm and abdominal muscles.16–20

Nausea and Vomiting Vagal Afferents Upper gastrointestinal tract Chemical Mechanical

Pharyngeal Afferents Irritation in pharynx, such as cough

Vomiting Center or Emetic Center

Chemotheraphy Trigger Zone Medication Chemicals Biochemical abnormalities

Vestibular System Motion sickness Medications Brain tumors

Midbrain Afferents Anxiety, stress Increased intracranial pressure Brain tumors

Figure 10–2. Physiological mechanisms of nausea and vomiting.

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Physiological Mechanisms of Nausea and Vomiting After thoroughly understanding the concepts of nausea and vomiting, it is important to understand the physiological mechanisms and causes of this symptom complex.19–21 Vomiting is controlled by stimulation of the vomiting center (VC) or emetic center, which is an area located in the medulla. There are multiple central and peripheral pathways that can stimulate the VC. It is important for nurses to understand these pathways to be able to determine a cause and to select appropriate treatments. The peripheral pathways include: the vagal afferents (from the gut and pharyngeal walls) and the vestibular system. The central pathways include afferents from the cerebral cortex, chemoreceptor trigger zone (CTZ) and vestibular nuclei (Figure 10–2).18,20,23–25 The vagal afferent pathway involves fibers located in the wall of the stomach and proximal small intestine, which sense mechanical or chemical changes in the upper gastrointestinal tract. The pharyngeal afferent pathway involves mechanical irritation of the glossopharyngeal nerve. Excessive coughing may cause nausea by irritating this pathway. The vestibular system involves stimulation starting in the inner ear. This mechanism is involved in nausea and vomiting resulting from vertigo, motion sickness and opioids. If a patient has a prior history of motion sickness, he or she may have an increased incidence of nausea and vomiting with treatments such as chemotherapy.20,23,24 The central pathways include the midbrain and the CTZ. Raised intracranial pressure, fear, anxiety, sights, sounds, or tastes may stimulate the midbrain afferent pathway. The CTZ is located at the area postrema of the fourth ventricle of the brain, is very vascular and lies outside the blood-brain-

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barrier. Cytotoxic chemotherapy, medications and metabolic derangements cause irrtiation of the CTZ through various neurotransmitters such as: serotonin, dopamine and histamine. The vagal afferents also enter the CTZ.20–25 In the past, it was hypothesized that chemotherapy-induced nausea and vomiting occurred as a result of stimulation of the CTZ by the chemotherapy or other drugs. Today there is more emphasis placed on understanding other mechanisms, such as the 5-hydroxytryptamine3 (5-HT3) receptors located in the wall of the small intestine. In newer theories, it appears that for patients receiving chemotherapy, abdominal radiotherapy, or who develop significant abdominal distention, the enterochromaffin cells of the mucosa of the small intestine release Serotonin. When 5-HT3 is released from these cells, it binds to specific receptors and these afferent impulses travel to the VC.20,26 More recently, a new ligand-receptor pair has been described as having an important role in nausea and vomiting. The three neurokinin receptors are called neurokinin-1, neurokinin-2, and neurokinin-3 receptors. Their preferred ligands are known as neurokinins(NK) or tachykinins. These are 11-amino-acid peptides including substance P, neurokinin A, and neurokinin B. The NK-1 receptor is stimulated by substance P and is thought to be involved in emesis.17,27 Other neuroreceptors involved in emesis include acetylcholine, corticosteriod, histamine, and cannabinoid receptors which are located in the vomiting centers of the brain.

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Causes of Nausea and Vomiting There are numerous potential causes of nausea and vomiting in cancer patients with advanced disease requiring palliative care. These are presented in Table 10–1 and are useful to remember when working with terminally ill patients. Often, the cause for nausea and vomiting is multifactorial.4,5,20,22,25,28 For instance, there may be a metabolic derangement, such as a fluid and electrolyte imbalance (i.e. hypercalcemia, hyperglycemia, hyponatremia), occurring at the same time. In addition, the patient may be receiving opioids and/or nonsteroidal anti-inflammatory drugs (NSAIDs) to control pain. All of the factors can contribute to nausea and vomiting.29 It has recently been hypothesized that patients’ expectations may affect their experience of nausea and vomiting and the response to treatment. One study examined chemotherapy-related nausea and vomiting in treatment-naïve patients and found a statistically significant relationship (p = 0.015) between the patient’s expectations of the symptom occurrence and their actual symptom distress.17,30 Roscoe and colleagues31 described two studies that found significant relationships between patients’ expectations for nausea development measured before their first chemotherapy treatment and their mean post-chemotherapy nausea severity. Therefore, when considering nausea and vomiting from a QOL perspective (see Figure 10–1),15 the nurse must keep in mind that psychological, social, and spiritual distress can cause or exacerbate nausea and vomiting.

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Table 10–1 Causes of Nausea and Vomiting Irritation/obstruction of gastrointestinal Cancer Chronic cough Esophagitis Peptic ulcer Gastric distention Gastric compression Delayed gastric emptying Bowel obstruction Constipation Hepatitis Biliary obstruction Chemotherapy Radiation Sepsis metastases CNS Brain Meninges Liver

Biochemical abnormalities Hypercalcemia Hyponatremia Fluid and electrolyte imbalances Volume depletion Adrenocorticol insufficiency Liver failure Renal failure Drugs Chemotherapy Opioids Digoxin Antibiotics Anticonvulsants Aspirin and NSAIDs Increased intracranial pressure Cerebral edema Intracranial tumor Intracranial bleeding Skull metastases

Psychological Fear Anxiety CNS = central nervous system; NSAIDs = nonsteroidal antiinflammatory drugs.

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Assessment of Nausea and Vomiting Assessment is an important process and the foundation of all treatment-related decisions. It should be an ongoing process that begins with the initial patient contact. Without a complete and ongoing assessment, nausea and vomiting may be mismanaged. This can result in unnecessary anxiety, suffering, and decrease in the QOL for the patient and family. Nurses working in all settings and with all age ranges of patients need to use skillful observation along with effective data collection techniques for a complete and comprehensive assessment. It is rare that patients present with nausea and vomiting as a first sign of advanced cancer. Generally, patients who complain of this symptom complex have a well-documented history of their disease, including diagnosis, prior treatment, and sites of metastases. If this information is not available, nurses should obtain a complete medical/ surgical history, including previous episodes of nausea and vomiting, effectiveness of previous treatments, including the schedule of administration, and any current therapies that might be contributing to these symptoms. Information obtained by questionnaires or self-report tools such as diaries, journals, or logs is crucial for the identification and management of this symptom complex and for improving the patient’s QOL.16,23,25

Evaluation of nausea and vomiting should include the following: the pattern of the symptom with possible triggers, assessment of the mouth for thrush or mucositis, assessment of the abdomen and bowel sounds for hyper or hypo activity, assessment of the rectum for possible fecal impaction, laboratory studies (e.g., renal and liver function, ionized calcium, electrolytes, white blood cell count and differential, serum drug levels), and, if indicated, radiographic studies (e.g., computed tomography, magnetic resonance imaging scan, abdomen flat plate). Specifically, nurses should try to determine if there is a pattern to the nausea after certain medications, after meals, on movement or changing in position, or with certain smells. It is also important to ask if there is epigastric pain (possibly indicating gastritis), pain on swallowing (oral thrush), pain on standing (mesenteric traction), thirst (hypercalcemia), hiccups (uremia), heartburn (gastro-esophageal reflux disease), or constipation.32 There are several measurement tools that may be used to assess one or more of the components of nausea and vomiting. Some tools provide a global measure while others measure a single component of the nausea/vomiting. Instruments may involve checklists, visual analogue scales, patient interviews, or Likert scales. Almost all involve self-report by the patient.18,19,33–39 The most commonly used tools with reliability and validity reproducible in research studies are shown in Table 10–2.17,19,33,40,41 The tools used by nurses should be evaluated and chosen carefully. The words on the tools should have the same meaning to all participants. It is also important not to burden the patient or family with lengthy or intrusive questions.17 Rhodes16 recommends the following points when using an instrument to measure nausea and vomiting: (1) use self-report tools instead of observational assessments; (2) determine and describe the symptoms and components; (3) consider the

Table 10–2 Tools to Measure Nausea and Vomiting Instrument

Type

Reliability/Validity

Visual Analog Scale (VAS)

100-mm line, with anchor descriptors at each end 16 item, Likert scale (onset, severity– intensity) 8 item, Likert scale

Reliability is a strength.

Morrow Assessment of Nausea and Emesis (MANE) Rhodes Index of Nausea and Vomiting Form 2 (INV-2)

Functional Living Index Emesis (FLIE)

18 item, Likert scale

Test/retest reliability 0.61–0.78

Split-half reliability 0.83–0.99 Cronbach’s alpha 0.98 Construct validity 0.87 Content and criterion validity Internal consistency

Nausea and Vomiting clarity, cultural sensitivity, and understandability of the tool; (4) check reliability and validity; (5) use an instrument with an easy-to-read format; (6) consider the purpose of the tool, the target population, and whether it is for acute, delayed, or anticipatory nausea and vomiting or for patients with advanced cancer; and (7) consider the type of score obtained (total versus subscale scores) and the ease of scoring. Self-report tools such as journals, logs, or diaries can be especially helpful for assessing nausea and vomiting. They can be completed by the patient, a family member, caregiver. By using these tools, patients and families can develop experience with problem-solving and a sense of control. For health care providers, journals, logs, and diaries can offer useful information on patterns of symptom occurrence, selfcare strategies, and situational events.17 Goodman42 provided examples of a chemotherapy treatment diary that could be adapted for use with terminally ill patients to record nausea and vomiting (Figure 10–3).

9= CASE STUDY Gail, A Patient with Worsening Chronic Nausea Due to POD (Progression of Disease) and Escalation of Opioid Dosages Gail, a 40-year-old mother of a ten-year-old boy, has been referred to hospice with metastatic pancreatic cancer. She tells you she has had severe ongoing sharp pain in her right side that radiates to the back, associated with abdominal bloating. She reports intemittent nausea that keeps her from being able to eat. She feels like she will vomit but only has dry heaves. She currently has four 100 mcg/h transdermal fentanyl patches that are changed every 48 hours. She also uses oral hydromorphone 8 mg every 3 hrs as needed for breakthrough pain. She recently started using hydromorphone around the clock due to uncontrolled pain and thinks that her nausea has been more pronounced since then. Gail does not want to eat or drink fluids because of the nausea, dry heaves and the fear that her pain will worsen. You perform a thorough assessment of this chronic but worsening symptom by (1) asking the patient/family about the severity/intensity of the nausea, duration of nausea, frequency of nausea, pattern of nausea, triggers (e.g., with movement, after eating or drinking), and presence of vomiting; (2) asking the patient/family about epigastric pain, pain on swallowing, pain on standing, thirst, hiccups, heartburn, constipation, and any changes in medications; and (3) performing a thorough examination of the abdomen and bowel sounds, and of the rectum. Through your assessment, you discover that her abdomen is distended, bowel sounds are present but diminished in all quadrants, and there is severe tenderness with palpation of the right upper quadrant in the area of the liver. She is uncomfortable lying flat. You think that if she didn’t have to take so much hydromorphone, she wouldn’t have such a bad nausea. You decide to consult with the hospice physician and do opioid rotation, by changing the fentanyl patches and

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Name Medications to Take for Nausea & Vomiting Medication

Time to take

How to take

Special instructions:

If you have difﬁculty drinking ﬂuids or your nausea and/or vomiting does not go away, you must call your doctor or hospice. Doctor's phone Hospice phone Nausea Log Date

Drug

Time

Degree of Vomiting Effect of Nausea* (#of times) Drug**

*0 = no nausea; 1 = slight nausea; 2 = moderately severe nausea, interferes with activities and eating; 3 = severe nausea, intolerable. **Effect of drug: 1 = very effective, 2 = moderately effective, 3 = not effective.

Figure 10–3. Nausea diary. Source: Goodman (1997). Copyright

1997 by Oncology Nursing Society. Reproduced with permission.

hydromorphone to methadone. You also anticipate that the nausea is likely to persist for few more days despite changing to a different opioid. In addition, 10 mg of metoclopramide every 6 hours is added to her regimen, with additional 10 mg doses as needed for severe nausea. A combination of Senokot and Colace is prescribed preemptively for constipation. Within 3 days, Gail’s pain is under better control, and her nausea and dry heaves have improved significantly. She is having regular bowel movements, and she is able to take some fluids, food, and medications by mouth. o]

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Pharmacological Management of Nausea and Vomiting Significant progress has been made through research in managing chemotherapy-induced nausea and vomiting.37,38

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However, there have been few changes in clinical practice when treating nausea and vomiting in patients with faradvanced disease. The challenge is to provide appropriate antiemetic interventions for these patients in the setting in which they are receiving palliative care, while appreciating the demand for cost containment in health care delivery. Individuals with advanced cancer range from pediatric patients to elderly patients and receive end-of-life care in many health care settings (e.g., home, hospitals, inpatient hospice units, hospice houses, and outpatient and ambulatory units). The array of antiemetics available has increased (Table 10–3),4,16,25,42–45 allowing for individualized protocols. Thus, it is important for nurses to continually reassess the effectiveness of the implemented treatments. Additionally, it is essential that nurses use and teach the patients and their families nonpharmacological methods to prevent and decrease nausea and vomiting. In recent years, health care associations and groups of health care providers have developed recommendations or guidelines for the use of antiemetics in clinical practice. However, only a few of these mention the use of antiemetics for terminally ill patients.27,43,46–48 According to Kaye,32 the overall plan of management for palliative care of nausea and vomiting should be as follows: 1. 2. 3. 4. 5. 6. 7. 8.

Make an assessment. Identify the causes if possible. Choose the antiemetic(s). Choose the route. Change the protocol if it is not working. Consider steroids. Consider antacids . Decrease or change the opioid for pain (opioid rotation). 9. Remember that anxiety can cause nausea.

Woodruff24 adds that pharmacological management should include adequate doses of antiemetics, combinations of antiemetics, and use of intravenous (IV), subcutaneous (SC) and rectal routes if necessary. If nausea and vomiting continue, consider psychological factors like untreated anxiety, and reassess for missed physical and or pharmacological causes. Different combinations of antiemetics should also be tried. For intractable nausea and vomiting, a multimodal approach combining antiemetics targeting different rceptors is recommended. Similar to the setting of ongoing pain, ongoing nausea requires regular dosing of antiemetics rather than just on an as-needed basis.

Classes of Antiemetics There are currently 10 classes of drugs used as antiemetics in palliative care: butyrophenones, prokinetic agents, cannabinoids, phenothiazines, antihistamines, anticholinergics, steroids, benzodiazepines, 5-HT3 receptor antagonists, and NK1 receptor antagonists.

Mannix 4 recommends seven steps to choosing an appropriate antiemetic protocol for palliative care. The first step involves identifying the likely cause(s) of the symptoms. In the second step, the clinician should try to identify the pathway by which each cause is triggering nausea and vomiting (see Figure 10–3). In step three, it is helpful to identify the neurotransmitter receptor that may be involved in the pathway, such as the 5-HT3 receptor. Once the receptor is identified, step four requires selection of the most potent antagonist to that receptor. Step five involves selecting a route of administration that will ensure that the drug will reach the site of action. Once the route is chosen, step six is to titrate the dose carefully and give the antiemetic around the clock. Lastly, in step seven, if symptoms continue, review the likely cause(s) and consider additional treatment that may be required for an overlooked cause. The clinical practice guidelines developed by the American Society of Clinical Oncologists (ASCO)46 provides levels and grades of evidence for the guidelines. The five levels of evidence include: Level I: Evidence is obtained from meta-analysis of multiple, well-designed, controlled studies. Level II: Evidence is obtained from at least one welldesigned experimental study. Level III: Evidence is obtained from well-designed, quasi-experimental studies such as nonrandomized, controlled, single-group, pre-post, cohort, time, or matched case-control studies. Level IV: Evidence is obtained from well-designed, nonexperimental studies, such as comparative and correlational descriptive and case studies. Level V: Evidence is obtained from case reports and clinical examples. There are four grades in the ASCO guidelines. They are: A: There is evidence of Level I or consistent fi ndings from multiple studies of Levels II, III, and IV. B: There is evidence of Level II, III, and IV, and fi ndings are generally consistent. C: There is evidence of Level II, III, and IV, but fi ndings are inconsistent. D: There is little or no systematic empirical evidence. Butyrophenones are dopamine antagonists (D2 subtype) and are rated by the ASCO guidelines as Level I and grade A. Haloperidol and droperidol are the medications in this class, and they are most potent at the CTZ (see Figure 10–3). Butyrophenones are major tranquilizers whose mode of action, other than dopamine blockade, is not well understood. In general, they are less effective at controlling nausea and vomiting than other classes of drugs except for the phenothiazines. They are effective, however, when used in combination with other medications, especially with the 5-HT3 receptor antagonists. Butyrophenones can be effective when anxiety and anticipatory symptoms aggravate the intensity

Table 10–3 Antiemetic Drugs in Palliative Care Drug Butyrophenones Haloperidol

Indication

Phenothiazines Prochlorperazine

Dystonias, dyskinesia, akathisia

Side effects are less at low doses. Butyrephenones may be as effective as phenothiazines, may have additive effects with other CNS depressants. Use when anxiety and anticipatory symptoms aggravate intensity of nausea and vomiting.

Gastric stasis, ileus

Oral: 5–10 mg every 2–4 h IV: 1–3 mg/kg every 2–4 h

Dystonias, akathisia, esophageal spasm, colic if gastrointestinal obstruction, headache, fatigue, abdominal cramps, diarrhea

Infuse over 30 min to prevent agitation and dystonic reactions; use diphenhydramine to decrease extrapyramidal symptoms.

Oral: 10–30 mg every 2–4 h PR: 30–90 mg every 2–4 h Second-line anti-emetic

Oral: 2–10 mg every 4–6 h

CNS sedation, dizziness, disorientation, impaired concentration, dysphoria hypotension, dry mouth, tachycardia

More effective in younger adults.

General nausea and vomiting. Not as highly recommended for routine use in palliative care

Oral: 5–25 mg every 3–4 h PR: 25 mg every 6–8 h IM: 5 mg/mL every 3–4 h IV: 20–40 mg every 3–4 h

Drowsiness, irritation, dry mouth, anxiety hypotension, extrapyramidal side effects

May cause excessive drowsiness in elderly, IM route is painful.

Dry mouth, blurred vision, sedation

Cyclizine is the least sedative, so it is a better choice.

Thiethylperazine

Oral: 10 mg every 3–4 h IM: 10 mg/2 mL every 3–4 h PR: 10 mg every 6–8 h Oral: 100–250 mg every 3–4 h PR: 200 mg every 3–4 h IM: 200 mg/2 mL every 3–4 h

Trimethobenzamide

Antihistamines Diphenhydramine

Cyclizine

Comments

Oral; 0.5–5 mg every 4–6 h IM: 5 mg/mL every 3–4 h IV: 0.5–2 mg every 3–4 h IV, IM: 1.25–2.5 mg every 2–4 h

Domperidone

Cannabinoids Dronabinol

Side Effects

Opioid-induced nausea, chemical and mechanical nausea

Droperidol

Prokinetic agents Metoclopramide

Dosage, Route, and Schedule

Intestinal obstruction, peritoneal irritation, vestibular causes, increased ICP

Oral: 25–50 mg every 6–8 h IV: 25–50 mg every 6–8 h

Oral: 25–50 mg every 8 h PR: 25–50 mg every 8 h SQ: 25–50 mg every 8 h (Continued)

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Table 10–3 Antiemetic Drugs in Palliative Care (Continued) Drug Anticholinergics Scopolamine

Steroids Dexamethasone

Indication

Dosage, Route, and Schedule

Side Effects

Comments

Intestinal obstruction, peritoneal irritation, increased ICP, excess secretions

Sublingual: 200–400 mcg every 4–8 h SQ: 200–400 mcg every 8 h Transdermal: 500–1500 mcg every 72 h

Dry mouth, ileus, urinary retention, blurred vision, possible agitation

Useful if nausea and vomiting co-exist with colic.

Given alone or with other agents for nausea and vomiting

Oral: 2–4 mg every 6 h IV: 2–4 mg every 6 h

Insomnia, anxiety, euphoria, perirectal burning

Compatible with 5-HT3 receptor antagonists or metoclopramide. Taper dose to lowest effective dose to lessen adverse side effects.

Oral: 1–2 mg every 2–3 h IV: 2–4 mg every 4–8 h

Sedation, amnesia, pleasant hallucinations

Use with caution with hepatic or renal dysfunction or debilitated patients.

Oral, IV: 0.15–0.18 mg/kg every 12 h

Headache, constipation, diarrhea, minimal sedation

Indicated for moderate to highly emetogenic chemotherapy. Ideal for elderly and pediatric patients.

Benzodiazepine Lorazepam

Effective for nausea and vomiting as well as anxiety 5-HT3 receptor antagonists Ondansetron Chemotherapy, abdominal radiotherapy, postoperative nausea and vomiting Granisetron Miscellaneous Octreotide acetate

Dimenhydrinate

Nausea and vomiting associated with intestinal obstruction Nausea, vomiting, dizziness, motion, sickness

Oral: 1 mg every 12 h IV: 10 mcg/kg every 12 h SQ (recommended), IV bolus (emergencies): 100–600 mcg SQ in 2–4 doses/day Oral: 50–100 mg q 4 h, not > 400 mg/day IM, IV: 50 mg prn

Effectiveness is increased if used with dexamethasone. Diarrhea, loose stools, anorexia, headache, dizziness, seizures, anaphylactic shock Dry mouth, blurred vision, sedation

May interfere as others with insulin and β-adrenergic blocking agents; watch liver enzymes. Geriatric clients may be more sensitive to dose.

IM = intramuscular; SQ = subcutaneous; IV = intravenous; PR = per rectum; ICP = intracranial pressure; prn = as required; 5-HT = 5-hydroxytryptamine. Sources: Baines (1997), reference 3; Mannix (2004), reference 4; Rhodes & McDaniel (2001), reference 17; Fallon (1998), reference 25; Enck (1994), reference 28; Goodman (1997), reference 42; Gralla et al. (1999), reference 46.

of a patient’s nausea and vomiting. The side effects include: extrapyramidal dystonic reactions, akathisia, sedation, and postural hypotension.4,17,24,27,42,46 Prokinetic agents (see Table 10–3) include metoclopramide and domperidone. ASCO rates these agents as Level I and grade A for nausea and vomiting. They are also called “substituted benzamides.” Metoclopramide is the most commonly used medication in this category. It has some antidopaminergic activity at the CTZ and stimulates 5-HT4 receptors, which helps to bring normal peristalsis in the upper gastrointestinal tract and to block 5-HT3 receptors in the CTZ and gut. Extrapyramidal side effects are common. Infusing the drug over 30 minutes and administering

diphenhydramine 25 mg to 50 mg at the same time may lessen these side effects. Metoclopramide also enhances gastric emptying, decreases the sensation of fullness caused by gastric stasis, decreases the heartburn caused by chemotherapy, and slows the colonic transit time caused by the 5-HT3 receptor antagonists. Although initially used as a single agent, metoclopramide is now the main component of several combination protocols.17,27,46 In the setting of complete bowel obstruction, the use of prokinetic agents such as metoclopramide may result in increased pain and cramping and should be discontinued. Cannabinoids (see Table 10–3), such as dronabinol, are options limited for patients who are refractory to other

Nausea and Vomiting antiemetics. These substances presumably target higher CNS structures to prevent nausea and vomiting. According to the ASCO guidelines, there is Level I and grade A evidence that cannabinoids have antiemetic activity when used alone or in combination with other agents. Marijuana is the best known cannabinoid, but dronabinol is the plant extract preparation available for prescription use. The semisynthetic agents are nabilone and levonantradol. Marijuana, however, may be more effective when smoked. The actual site of action is not known, but it is thought to be at the cortical level. Cannabinoids are especially helpful in younger adults who do not have a history of cardiac or psychiatric illness. Younger patients may have a more positive experience, while older adults tend to have more neuroexcitatory side effects. These include hallucinations and feeling “high,” although these side effects may be decreased by low-dose phenothiazines. Because the central sympathomimetic activity may increase with the use of cannabinoids, these drugs should be used with caution in patients with hypertension or heart disease or in those who are receiving psychomimetic medic ations.4,17,24,27,42,46,49,50 Phenothiazines (see Table 10–3) were once considered the mainstay of antiemetic therapy. ASCO rates them as level I, grade A. They act primarily as dopamine receptor antagonists at the CTZ, having both antiemetic and sedative effects. They can be used as single agents or in combination protocols. One major advantage of this class is that active substance is available in different formulations (oral, rectal suppository, parenteral, and sustained-release preparation), offering more flexibilty in the outpatient setting. The phenothiazines are especially effective for acute or delayed nausea, either used alone or in combinationt with 5-HT3 receptor antagonists and dexamethasone. The most common side effects are extrapyramidal (e.g., dystonia, akathisia, dyskinesia, akinesia). These symptoms appear with greater incidence in patients who are less than 30 years old. Frequently, 25 mg to 50 mg of diphenhydramine is given to prevent the extrapyramidal side effects.4,17,24,27,42,46,49 Antihistamines act on histamine receptors (H1) in the VC and vestibular nuclei. Diphenhydramine is often used in combination protocols to minimize the development of extrapyramidal side effects. Dimenhydrinate can be used for motion induced nausea. Cyclizine is less sedative than scopolamine (an anticholinergic) and can be given subcutaneously (SQ). These are rarely used as single agents for nausea and vomiting in palliative care, and the ASCO guidelines rate the level of evidence as II and grade as B.4,17,24,46,49 Anticholinergics act on the nicotinic receptors at the vomiting center or the muscarinic receptors found in the vestibular nuclei. They are not used frequently as antiemetic therapy due to the wide range of side effects: dry mouth, ileus, urinary retention, and blurred vision. They also come in different formulations (sublingual, SQ, and transdermal), offering the advantage of a better bioavailability. Their anticholonergic properties are very useful in the palliative care setting to treat excessive respiratory secretions and reduce gastrointestinal peristalsis associated with abdominal colic. 4,24

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Corticosteroids, especially dexamethasone, are frequently a component of aggressive antiemetic regimens and are used as a second-line therapy after other antiemetics have failed.17,27,51–54 Their use remains controversial and has not been sufficiently studied in the palliative care setting. They appear to exert their antiemetic effects through the inhibition of antiprostaglandin activity. Dexamethasone is available in oral and parenteral formulations and is compatible to be mixed in solutions with 5-HT3 receptor antagonists and metoclopramide. In general, corticosteroids are most effective in combination with other agents due to synergistic actions. The efficacy of ondansetron, granisetron, and metoclopramide can be enhanced by adding dexamethasone.55 The use of corticosteroids for four to five days can prevent delayed nausea and vomiting. However, the dose should be tapered after several days to decrease the likelihood of developing side effects including insomnia, anxiety and euphoria. A trial of high-dose steroids should be used as first-line therapy if there is increased intracranial pressure from cerebral metastases, hypercalcemia of malignancy, or malignant pyloric stenosis.17,24,32,42,49,56 The ASCO guidelines suggest that the level of evidence is II and grade is B for the use of single doses of corticosteroids.46 Benzodiazepines act on the GABA receptors of the cerebral cortex (see Table 10–3). Lorazepam may be used alone when the intent is to treat anticipatory nausea (due to its temporary amnestic effect) or when anxiety is a contributing factor to nausea or vomiting.5,17,24,27,42,49 Malik and Khan57 found that lorazepam decreased the incidence of anticipatory nausea and vomiting, as well as acute emesis. Pediatric patients may experience sedation and pleasant hallucinations. Lorazepam should be used with caution in debilitated patients or those with hepatic or renal dysfunction. Benzodiazepines are used most commonly in combination protocols. The ASCO guidelines recommend that benzodiazepines be used in combination regimens (level of evidence II and grade B).46 The serotonin receptor anatgonists have been used to treat chemotherapy-induced nausea and vomiting since 1986. At that time, the selective blockade of 5-HT “m” receptors was shown to counteract the vomiting induced by cisplatin. Since then, there has been a rapid creation of new drugs and increased knowledge of the sites and roles of 5-HT receptors. The 5-HT3 receptors have been discovered in the CTZ, in the VC (centrally), and in the gut wall (peripherally). The mechanism of action of the 5-HT3 receptor antagonists (see Table 10–3)—ondansetron, granisetron, and dolasetron mesylate—appears to be limited to serotonin inhibition. Therefore, they lack the extrapyramidal side effects associated with dopamine antagonists. Ondansetron was the first agent to become available for clinical use in 1991, followed by granisetron in 1994, and dolasetron mesylate in 1997. Each of these medications can be given orally or intravenously. The oral route is as effective as the intravenous one and is preferred when feasible. Granisetron is the most specific 5-HT3 receptor antagonist and has a higher potency and a longer

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duration of action than ondansetron. All medications in this class can be used in the pediatric and geriatric populations because the side effects profi le is very limited.4,17,24,27,42,44,46 The ASCO grading of the level of evidence for these medications is I and grade is A.46 Many clinicians feel that there are no major differences in the efficacy and toxicity of the three FDA approved medications in this category.27 Palonosetron is a pharmacologically distinct 5-HT3 antagonist that has also been approved by the FDA. It appears to have 100-fold higher affinity for the receptor compared to ondansetron, granisetron and dolasetron.27 Olanzapine is a newer atypical neuroleptic which is both a dopamine and 5HT receptor antagonist. It is used to treat refractory nausea and vomiting and has pronounced sedative effects.58,59 As previously discussed, there is a ligand-receptor pair which has been described as having an important role in nausea and vomiting. Th is class of medications is called substance P antagonists or neurokinin-1 antagonists.27 Aprepitant is an oral drug that acts as an NK-1 antagonist. It has been shown to be effective when combined with ondansetron and dexamethasone to prevent acute and delayed chemotherapyinduced nausea and vomiting.27 A variety of miscellaneous agents can be helpful in nausea and vomiting. Octreotide acetate is a long-acting somatostatin analogue which may be helpful for nausea and vomiting associated with intestinal obstruction. Specifically, it inhibits gastric, pancreatic, and intestinal secretions and reduces gastrointestinal motility, making it useful in cases where there is high volume emesis. Dimenhydrinate contains both diphenhydramine, an antihistaminic, and chlorotheophylline. It is helpful for nausea, vomiting, and dizziness associated with motion sickness.

Combination Protocols Combining antiemetic drugs appears to improve efficacy, decrease side effects, and increase QOL. This practice is based on the theory that blocking different types of receptors and their neurotransmitters offers a better management of symptoms through synergistic actions. In some instances, single agents, such as granisetron, ondansetron, and prochlorperazine, may be used independently. However, the combination of a 5-HT3 receptor antagonist and a corticosteroid may be the most effective antiemetic regimen.4,17,42,49,60,61 The various agents used in combination are adjusted according to the individual’s tolerance.

Routes of Administration Nausea and vomiting may be treated with a combination of oral medications. If tolerated by the patient, this may be the most cost-effective treatment and provide the best prophylaxis.27 Sometimes, other routes are needed if the patient has severe vomiting or is unable to swallow. If the patient has IV access, IV administration is appropriate. The intramuscular route should be avoided because of the unpredictable

absorption and the painful administration. Other routes used in home care are: subcutaneous (SQ), rectal, sublingual, and transdermal. A continuous SQ infusion is useful for severe nausea and vomiting when venous access is not available, to avoid repeated injections.

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Nonpharmacological Management of Nausea and Vomiting in the Palliative Care Setting There is enough evidence in the literature to support the use of complementary and alternative techniques for the prevention and treatment of nausea and vomiting.7,53,63,64 There is, however, very limited literature addressing the use of these interventions for patients receiving end-of-life care. Nonpharmacological management of nausea and vomiting may involve simple self-care techniques (Table 10–4)23,28 or mind-body therapies based on using psychological interventions to control physiological responses.65 There are many different nonpharmacological techniques available today that can be used for the management of nausea and vomiting in the palliative care setting. Behavioral interventions involve the acquisition of new adaptive behavioral skills. These techniques may include relaxation, biofeedback, self-hypnosis, cognitive distraction, guided imagery, and systematic desensitization. Other therapies very commonly used by the integrative medicine specialists are acupuncture, acupressure, and music therapy (Table 10–5).17,63,64,66 Behavioral interventions can be used alone or in combination with antiemetic medications to prevent and control nausea and vomiting. All of these techniques attempt to induce relaxation as a learned response. They differ only in the manner in which they induce relaxation.63 Their effectivness is based on the following principles: (1) they produce relaxation,

Table 10–4 Nonpharmacological Self-Care Activities for Nausea and Vomiting Provide oral care after each episode of emesis. Apply a cool damp cloth to the forehead, neck, and wrists. Decrease noxious stimuli such as odors and pain. Restrict fluids with meals. Eat frequent small meals. Eat bland, cold, or room-temperature food. Lie flat for 2 hours after eating. Wear loose-fitting clothes. Have fresh air with a fan or open window. Avoid sweet, salty, fatty, and spicy foods. Limit sounds, sights, and smells that precipitate nausea and vomiting. Sources: Ladd (1999), reference 23; Enck (1994), reference 28.

Nausea and Vomiting

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Table 10–5 Nonpharmacological Interventions for Nausea and Vomiting Techniques

Description

Behavioral interventions Self-hypnosis Evocation of physiological state of altered consciousness and total body relaxation. This technique involves a state of intensified attention receptiveness and increased receptiveness to an idea. Relaxation Progressive contraction and relaxation of various muscle groups

Biofeedback

Control of specific physiological responses by receiving information about changes in response to induced state of relaxation

Imagery

Mentally takes self away by focusing mind on images of a relaxing place

Distraction

Learn to divert attention away from a threatening situation and toward relaxing sensations

Desensitization

Three-step process involving relaxation and visualization to decrease sensitization to aversive situations

Other interventions Acupressure Form of massage using meridians to increase energy flow and affect emotions Music therapy

Use of music to influence physiological, psychological, and emotional functioning during threatening situations

which can decrease nausea and vomiting; (2) they serve as a distraction from the stimulus causing nausea and vomiting; (3) they enhance feelings of control and decrease feelings of helplessness as patients are actively involved in decreasing their symptoms; (4) they have no side effects; (5) they are easily self-administered; and (6) they can be cost effective because they require limited time by a health care professional to teach these interventions.14,63,66,67 There is currently no convincing evidence favoring one method over another; rather, the effectiveness of these techniques appears to depend on the individual preference.

Comments Used to control anticipatory nausea and vomiting Limited studies, mostly children and adolescents No side effects Decreases intensity and duration of nausea Decreases frequency, severity, amount, and duration of vomiting Often used with imagery Can use for other stressful situations Easily learned No side effects Decreases nausea during and after chemotherapy Decreases duration and severity of vomiting Not as effective with anticipatory nausea and vomiting Two types: electromyographic and skin temperature Used alone or with relaxation Easily learned No side effects Decreases nausea during and after chemotherapy More effective with progressive muscle relaxation Most effective when combined with another technique Increases self-control Decreases duration of nausea Decreases perceptions of degree of vomiting Feel more in control, relaxed, and powerful Can use videos, games, and puzzles No side effects Decreases anticipatory nausea and vomiting Decreases postchemotherapy distress Inexpensive Easily learned No side effects Decreases anticipatory nausea and vomiting

Inconclusive literature support Acupressure wrist bands may be helpful to decrease nausea and vomiting Often used with other techniques No side effects Decreases nausea during and after chemotherapy Decreases perceptions of degree of vomiting

Self-Hypnosis Self-hypnosis was the first behavioral technique tested to control the symptom complex of nausea and vomiting. This used to be considered part of a psychoanalytical approach used in psychotherapy but, more recently, has been categorized as a behavioral intervention. Self-hypnosis allows individuals to learn to invoke a physiological state of altered consciousness and total-body relaxation. This results from the individual’s intensified attention receptiveness toward a specific idea or feeling.63,64 Unfortunately, hypnotic methods

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are not standardized, but all include relaxation and imagery. As with many of the behavioral techniques, there have been few controlled studies published on self-hypnosis. Most of the research has been performed with children and adolescents receiving chemotherapy. They appear to be more easily hypnotized than adults.68–73 The results have been mixed, with only some patients having a decrease in the frequency, severity, amount, and duration of vomiting, as well as duration of nausea. The advantages of this method include: absence of side effects, no need for equipment, minimal physical effort, and minimal training. Health care professionals, including nurses, have successfully taught patients self-hypnosis techniques.68,69 In a study by Marchioro and associates,73 all subjects showed a complete remission of anticipatory nausea and vomiting and major responses regarding postchemotherapy nausea and vomiting; however, these were not terminallyill patients. There is a need for more research to evaluate which behavioral interventions are most effective in patients of all ages with advanced diseases who are receiving endof-life care.

Biofeedback Biofeedback is a behavioral technique through which patients learn to control a specific physiological response (e.g., muscle tension) by receiving information about moment-to-moment changes in that response. Two specific types of biofeedback include electromyography (EMG) and skin temperature (ST). The purpose of EMG biofeedback is to induce a state of deep muscle relaxation from tense muscles. The purpose of ST biofeedback is to prevent and control skin temperature changes that precede nausea and vomiting.63,69,74 Research has shown that biofeedback may help individuals achieve a state of generalized relaxation.69,74,82,83 However, it has not been shown that EMG or ST biofeedback are as effective as PMR at decreasing chemotherapy-induced nausea and vomiting.72 Little definitive data exists regarding biofeedback as a useful behavioral technique for chemotherapy-induced nausea and vomiting, and even fewer datum demonstrates that either EMG or ST is effective at decreasing this symptom complex in patients with advanced disease.

Guided Imagery Progressive Muscle Relaxation Progressive muscle relaxation (PMR), also called active relaxation, involves individuals learning to relax by progressively tensing and then relaxing different muscle groups in the body. Passive relaxation is considered relaxation that does not involve active tensing of the muscles. Often, PMR is used in combination with guided imagery, and research has shown that it can decrease chemotherapy-induced nausea and vomiting as well as depression and anxiety.63,66,74–77 However, research has not been conducted on patients with advanced illnesses receiving palliative care.17 Research on chemotherapy-induced nausea and vomiting and PMR showed that PMR can decrease anxiety, the physiological indices of arousal (e.g., heart rate and blood pressure),depression and the occurrence of vomiting.77 One study 78 was conducted with 60 Japanese cancer patients receiving chemotherapy protocols similar to those used in the United States. The subjects were randomly assigned to the PMR intervention or a control group. The findings verified the effectiveness of PMR in reducing the total scores used to measure nausea, vomiting and retching, and subjective feelings of anxiety. Another study 79 was performed with Chinese breast cancer patients receiving chemotherapy to evaluate the use of PMR as an adjuvant intervention to pharmacological antiemetic treatment. The use of PMR significantly decreased the duration of nausea and vomiting in the experimental group as compared to the control group. Interestingly, as many as 65 of patients who learned PMR while undergoing chemotherapy continued to use this technique after they completed chemotherapy.80 However, there is still much to study and research about the use of PMR in cancer patients with advanced disease suffering from nausea and vomiting.

Guided imagery allows individuals with nausea and vomiting to mentally take themselves away from their current site to a place that is relaxing. Individuals may choose a familiar vacation spot, a safe place, a specific place at home, or can imagine any pleasant place where they would like to transport themselves. Experiencing and inducing different pleasant sensation by using all senses can mentally block the negative conditioned stimuli from the cerebral cortex and prevent nausea and vomiting and other symptoms. It is thought that the body physiologically adapts and responds to the created positive and pleasant image rather than to the negative conditioned stimuli.63–65,84 Research has suggested that guided imagery, or visualization, can facilitate relaxation, decrease anxiety, decrease anticipatory nausea and vomiting, and increase self-control.85–87 Guided imagery has also been assessed in combination with other techniques including music therapy. The results were better in the group of patients who received combined modalities than the controls who received either intervention alone. Interestingly, the subjects’ perceptions of the occurrence of nausea remained unchanged. However, the degree of vomiting was reduced significantly, and there was a trend toward a decreased duration of vomiting observed with combined music therapy/guided imagery intervention. In another study,88 patients who received guided imagery plus the standard antiemetic therapy exhibited a significantly more positive response in terms of alleviation of the chemotherapy induced nausea and vomiting than those who did not. Unfortunately, guided imagery did not have an effect on patients’ perceptions of the frequency of nausea and vomiting or the distress associated with these symptoms. The subjects did, however, express that they felt more prepared, in control, powerful, and relaxed when using guided imagery.

Nausea and Vomiting From the limited research available, it appears that guided imagery may be most effective at decreasing nausea and vomiting associated with chemotherapy and mostly when it is combined with another nonpharmacological technique, such as PMR or music therapy. There is little research that has examined guided imagery alone or in combination with another behavioral technique for patients receiving symptom management in the palliative care setting. The palliative care nurse plays a key role in educating and teaching the patients and their families about guided imagery contributing to their overall quality of life.

Cognitive Distraction Cognitive distraction is also known as attentional diversion. This behavioral technique is thought to act by shift ing an individual’s attention away from nausea, vomiting, and the stimuli associated with these phenomena while focusing their attention on an engaging and pleasant activity.63,64,66,69,74,89 Research has shown that simply distracting children and adolescents with video games can decrease anticipatory nausea and vomiting.89,90 Research with adults has demonstrated that cognitive distraction can significantly decrease postchemotherapy nausea, regardless of the pre-chemotherapy anxiety levels.91 Further research is needed to demostrate the utility of this techinque in preventing or treating nausea and vomiting associated with anti-cancer therapies.. It is important for nurses to educate themselves about nonpharmacolgical interventions so that they can discuss them with patients and families who might benefit from such interventions.

Systematic Desensitization Systematic desensitization is a standardized intervention that has been used to counteract anxiety-laden maladaptive responses such as phobias.66 There are three key steps to the desensitization process. First, the individual is taught a response, such as PMR, that is incompatible with the current maladaptive response (e.g., chemotherapy-induced nausea and vomiting). After this first step, the individual and teacher create a hierarchy of anxiety-provoking stimuli related to the feared situation (events related to receiving chemotherapy, such as driving to the clinic, entering the treatment room, and seeing the chemotherapy nurse). This hierarchy of anxiety-provoking stimuli range from the least to the most frightening. In the last step, the individual uses the alternative response while systematically visualizing the increasingly aversive scenes related to chemotherapy and nausea and vomiting.63,66,69,92–94 Studies demonstrated that systematic desensitization can be effective against anticipatory nausea and vomiting associated with chemotherapy.81,92,95,96 Specifically, systematic desensitization can decrease not only the frequency, severity, and duration of anticipatory nausea and vomiting, but also the duration and severity of post-treatment nausea.This particular behavioral technique can be effectively implemented

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by a variety of trained health care professionals (e.g., nurses, physicians, and clinical psychologists).92 More research is needed to validate and standardize these techiques.

Other Nonpharmacological Interventions Acupuncture and acupressure are Eastern health care therapies that have gained awareness and have become part of the complementary interventions in the field of palliative care. Acupressure is a form of massage that uses specific energy channels known as meridians. Tsubos are acupuncture/acupressure points. Tsubos are points of decreased electrical resistance running along the body’s energy pathways that form the meridian system. It is believed that stimulating the tsubo improves the energy flow, affects organs distant from the area being stimulated, and positively affects emotions.63,97 Most studies have been performed with chemotherapy-induced nausea and vomiting.98–102 Some studies have shown acupuncture on P6 (Neiguan point) to be effective at decreasing nausea and vomiting for 8 hours, and if acupressure is applied immediately after P6 acupuncture, there is a prolonged antiemetic effect.99–101 Aglietti and colleagues103 treated women receiving cisplatin with metoclopramide, dexamethasone, and diphenhydramine with and without acupuncture. Patients had a temporary acupuncture needle for 20 minutes during the infusion of chemotherapy and then a more permanent needle 24 hours after chemotherapy. Acupuncture did decrease the intensity and duration of nausea and vomiting, but the investigators commented that it was difficult to perform acupuncture in daily practice. Dibble and associates104 conducted a pilot study with women undergoing chemotherapy for breast cancer and reported that finger acupressure decreased nausea. An NIH Consensus Conference has stated that acupuncture for adult post-operative and chemotherapy-related nausea and vomiting is efficacious.105 Additionally, several reviews of acupuncture and acupressure have concluded that these are efficacious methods for relieving nausea and vomiting and other symptoms.106,107 One study that was conducted on terminally ill patients found that acupressure wristbands were ineffective at decreasing the intensity or frequency of nausea and vomiting.108 The investigators experienced difficulty in obtaining complete data and found subject recruitment a problem. Thus, studies on terminally ill patients need to be repeated and extended to confirm the usefulness of acupuncture or acupressure, even though research with terminally ill patients is difficult to conduct. Music therapy has been used as a tool to prevent or control nausea or vomiting in cancer patients. This technique uses music to induce a state of well-being and counteract the side effects of treatment. The objective is to influence the patient’s physiological, psychological, emotional, and behavioral wellbeing.109 Music therapy has most often been used in combination with other nonpharmacological techniques. Few studies have looked at the ability of music therapy to decrease nausea and vomiting in cancer patients.17 Most of the studies have not used music therapy as a single intervention and have assessed

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only nausea and vomiting related to chemotherapy. Frank87 combined music therapy with guided imagery. The duration of nausea and the patients’ perceptions of the degree of vomiting were decreased; however, the patients’ perceptions of nausea did not change, and there was only a slight decrease in the duration of vomiting. Standley 110 used music therapy alone as an intervention and assessed the effects on the frequency and degree of anticipatory nausea and vomiting, as well as vomiting during and after chemotherapy. The individuals who received the music intervention reported a shorter duration of nausea and a longer time before the onset of nausea. Ezzone and colleagues111 evaluated whether a music intervention would decrease bone marrow transplant patients’ perceptions of nausea and number of episodes of vomiting while receiving high-dose chemotherapy. Significant differences were found, with the music therapy patients having less nausea and fewer episodes of vomiting. The music should be quiet and should create a calm background rather than being disruptive.112 Music therapy is an intervention that can be initiated independently by nurses in all settings and individualized for each patient. Additionally, music as an intervention for patients with advanced cancer receiving end-of-life care requires less time and energy to implement than relaxation or guided imagery, and therefore may be less taxing for the seriously ill patient. Certainly, the combination of music therapy with antiemetic therapy warrants further study to assess their effects on alleviating the distressing symptoms of nausea and vomiting.

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Nursing Interventions Palliative care is by definition active total care; thus, it is essential that nurses have a proactive attitude towards assessing and promptly relieving nausea and vomiting for patients under their care. The National Comprehensive Cancer Network (NCCN) palliative care guidelines recommend aggressive symptom management clarification of the intent of treatments, anticipation of the needs of patients and their families and involvement of the caregivers in the treatment process, when appropriate.47 As discussed in this chapter, the NCCN guidelines emphasize the need for ongoing assessement of symptoms, therapeutic interventions and measurement of their outcomes. The palliative care nurse plays a crucial role in this aspect of care and is instrumental in promoting a collaborative approach among team members caring for their patients. It is vital that nurses in all settings (e.g., administrators, clinicians, educators, and researchers) lead the way in learning how to manage these symptoms appropriately in the palliative care setting. From a clinical perspective, nurses need to provide initial and ongoing assessment of the patient’s symptom experience, implement appropriate pharmacologic and nonpharmacologic interventions, evaluate the outcomes of all interventions, and educate the patient

and family. Administrators play a key role in providing the resources necessary for clinical nurses to give quality, but cost-effective, palliative care in all settings (hospitals, inpatient hospice units, hospice houses, homes, and outpatient/ ambulatory units). Family caregivers are often expected to participate in and monitor the overall symptom management of their loved one, as well as to provide emotional support, and help with daily activities and general care. In addition, a family member is frequently the communication link between the patient and the nurse. Nurses depend heavily on family members for information about the patient, especially when the patient’s clinical status deteriorates. It is therefore essential that family be involved early in the patient’s plan of care and participate in the educational sessions provided by nurses and others involved.113 Specific to nausea and vomiting, patients and family need to be taught how to systematically assess the symptoms. They may use a log, such as the one developed by Goodman42 (see Figure 10–3). It is helpful to teach the patient and family members to rate the distress caused by these symptoms on a scale of 0 to 10. This provides more accurate information regarding the intensity of the non-physical symptoms associated with nausea and vomiting. The patient and family also need to be taught problem-solving skills for specific situations (e.g., when they can give an extra dose of antiemetic) and self-care activities (see Table 10–4). The importance of dosing the antiemetics regularly rather then as needed should be reinforced when nausea and vomiting are ongoing symptoms. Information regarding medications and instructions for self-care should be provided in written form. Specific instruction should be given as to when to call the physician or nurse. Lastly, it is very helpful to teach nonpharmacological methods for decreasing nausea and vomiting (e.g., music therapy or relaxation). Nurse educators can work collaboratively with clinicians to develop educational tools for patients and families (pamphlets, videos, and audiotapes) in managing these symptoms. Additional nursing research and multidisciplinary research is very much needed regarding appropriate antiemetic regimens, nonpharmacological interventions, appropriate self-care activities, and QOL issues for patients receiving palliative care. Nurse researchers are not only actively involved in this research, but also in the dissemination of the results to clinicians and educators.

9= CASE STUDY BT, A 39-Year-Old Man Who Has Intractable Nausea and Vomiting BT, a 39-year-old man with metastatic non-small cell lung cancer, is admitted to a palliative care unit with intractable nausea and vomiting. He is unable to tolerate any food or water and can no longer take any medications by mouth. He also has severe headache, anxiety, and sometimes

Nausea and Vomiting panic attacks. He has told his family and friends that he doesn’t want to die in a hospital. He currently has three 100 mcg fentanyl patches placed every 3 days and used to take two hydrocodone (7.5 mg hydrocodone with 750 mg acetaminophen) tablets every 3 to 4 hours for breakthrough pain. BT is no longer able to use the prochorperazine previously prescribed for nausea, nor any other medication that is administered by mouth. He has nothing prescribed for anxiety. You do a thorough assessment of his pain, nausea, and anxiety and learn the following: (1) His persistent headache is a 6 to 9 out of 10 and his fentanyl patches used to treat his bone pain from metastases do not provide any relief for his headaches. The headaches occur mostly in the morning and are relieved after he vomits. His nausea is a 10 out of 10; (2) Many years ago he he had learned transcendental meditation but has not practiced in 20 years. He plays the violin as a hobby, but hasn’t practiced since he was diagnosed with cancer; (3) His anxiety and panic attacks are precipitated by planning his funeral and Will; (4) He can not tolerate morphine due an exacerbation of his severe nausea. After a thorough assessment is made, there is a high suspicion that brain metastases are causing increased intracranial pressure, resulting in headaches and severe nausea and vomiting. An antiemetic regimen is instituted promptly with Dexamethasone 10 mg Q.A.M. IV in combination with metoclopramide 10 mg every 6 hours around the clock. The patient refuses to have an evaluation by MRI to rule out cerebral metastases. Lorazepam is ordered at 1 mg IV every 6 hours as needed for anxiety. A referral is made to the music therapist because of his love of music. After 3 days, the patient’s headaches have improved with a severity of 2 to 4 out of 10, and nausea has decreased to a severity of 3 to 4 out of 10 He is titrated to only one dose of lorazepam per day for anxiety. BT and his family express great relief that his nausea and vomiting are under control. He is discharged home with hospice support. o]

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Conclusion A major goal of palliative care is to improve QOL by addressing suffering in all its dimensions. This can be achieved in part through aggressive and expert symptom management, including adequate treatment of nausea and vomiting in terminally ill patients. It can be difficult for nurses to meet the challenge of providing high quality palliative care when there is limited evidence base for interventions used routinely. However, vigilant assessment, appropriate use and evaluation of pharmacological and nonpharmacological interventions, appropriate patient and family education and support, as well as further research, will go a long way in approaching the problem. Nausea and vomiting profoundly affect all aspects of a person’s’ well being. Adequately managing these symptoms, especially at end of life, is essential.

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Constance M. Dahlin, Audrey Kurash Cohen, and Tessa Goldsmith

Dysphagia, Xerostomia, and Hiccups It seems ridiculous that with everything else going on, what bothers me the most is my difficulty swallowing and my dry mouth. Sometimes when I take lots of sips quickly to swallow, I get the hiccups. It exhausts me, making me no longer want to eat. It doesn’t seem worth the effort.— Mark, 53-year-old ALS patient

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Key Points Dysphagia, dry mouth, and hiccups affect quality of life and social interaction, and cause unnecessary suffering. Dysphagia has many etiologies and a multitude of management options. Xerostomia is a common complaint. Hiccups, though seemingly harmless, can be extremely frustrating for patients and can be difficult to treat. Comprehensive and regular mouth care relieves suffering and promotes comfort.

Dysphagia and dry mouth are disturbing symptoms that occur frequently in progressive terminal illness. Hiccups, while less frequent, can be as distressing, adversely affecting quality of life. These problems impact the essence of pleasurable activities such as social interaction, communication, intimacy, and food consumption as well as impairing nutrition. In a culture where food is both the core of life and a central focus of one’s daily structure, disinterest in food and/or lack of the ability to eat can cause distress for both patients and families. Patients at the end of life may lose interest and then withdraw from social interaction. Since the essence of nurturing is intertwined with the ability to provide and receive nourishment, the chronically ill patient, isolated from social interactions that take place around the consumption of food, becomes increasingly depressed. Family members may also refrain from eating around the dysphagic patient, further isolating him or her.1 Families, with all good intentions, keep focusing on food. This creates a tension that may make the situation worse because the focus shifts from the patient to the importance of food. Thus, care for patients with terminal illnesses who are experiencing dysphagia, hiccups, or dry mouth, should focus on the following palliative care principles: (1) prevention and relief of suffering is the primary goal, (2) the patient and family are the unit of care, (3) dysphagia care is optimized by involvement of an interdisciplinary team whereby each specialist contributes his/her expert knowledge, and (4) care is best delivered with a plan that reflects the underlying aspect of the life-threatening disease, encompasses the goals of treatment, and determines where the plan of care can be adjusted as the situation demands.2–4

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o]o]o] DYSPHAGIA 9= CASE STUDY AC, A Patient with Dementia and Recurrent Pneumonias AC, an 85-year-old man, was admitted to the acute care hospital with worsening shortness of breath and chest congestion and was diagnosed with a pneumonia and dehydration. Prior to this admission, he had been living in an assisted living facility due to his advancing dementia and other medical issues including diabetes, HTN and COPD. Although he was still able to ambulate independently, he required assistance for insulin administration, bathing, dressing and toileting, as he was becoming more forgetful and easily confused. Thus, the patient’s daughter had hired a private caregiver to assist him. Up until recently, he was able to go to family events, eat out at restaurants, and go shopping with her. Although no previous swallowing impairments were documented, upon investigation it was noted that over the past year he had lost 15 pounds, had been admitted to the hospital twice for pneumonia, and that his daughter had reported he would often hold food in his mouth for an extended period of time, benefiting from increasingly softer, moister items, and high calorie snacks. Over the years, AC and his daughter had spoken about his wishes and he had always stated that he did not want to prolong his life with artificial hydration and nutrition if he could not enjoy being with his family and remain independent. His primary care physician had provided advance care planning to clarify his advance directives regarding life-sustaining treatment and to reflect his wishes for end-of-life care. While in the hospital, AC had periods of agitation that required staff to periodically use soft wrist restraints and a sitter for risk of falls. A nasogastric tube was placed to temporarily provide him with his medications and an IV for hydration. During the swallowing evaluation done by the speech language pathologist, AC could participate for short periods but became easily fatigued and restless. His oral mechanism assesment did not reveal a vocal weakness although his voice was inconsistently wet sounding, thought to likely be due to spillage of saliva into his airway secondary to reduced swallowing frequency and efficiency. When stimulated, he produced a strong cough to clear these secretions. When observed with small amounts of oral intake, he required sensory cues to close his mouth around the spoon, had delayed oral manipulation of the bolus and a slow reflexive swallow. He could not coordinate drinking from the straw, so liquids were presented via a spoon. He did not show frank signs of aspiration with small, controlled amounts of puree and thickened liquids; however, for larger bolus sizes and for thin liquids, he displayed frank coughing and a gurgly voice that were clinically significant for aspiration.

It was decided that, although an instrumental evaluation such as a videofluroscopic swallow study could provide more information as to why he was aspirating and clarify the safest consistencies and best swallowing strategies, they would not complete one, as it would likely not alter management nor impact the treatment plan. Given his advancing dementia, history of pneumonias, and declining swallowing ability, it was felt that his ability to safely and adequately maintain his nutrition was compromised and was likely to further decline. The palliative care team was consulted and a team meeting took place with AC’s daughter in order to discuss best management and alternatives. Given the patient’s stated wishes and his notable discomfort and suffering with the nasogastric tube and restraints, everyone was in agreement that a gastrostomy tube for feeding was not what he would want. Based on his goals of care and the literature on feeding patients with dementia, it was determined that careful hand feeding would be most appropriate. A plan was devised for AC’s daughter and private caregiver to feed him by mouth, acknowledging the inherent risks of pulmonary infection, dehydration and malnutrition. He was discharged to his daughter’s house with hospice care and over the next two months, his oral intake diminished and his pulmonary status slowly deteriorated. AC passed away eight weeks after his discharge from the hospital surrounded by his daughter and her family. o]

o]

Definition Dysphagia is defi ned as difficulty swallowing food or liquid. Typically, chronic difficulty swallowing affects the efficiency with which oral alimentation is maintained. In addition, airway protection or swallowing safety can be threatened. Patients may complain of food getting caught along the upper digestive tract anywhere from the throat to the esophagus. In addition, diversion of food or liquid into the trachea may occur, causing aspiration, choking or, in severe cases, asphyxiation. Chronic difficulty swallowing can be both frustrating and frightening for patients. Because nutrition is compromised, generalized weakness, appetite loss, and weight loss may ensue. In severe cases, malnutrition may occur. Aspiration pneumonia may also occur, causing fevers, malaise, shortness of breath and, rarely, death. The psychological impact of dysphagia cannot be underestimated. The development of dysphagia may be a pivotal symptom that prompts the decision to consider end-of-life care.5 Life is not compatible without water, and thus the moment when the patient cannot or does not drink is when death becomes imminent and certain.6 The palliative care challenge in managing dysphagia is how to ensure comfort, even at the expense of optimal nutrition and hydration.

Dysphagia, Xerostomia, and Hiccups Understanding the physiology of normal and aberrant swallowing is critical to meeting this challenge.

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Physiology and Pathophysiology of Swallowing Normal Swallowing Swallowing involves the passage of food or liquid from the oral cavity through the esophagus and into the stomach, where the process of digestion begins. Swallowing is an extremely complex physiological act, and demands exquisite timing and coordination of more than 30 pairs of muscles under both voluntary and involuntary nervous control. Because humans swallow hundreds of times per day and are largely unaware of the activity, it is remarkable that difficulties do not occur more frequently. For purposes of discussion, the act of swallowing is divided into three stages (Figure 11–1). In reality, these stages occur simultaneously, with a blending and overlap of these stages. The act of swallowing takes less than 20 seconds from the moment of bolus propulsion into the pharynx until the bolus reaches the stomach. The longest phase comprises the transit of the bolus through the esophagus.

The first stage of swallowing (see Figure 11–1), the oral stage, is responsible for readying the bolus for swallowing. The duration of the oral stage is variable, depending on the viscosity or consistency of the food bolus and individual chewing styles. Bolus preparation is under voluntary control and can be halted or changed at any point. The primary activities of mastication include gathering and placement of semisoft and liquid boluses on the tongue. It is during this stage that one takes pleasure from the flavor and texture of food through the chemoreceptors of the tongue and palate. During mastication, the tongue moves the bolus to the dental arches to grind into smaller pieces. The bolus must be partitioned into smaller portions and moistened by saliva. Sensory receptors within the oral cavity, including along the tongue, teeth, cheeks and jaw, as well as within the muscles and joints, assist in mediating saliva production, as well as determining the chewing force and the configuration of the oral cavity to accommodate the bolus type and size.7 Opening the jaw as well as rotary and lateral movements achieves the masticatory process. Cohesive solid bolus formation is dependent on several factors: the presence of enzyme-rich saliva to bind the material together, the ability of the tongue to gather particles from the sulci of the cheek and the mouth floor, the prevention of food falling out

late

Soft Pa

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Figure 11–1. Stages of swallowing, beginning with voluntary initiation of the swallow by the tongue (A), oral transit (B), pharyngeal of swallowing with airway protection (C) and (D), and esophageal stage (E). Source: Logemann (1998), reference 8.

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of the oral cavity anteriorly, and the premature spilling into the pharynx.8 Once the bolus is formed, it is positioned on the tongue and is propelled posteriorly into the pharynx by contraction of the tongue and floor of mouth muscles. The soft palate elevates to prevent nasal regurgitation. The second stage of swallowing, the pharyngeal stage (see Figure 11–1), is elicited as the posterior tongue retracts and descends, sending the bolus over the base of the tongue and past the faucial arches (the curved arches at the back of the mouth). The bolus passage stimulates the sensory impulses of the glossopharyngeal and vagus nerves to coordinate airway protection and opening of the esophagus. At this stage, the oral cavity and the pharynx become one continuous tube with the entrance to the larynx closed off.8 The pharyngeal stage of swallowing is the most complex, requiring the most precise timing and coordination. The process of airway protection—that is, closure of the larynx—is quite remarkable and intricate. Three levels of closure occur, including epiglottic inversion at the entrance to the larynx, closure of the true vocal folds, and closure of the false vocal folds. As the floor of the mouth/tongue muscles contract to propel the bolus from the oral cavity, the larynx moves upward and the epiglottis inverts, closing the laryngeal vestibule. Although the exact sequence and timing of these events is uncertain, it is known that these events occur in order to extrude any material that may have entered the laryngeal vestibule, as well as prevent further material from entering.7 During the pharyngeal stage, respiration ceases on average of 1 second for a single sip of liquid. Swallowing usually occurs during the expiratory stage of the respiratory cycle, with expiration preceding and following the swallow.9 The three pharyngeal constrictor muscles that form semicircular bands progressively contract to send the bolus through the pharynx. As the bolus enters the pharynx, its tail is driven toward the hypopharynx and esophagus by the positive pressure generated from the base of the tongue contacting the pharyngeal walls. The pharyngeal constrictor muscles contract sequentially, and their topographic arrangement has the effect of stripping the bolus through the pharynx. The upper esophageal sphincter (UES) separates the pharynx from the esophagus and prevents air from entering the esophagus and prevents esophageal contents from reentering into the pharynx.10 Opening of the UES is the result of traction of the cricoid cartilage and larynx away from the posterior pharyngeal wall as the suprahyoid muscles contract, pulling the larynx upward and forwards.11,12 The greater the excursion of the larynx and the larger the bolus, the larger the diameter of the opening of the upper esophagus becomes.13,14 This opening of the UES creates a negative pressure in the esophagus, further helping to propel the bolus through the pharynx and toward the esophagus.15 The duration of the pharyngeal stage of swallowing is approximately 1 second. The order of contraction of muscles is invariant, but the timing and intensity of contraction depends on the viscosity and size of the bolus.16,17 The biomechanical events involved in this stage of swallowing are under involuntary control and

carefully sequenced in a pattern by the central swallowing center in the lower medulla. In the medulla, sensory feedback continually modulates the motor response. For example, if the bolus is dense, the firing of a particular group of muscles of the tongue may be increased, or the opening of the upper esophagus may last longer with a large bolus volume. If the sensory feedback loop is disturbed, the onset of the pharyngeal stage of swallowing may be delayed or, in severe cases, absent.8,16,18 The esophageal stage or final stage of swallowing (see Figure 11–1) involves transport of the bolus from the upper esophageal segment, through the lower esophageal segment, and into the stomach, a distance of approximately 25 cm.8,12 The esophageal stage is coordinated with the pharyngeal stage, with continued sequential contraction of muscles in the cervical esophagus. Like the pharyngeal phase of swallowing, the esophageal stage is under involuntary neuromuscular control. Unlike the pharyngeal stage, however, the speed of propagation of the bolus is much slower, with a rate of 3 to 4 cm/second compared to 12 cm/second in the pharynx.14,19 The upper portion or the cervical esophagus consists of approximately 8 cm of striated skeletal muscle, beginning at the upper esophageal segment. The outer fibers of the cervical esophagus are arranged longitudinally, while the inner fibers are arranged in a circular configuration. As the bolus reaches the esophagus, the longitudinal muscles contract, followed by contraction of the circular fibers, constituting the primary peristaltic wave. The lower portions of the esophagus are comprised of smooth muscle fibers. The primary peristaltic wave carries the bolus through the lower esophageal sphincter in a series of relaxation–contraction waves. The lower esophageal sphincter remains open until the peristaltic wave passes. A secondary peristaltic wave is generated where the striated muscle meets the smooth muscle and clears the esophagus of residue. This wave is reflexive in nature and initiated by distention of the esophagus during the primary peristaltic wave.10,16 After passage of the bolus, the upper and lower esophageal sphincters contract to their resting, closed state. This position contains the gastric contents within the stomach and prevents regurgitation of material into the hypopharynx and airway. 13,14 Pathophysiology of Oropharyngeal Dysphagia Difficulty swallowing can occur during, within, or across any of the above-described stages, depending on the underlying disease. It is helpful to conceptualize the process of bolus transfer through the oral cavity according to a piston–chamber model proposed by McConnell and Cerenko in 1988,11 while at the same time being aware that the pressure differential that is generated in the pharynx and throughout the esophagus also works to propel the bolus.7 The oral cavity, or chamber, comprises the area extending from the lips anteriorly to the hard palate superiorly and the pharyngeal wall posteriorly, bounded by the floor of the mouth inferiorly.

Dysphagia, Xerostomia, and Hiccups

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pharyngeal recesses, loss of control over the bolus, or incomplete laryngeal closure, causing aspiration before, during, or after the swallow. Valving of the larynx during the swallow is important for prevention of aspiration into the tracheobronchial tree. Failure of the larynx to close due to timing or muscular incompetence can result in aspiration of liquids or solid materials. Reduced sensory function and weakened laryngeal musculature impair expectoration of aspirated material. Functional and reliable laryngeal valving is crucial not only during oropharyngeal swallowing but also during periods of gastroesophageal reflux, regurgitation, or emesis. Failure of the upper esophagus to open completely results in residue in the pyriform sinuses superior to the pharyngoesophageal segment and, if abundant, may spill over into the unprotected larynx and trachea.12

F

C VELOPHARYNGEAL CLOSURE D TONGUE TO PHARYNX CLOSURE

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Figure 11–2. Valves of the oral cavity illustrating twin function.

The tongue acts as the piston that creates pressure on the bolus to drive it into the esophagus. The ability of the oral cavity to fulfi ll its function as a closed chamber depends on the integrity of a number of muscular contractions, which form valves that open and close and are illustrated in Figure 11–2. Bolus flow and, hence swallowing, is affected if there is dysfunction in the chamber or the piston. If the chamber leaks, residue, regurgitation, or aspiration may occur. Inefficient bolus flow may result from weakness in the tongue-driving force on the bolus, reduced contraction of the pharynx, or reduced excursion of the hyolarynx. Patients with muscle weakness due to stroke, degenerative neuromuscular disease, or neoplastic lesions involving motor and sensory function of the lips and face may experience difficulty containing the bolus in the oral cavity, producing drooling. Patients with severe dementia who are not aware of food in their mouth may fail to close their lips. Patients with Parkinson’s disease or ALS may experience lingual or facial weakness, resulting in oral pocketing of the bolus, making retrieval difficult, especially if buccal and lingual weakness coexist. In cases of reduced sensation, pocketed food may remain in the oral cavity for several hours, possibly increasing the risk of aspiration. Nasal regurgitation of liquids and particles of solids occurs when the velopharyngeal port is dysfunctional, such as in palate cancer where treatment involves resection, and in patients with progressive neuromuscular disease. Weak tongue-driving force during swallowing results in a significant amount of residue in the

A multitude of diseases can cause dysphagia, particularly in patients receiving palliative care. These include degenerative neuromuscular diseases, progressive cognitive decline disorders, recurrent or fatal neoplastic nervous system or gastrointestinal obstructive lesions, or pervasive debilitation from multisystem diseases. In some cases, side effects of treatment such as radiation therapy or chemotherapy are the precipitating causative factors of dysphagia, whereas in other cases, the progressive nature of the disease leads to unsafe and inefficient swallowing. Understanding the physiological impact of the illness is critical in evaluation of the swallowing disorder and the method of management. Generalized weakness of the oropharyngeal musculature may be evident in two patients—one with a diagnosis of ALS and another who has undergone chemoradiation therapy for a recurrent neck squamous cell carcinoma. Both patients may experience a weak pharyngeal swallow with difficulty clearing the bolus through the pharynx. In the patient with ALS, effortful swallows as a compensatory strategy or strengthening exercises would not be indicated due to fatigue. On the other hand, in the patient with neck cancer, encouraging effortful swallows to preserve motor flexibility may assist in protecting his airway to enable him to take some food by mouth in the short term. Some commonly encountered etiological categories in palliative care include cancer, and progressive neurodegenerative diseases which are dicussed below. Neoplasms Tumors involving the nervous system, as well as the head and neck and upper aerodigestive tract can interfere with swallowing. Brain Tumors. Brain tumors are classified into primary and secondary types. Primary brain tumors are a diverse group of

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neoplasms arising from different cells of the central nervous system. In contrast, secondary tumors originate elsewhere in the body and metastasize to the brain. It has been estimated that 51,000 new cases of primary brain tumors, malignant or benign, are diagnosed each year.20 Although dysphagia is rarely the presenting symptom, swallowing problems can develop directly or indirectly as the tumor increases in size and compresses surrounding structures and can be present in as many as 85 of brain tumor patients in the last stages of life.21 Extrinsic tumors located around the brain stem, such as acoustic neuromas and meningiomas, as well as those originating in the skull base, such as glomus jugulare, glomus vagale tumors, and chordomas, may compress or invade the lower medulla. Hence, the cranial nerves and their nuclei that are critical for swallowing will be affected, with the specific swallowing impairment dependent upon which cranial nerves are affected. In addition to direct tumor effects, swallowing and/or inability to maintain sufficient oral nutrition may be indirectly affected by depressed levels of consciousness, reduced awareness, fatigue, depression, seizures, sarcopenia, and need for opioids that is associated with tumor progression, mass effect and associated complications.21–24 Head and Neck Cancer. Oropharyngeal dysphagia is ubiquitous in patients with advanced-stage head and neck cancer. These tumors, most frequently squamous cell, occur in a variety of sites in the oral cavity, pharynx, larynx and upper esophagus and can affect nerve supply and muscle coordination and strength of movements involved in swallowing. Treatment approaches for advanced disease include surgery and chemoradiotherapy depending on the cell type, location, tumor size and presence of neck metastases. Radiation therapy forms the cornerstone of treatment even if other modalities are used. In extensive disease of the oral cavity or in cases of persistent or recurrent tumors, disfiguring surgical resection may be followed by reconstruction with a flap of tissue borrowed from another part of the body such as the fibula or radial forearm. In the past two decades, “organ preservation” involving chemoradiation therapy has been the primary approach for treating cancers of the pharynx and larynx with the goal of sparing the organs involved in speech and swallowing. Survival at 5 years is about 60.25 Laryngectomy is seldom used as a first line treatment for cancer of the voice box but is used in cases of persistent or recurrent disease. Unfortunately, “organ preservation” is not synonymous with “functional preservation.” In spite of advances in treatment methods, such as conformal intensity-modulated radiation therapy aimed at sparing normal tissue, and targeted chemotherapy agents, patients suffer from significant treatment toxicities including pulmonary aspiration, mucositis, edema, xerostomia, trismus (restricted jaw opening), and fibrosis affecting airway protection and opening of the upper esophagus.26 Swallowing becomes deliberate and effortful with coughing, food getting caught and the need for large volumes of

liquid intake to combat dry mouth. Non-oral nutritional support is required in greater than 60 of patients receiving multi-modality treatment and some patients are unable to resume an oral diet once their treatment is completed.27 Some patients manage to compensate for their dysphagia with changes in posture or diet consistencies suggested by speech language pathologists. Other patients rely on oral nutritional supplements delivered by mouth or gastrostomy tube. Radiation effects are progressive and aspiration is common. With local disease progression and distant metastasis, facial edema and pain increase and eating and drinking become chronically uncomfortable, effortful and difficult. By the time the patient with advanced head and neck cancer reaches the terminal stage, he or she has already been coping with dysphagia and its very visible consequences. Malignant Esophageal Tumors. The incidence of malignant esophageal tumors in the U.S. is rising with as many as 15,500 cases in 2007.28 Esophageal carcinoma can arise either from squamous cells of the mucosa or as adenocarcinomas of the columnar lining of Barrett’s epithelium. Although most esophageal cancers in the past were the squamous cell type, in the last several decades, adenocarcinoma has risen, with adenocarcinoma now four to five times more prevalent in newly diagnosed cases.29 Tumors of the squamous cell type are generally located in the upper or mid esophagus, while tumors of the adenocarcinoma type are located more distal.19 Treatment options and survival rate is much higher when the disease is detected early. Unfortunately, symptom presentation usually occurs late in the disease, resulting in diagnosis of advanced malignancy. Patients commonly complain of weight loss and progressive dysphagia with solid foods rather than liquids, throat pain and vomiting. In some cases, intractable cough may indicate extension of the tumor to the mediastinum or trachea. The presence of local extension to the aorta, trachea, or other mediastinal structures eliminates the possibility of surgical resection “Classic” symptom presentation for patients with adenocarcinoma is gastroesophageal reflux disease rather than dysphagia and weight loss.30 Survival rates are reported to be between 10 and 20 at 5 years, and thus, palliative care is the foundation of management for this disease.31 If diagnosed early, esophagectomy or esophagogastrectomy may be the treatment of choice, although there is a 5 mortality rate and a 64 complication rate following this procedure.32 However, in cases of unresectable advanced disease, symptomatic relief of dysphagia can be accomplished by radiation therapy, esophageal dilation, chemotherapy, placement of a plastic or wire mesh esophageal stent to open the lumen of the esophagus, tumor ablation via laser, or a newer procedure using photodynamic therapy. Concomitant radiation therapy and chemotherapy is more effective than radiation alone for localized esophageal cancer and is increasingly being used for palliative treatment.33,34 Each of these treatments is associated with considerable side effects, including radiationinduced esophagitis and chemotherapy-induced mucositis,

Dysphagia, Xerostomia, and Hiccups xerostomia, loss of taste, and lymphedema. Esophageal perforation during laser surgery or dilation and migration of the esophageal stents are potential complications from palliative procedures.33 Frequently, jejunostomy tubes must be placed for nonoral feeding. Cancer, Non-head and Neck. Oncology patients may develop transient or persistent oropharyngeal dysphagia due to a wide range of issues including presence of tumor, radiation, cytotoxic effects of chemotherapy, cancer-related weakness and fatigue and neurologic or respiratory compromise.22,34 One study found that of 11 non-head and neck cancer patients receiving palliative care, nine of them reported either dysphagic symptoms, the need to modify their food texture to softer foods, and/or an impact on their quality of life due to swallowing difficulties at some point in the course of their disease.22 Of particular note should be patients with intrathoracic malignancies, such as lung and mediastinal tumors that can invade the left recurrent laryngeal nerve and result in laryngeal nerve palsies, causing impaired airway protection and cough, as well as dysphagia. Alternatively, damage can occur during hilar lung tumor resection or mediastinal lymph node biopsy. Radiation therapy to the mediastinum may cause esophagitis, which can result in odynophagia, pain on swallowing. Chemotherapy can cause direct toxicity on the oral, pharyngeal or esophageal mucosa, or may result in infection during periods of myelosuppression. This can result in altered taste, pain, reduced appetite, nausea, mucosal bleeding and formation of lesions such as herpes simplex virus or varicella zoster.35 Cancer patients suffering from dysphagia and/ or odynophagia need extra support and nutritional interventions to ensure that their nutritional requirements are met.

Progressive Neuromuscular Diseases Amyotrophic Lateral Sclerosis. Amyotrophic lateral sclerosis, or ALS, is encountered with unfortunate regularity in patients on a palliative care service. A rapidly progressive degenerative disease of unknown etiology, ALS involves the motor neurons of the brain and spinal cord.36,37 One quarter of ALS patients present with difficulty swallowing as their initial complaint, while other patients begin with distal weakness that travels proximally to involve the bulbar musculature. As the disease progresses, there is involvement with upper and lower motor neurons, affecting speaking, walking, writing, etc, and ultimately the respiratory system. Respiratory failure is the usual cause of death in patients with ALS because of weakness in diaphragmatic, laryngeal, and lingual function.37 Patients typically live between 3 and 5 years after diagnosis, making a multi-disciplinary team approach critical in caring for these patients.38 Although there is no cure for ALS, numerous pharmacological agents are being researched to treat various symptoms of the disease. Riluzole, a glutamate antagonist, is currently the only pharmacologic treatment for ALS approved by the United States Food and Drug Administration and has been found to slow the progression of

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the disease and extend life expectancy by several months.38–40 Non-invasive ventilation can help to manage respiratory failure due to neuromuscular weakness and may slow its rate of decline and prolong quality of life.39 Typically, patients with bulbar ALS experience a reduction in tongue mobility, oral and pharyngeal muscle weakness, and fatigue with eating. They experience progressive difficulty with the ability to chew and to control material in the mouth. They may experience nasal regurgitation of fluids and loss of control over liquids, resulting in aspiration and coughing before the swallow is triggered. With disease progression, heavier foods—even pureed—are difficult to manipulate, resulting in significant residue in the oral cavity. Reduced pharyngeal drive also results in residue in the pharynx. Diet modifications with calorie-dense foods and postural alterations are necessary if oral intake is to continue. Many patients reach a point where the effort involved in eating is too great, significant weight loss and frequent choking may occur and the pleasure is lost. If the patient chooses, a gastrostomy tube is placed percutaneously (PEG) to provide nutrition, and sometimes supplemental oral intake for pleasure is possible. Early placement of a PEG tube may prolong survival, reduce complications and improve quality of life in some ALS patients when placed before body mass index has significantly dropped and before vital capacity drops below 50 anticipated. However, this has not been confirmed by large, randomized controlled trials. 8,37,39,41,42 Parkinson’s Disease and Parkinsonian Syndromes. Parkinson’s disease is a relatively common, slowly progressive disease of the central nervous system, marked by an inability to execute learned motor skills automatically.39 Classic motor symptoms include resting tremor, bradykinesia (slowness of movement) and rigidity, gait dysfunction and postural instability. Nonmotor features may include autonomic disturbances, sleep problems and cognitive dysfunction.43 The largest etiological group is idiopathic; however, Parkinsonlike symptoms may occur as a result of medications, toxins, head trauma, or degenerative conditions.37 Dysphagia in Parkinson’s disease may be oral,pharyngeal and/or esophageal and is related to changes in striated muscles under dopaminergic control and in smooth muscles under autonomic control.37 The oral stage is associated with rigidity of the lingual musculature rather than weakness.44 Small-amplitude, ineffective tongue-rolling movements are observed as patients attempt to propel the boluses into the pharynx. As a result, pharyngeal swallow responses are delayed, with aspiration occurring before and during the swallow. Expectoration of cough-aspirated material is weak because of rigidity of the laryngeal musculature. Incomplete opening of the upper esophageal sphincter and esophageal dysmotility are also commonly observed in patients with Parkinson’s disease.34,37 Even mild swallowing impairments may cause changes in quality of life for patients with PD and their caregivers and often adds to their perceived burden and worries.45

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In the early stages, antiparkinsonian medications such as levodopa or dopamine agonists improve flexibility and speed during swallowing. This medical therapy does not stop progression of the disease, however, and the majority of patients with PD continue to decline.43 However, pharmacotherapy has only a limited amount to offer dysphagic patients with severe symptoms and sometimes non-oral feeding is necessary.46 Dysphagia and resultant pneumonia is one of the most prevalent causes of death in patients with Parkinson’s disease.37,45 Two other progressive neuromuscular diseases include progressive supranuclear palsy (PSP) and multiple system atrophy (MSA). PSP is often initially misdiagnosed as Parkinson’s.47 Early development of orthostasis, falls and vertical gaze palsy are cardinal features of PSP and distinguish it from Parkinson’s disease.48 Patients with PSP do not respond as well as patients with Parkinson’s disease to pharmacological treatment, and thus their dysphagia may be more aggressive and more life threatening.34 Multiple system atrophy is a progressive neurodegenerative disorder characterized by parkinsonism, ataxia, pyramidal signs such as spasticity, and autonomic failure such as orthostatic hypotension. Generally, most patients with MSA do not respond to L-dopa treament or respond only short-term. Myopathies. Myopathy is a neuromuscular disorder that results in muscle weakness and can be either inherited or acquired. Some causes can be treated, such as infectious, toxic, endocrine, and alcohol related. The group of myopathies known as muscular dystrophies are chronic and progressive, resulting in progressive muscle weakness affecting oral, pharyngeal and esophageal muscles. Oculopharyngeal muscular dystrophy (OPMD) is an autosomal dominant muscle disorder with hallmark features of a slowly progressive ptosis and dysphagia, proximal limb and facial weakness and abnormal gait with onset generally occurring after age 40. The leading causes of death for patients with OPMD are recurrent aspiration pneumonia and malnutrition.49 Duchenne’s muscular dystrophy is a childhood form that generally occurs in boys before the age of 6 and results in severe dysphagia by age 12.34 The dysphagic symptoms include reduced palatal elevation, weak pharyngeal contraction, reduced hyolaryngeal excursion and reduced esophageal motility. Patients tend to have secretions that pool in their pharynx, aspiration, reflux and poor GI motility. Medical and drug treatments are not effective in treating the disease and thus treatment focuses on management of the symptoms. Surgically, there is some evidence that a myotomy of the UES/ cricopharyngeus and/or upper esophageal dilation may be beneficial in cases of moderate/severe dysphagia where there has been no significant weight loss and with adequate pharyngeal contraction.50 Multiple Sclerosis. Multiple sclerosis (MS) is characterized by multifocal plaques of demyelination within the central nervous system that affects approximately 400,000 people

in the US.51 The scattered inflammatory white-matter lesions observed in the central nervous system result in varying combinations of motor, sensory, and cognitive deficits, which usually run a remitting–relapsing course that may then progress to the secondary progressive form within 10 years.8,37 Symptoms that may affect quality of life include fatigue, spasticity, paroxysmal symptoms, pain, ataxia, bladder and bowel dysfunction, depression, cognitive problems and dysphagia.52–54 Dysphagia has been found to occur in 34 of MS patients and was closely related to those patients with brainstem impairment and those who are non-ambulatory.55 Dysphagia occurs primarily in the end stages, and is generally amenable to compensatory strategies in all but the most severe cases.55 Difficulties arise with respect to the feeding process because of hand tremors and spasticity. Sclerosed plaques can be found in the cortex and the brain stem and can affect cranial nerves. Therefore, swallowing dysfunction will depend on the location of the lesions.

Dementia Dementia can result from many causes, including Alzheimer’s disease, cumulative brain damage from multiple small cerebral infarcts (vascular dementia), advanced stages of other diseases such as Parkinson’s or Huntington’s disease, frontotemporal dementia, Lewy Body disease, and excessive and chronic alcohol use. In addition, patients can demonstrate cognitive decline from chronic metabolic derangement, sedating medications, and/or depression.8 Dementia causes progressive memory loss, poor awareness, loss of language abilities, inactivity, agitation, and confusion. Dysphagia in patients with dementia is extremely prevalent, and may be as high as 93.34 As a result, patients with dementia frequently encounter pneumonia, malnutrition and dehydration particularly in the advanced stages of the disease. Swallowing problems that arise in the late stages of dementia are generally not reversible, although treating concomitant infections, metabolic disarray and/or dehydration may result in improved functioning.34,56 No single dysphagia profi le exists for demented patients because of the variety of causes of the disease. However, common observations include the inability to feed self independently and to remain focused for the duration of the meal. Some patients do not engage in the task of eating and swallowing. They may hold food in their mouth for prolonged periods without mastication or bolus formation, especially with uniformly textured foods such as pureed items or bland foods. Decreased consciousness predisposes patients to aspirate food and liquid. As a result of sensory impairments and lack of attention, the patient may fail to control the bolus in the mouth and lose it prematurely over the tongue base and into the larynx before the pharyngeal swallow has been elicited, resulting in aspiration. Moreover, their distractible or agitated behavior may prolong the feeding time and hence reduce the amount of nutrition and hydration received. As dementia progresses, patients develop a lack of desire in eating

Dysphagia, Xerostomia, and Hiccups as a hallmark feature of late-stage dementia.57 Malnutrition and dehydration can produce medical complications that in turn exacerbate the cognitive decline even further.8,57 There is growing consensus amongst medical care providers who work with the elderly and those with dementia that a palliative care approach should be taken, especially in late-stage dementia, including not using feeding tubes. The American Geriatrics Society (AGS) states, “The use of tube feedings, in patients with advanced dementia, is unlikely to provide medical benefit or improved comfort. In general, the benefits versus the burdens of TF do not support its use in these patients with advanced dementia.”56

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significantly compromised pulmonary systems that impede airway protection and/or general weakness and deconditioning from a multitude of illnesses and lengthy hospital stays. In these patients’ fragile and immunocompromised condition, they are at much higher risk for suffering from pulmonary infections and negative outcomes should they aspirate, and fatigue may impede their ability to sustain their nutrition. Difficulty in completing oral care due to a low level of consciousness and/ or presence of an endotracheal tube can promote colonization of oral bacteria in the hospitalized patient. Aspiration of colonized oropharyngeal contents (secretions, vomitus, food/liquid mixed with colonized secretions) has been found to be a major contributor to aspiration pneumonia.59,60

Medical Etiologies Medications Systemic Dysphagia. The broadest category of causes of dysphagia includes inflammatory and infectious factors, which affect oral, pharyngeal, and esophageal stages of swallowing. Autoimmune inflammatory disorders can affect swallowing in either specific organs or the immune system as a whole. Pharyngeal and esophageal symptoms can be very common in this group of diseases. This category of diseases includes polymyositis, scleroderma, inflammatory myopathy and secondary autoimmune diseases. Sometimes, intrinsic obstruction is observed, such as in Wegener’s granulomatosis. With other disorders, there is external compression, as in sarcoidosis, abnormal esophageal motility as in scleroderma, or inadequate lubrication as in Sjögren’s syndrome.34 Poor esophageal motility restricts patients to small meals of pureed or liquid substances, and eating duration is long and drawn out. Patients report the sensation of solid foods getting caught in the esophagus. Weight loss is frequent. Gastroesophageal reflux results from poor esophageal peristalsis.58 Candida esophagitis can occur in an immunocompromised host, such as in patients with AIDS or patients who have undergone chemotherapy. Dysphagia for solids is greater than for liquids, and patients frequently complain of food getting caught. Heartburn, nausea, and vomiting are other common complaints.34 General Deconditioning. Multisystem diseases, including the more frequently encountered progressive diseases such as end-stage chronic obstructive pulmonary disease, coronary artery disease, and chronic renal failure, cause insidious weakness. Weight loss in these patients is a common consequence because of reduced endurance for activities of daily living, including eating and swallowing. Patients with emphysema or COPD have difficulty coordinating swallowing and respiration, and may be unable to tolerate the obligatory cessation of breathing required for airway protection during the swallow. General immobility impairs spontaneous pulmonary clearance, resulting in an inability to expectorate material if it is aspirated. Patients are often discouraged and depressed by their loss of independence and declining health. Dysphagia is often encountered in medical patients within the hospital setting who may have cachexia, loss of muscle mass,

Medications can create or worsen dysphagia. There are 160 known medications that list dysphagia as a potential adverse side effect.61 The number of medications increases proportionally to the number of disorders to be treated, but their reactions may be exponential. Medications can affect all stages of swallowing including lubrication of the oral cavity and pharynx, taste and smell, reduced coordination or motor function, impaired consciousness, GI dysfunction and local mucosal toxicity.34,61 Antipsychotic or neuroleptic medications can produce extrapyramidal motor disturbances, resulting in impaired function of the striated musculature of the oral cavity, pharynx, and esophagus. Long-term use of antipsychotics may result in tardive dyskinesia, with choreiform tongue movements affecting the coordination of swallowing. Delayed swallow initiation is a reported side effect of some neuroleptic medications. Use of antipsychotic medications within the hospital setting has been found to result in impaired swallowing function with worsening of swallowing function as dosage increases.62 Anticonvulsants such as Phenobarbital, Tegretol and Dilantin may all have adverse effects and may impact CNS functioning, drowsiness and motor incoordination.34 Antihistamines and anti-depressants may reduce taste and smell and decrease lubrication. Many of these medications can also alter GI motility, cause mucositis, or increase reflux including antipsychotics, antidepressants and antihistamines. Medications should always be reviewed to determine if they may be contributing to or causing a dysphagia.61

Role of the Speech-Language Pathologist in End-of-Life Care Speech-language pathologists (SLPs) are the expert specialists in assessment and management of communication and oropharyngeal swallowing disorders, although the traditional model of “rehabilitation” will likely need to be altered within the context of the goals of care of the palliative care patient. Their role as part of the multidisciplinary team in patients at the end of life can help to add comfort and maximize quality of life, as well as support the patient and familyand help

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prepare them to deal with the progressive symptoms of dysphagia that may accompany their disease. The SLP can use his/her knowledge to carefully explain the swallowing process and disorder, use empirical data to determine swallowing potential and prognosticate in order to assist in decision making. The SLP may provide further assistance to the care team by determining ways to best communicate with a patient who has impaired communication abilities, including speaking valves for the tracheostomized or assistive and augmentative communication devices. This can improve the patient’s ability to participate in decision making and in expressing their wishes—hallmark features of palliative care.5,62 A comprehensive swallow evaluation done by the SLP includes a thorough review of the patient’s medical history and presenting complaint, evaluation of their alertness, hemodynamic stability and oromotor functioning, as well as observation of swallowing of various liquid and solid food consistencies, depending on the safety and appropriateness. An instrumental swallow evaluation may be indicated to further delineate swallowing physiology, determine effectiveness of various swallowing strategies and clarify or confirm aspiration risk (see below for more information). Treatment goals are individualized to the patient and may focus on improving swallow function, while for others they may focus on maximizing residual abilities, or maintaining some oral intake while ensuring safety and efficiency of nutrition. Speechlanguage pathologists who care for dying patients must carefully weigh what will benefit the patient and what will be burdensome. They need to be knowledgeable in the disease processes underlying the palliative care patient, cognizant of the spiritual and emotional issues, skilled in biomedical ethics and legal issues, and highly sensitive to the psychosocial ramifications of altering oral diets.1,63–65

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Assessment Evaluation of dysphagia in patients receiving palliative care is best accomplished within a multidisciplinary framework where the patient’s needs and wishes are held paramount. Approaching the evaluation of swallowing in the terminally ill patient demands a holistic view and reaches beyond the physiology of deglutition. While aspiration of food or liquid could realistically evolve into aspiration pneumonia, paradoxically, committing a patient to non-oral feeding or non per os (NPO) is also fraught with complications. It therefore behooves caregivers to carefully consider the multiple parameters in decision-making about oral nutrition in the terminally ill patient. The matter is not a simple decision of “if the patient is aspirating food, he or she should not receive nutrition orally.” For the patient with a life-threatening illness, the goals of the clinical swallowing evaluation are to: (1) identify the underlying physiological nature of the disorder; (2) determine whether any short-range interventions can alleviate the dysphagia; and (3) collaborate with the patient, family,

and caregivers on the safest and most efficacious method of nutrition and hydration. Balancing the safety and health of the patient with quality of life issues is integral to the assessment.1

Clinical History A comprehensive understanding of the difficulties involved in swallowing depends in large part on a detailed history from the patient and caregivers. Eliciting a description of the patient’s complaints about swallowing is critical to painting a picture of the physiological basis of the problem and to integrating these hypotheses with attitudes and wishes about eating and not eating. Details of disease progression along with the accompanying emotional and psychological impact on the patient and the family should also be considered when determining the aggressiveness of a swallowing work-up and its treatment. The swallowing history may indicate a mechanical obstruction etiology or an underlying neuromuscular cause. Asking the patient which foods are easier and which are avoided, with special focus on liquids versus solids, provides clues about the location of the disorder. For example, patients who complain of solid food dysphagia and localize the area of difficulty to the throat may present with bolus propulsion problems, whereas those who choke on liquids may have a sensory deficit with mistiming of airway protection. It is important to note low diagnostic specificity regarding the patient’s localization of the problem with radiographic or endoscopic findings.66 Information about the patient’s current eating habits and diet should be elicited. Does the patient choke on all consistencies of solid foods and fluids? Can the patient feed himself or herself? How have meal times changed since the illness? What is the total calorie intake the patient receives on a daily basis, and how far short does this fall from the patient’s nutritional requirements? Length of meal times and effort required are indicators of eating efficiency. Additional areas of concern include appetite, factors that appear to alleviate or exacerbate the problem such as positioning, time of day, ability to swallow medication, and the presence of pain on swallowing. Table 11–1 lists frequently encountered complaints by patients regarding swallowing and their potential physiological counterparts. The current complaints with respect to the physiology of swallowing are as important as the patient’s previous attitudes toward eating. These attitudes form the foundation on which management strategies are implemented. The patient with a poor appetite, fatigue, and a sense of hopelessness will understandably be less compliant and less motivated to engage in a complex treatment program. Alternatively, the patient who derives much satisfaction from eating and drinking and wishes to continue with a regular diet, will not be satisfied with significant alterations in texture and consistency. Additionally, the patient and caregivers should understand and consider the competing benefits and risks regarding nutrition, with attention to the patient’s preferences.


Table 11–1 Patient Complaints of Swallowing Difficulty and Their Possible Physiological Correlates Patient’s Complaint

Physiological Impairment

Choking on fluids

Poor tongue control for oral manipulation Impaired laryngeal closure Delayed onset of pharyngeal swallow Weak chewing Diminished endurance Incompetent velopharyngeal mechanism Reduced oral and hypopharyngeal sensation Reduced or impaired saliva production Weak tongue-driving force Impaired laryngeal excursion fails to open upper esophageal segment Poor esophageal motility or esophageal obstruction Gastroesophageal reflux Esophagitis, mucositis, esophageal obstruction Reduced frequency or efficiency of swallowing Poor esophageal motility or obstruction

Protracted meal times Nasal regurgitation of fluids Difficulty getting swallow started Dry mouth Solids caught in throat

Regurgitation or emesis after swallowing Sour taste in mouth after eating Pain on swallowing Excessive drooling Food sticking in thoracic or chest region

Examination of Swallowing by Direct Observation Direct observation by a perceptive clinician of the patient while eating, drinking, or taking medications can yield valuable information about the underlying disorder. As discussed previously, the speech-language pathologist is vigilant for indications of chewing inefficiencies, aspiration, or obstruction. Table 11–2 lists warning signs that can alert caregivers to possible swallowing problems. Usually, the clinician assesses the patient’s oral-motor and sensory function and cognitive communicative function, while observing the partaking of a variety of liquid and solid foods (e.g., semi-solid, soft solid, and, where appropriate, food requiring mastication). Speech and voice are analyzed to determine the underlying physiology of the swallowing disorder. Since aspiration may be silent in up to 40 of patients with dysphagia, close attention is paid to occult signs of aspiration, including wet vocal quality or gurgliness, frequent throat clearing, delayed coughing, and oral/pharyngeal residue.8 Assessment of Airway Protection. Functional airway protection is a critical predictor of safe swallowing and, thus, an important element of the clinical swallowing evaluation. Effective airway protection entails timely and complete laryngeal closure during swallowing and the efficient expectoration of material in response to aspiration. Audible strong cough at the glottis and pharyngeal contraction, which is necessary for bringing up a sputum sample, are required for functional airway protection. Patients who have weak voices and weak respiratory force for coughing and pulmonary clearance are at risk for pulmonary compromise. Airway protection cannot be definitively discerned from a clinical evaluation alone. Although the clinician may palpate moderate superior and anterior laryngeal elevation on swallowing, may

Table 11–2 Indications of a Swallowing Disorder Reduced alertness or cognitive impairment Coma, heavy sedation, dementia, delirium Impulsivity with regard to eating, playing with food, inattention during eating Alterations in attitudes toward eating Refusal to eat in the presence of others Avoidance of particular foods or fluids Protracted meal times, incomplete meals, large amounts of fluids to flush solids Changes in posture or head movements during eating Laborious chewing, multiple swallows per small bites Signs of oral–pharyngeal dysfunction Dysarthria or slurred, imprecise speech Dry mouth with thick secretions coating the tongue And palate Wet voice with “gurgly” quality Drooling or leaking from the lips Residual in the oral cavity after eating Frequent throat clearing Coughing or choking Nasal regurgitation Specific patient complaints Sensation of food getting caught in the throat Coughing and choking while eating Regurgitation of solids after eating Pain on swallowing Food or fluid noted in tracheotomy tube Inability to manage secretions Drooling Shortness of breath while chewing or after meals Regurgitation of food or fluid through the nose Difficulty initiating the swallow Unexplained weight loss

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perceive a normal vocal quality, and may not observe cough on swallowing, the patient may in fact be silently aspirating.67 Silent aspiration can only be confirmed definitively with an instrumental examination. Previous radiation therapy, as well as cranial nerve IX (glossopharyngeal) and X (vagus) deficits, may all contribute to the picture of silent aspiration. Depending on the stage of progression of the patient’s illness and overall management goals, it may be prudent to identify silent aspiration with the aim of limiting progression with behavioral strategies. Assessment of Oral Hygiene. The status of the oral mucosa and general oral hygiene reflect a patient’s ability to manage secretions and swallowing. As mentioned earlier, xerostomia may exacerbate, and in some cases even cause, difficulty swallowing. Patients who require supplemental oxygen delivered via a nasal cannula frequently experience dryness in the oral cavity. Severe illness and many medications may alter the normal oral environment, salivary production and the growth of oral bacteria.68 It is not uncommon to find dry secretions crusted along the tongue, palate, and pharynx in patients who have not eaten orally in some time. Dental caries and dentures that are not well cared for can also contribute to a state of poor oral hygiene as well as poor quality of life. Before giving the patient food or liquids, even for assessment purposes, it is vital to clear the oral cavity of extraneous secretions, using mouth swabs, tongue scrapers, toothbrushes, and oral suction if necessary. If dried oral secretions are extensive, use of moist swabs alone is generally not effective and toothbrushes should be utilized. Use of a flashlight is recommended to assist in carefully inspecting the back of the mouth. Caution should be taken when completing oral care as dried oral secretions may loosen during trials of fluid and inadvertently obstruct the airway. Providing humidification via a shovel mask or face tent and consistent oral care for the hospitalized patient may help to loosen secretions, moisten the oropharyngeal mucosa, and maximize comfort. Screening of Swallowing Function. In the last several years there has been increased awareness for the need to screen swallowing and assess risk for aspiration before giving patients anything to eat or drink, including oral medications.69 This has been largely driven by the extensive research done on acute stroke patients and their high risk of aspiration (40–60), the close relationship between aspiration and aspiration pneumonia, and the evidence that shows that mortality rates in acute stroke patients with pneumonia are three times higher than those without.70 As a result, since 2005, several national regulatory and safety guidelines including JCAHO and American Heart Association state that all acute stroke patients should have their swallowing screened before being given anything orally. Although this currently relates to acute stroke patients, there is increasing awareness of the risk of aspiration and the need to determine swallowing safety in many hospitalized patient populations.71,72 The swallow screening is

typically done by the nurse and identifies potential aspiration risk, assists in determining if a patient is safe to start eating and drinking, and helps to determine if a patient requires a full evaluation by the SLP . It cannot, however, determine an etiology or underlying phyisology of the swallowing disorder, and therefore cannot determine appropriate compensatory strategies, treatment or prognosis. Therefore, if a patient is felt to be at risk for aspiration, a comprehensive swallow evaluation should be completed. Evaluation of the Gag Reflex. A word of caution is needed regarding the gag reflex and oropharyngeal swallowing. The gag reflex and the pattern of neuromuscular events comprising the swallow are very different, both in their innervation and in their execution. The gag reflex is a protective reflex that prevents noxious substances arising from the oral cavity or digestive tract from entering the airway. It involves simultaneous constriction of the pharyngeal and laryngeal muscles closing the airway and the pharyngeal lumen and results in anterior movement of the tongue.73 A gag reflex is not elicited during the normal swallow and its assessment is not clinically relevant to ability to swallow.74 In fact, 20 to 40 of normal, healthy adults do not have a gag reflex.75 Unlike the pattern of events in the swallow, the gag reflex can be extinguished or reduced by a nasogastric feeding tube, endotracheal intubation, or repeated stimulation. Only evaluation of the biomechanical events of the swallow, not the gag reflex, can predict the safety of airway protection.

Instrumental Evaluation The clinical examination of swallowing is not conclusive regarding location of the swallowing disorder or the underlying physiology. Radiographic or endoscopic evaluation of swallowing are functional examinations providing valuable information for management. Sometimes disease progression with its sequelae, including inability to travel, inability to sit upright, wakefulness, pain and/or somnolence, preclude instrumental examination. Management shifts from maintenance to comfort, with compensatory behaviors being inappropriate. Videofluoroscopic Evaluation of Swallowing. Radiographic swallowing studies are helpful in understanding the underlying physiology of swallowing.8 The videofluoroscopic swallowing study (commonly known as modified barium swallow study or MBS) examines oropharyngeal swallowing with the patient positioned upright while swallowing a variety of consistencies of barium-coated foods (liquids, semisolids, and solids) in controlled volumes. Speech-language pathologists and radiologists perform these studies together. The study is recorded digitally and reviewed following the study for closer inspection of the anatomy and physiology. The goal of this study is not only to determine the presence or absence of aspiration, but also to evaluate the effectiveness of compensatory swallowing strategies (described below) that may decrease the risk of aspiration

Dysphagia, Xerostomia, and Hiccups and increase swallowing efficiency. The test is not invasive, takes a short time to administer, and provides valuable information that can be used in managing the dysphagia.8,76 In contrast to the videofluoroscopic swallowing study, which focuses on the oropharyngeal mechanism, a barium swallow study examines esophageal function and focuses on the anatomy of the esophagus, stomach and duodenum. The barium swallow identifies mucosal and anatomical abnormalities, esophageal strictures, and esophageal motility. It has less sensitivity for diagnosing gastroesophageal reflux, which is better assessed with pH monitoring and/or manonmetry.10,77 This test is conducted with the patient positioned upright and in the supine position while swallowing liquid barium or, in some cases, a barium tablet. Since the esophagus is under involuntary neural control, compensatory swallowing strategies cannot be assessed with this procedure. However, recommendations can be made for changing to liquid consistencies in a patient with an esophageal stricture. Fiberoptic Endoscopic Evaluation of Swallowing (FEES). Endoscopic examination of oropharyngeal swallowing can be performed at the bedside by a trained speech-language pathologist. The oropharynx and larynx can be visualized transnasally while the patient is swallowing food substances dyed with food coloring and the presence of laryngeal penetration, aspiration, and pharyngeal retention can be observed. As in the videofluoroscopic swallowing study, compensatory swallowing strategies such as postural modifications or swallowing maneuvers can be evaluated for their efficacy.78 In contrast, endoscopic evaluation of the esophagus and stomach (Esophagogastroduodenoscopy or EGD) is completed by a Gastroenterologist and can confirm the presence of strictures and mucosal anomalies. The assistance of a gastroenterologist may be required in cases requiring palliative dilation of the esophagus.34

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intervention strategies aimed at increasing swallowing safety and efficiency. These include alterations in head and neck posture, consistency of food, sensory awareness, and feeding behaviors. The chief advantage of these strategies is that they are simple for the patient to learn and to perform. In addition, once their effectiveness is determined, the patient can use the intervention during meals to improve swallowing function. In 2008, a large, multi-site, randomized clinical trial of patients with a diagnosis of dementia and/or Parkinson’s disease was published examining the effects of three compensatory interventions to prevent aspiration of liquids, including chindown posture, nectar-thickened liquids, and honey-thickened liquids. It demonstrated that determining which strategy or combination of strategies may be most effective is highly individualized, that there is no uniform effectiveness in any one of these strategies, and that effectiveness can only be determined by an objective swallowing evaluation.79 Postural Modifications. Postural changes during swallowing often have the effect of diverting the food or liquid to prevent aspiration or obstruction but do not change the swallowing physiology.7,8 A commonly used strategy is the chin tuck posture. This posture has the advantage of increasing the pressure on the bolus and restricting the opening of the larynx during swallowing, thus potentially reducing the risk of laryngeal penetration and aspiration. However, in select cases, a chin tuck may exacerbate the aspiration, underscoring the need for radiographic evidence of its clinical value, if at all possible. Head rotation to the weak side in a patient with head and neck cancer is another postural change that may assist bolus flow down the intact side by obstructing the weak side and, hence, preventing residue or aspiration. These strategies may be used in isolation or in combination, depending on the nature of the underlying swallowing pathophysiology. Table 11–3 lists some of the postural strategies that the SLP may introduce, and their potential benefits on bolus flow.

Management Effortless, efficient, and safe swallowing are important criteria for continued oral nutrition. Experience has shown that most patients prefer oral alimentation even if it means they do not receive sufficient nutrition. Patient autonomy in shared decision-making is a critical ethical principle to respect but should be accompanied by a clear understanding of the risks involved in eating by mouth. Specifically, families and patients should be informed about the risks and consequences of developing aspiration pneumonia and malnutrition. If the decision is to continue with oral intake, the safest diet should be suggested and aspiration precautions introduced, using assessment of the swallowing problem as a guide. Compensatory Swallowing Strategies The physiologic information obtained from clinical and instrumental swallowing assessment facilitates on-line assessment of

Changes in Texture and Consistency of Food. Underlying physiological constraints, such as reduced tongue control or strength, may affect the safety of swallowing certain food consistencies. For example, a patient with profound tongue weakness, such as in advanced ALS, may exhibit signs of aspiration on thin liquids, but may have sufficient control to drink liquids thickened to nectar-like or honey-like consistency in small sips. Patients debilitated by chronic disease and who lack endurance to complete a meal may benefit from ground or pureed moist foods that require limited mastication. In certain circumstances, altered food consistency is the only way a patient can continue to eat orally—for example, in the patient with esophageal carcinoma or a severe esophageal motility disorder. Some nutritional supplement drinks are both thicker liquids and calorically fortified, providing a safer alternative to more solid consistencies. Changes in the consistency of food and liquid are frequently difficult for patients because they often lack appeal.

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Table 11–3 Compensatory Postural Changes that Improve Bolus Flow and Reduce Aspiration and Residue During Swallowing Postural Strategy

Effects on Bolus Flow

Chin tuck

Closes laryngeal vestibule, pushes tongue closer to posterior pharyngeal wall, and promotes epiglottic deflection Promotes posterior bolus movement with assistance of gravity Directs bolus down stronger side with assistance of gravity Diverts bolus away from weaker side by obstruction of weaker pharyngeal channel, promotes opening of upper esophagus Directs bolus down stronger side while increasing closure of laryngeal vestibule Diverts bolus away from weaker side while facilitating closure of laryngeal vestibule and vocal folds

Head back Head tilt to stronger side Head turned to weaker side Head tilt plus chin tuck Head rotation plus chin tuck

Source: Logemann (1998), reference 8.

Thus, this management strategy should be used as a last resort and reserved for patients who are unable to follow directions to use postural changes or for whom other compensatory strategies are not feasible.8 See Appendix 1 for a list of cookbooks that can assist patients and care providers in preparing foods and liquids that have altered textures and may be easier to swallow.

who fail the above regimen may be considered for antiviral agents.80 A prokinetic agent may be prescribed for poor esophageal motility, and proton pump inhibitors or a histamine-2 blockers such as ranitidine have been found to be effective in patients with gastroesophageal reflux disease.61 Botulinum toxin (Botox) injected into the lower esophageal sphincter can temporarily induce relaxation when LES spasm is present.61

Increased Sensory Awareness. Sensory enhancement techniques include increasing downward pressure of a spoon against the tongue when presenting food in the mouth and presenting a sour bolus, a cold bolus, a bolus requiring chewing, or a large-volume bolus. These techniques may elicit a quicker pharyngeal swallow response while reducing the risk of aspiration. Some patients benefit from receiving food or liquid at a slower rate, while others are more efficient with larger boluses. Enhancing the bolus characteristics to include more texture can sometimes induce mastication and bolus formation more readily than a bolus that is both flavorless and homogenous in texture. This is particularly evident in patients with advanced dementia. Patient responses to these behaviors can be evaluated at the bedside, and the findings can be easily communicated to the caregivers.8

Sialorrhea and Secretion Management. Sialorrhea, or excessive drooling due to the inability to control oral secretions, may often occur in patients with motor neuron disease and parkinsonian diseases due to impaired swallowing function, reduced frequency of swallowing, reduced oropharyngeal or laryngeal sensation, poor head posture, inability to close the oral cavity and a weak cough with poor clearance of secretions. Up to 80 of patients with Parkinson’s Disease experience sialorrhea.81,82 Excessive salivation can be embarrassing and socially disabling, as well as contribute to medical developments including skin irritation, poor oral health, dehydration and increased risk of aspiration pneumonia. In the early stages, behavioral, compensatory and strengthening exercises via speech-language therapy may be helpful. In more severe disease, treatment options include anticholinergic medications (glycopyrrolate, scopolamine, benztropine); botulinum toxin; radiation therapy to the parotid and submandibular glands; and surgical resection of either the parasympathetic neural pathway or of the submandibular and salivary glands. However, each of these treatment options has significant side effects and may be contraindicated or poorly tolerated in various populations.83–85 Patients with weakened cough and weakness of the respiratory muscles have an increased risk of mucus plugging, atelectasis and pneumonia. An insufflator-exsufflator or cough-assist device may help to improve air movement and strength of the cough and thus achieve greater pulmonary secretion clearance.83

Pharmacological Management. There are no pharmacological agents that directly act on oropharyngeal swallowing function. However, there are agents for concurrent issues, which can exacerbate an underlying mucosal problem and medications that may effectively treat GI motility, reflux, and nausea and vomiting.61 This includes yeast infections such as candidiasis, and sialorrhea or excess secretions. Candida esophagitis requires oral antifungal agents such as nystatin topical. Other antifungal medications include ketoconazole, miconazole, fluconazole, and amphotericin B. Immunocompromised patients with candidiasis require potent systemic antifungal medications. Resistance can occur, however, in patients with long-term prophylaxis. Patients


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Table 11–4 Diet Modifications for Patients with Dysphagia Diet

Definition

Example

Indication

Pureed diet

Blenderized food with added liquid to form smooth consistency; No chewing necessary Ground, fi nely chopped foods that form a cohesive bolus with minimal chewing Naturally soft foods requiring some chewing; food is cut in small pieces; serve with gravy to moisten Honey consistency

Applesauce, yogurt, moist mashed potatoes, puddings

Reduced tongue function for chewing, impaired pharyngeal contraction, esophageal stricture Some limited chewing possible but protracted due to impaired tongue control

Mechanically altered diet Soft, moist diet

Liquids

Nectar consistency

Pasta, soft scrambled eggs, cottage cheese, ground meats Soft meats, canned fruits, baked fish; avoid raw vegetables, bread, and tough meats Similar in viscosity to honey; available in readyto-serve packaging or use thickening agent Similar in viscosity to tomato juice; less thick than honey consistency

Dietary Changes. Evaluation results highlight the most appropriate nutritional method for the patient. If oral alimentation has been determined as safe, the guiding principle for diet is to ingest the maximum amount of calories for the least amount of effort. Examples of modified diets are listed in Table 11–4. Nutritionists can provide individualized suggestions for calorie-dense foods or high-calorie liquid supplements, depending on the patient’s metabolic status. Patients with oropharyngeal dysphagia may require thickened liquids. Commercial thickening agents from modified food starch or gum-based (xanthan, guar, cellulose) can be used to thicken liquids. Gum-based thickeners have improved performance over starch-based in terms of stability over time and temperature.86 Thickened liquids release the fluid in the gastrointestinal tract, do not alter the body’s absorption rate of fluids, and provide water for hydration requirements.87 Feeding the Patient. While there is no cure for a swallowing disorder in the terminally ill patient, continued ability to eat by mouth may be facilitated by careful hand-feeding techniques and strategies employed by family and caregivers. These techniques will vary depending on the underlying swallowing/ feeding difficulty. Compliance with feeding strategies is often related to understanding of the rationale. Family members are more likely to feed a patient a particular diet and in a particular manner if they understand the physiological and psychological reasons for the recommendation and if they have been included in the decision-making.8 Although hand feeding is time consuming, it allows for continued intimate contact between patient and caregiver. Feeding the patient provides caregivers with a way to interact and connect and a way to demonstrate their care and compassion.5

Reduced endurance for prolonged meal due to tongue weakness for chewing, reduced attention span Reduced oral or lingual control, premature spillage, delayed swallow initiation and airway closure Reduced bolus control, premature spillage, delayed swallow and airway closure

Additional suggestions for feeding the patient include the following: 1. Remove distractions at mealtime. This is appropriate for patients who need to concentrate on swallowing to increase safety, such as patients with head and neck cancer who are using compensatory swallowing strategies, and for patients who easily lose their focus and need to be fed, such as patients with Alzheimer’s dementia.88 2. Emphasize heightened awareness of sensory clues. Feeding patients larger boluses, increasing downward pressure of the spoon on the tongue to alert the patient that food is in the mouth, or feeding patients cold or sour boluses or foods requiring some mastication may improve oral sensation and awareness. Some patients with Alzheimer’s disease demonstrate the most efficient swallow when offered finger foods that require chewing. These foods allow them to tap into the automatic motor rhythm of chewing and swallowing that is reminiscent of the patterns they have used all their lives. 3. Provide feeding utensils. Patients who have feeding difficulties associated with hand tremors or weakness may be aided with devices such as weighted cuffs or built-up utensils. Occupational therapists are often able to provide individualized assistive devices to patients. 4. Position the patient. Ensure optimal posture of the patient at meals. Sit the patient as upright as possible when eating, drinking or taking medications. Reduce the tendency to slump forward, which may cause loss of food from the oral cavity, or head extension, which

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Symptom Assessment and Management can promote an open airway and make the patient more vulnerable to aspiration. 5. Schedule meal times. Timing of meals to coincide with increased function, either due to effects from fatigue or medications, may enhance swallowing efficiency and safety. Increased frequency of small meals may help patients who do not have sufficient efficiency or endurance to complete an entire meal at one time.

Non-oral Nutrition. Some patients require primary non-oral feeding, and gastrostomy or jejunostomy tubes are placed endoscopically or in open surgical procedures. Some patients, such as those with esophageal cancer, head and neck cancer, or ALS, have had their feeding tubes in place for several months prior to the terminal period. For other patients, families and caregivers may have recently decided to pursue the non-oral feeding option. Irrespective of the scenario, the following should be considered: 1. Patients and their families need to be fully informed regarding benefits and risks of non-oral and oral feeding options in order to make fully informed decisions. Involving the patient and family in shared decision-making helps to ensure that the plan is consistent with their preferences.3 2. Knowing that progressive dysphagia and loss of appetite is typical for patients with many progressive diseases mentioned in this chapter, medical teams and families caring for these persons should begin to consider the patient’s wishes early in the disease process in order to incorporate these wishes into the care plan.56 3. The presence of a feeding tube does not imply NPO, or nothing by mouth. Some patients are able to take small amounts of food for their pleasure. Restrictions to reduce the risk of aspiration may apply during these “trials” of oral intake, such as texture of the food, postural requirements, and length of the trial. 4. Patients who are fed non-orally remain at risk for aspiration and aspiration pneumonia from oral secretions and/or refluxed gastric contents, including tube feeding.59 A long-term study by Langmore and associates89 examined the predictors of aspiration pneumonia in 189 elderly patients, including such factors as oropharyngeal and esophageal dysphagia, medical and dental status, feeding status, and functional status. They found that the dominant risk factor for aspiration pneumonia was dependence for feeding—that is, inability to feed oneself. This variable included those patients who were tube-fed as well as those who were fed orally by a caretaker. This study found that patients who were tube-fed had a significantly increased risk of developing aspiration pneumonia. The authors posited that oral hygiene is frequently neglected in tube-fed patients, promoting colonization of bacteria, and aspiration of these secretions can result in pneumonia.

5. The decision to pursue the option of non-oral nutritional support has significant ramifications for both the patient and the family. The family may feel that they have neglected their obligation to nourish their loved one safely and may be overwhelmed by the demands of frequent nocturnal feedings, monitoring of gastric residuals, etc. However, in some disease processes and at early points in care, tube feeding may provide the patient with several more months of improved quality of life afforded by strength and endurance. Patients and families may also feel a sense of relief afforded to them because of the tube feeding. 6. Literature shows that feeding tubes have a limited role and are often overused in medical practice. Their placement should only be considered when the benefits (improving quality of life and/or mortality) clearly outweigh the burdens and are guided by the use of evidence-based placement guidelines.90 7. Seeking more creative solutions may help to ease the feeding decision. Hand feeding in small amounts and improving the care environment to maximize attention are two suggestions that have been made for patients with dementia. Interestingly, patients receiving hand feeding have in some cases had an equal duration of survival as those patients with gastrostomy tubes.44 One prominent geriatrician has recently proposed creating new solutions, such as Ensure lollipops or sublingual high-calorie drops.91,92 Gastroesophageal Reflux Precautions. Poor esophageal motility or reduced tone of the lower esophageal sphincter can be managed either pharmacologically with the pro-motility agents described above or with nonpharmacological interventions. Ideally, a combination approach is most efficacious. Gastroesophageal reflux precautions include: elevation of the head of the bed to 45 degrees at night, inexpensively and effectively accomplished by placing blocks under the head of the bed; frequent small meals; upright posture for 45 to 60 minutes after eating; monitoring of gastric residuals in tube-fed patients; and avoidance of spicy foods, coffee, tea, chocolate, and alcohol. Administration of Medication. Oral medications can present enormous challenges to patients with dysphagia. One study looking at pill swallowing in patients with chronic dysphagia found that more than 60 of subjects had difficulty swallowing tablets. Some of the physiologic difficulties they experienced included multiple swallows to clear the pill, residue in the pharynx after swallowing, increased time needed to swallow pills, use of liquid to assist in washing the pill down, and airway compromise.93 Because difficulty swallowing may impact compliance with medications, fi nding alternative modes of presentation can be critical. Compounding, done by a pharmacist, creates a medication tailored to the specialized needs of an individual patient by producing an alternative form such as a powder, inhalor,

Dysphagia, Xerostomia, and Hiccups liquid, lozenge, or suppository. Health care providers and patients should refer to the FDA statement on Regulation of Compounded Drugs found at: http://www.fda.gov/cder/ pharmcomp/default.htm. Crushing medications or burying them whole in a semi-solid food such as applesauce or ice cream creates a uniform consistency and makes swallowing easier. Alternately, patients can be offered their medications in elixir form. Orally disintegrating medication technology has been used to formulate medications that rapidly disintegrate in the oral cavity. One study comparing this method of presentation to oral tablets found that dysphagic patients rated orally disintegrating medications easier to swallow.93 Additionally, non-critical medications may be discontinued by the physician. Tracheostomy Tubes and Oral Intake. The presence of a tracheostomy tube, with or without mechanical ventilation, does not preclude oral intake, although it may significantly alter swallowing function.8 However, access to the upper respiratory tract via the trach improves pulmonary toilet in patients who have chosen to eat in spite of aspiration. Contrary to common thinking, an inflated trach tube cuff is not fully protective against aspiration.2,47 The seal in the trachea is not complete, and secretions and/or liquid material may collect above the cuff and ultimately can be aspirated.94 Ideally, the cuff should be deflated when the patient eats to reduce the tethering effect on hyolaryngeal excursion and improve oropharyngeal sensation and airflow in the upper airway.95,96 In turn, this affords a more effective cough ability and airway clearance and increased swallowing efficiency. Tracheal suctioning should be performed after meals in patients with dysphagia who have chosen to eat.

o]o]o] DRY MOUTH (XEROSTOMIA)

255

his airway, he was not allowed to eat or drink, because the team was afraid he would aspirate from his weakness and debility. However, because he was on high flow oxygen, he complained of thirst and dry mouth. After discussion with the family about his prognosis, the focus was changed to quality of life and allowing him to enjoy the food and drink he loved. The nurses gave him little spoonfuls of juice to relieve his dry mouth. They coated artificial saliva inside his mouth with an oral swab and applied lip balm. They brushed his teeth several times a day to stimulate saliva. His last wish was a martini. The family went across the street to a bar and ordered a drink to go. Mr. M was given the martini with mouth swabs, small bits of crushed ice, and by spoon. He enjoyed this with great pleasure. o]

o]

Definition Xerostomia is the sensation of oral dryness, which sometimes may be accompanied by decreased salivary secretions. Although patients receiving palliative care commonly experience oral dryness,97,98 it is often difficult to identify the exact underlying cause and contributing factors. Decreased salivary function and prolonged xerostomia cause myriad oral problems in the mouth, including dental caries, gum, tongue, and oral mucosal irritations and lesions, mouth infections, taste changes, and bad breath. In the esophageal region, problems include swallowing difficulties, along with alterations in speech formation and voice function.97–99 Such conditions may cause physical discomfort and emotional suffering, resulting in the retreat from socializing. Th is means missing the essential daily encounters: communicating, laughing, smiling, and eating.100,101 Treatment offers comfort to patients by focusing on both short and long term effects.

9= CASE STUDY Mr. M, A Patient with Cardiac Disease and Dry Mouth

o]

Mr. M was a 78-year-old man with a history of aortic stenosis, valve replacement and end-stage cardiac disease. One weekend, he developed shortness of breath and was admitted to the hospital. Work-up revealed infection of his valve and pneumonia. He was made NPO and placed on multiple antibiotics to prevent further infection. He became more agitated and more dyspnic, which necessitated intubation on a ventilator. It was difficult to wean him off the ventilator, but after several attempts, he was successful in breathing on his own. When he again became weak, he was placed back on intubation and is was difficult to wean him as before and took several attempts for him to breath on his own. His family decided that he would not want prolonged life support. The plan was that if anything happened, he would not undergo any further re-intubation. To protect

In a prevalence study of palliative care admissions, 55 experienced xerostomia.102 Other authors estimate that xerostomia affects 30 of palliative care patients.103,104 In palliative care, xerostomia is listed as a major source of discomfort in patients with cancer. Due to lack of studies outside of the cancer population, it is difficult to estimate the incidence of xerostomia. In noncancer, patients, there has not been much research except for Sjögren’s disease. Nonetheless, it has been described more in the population of patients with end-stage renal failure and end-stage cardiac disease seondary to imposed fluid restrictions.105,106 In the population at large, xerostomia increases with age and medical problems because medication therapy increases incidence.

Incidence

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o]

Pathophysiology Although saliva is necessary for oral nutrition, it also facilitates chewing, swallowing, tasting, and talking. The properties of saliva allow oral lubrication, gum and tissue repair, as well as help in gustation with food-bolus formation, and food breakdown. Additionally, saliva breaks down bacterial substances, offering immunoprotection for oral mucosa and dental structures.107,108 Saliva thereby inhibits dental caries and infections, while providing protection against extreme temperatures of food and drink.100,107–109,111 In this way, it has antimicrobial properties, buffering properties, and liquid properties to help with gustation. The function of saliva production is regulated by the nervous system. After experiencing smell, sight, or taste of food, the salivary glands are stimulated to produce saliva within 2 to 3 seconds.111 There is a two-step process to saliva secretion: production at the acinar level of the cells, and secretion where saliva is actually secreted into the mouth via the ducts.107 Saliva is comprised of several elements. Ninety-nine percent of saliva is fluid composed of water and mucus, providing a lubricative element. The remaining 1 of saliva is solid, containing salts, proteins, minerals such as calcium bicarbonate ions, and enzymes such as pytalin, antibodies, and other antimicrobial agents.97,99,107–109 Saliva is produced by numerous glands in the oropharynx107,109; the average healthy adult produces up to 1.5 liters of saliva a day. The parotid glands, the submandibular glands, and the sublingual glands produce 90 of saliva, with the other 10 produced in the oral pharynx. Parotid glands, located below and in front of each ear, produce a serous and watery saliva.111 Therefore, damage to the parotid gland will produce a thicker saliva. Submandibular glands, located in the lower jaw, secrete mostly serous saliva with some mucinous elements.111 Sublingual glands produce purely mucous saliva.109,112 The overall viscosity of saliva is dependent on the functioning of the various glands. There are four categories of the etiology of xerostomia: (1) reduced salivary secretions, (2) buccal erosion, (3) local or systemic dehydration, and (4) miscellaneous conditions. Reduced salivary secretion is commonly caused by both surgery and radiation to the head and neck regions, medication side effects, infections, hypothyroidism, autoimmune processes, and sarcoidosis. Oral dryness may result from oral diseases such as acute and chronic parotitis, or partial or complete salivary obstruction. Radiation to the head and neck can produce a 50 to 60 reduction of saliva within the first week of treatment because of inflammation.112 Chemotherapy may also cause dry mouth, particularly in advanced disease.112 Medications are notorious culprits of dry mouth, particularly several categories commonly used in palliative care.107,112 These medications include sedatives, tranquilizers, antihistamines, anti-Parkinsonian medications, antiseizure medications, skeletal muscle relaxants, cytoxic agents, tricyclic antidepressants, and anticholinergics.

Buccal erosion can occur in cancer and cancer treatment, particularly chemotherapy and radiation, as well as in conditions that affect the immune system. Sjögren’s syndrome, diabetes mellitus, HIV/AIDS, scleredema, sarcoidosis, lupus, Alzheimer’s disease, and graft versus host disease, all may excerbate dry mouth.107,112 Patients undergoing cancer therapy can have either tumor-induced salivary gland destruction or treatment-induced xerostomia from the destruction of salivary glands, debility and dehydration from surgery or radiation causes.104 The duration of radiation and/or greater radiation doses affects the persistence and degree of salivary reduction.104,113 Local or systemic dehydration-induced xerostomia results from a wide spectrum of conditons, from anorexia, vomiting, diarrhea, fever, drying oxygen therapies, mouth breathing, polyuria, diabetes, hemorrhage, and swallowing difficulties. Mental health issues including depression, coping reactions, anxiety, and pain can produce xerostomia.97,98,107,114 Dry mouth sensations are worse at night from their diurnal production, resulting in interrrupted sleep. Over longer periods of time, lack of sleep may cause anxiety, depression, and distress as part the stress response.101 There has been a long-standing myth that dry mouth occurs as part of the aging process. In fact, age is not the issue, but rather the potential for an increased number of comorbidities that may require medications.107,108 Lack of saliva fosters plaque and gum disease, which can be difficult to manage. Patients undergoing cancer treatment or immunosuppressive therapies may either be too immunocompromised or weak to undergo oral surgery or treatment procedures. Thus, patients may experience both the underlying discomforts of their terminal disease and experience the distress from secondary oral problems.

o]

Assessment Xerostomia may be accompanied by discomfort of both the oral mucosa and the tongue, such as burning, smarting, and soreness with or without the presence of ulcers. There may be difficulty with mastication, swallowing, and speech. Subsequently, there may be taste alterations, difficulty with dentures, and an increase in dental caries from the protection characteristics of saliva. Sleep, rest, and nutritional issues are common secondary concerns.107,108 Therefore, a thorough history should review these problem areas, along with the subjective distress of xerostomia (Table 11–5). A newer assessment tool is the Univeristy of Michigan Xerostomia. It is an 8-item interview in which the patient rates their xerostomia-related difficulties on a 1–10 scale.115 The areas include talking, chewing, swallowing, sleeping, eating, resting, and the frequency of sipping liquids for eating and during the rest of the day. Although it was developed for patients undergoing radiation, it is very applicable to all palliative care patients.112 Reviewing onset of oral dryness correlation with medication initiation may also be insightful in assessment.


Table 11–5 Assessment Questions for Xerostomia

Table 11–6 Dry Mouth Rating Scales

Do you frequently have a dry mouth? Does it bother you? Do you need to drink more fluids during the day and night? Do you have difficulty speaking? Do you have difficulty chewing? Do you have difficulty swallowing? Do you need extra fluids to swallow? Is your sleeping interrupted by a dry mouth? Have you experienced altered taste sensations? Do you often do you use tobacco? How often do you drink alcohol? How much caffeine do you consume? Are you taking any prescription medications, over the counter medications or preparations?

Oncology Nursing Society documentation for xerostomia 0 No dry mouth 1 Mild dryness, slightly thickened saliva; little change in taste 2 Moderate dryness, thick and sticky saliva, markedly altered taste 3 Complete dryness of mouth 4 Salivary necrosis

Sources: Sreebny and Valdini (1987), reference 98; Cooke et al. (1996), reference 109; Ship (2002), reference 107; Jensen et al., (2003), reference 108.

An intra-oral examination will reveal clear indications of dry mouth: pale and dry mucosal and buccal areas, the presence of a dry and fissured tongue, the absence of salivary pooling, and the presence of oral ulcerations, gingivitis, or candidiasis.98,109 Salivary glands should be noted for swelling, indicating obstruction, and dentition should be examined for caries. Extra-oral examination reveals cracked lips, often with angular cheilitis or candida at the corners of the mouth.107 The standard bedside tests for xerostomia are the cracker biscuit test and the tongue blade test. The cracker biscuit test involves giving a patient a dry cracker or biscuit. If the patient cannot eat the cracker without extra fluids, xerostomia is present.98 The tongue blade test is an extension of mouth inspection. After inspection is complete, the tongue blade is placed on the tongue. Since dry mouth makes a ropey, pasty saliva, the tongue blade will stick to the tongue of a patient with xerostomia.109 Another, more aggressive test is unstimulated or stimulated sialometric measurement of saliva. This test measures the amount of saliva collected by spitting into a container, swabbing the mouth with a cotton-tipped applicator, or salivating into a test container at a set time.98,109 However, for most palliative care patients, this may be a burdensome and unnecessary test. To document the extent of xerostomia, it may be helpful to use rating scales specifically designed for this purpose. Two scales, contained in Table 11–6, rate xerostomia in a fourpoint system.116,117

o] Management There is little to offer patients to prevent oral dryness or treat it once it has occurred. Much of xerostomia management focuses

257

Salivary gland changes: National Cancer Institute documentation of dry mouth 0 None 1 Slightly thickened 2 Thick, ropey, sticky saliva 3 Acute salivary necrosis 4 Disabling Sources: National Cancer Institute (2003), reference 117; Oncology Nursing Society (2002), reference 116.

Table 11–7 Stepwise Process for Managing Xerostomia Treat underlying infections Review and alter current medications Stimulate salivary flow Replace lost secretions with saliva substitutes Protect teeth Rehydrate Modify diet

on interventions to alleviate rather than interventions to eradicate or to prevent the symptom. The goal of management focuses on protecting patients from further complications, which may be more problematic.118 The following stepwise approach should guide management and treatment: Table 11–7, 1. Treat underlying infection or disease such as candidiasis. Nystatin swish-and-swallow or fluconazole 150 mg PO can improve xerostomia.97,104,107 2. Review and alter current medications as appropriate. It is important to first evaluate the necessity of specific xerostomia-inducing drugs.There are some 500 medications that list oral dryness as a side effect.107,112 Specifically, anticholinergics, antihistamines, phenothiazines, antidepressants, opioids, β-blockers, diuretics, anticonvulsants, sedatives, and tobacco all may cause oral dryness. Thus, patients with heart conditions, mental health issues, depression, anxiety, neurological disorders, and pain disorders may be at risk for dry mouth. If eliminating possible culprit medication is not

258


Table 11–8 Review of Interventions of Xerostomia Intervention

Role/Effect

Benefit

Side Effect

Nonpharmacological Peppermint water Vitamin C

Mucous saliva Chemical reduction

Citric acid/#weets

Mucous saliva

Inexpensive Inexpensive Reduces viscosity Inexpensive

Chewing gum, mints

Watery saliva

Acupuncture

Increase production

Inexpensive More volume Only dentate Noninvasive

Interacts with metoclopromide Can irritate mouth if sores present Can irritate like vitamin C. In sweets, can cause caries. No side effects if sugarless, otherwise can promote caries Expensive

Pharmacological Pilocarpine

Nonselective muscarinic

Increases saliva production

Bethanechol Methacholine Yohimbine

M-3 muscarinic Parasympathetics Blocks α-2 adrenoreceptors

Relieves side effect of TCA Increases salivation Increases saliva

Cevimeline

M-1 & M-3 muscarinic agonist

Increases saliva

Sweating, nausea, flushing, cramping Hypotension Drowsiness, confusion, atrial fibrillation Less effects than pilocarpine

Sources: Adapted from Amerongen (2003), reference 110; Ship (2002), reference 107.

possible, other possible strategies include decreasing the dosage to decrease dryness, or altering the schedule to assure that the peak effect of medication does not coincide with nighttime peak of decreased salivary production.97,98,107,109 3. Stimulate salivary flow. Salivary stimulation can occur with both nonpharmacological and pharmacological interventions. 4. Replace lost secretions with saliva substitutes. Saliva substitute are better tolerated than artificial saliva.101 Oral spray preparations are best tolerated.100 Saliva substitutes are based on aqueous solution and may contain carboxymethyl cellulose or mucin from animals. Attention must be paid to any philosophical, cultural or religious prohibitions concerning the animal ingredients of saliva substitutes.105

Nonpharmacological Interventions Nonpharmacological use of gustatory stimulation includes simple measures. Table 11–8 summarizes possible procedures. All of these interventions, except acupuncture, are inexpensive and are as efficacious as medications, without uncomfortable side effects. However, relief is not long lasting.109 • Peppermint water. Peppermint stimulates saliva and can be taken as needed. However, it should not be used with metoclopramide, as they have opposing actions.97,98,107

• Vitamin C. Use in lozenges or other forms as preferred. Disrupts salivary mucins to reduce viscosity of saliva.110 Although inexpensive, vitamin C may be irritating to the mouth, particularly if the patient has mouth sores.114 Also, there is a need to be careful, as continual vitamin C can erode dental enamel.101,111 • Citric acids. Present in malic acid or in sweets. Citric acids can act similarly to vitamin C in causing a burning sensation.114 • Chewing gum, mints. These are most preferred by patients, are inexpensive, and have no side effects. May create a buffer system to compensate for dietary acids.110,114 Effective as salivary stimulants due to the effect on chemoreceptors and mechanical receptors, chewing gum is more effective than mints. In particular, a low tack gum is preferable for patients with dentures.104 Preferably, gum is sugarless, to prevent caries and infections, because immunocompromised states promote cavities and infections. One study of dialysis patients revealed a preference for chewing gum. Attention must be paid to social acceptance of gum chewing, particularly in older populations.105 • Acupuncture. Effective with a variety of types of xerostomia, although mechanism not understood. Relief occurs as a single treatment with eight needles placed in three places: bilaterally in the ears and a single distal point in the radial aspect of the index finger.111 One study showed that 6 weeks of twice-weekly treatment increased salivation for up to 1 year.119 Another study used a 3-to-4 weekly

Dysphagia, Xerostomia, and Hiccups regimen, with monthly maintenance visits to relieve xerostomia.120 • Humidity. Modulation of oxygen therapy and room environment.121 Th is includes having oxygen modifications by changing humidified air and using vaporizors to add humidity to rooms, particularly since indoor heating and cooling systems are drying. • Diet modifications. Soft texture foods are better tolerated than rough foods. Soups, pudding, mashed potatoes, and shakes rather than foods with rough edges such as crackers or toast.122 Olive oil or another light oil to the gums and mucosa may help act as a lubricant.123 Patients may sip such foods in milk, tea, or water to assist in swallowing. In addition, instruct patients to take fluids with all meals and snacks. The use of gravies and juices with foods can add moisture to swallowing. Education regarding the avoidance of sugars, spicy foods, sometimes salt, and dry or piquant foods is important, although preferred tastes may vary from one patient to the next. For dry mouth without oral ulcerations, provide carbonated drinks such as ginger ale, as well as cider, apple juice, or lemonade. Fresh fruits, papaya juice, or pineapple juice may help some patients refresh their mouths14,101,124; however, citrus products may be too acidic and irritating for other patients.110

Pharmacological Interventions • Pilocarpine. Pilocarpine is a parasympathetic agent that increases exocrine gland secretion and stimulates residual functioning tissue in damaged salivary glands. Saliva production is greatest after a dose and response lasts for about 4 hours.110 Dose may be given at 5 mg TID or QID depending on how well patients tolerate the medication and its side effect.111 Response varies with severity of xerostomia. Side effects include mild to moderate sweating, visual disturbances, nausea, rhinitis, chills, flushing, sweating, dizziness, increased urinary frequency, abdominal cramping, and asthenia,109,110,114 but can be lessened if taken with milk.110 New studies have shown that pilocarpine given before and during radiotherapy can reduce xerostomia.114,124,125 However, due to the side effect profi le, Pilocarpine should not be used in patients with chronic obstructive pulmonary disease, asthma, bradycardia, renal or hepatic impairment, glaucomoa or bowel obstruction.101,109,111,114 • Bethanechol. Bethanechol relieves anticholinergic side effects of tricyclic antidepressants. Few studies have been done that focus specifically on xerostomia rather than the side effects of antidepressants.109,114

259

• Methacholine. Methacholine is a parasympathomimetic compound that increases salivation. Dose is 10 mg a day. One side effect is hypotension. It is short-acting.109,114 • Yohimbine. Yohimbine blocks α2-adrenoreceptors. Side effects include drowsiness, confusion, and atrial fibrillation, lasting up to 3 hours. Dose is 14 mg a day.114,124 • Cevimeline. Cevimeline is a muscarinic agonist that acts to increase saliva by inhibiting acetylcholinesterase. It works on salivary glands and lacrimal glands, promoting increased salivary flow and tears in the eyes. Used in a spray or mouthwash gargle, it lasts up to 6 hours.110,111,126 • Water. Water is simple and inexpensive. It is usually well tolerated and easily accessible. There is no research on whether optimal relief results from either warm or cold. Thus, temperature is a personal choice.109,114 • Artificial saliva. Artificial saliva contains carboxymethylcellulose or mucin; dose 2 mL every 3 to 4 hours.109,114 Some examples include Glandosane, Xero-Lube, Orex, and Saliment.107,110 It is important to consider patient preference of saliva stimulants over saliva substitutes.114 If saliva substitutes are used, those with a mucin base appear to be better tolerated than those derived from carboxymethylcellulose.127 However, both types of preparation bases are better tolerated as an oral spray than as a gel or rinse.126,127 • Protect teeth. Oral hygiene, such as frequent brushing with soft brushes, water jet, denture cleaning, fluoride rinses, mouthwash, and flossing, stimulate salivation. This can help prevent candidiasis, particularly since dentures can harbor infections.107 • Use of lip protectants such as balms, chapsticks, and other preparations prevents cracked lips, and use of saliva moistens lips. Care should be taken not to use products with alcohol, since these can be irritating.111,114,116,117 • Dentifrices. Several are manufactured for patients with dry mouth that contain antimicrobial enzymes to reduce oral infections and enhance mouth wetting. Examples are Biotene and Oral Balance.107,110,111 • Mouthwashes. Help rinse debris from mouth. Includes homemade mouthwashes made from saline, sodium bicarbonate, glycerin, and perhaps lemon.107,111 • Rehydration. Replenish oral hydration by sipping water, spraying water, and increasing humidity in the air.67 To assist in sleep, instituting these measures at night may help rest.

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o]

Nursing Interventions Little research has focused on dry mouth prevention. Both the fi nancial and physical burden of therapy may be of concern for patients. Many patients choose nonpharmacological therapy because it is inexpensive and has fewer side effects.119 Other patients may consider nonpharmacological interventions depending on how many other symptoms they are experiencing or how many other medications they are currently taking. Therefore, to create an appropriate intervention, the nurse must assess the distress from xerostomia and facilitate a suitable therapy within fi nancial constraints. Nursing intervention will vary from one patient to the next based on the degree of xerostomia. Strong evidence supporting the efficacy of one treatment over another has not been demonstrated. The result is a lack of standardized oral care procedures, and protocols variation from one institution to another.111 The nurse may help a family systematically go through a variety of therapies from nonpharmacological to pharmacological to achieve relief. If nonpharmacological interventions are unsuccessful, the pharmacological medications can be tried. However, medication interactions and side effects should be reviewed in the context of the patient’s overall condition. Education about both the importance and comfort of good oral care is essential. As a patient declines, teaching the family how to provide mouth care offers a tangible and important role in the comfort of the patient.

o]o]o] HICCUPS

her to rest... A plan is made that if the hiccups persist, she will be placed on chlorpromazine 25 mg at night. Since this medication is very sedating, other measures will be considered for daytime to allow her to be alert as possible for her children. o]

o]

Definition Hiccup, or singultus, is defined as sudden, involuntary contractions of one or both sides of the diaphragm and intercostal muscles, terminated by an abrupt closure of the glottis, producing a characteristic sound of “hic.”128–133 Hiccup frequency is commonly around 4 to 60 per minute.134 Prolonged hiccups result in fatigue and exhaustion from both respiratory insufficiency and sleep interferences.135 Anxiety, depression, and frustration may develop if eating and/or sleeping are routinely interrupted. Although seemingly insignificant, hiccups affect quality of life.128,130,131,135

o]

Prevalence and Impact Hiccups, in the palliative care population, have not been well studied, resulting in a paucity of references devoted to the subject. Articles within the last 5 years pertain to case reports of a particular patient, but no research has been done about systematic studies on patient populations with specific diseases. Because of the perceived insignificance of hiccups, the incidence and prevalence are not well known. Estimates of prevalence of hiccups in cancer patients is about 10 to 20.136 Children appear more prone to hiccups than adults.136

9= CASE STUDY CJ, A Young Woman with Ovarian Cancer and Hiccups

o]

CJ is a 36-year-old woman with ovarian cancer. She has been undergoing treatment for 5 years. She has subseqeuntly anorexia, abdominal distention, and dyspnea. She is referred to hospice. Within the week, she is unable to sleep due to hiccups. She is assessed for constipation though this is ruled out as a source of the hiccups. She is assessed for ascites, which is a possible cause of the hiccups The nurse instructs her sleep on a wedge pillow. Various pharmacological regimens are discussed. Because she has small children and doesn’t want to be sedated, a step wise approach to symptom relief is initiated. She is prescribed metaclopramide to decrease abdominal distention and lactulose to relieve constiption. Her shortness of breath and feelings of fullness are both diminished but she still has hiccups. She is then started on Baclofen 10 mg TID which results in the subsiding of the hiccups and allows

The precise pathophysiology and the physiological function of hiccups is unknown. What is known is that hiccups arise from a synchronous clonic spasm or spasmodic contraction of the diaphragm and the intercostal muscles, which results in sudden inspiration and prompt closure of the glottis, causing the hiccups sounds. Normally, the glottis pertains to the vocal cords and diaphragm, and the intercostal muscles pertain to respirations.135 Nonetheless, hiccups are considered a primitive function, such as yawning or vomiting, that developed as an evolutionary process that now serves no discrete purpose.128,131,137 The anatomical cause of hiccups is thought to be bimodal, with association either with the phrenic or vagus nerve,135,138 or central nervous involvement, which causes misfiring.131 It is hypothesized that a hiccup reflex arc is located in the phrenic nerves, the vagal nerves, and T6–T12

Pathophysiology

Dysphagia, Xerostomia, and Hiccups sympathetic fibers, as well as a possible hiccup center in either the respiratory center, the brain stem, or the cervical cord between C3 and C5.139 However, there does not appear to be a discrete hiccup center, such as the chemoreceptor trigger zone for nausea.134,137,140 Evidence suggests an inverse relationship between partial pressure of carbon dioxide (pCO2) and hiccups; that is, an increased pCO2 decreases the frequency of hiccups and a decreased pCO2 increases frequency of hiccups.128 Interestingly, hiccups have a minimal effect on respiration. Hiccup strength or amplitude varies from patient to patient, as well as among separate episodes in an individual.132 It is this characteristic that causes the distress, as continous strong hiccups are exhausting due to the energy used to hiccup. There are three categories of hiccups: benign, persistent, and intractable hiccups. Benign, self-limiting hiccups, occur frequently. Such a bout of hiccups can last from several minutes to 2 days and is primarily associated with gastric distention.140 Other causes are sudden changes in temperature, alcohol ingestion, excess smoking, and psychogenic alternations.128,130– 132 Persistent, or chronic, hiccups continue for more than 48 hours but less than 1 month. Third and last are intractable hiccups, which persist longer than 1 month.128,130–132 For palliative care, the duration may not be as important as the amplitude or strength of the hiccup. For instance, a patient with ALS may have more distress than a cardiac patient, as they are already weak and breathing is compromised.132 Intractable hiccups have more than 100 different causes, varying from simple metabolic disturbances to complex structural lesions of the central nervous system or infections.128,130,132 Particular causes can be consolidated into four categories: structural, metabolic, inflammatory, and infectious disorders.128 Structural conditions specifically affect or irritate the peripheral branches of the phrenic and vagus nerves, such as in abdominal or mediastinal tumors, hepatomegaly, ascites, or gastric distention, and central nervous disorders. Persistant hiccups can indicate serious underlying disorders, such as thoracic aneurysm, brainstem tumors, metabolic and drug-related disorders, infectious diseases, and psychogenic disorders.132,133,138 Common causes in terminal illness include neurological disorders such as stroke, brain tumors, and sepsis and metabolic imbalances; phrenic nerve irritations such as tumor compression or metastases; pericarditis, pneumonia, or pleuritis; and vagal nerve irritations such as esophagitis, gastric distention, gastritis, pancreatitis, hepatitis, and myocardial infarction.130,131 Medications including steroids, chemotherapy, dopamine antagonists, megestrol, methyldopa, nicotine, opioids, and muscle relaxants may also cause hiccups.136

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the etiology or delineating treatment. Indeed, a recent retrospective study revealed that laboratory studies neither assisted in treatment nor helped determine what treatment would be effective.141 Nonetheless, assessment should include a subjective review of how much distress the hiccups cause the patient. For example, in a patient with an abdominal tumor, hiccups can cause excruciating pain, whereas in the obtunded patient in renal failure, hiccups may cause little distress at all. In reviewing the distress of the hiccup, it is important to evaluate subsequent conditions. Patients may experience weight loss due to anorexia, fatigue, and inability to eat; shortness of breath from inability to take deep breaths; insomnia from hiccuping all night; heartburn from acid reflux; and depression resulting from all of the above, as well as the worry that hiccups are untreatable.135 Subjective assessment includes the history and duration of the current episode of hiccups, previous episodes, and interference with rest, eating, or daily routines. Inquiry into possible triggers may be helpful, including patterns during the day, and activities preceding the hiccups such as eating, drinking, or positioning. A review of recent trauma, surgery, procedures, and acute illness, as well as a medication history, is important to help focus on potential causes.128,137 There are case reports on oral and epidural steroid and bupivicaine induced hiccups.142,143 Any wounds or infections should be examined, as well as the respiratory system.135 The presence of hiccups themselves is quite apparent. Further physical exam may not reveal much related to the hiccups themselves but, rather assists in ruling out other conditions. Oral examination may reveal signs of swelling or obstruction. Observation of the patient’s general appearance includes inspection for signs of a toxic or septic process. More specifically, it includes evaluating for tenderness of the temporal artery, foreign bodies in the ear, infection of the throat, goiter in the neck, pneumonia or pericarditis of the chest, abdominal distention or ascites, and signs of stroke or delirium—all diagnoses that may have hiccups as part of the constellation of signs and symptoms.128 In very rare circumstances, specific testing may be warranted to eliminate other causes. Chest x-ray may rule out pulmonary or mediastinal processes, as well as phrenic/vagal irritation from peritumor edema in the abdominal area.136 In addition, blood work including a complete blood count with differential electrolytes may rule out infection, as well as electrolyte imbalances and renal failure.128,131,132 Sometimes a CT scan of the abdomen or head may be done to rule out abnormalities or a cerebral bleed.

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Management

Assessment Extensive work-up for hiccups in palliative care is impractical, uncomfortable, and reveals little to assist in determining

The lack of research to increase understanding on the nature of hiccups has resulted in lack of consensus around treatment and anecdotal therapy. Consequentially, treatment is based

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Table 11–9 Nonpharmacological Interventions for Hiccups Respiratory measures Breath holding Rebreathing in a paper bag Diaphragm compression Ice application in mouth Induction of sneeze or cough with spices or inhalants Nasal and pharyngeal stimulation Nose pressure Stimulant inhalation Tongue traction Drinking from far side of glass Swallowing sugar Eating soft bread Soft touch to palate with cotton-tipped applicator Lemon wedge with bitters Miscellaneous vagal stimulation Ocular compression Digital rectal massage Carotid massage Psychiatric treatments Behavioral techniques Distraction Gastric distention relief Fasting Nasogastric tube to relieve abdominal distention Lavage Induction of vomiting Phrenic nerve disruption Anesthetic block Miscellaneous treatments Bilateral radial artery compression Peppermint water to relax lower esophagus Acupuncture Sources: Lewis (1985), reference 128; Launois (1993), reference 137; Rousseau (2003), reference 132; Williams (2001), reference 131; Smith (2003), reference 130; and Kolodzik & Eilers (1991), reference 135.

on the bias of previous success rather than a systematic, evidence-based approach. Similar to treatment of dysphagia or xerostomia, treatment for hiccups should be focused on the underlying disease. If the etiology questionably includes simple causes such as gastric distention or temperature changes, “empiric” treatment should be initiated. Both nonpharmacological and pharmacological interventions may be used.128,130–132 Therapies include physical maneuvers, medications, and various other procedures to interfere with the hiccup arc.139 Otherwise, treatment for more complex episodes of hiccups without clear etiology will focus on various pharmacological interventions. Nonpharmacological Treatment Nonpharmacological treatments can be divided into seven categories and are outlined in Table 11–9. The first category is

simple respiratory maneuvers. These include breath holding, rebreathing in a bag, compression of the diaphragm, ice application in the mouth, and induction of sneeze or cough.128,130– 132 The second category is nasal and pharyngeal stimulation. These techniques use pressure on the nose, inhalation of a stimulant, traction of the tongue, drinking from the far side of a glass, swallowing sugar, eating a lemon wedge with bitters, eating soft bread, or soft touch to the palate with a cottontipped applicator.131,132,134 The third category is miscellaneous vagal stimulation, including ocular compression, digital rectal massage, and carotid massage. The fourth category is psychiatric treatments, mainly behavioral therapy. The fift h category is relief of gastric distention, comprising of repositioning, fasting, a nasogastric tube to decrease distention, lavage, and induction of vomiting.128,131 The sixth category is phrenic nerve disruption, such as an anesthetic injection or traditional acupuncture.128,139 The seventh and final category is miscellaneous benign remedies, such as bilateral compression of radial arteries, peppermint water to relax the lower esophagus, use of distraction, or acupressure.128,130–132 Pharmacological Treatment Initial therapy should attempt to decrease gastric distention, the common cause in 95 of cases. Subsequent measures include hastening gastric emptying, and relaxing the diaphragm with simethicone and metoclopramide.128,129,131,132,144 If ineffective, second-line therapy should focus on suppression of the hiccup reflex. Common pharmacological interventions, listed in Table 11–10, include the use of various classes of medications: muscle relaxants such as baclofen, midazolam, and chlordiazepoxide; anticonvulsants such as gabapentin, carbamazepine, and valproate144–146; corticosteroids such as dexamethasone and prednisone; dopamine antagonists such as haloperidol, droperidol, and chlorpromazine149; calcium channel blockers/ antiarrhythmics such as nifedipine, nimodipine, nefopam, phenytoin, lidocaine, quinidine139,144,147; SSRI antidepressants, specifically sertraline; and various other medications such as ketamine, THC, and methylphenidate.136,144,148–150 Third-line therapy is the use of other drugs to disrupt diaphragmatic irritation or other possible causes of hiccups, which may include anesthesia and phrenic and cervical blocks.139,151–153

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Nursing Interventions Although hiccups appear to be a simple reflex, their specific mechanism of action is unclear due to myriad etiologies. Many patients are frustrated because their discomfort and disruption were not taken seriously. The nurse can help discuss with the patient their concerns about treatment and their desire for comfort. Nursing interventions should focus on information regarding the broad range of strategies to eliminate the hiccups. Thus, the nursing role is one of advocate to promote comfort, empathetic listener, and educator. The extent of aggressive treatment will depend on the degree of distress of the hiccups and the interference with


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Table 11–10 Suggested Pharmacological Treatment for Hiccups Agent

Site of Effect

Side Effect

Agents to decrease gastric distention Simethicone 15–30 mL po q 4 h Metochopromide 10–20 mg po/IV q 4–6 h (cannot use with peppermint water)

Gas Blocks dopamine

Promotes emptying Promotes gastric emptying

Sedation, nausea Transient drowsiness

Acts at synaptic level Reduces muscles spasm

Drowsiness, HA, flu-like symptoms Drowsiness

Acts on cortex area

Dopamine agonists Haloperidol 1–5 mg PO/IV/SQ q 4–12 h Chlorpromazine 5–50 mg PO/IM/IV q 4–8 h

Drowsiness Sedation, extrapyramidal effects

Reduces muscle spasm Blocks dopamine and Alpha adrenergic receptors

Calcium channel blockers Lidocaine 1 mg/kg w/ infusion fo 2 mg/min Nifedipine 10–80 mg PO QD

Cardiac effects Hypotension

Blocks sodium channels

Other medications Ketamine 0.4 mg/kg

Respiratory and cardiac suppression

Amitriptyline 25–90 mg po QD

Dizziness, urinary retention

Acts on cortex and limbic system Inhibits serotonin and norepinephrine uptake

Muscle relaxants Baclofen 5–10 mg PO q 6–14 h up to 15–25 mg/d Midazalem 5–10 mg q 4 h Anticonvulsants Gabapentin 300–600 mg PO TID Carbamazepine 200 mg PO QID-TID Valproic acid 15 mg/kg PO divided in one or three doses then may increase by 250 mg/wk until hiccups stop Diphenylhydantoin 200 mg IV × 1, then 100 mg PO QID Corticosteroids Dexamethasone 40 mg PO QD

Source: Sarhill and Mahmous (2007), reference 153.

quality of life—in particular, the extent of impact that hiccups have on the daily routine, specifically on sleep and nutrition. Information should include nonpharmacological maneuvers such as respiratory maneuvers, nasal and pharyngeal stimulation, distraction, and peppermint waters. If these measures fail to eradicate the hiccups, the nurse can discuss the range of pharamcologicaloptions, offer reassurance to continue various efforts because patients respond differently. Antacids may decrease gas, antiemetics may affect dopamine levels, and muscle relaxants may affect both gamma-aminobutyric acid channels and skeletal muscle.130,132,136 Separately, they may be ineffective, but together they target several regions that trigger hiccups. If all of these medications fail to induce hiccup reduction or cessation, the nurse should suggest a referral to a palliative care service, a pain service, or an anesthesia service to explore further treatment options. These services can consider possible invasive procedures such a nerve block, or infusion. However, as always, discussion with the patient should include prognosis and the benefit and burden of any procedure. If hiccups become extremely burdensome and all therapies have failed,

sedation may be a consideration. Again, the nurse may act as an advocate to provide the necessary information about the implications of sedation. For further discussion of palliative sedation, the reader is referred to Chapter 26.

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Summary Dysphagia, xerostomia, and hiccups are common problems that have not garnered much interest in research. Many clinicians consider them minor symptoms; therefore, they appear to be underreported and underestimated.55 Nurses at the bedside, whether in a facility or at home, may be the first to identify their presence and the negative impact on quality of life. The mere act of listening to a patient’s distress offers affirmation of the existence of the symptoms and validation that the symptoms will be taken seriously. Given the lack of hard evidence to manage these symptoms, the nurse must be creative in the approach. Working with a team can offer relief to patients and their families.

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o] Appendix 11–1

Pureed Cookbooks Eat Well Stay Nourished: A recipe and resources guide for coping with eating challenges. Compiled and edited by Nancy E. Leupold. Published by SPOHNC Support for People With Oral and Head and Neck Cancer, 2000. Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and Nutritious Recipes for People Who Have Difficulty Swallowing. Donna Weihoffen, JoAnne Robbins, Paula Sullivan. John Wiley & Sons, Inc., 2002. The Dysphagia Cookbook. Elayne Achilles. Cumberland House Publishing, 2004 I-Can’t-Chew Cookbook. J. Randy Wilson and Mark A. Piper. Hunter House, Inc Publishers, 2003. Puree Gourmet. J William Richman. American Institutional Products, 1994.

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96. Gross RD, Mahlmann J, Grayhack JP. Physiologic effects of open and closed tracheostomy tubes on the pharyngeal swallow. Ann Otol Rhinol Laryngol 2003;112(2):143–152. 97. Speilman A, Ben Aryad H, Gutman D, Szargel R, Duetsch E. Xerostomia—diagnosis and treatment. Oral Med 1981; 51:144–147. 98. Sreebny L, Valdini A. Xerostomia. Arch Intern Med 1987;147: 1333–1337. 99. Roh JL, Kim S, Kim AY. The effect of acute xerostomia on vocal function. Arch Otolaryngol Head Neck Surg 1006;132:543–546. 100. Mouly S, Orler JB, Tillet Y, Coudert AC, Oberli F, Presahw P, Bergmann F. Efficacy of a new oral psychotropic druginduced xerostomia—a randomized controlled trial. J Clin Psychopharmocol 2007;27(5):437–443. 101. Hewett, J. Mouth Care. In Cooper J, ed. Stepping into Palliative Care: Care and Practice (2nd ed). Seattle: Radcliffe Press, 2006:89–102. 102. Ng K, von Gunton, CF. Symptoms and attitudes of 100 consecutive patients admitted to an acute hospice/palliative care unit. J Pain Symptom Manage 1998;16:307–316. 103. Mercandante S, Calderone L, Villari P, Serretta R, Sapio M, Casuccio A, Fulfaro F. The use of pilocarpine in opioid-induced xerostomia. Palliat Med 2000;14:529–531. 104. Davies A. The comparison of artificial saliva and chewing gum in the management of xerostomia in patients with advanced cancer. Palliat Med 2000;14:197–203. 105. Bots C, Brand H, Veerman E, Korevaar J, Valentijn-Benz M, Bezemer P, Valentijn R, Vos P, Bijlsma J, ter Wee P, Amerongen B, Amerongen A. Chewing gum and a saliva substitute alleviate thrist and xerostomia in patients on haemodialysis. Nephrol Dial Transplant 2005;20:578–584. 106. Cohen L, Moss A, Weisbord S, Germain M. Renal palliative care. J Palliat Med 2006;9(4):977–992. 107. Ship JA, Pillemer, SR, Baum BJ. Xerostomia and the geriatric patient. Geriatr Soc 2002; 50:535–543. 108. Jensen SB, Pedersen AM, Reibel, Nauntofte B. Xerostomia and hypofunction of the salivary glands in cancer therapy. Support Care Cancer 2003;11:207–225. 109. Cooke C, Admedzel S, Mayberry J. Xerostomia—a review. Palliat Med 1996;10:284–292. 110. Amerongen AV, Veerman EC. Current therapies for xerostomia and salivary gland hypofunction associated with cancer therapies. Support Care Cancer 2003;11:226–231. 111. Bruce S. Radiation-induced xerostomia: How dry is your patient. Clin J Oncol Nurs 2004;8:61–67. 112. Porter S, Scully C, Hegarty A. An update of the etiology and management of xerostomia. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2004;97:28–46. 113. Guchelaar H, Vermes A, Meerwaldt J. Radiation induced xerostomia: pathophysiology, clinical course, and supportive treatment. Support Care Cancer 1997;5:281–288. 114. Davies A. The management of xerostomia: A review. Eur J Cancer Care 1997;6:209–214. 115. Pacholke H, Amdure R, Morris C, Li J, Dempsey J, Hinerman R, Mendenhall W. Late xerostomia after intensity-modulated radiation therapy versus conventional radiotherapy. Am J Clin Oncol 2005;28:351–358. 116. Oncology Nursing Society. Radiation Therapy Patient Care Record. Pittsburgh: Oncology Nursing Society Press, 2002. 117. National Cancer Institute. Common terminology criteria for adverse events v3.0. Published December 12, 2003. Available


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12o]

Denice Caraccia Economou

Bowel Management: Constipation, Diarrhea, Obstruction, and Ascites I am either constipated or have diarrhea. This bowel stuff is controlling my life—I don’t know what to do. I am miserable—K.B., 60 year old with gastric cancer

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Key Points Multiple factors contribute to constipation. Proactive management is essential for successful outcomes. Treating diarrhea requires a thorough assessment and therapy directed at the specific cause. Palliative care should allow for a thoughtful and realistic approach to management of symptoms within the goals of care.

o]o]o] CONSTIPATION Constipation affects 2 to 10 of the general population, but the incidence may be as high as 20 to 50 in older or ill persons.1 Constipation is a major problem in cancer patients, with as many as 70 to 100 of cancer patients having this distressing symptom.2 The use of opioids for pain is a contributory factor to constipation, and this side effect is the principal reason for their discontinuation.3–5 Constipation is common and yet undertreated by both physicians and nurses.

Definitions Constipation is subjective to many patients, making assessment much more difficult. Constipation is defined as “a decrease in the frequency of passage of formed stools and characterized by stools that are hard and small and difficult to expel.” Understanding the normal functioning of the bowel can provide insight into the contributing factors leading to constipation, diarrhea, and obstruction. Associated symptoms of constipation vary, but may include excessive straining, a feeling of fullness or pressure in the rectum, the sensation of incomplete emptying, abdominal distention, and cramps.5,6 The subjective experience of constipation may vary for different individuals, underscoring the importance of individualized patient assessment and management.

Prevalence and Impact It is estimated that 50 of hospice patients are constipated; this may be an underestimate, as many of those patients are on opioids and stool softeners/laxatives at baseline.1,6 Inpatient hospitalizaion and ambulatory clinic visits for constipation and related side effects cost the healthcare system $235 million annually.7,10 Constipation is considered a symptom of 269

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Bowel Dysfunction (BD) and Opioid Bowel Dysfunction (OBD) relating to opioid-induced constipation. The impact of constipation on quality of life is substantial. Constipation causes social, psychological, and physical distress for patients, which additionally impacts the caregiver and health care staff. Failure to anticipate and manage constipation in a proactive way significantly affects the difficulty a patient will experience in attempting to relieve this problem.

Pathophysiology Normal bowel function includes three areas of control: small intestinal motility, colon motility, and defecation. This includes the processes of secretion, absorption, transport, and storage.6,8 Small-intestinal activity is primarily the mixing of contents by bursts of propagated motor activity that are associated with increased gastric, pancreatic, and biliary secretion. This motor activity occurs every 90 to 120 minutes, but is altered when food is ingested. Contents are mixed to allow for digestion and absorption of nutrients. When the stomach has emptied, the small intestine returns to regular propagated motor activity.4 The colon propels contents forward through peristaltic movements. The colon movement is much slower than that of the small intestine. Contents may remain in the colon for up to 2 to 3 days, whereas small-intestinal transit is 2–4 hours. Motor activity in the large intestine occurs approximately six times per day, usually grouped in two peak bursts. The first is triggered by awakening and breakfast, and a smaller burst is triggered by the afternoon meal. Contractions are stimulated by ingestion of food, psychogenic factors, and somatic activity. Sykes6 found that 50 of the constipated patients in a hospice setting had a transit time between 4 and 12 days. The physiology of defecation involves coordinated interaction between the involuntary internal anal sphincter and the voluntary external anal sphincter. The residual intestinal contents distend the rectum and initiate expulsion. The longitudinal muscle of the rectum contracts, and with the voluntary external anal sphincter relaxed, defecation can occur. Additional coordinated muscle activity also occurs and includes contraction of the diaphragm against a closed glottis, tensing of the abdominal wall, and relaxation of the pelvic floor. The enteric nervous system plays an important role in the movement of bowel contents through the gastrointestinal (GI) tract as well. Smooth muscles in the GI tract have spontaneous electrical, rhythmic activity, resembling pacemakers in the stomach and small intestine, that communicate with the remainder of the bowel. There are both submucosal and myenteric plexuses of nerves. These nerves are connected to the central nervous system through sympathetic ganglia, splanchnic nerves, and parasympathetic fibers in the vagus nerve and the presacral plexus. Opioid medications affect the myenteric plexus, which coordinates peristalsis. Therefore, peristalsis is decreased and stool transit time is decreased, leading to harder, dryer, and less frequent stools, or constipation.4,7

Important factors that promote normal functioning of the bowel include the following: 1. Fluid intake. Nine liters of fluid (which includes 7 liters secreted from the salivary glands, stomach, pancreas, small bowel, and biliary system, and the average oral intake of 2 liters) are reduced to 1.5 liters by the time they reach the colon. At this point, water and electrolytes continue to be absorbed, and the end volume for waste is 150 mL.8,9 Therefore, decreased fluid intake can make a significant difference in the development of constipation.1 2. Adequate dietary fiber. The presence of food in the stomach initiates the muscle contractions and secretions from the biliary, gastric, and pancreatic systems that lead to movement of the bowels.7 The amount of dietary fiber consumed is related to stool size and consistency.11 3. Physical activity. Colonic propulsion is related to intraluminal pressures in the colon. Lack of physical activity and reduced intraluminal pressures can significantly reduce propulsive activity.6 4. Adequate time or privacy to defecate. Changes in normal bowel routines, such as morning coffee or reading the paper, can decrease peristalsis and lead to constipation. Emotional disturbances are also known to affect gut motility.10,11

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Primary, Secondary, and Iatrogenic Constipation Causes of constipation in cancer patients are divided into three different categories.4,6 1. Primary constipation is caused by reduced fluid and fiber intake, decreased activity, lack of privacy and advanced age. 2. Secondary constipation is related to structural, metabolic or neurologic disorders. These changes may include tumor, partial intestinal obstruction, metabolic effects of hypercalcemia, hypothyroidism, hypokalemia, hyperglycemia, as well as spinal cord compression at the level of the cauda equina or sacral plexus, sacral nerve infiltration and cerebral tumors. 3. Iatrogenically induced constipation is related to pharmacological interventions. Opioids are the primary medications associated with constipation. In addition, Vinca alkaloid chemotherapies (vincristine, oxaliplatin, thalidomide), anticholinergic medications (belladonna, antihistamines), antiemetic therapy (5-HT3 antagonists), tricyclic antidepressants (nortriptyline, amitriptyline), neuroleptics (haloperidol and chlorpromazine), antispasmodics, anticonvulsants (phenytoin and gabapentin), muscle relaxants, aluminum antacids, iron, diuretics (furosemide), and antiparkinsonian agents cause constipation.4–6

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Constipation Related to Cancer and Its Treatment Multiple factors associated with cancer and its treatment cause constipation. When it primarily involves the GI system or is anatomically associated with the bowel, cancer itself causes constipation. Pelvic cancers, including ovarian, cervical, and uterine cancers, are highly associated with constipation and mechanical obstruction.11 Malignant ascites, spinal cord compression, and paraneoplastic autonomic neuropathy also cause constipation. Cancer-related causes include surgical interruption of the GI tract, decreased activity, reduced intake of both fluids and food, changes in personal routines associated with bowel movements, bed rest, confusion, and depression.4–7,12

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Opioid-Related Constipation Opioids affect bowel function primarily by inhibiting propulsive peristalsis through the small bowel and colon.4,7,13 Chronic opioid use in non-cancer patients causes constipation in 40 of the patients; in advanced cancer patients, 50 to 90 will develop bowel dysfunction.13,14 Opioids bind with the receptors on the smooth muscles of the bowel, affecting the contraction of the circular and longitudinal muscle fibers that cause peristalsis or the movement of contents through the bowel.13,14 Colonic transit time is lengthened, contributing to increased fluid and electrolyte absorption and dryer, harder stools.1,4,5 Peristaltic changes occur 5 to 25 minutes after administration of the opioid and are dose related. Patients do not develop tolerance to the constipation side effects even with long-term use of opioids.15 There is evidence associated with transdermal fentanyl versus morphine and methadone compared to morphine or hydromorphone use that constipation severity may differ among opioids.16,17 The use of laxatives and stool softeners with opioids represents a rational, proactive approach to opioid-induced constipation.

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Assessment of Constipation History The measurement of constipation requires more than assessing the frequency of stools alone. Managing constipation requires a thorough history and physical examination. The use of a quantifying tool can be helpful in understanding what the patient is experiencing and how different that may be from the usual or baseline bowel habit. A tool developed in 1989, the Constipation Assessment Scale (CAS), has been tested for validity and reliability and found to have a significant ability to measure constipation as well as its severity between moderate and severe constipation. It is a simple questionnaire that requires 2 minutes to complete (Figure 12–1).

Direction: Circle the appropriate number to indicate whether, during the past three days, you have had NO PROBLEM, SOME PROBLEM or a SEVERE PROBLEM with each of the items listed.

Item

No Some Severe Problem Problem Problem

1. Abdominal distension or bloating

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2. Change in amount of gas passed rectally

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3. Less frequent bowel movements

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4.Oozing liquid stool

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5. Rectal fullness or pressure

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6. Rectal pian with bowel movement

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7. Smaller stool size

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8. Urge but inability to pass stool

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Patient’s Name

Date

Figure 12–1. Constipation Assessment Scale. Source: McMillan et al. (1989), reference 18. Reproduced with permission

The CAS includes eight symptoms associated with constipation: (1) abdominal distention or bloating, (2) change in amount of gas passed rectally, (3) less frequent bowel movements, (4) oozing liquid stool, (5) rectal fullness or pressure, (6) rectal pain with bowel movement, (7) small volume of stool, and (8) inability to pass stool.18 These symptoms are rated as 0, not experienced; 1, some problem; or 2, severe problem. A score between 0 and 16 is calculated and can be used as an objective measurement of subjective symptoms for ongoing management. The CAS gives a good sense of bowel function6,18 and also outlines questions to use in taking a constipation history. It is important to start by asking patients when they moved their bowels last and to follow up by asking what their normal movement pattern is. Remember, what is considered constipated for one person is not for someone else. What are the characteristics of their stools and did they note any blood or mucus? Were their bowels physically difficult to move? This is especially important if they have cancer in or near the intestines or rectal area that may contribute to physical obstruction. Ovarian cancer patients usually complain of feeling severely bloated. They may say things like “If you stick a pin

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in me, I know I will pop!” Evaluating the abdomen or asking patients if they feel bloated or pressure in the abdomen is important. Does the patient feel pain when moving the bowels? Is the patient oozing liquid stool? Does the patient feel that the volume of stool passed is small? Many patients may experience unexplainable nausea.4,5

Medication- or Disease-Related History The patient’s medical status and anticipated disease process are important in providing insight into areas where early intervention could prevent severe constipation or even obstruction. Constipation may be anticipated with primary and secondary bowel cancer, as well as with pelvic tumors, peritoneal mesothelioma or spinal cord compression, previous bowel surgery, or a history of Vinca alkaloid chemotherapy. Changes in dietary habits related to the above medications or the addition of new medications may contribute to constipation.1,8,12 Anticholinergic medications, antihistamines, tricyclic antidepressants, aluminum antacids, and diuretics can cause constipation. Hypercalcemia, hyperglycemia and hypokalemia contribute to constipation by slowing down motility. Several factors aggravate and contribute to the experience of constipation including confusion, immobility and dehydration.7 Ask patients if there are things they do to aid in defecation. Sometimes physical actions the patient may use can help causes related to rectocele, or rectal ulcer.6 Table 12–1 outlines causes of constipation in cancer and other palliative care patients.

Physical Examination Begin the physical examination in the mouth, to ensure that the patient is able to chew foods and that there are no lesions or tumors in the mouth that could interfere with eating. Does the patient wear dentures? Patients who wear dentures and have lost a great deal of weight may have dentures that do not fit properly, which would make eating and drinking difficult. Patients may choose to eat only what they are able to chew as a result of their dentures or other dental problems. Therefore, they may not be eating enough fiber and, thus, contributing to primary constipation. Abdominal Examination. Inspect the abdomen initially for bloating, distention, or bulges. Distention may be associated with obesity, fluid, tumor, or gas. Remember, the patient should have emptied the bladder. Auscultation is important to evaluate the presence or absence of bowel sounds. If no bowel sounds are heard initially, listen continuously for a minimum of 5 minutes. The absence of bowel sounds may indicate a paralytic ileus. If the bowel sounds are hyperactive, it could indicate diarrhea. Percussion of the bowel may result in tympany, which is related to gas in the bowel. A dull sound is heard over intestinal fluid and feces. Palpation of the abdomen should start lightly; look for muscular resistance and abdominal tenderness. This is usually associated with chronic

constipation. If rebound tenderness is detected with coughing or light palpation, peritoneal inflammation should be considered. Deep palpation may reveal a “sausage-like” mass of stool in the left colon. Feeling stool in the colon indicates constipation. Although Sykes6 points out that the distinction between tumor and stool is hard to make, recognizing the underlying anatomy is helpful in distinguishing the stool along the line of the descending colon or more proximal colon, including the cecum. A digital examination of the rectum may reveal stool or possible tumor or rectocele. If the patient is experiencing incontinence of liquid stool, obstruction must be considered. Examining for hemorrhoids, ulcerations, or rectal fissures is important, especially in the neutropenic patient. Patients with neutropenia can complain of rectal pain well before a rectal infection is obvious. Evaluating the patient for infection, ulceration, or rectal fissures is very important. Additionally, determine whether the patient has had previous intestinal surgery, alternating diarrhea and constipation, complaints of abdominal colic pain or nausea, and vomiting. Examining the stool for shape and consistency can also be useful. Stools that are hard and pellet-like suggest slow transit time, whereas stools that are ribbon-like suggest hemorrhoids. Blood or mucus in the stool suggests tumor, hemorrhoids, or possibly a preexisting colitis.6 Elderly patients may experience urinary incontinence related to fecal impaction.1,5,13 Abdominal pain may also be related to constipation. Patients will complain of colic pain related to the effort of colonic muscle to move hard stool. The history may be complicated by known abdominal tumors. Patients in pain should still be treated with opioids as needed.

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Management of Constipation Preventing constipation whenever possible is the most important management strategy. Constipation can be extremely distressing to many patients and severely affects quality of life.7,8 The complicating factor remains the individuality of a patient’s response to constipation therapy. Therefore, there is no set rule for the most effective way to manage constipation. Patients with primary bowel cancers, pelvic tumors such as ovarian or uterine cancers, or metastatic tumors that press on colon structures will experience a difficult-to-manage constipation. It is not unusual for those patients to be admitted to the hospital to manage constipation and to rule out obstruction. To minimize those admissions whenever possible, as Dame Cicely Saunders, the founder of hospice recommends, “Do not forget the bowels.” Nurses are at the bedside most often and are the ones who see the cumulated number and types of medication a patient may be taking. Understanding which medications and disease processes put a patient at high risk for constipation is essential for good bowel management. Assessing the patient’s constipation as discussed earlier is the best place to start. The patient’s problem list should reflect the risk for constipation and the need for aggressive constipation management. For example, diabetic patients who are

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Table 12–1 Causes of Constipation in Cancer/Palliative Care Patients Cancer-related Directly related to tumor site. Primary bowel cancers, secondary bowel cancers, pelvic cancers. Hypercalcemia. Surgical interruption of bowel integrity. Etiology Intestinal obstruction related to tumor in the bowel wall or external compression by tumor. Damage to the lumbosacral spinal cord, cauda equina, or pelvic plexus. High spinal cord transection mainly stops the motility response to food. Low spinal cord or pelvic outflow lesions produce dilation of the colon and slow transit in the descending and distal transverse colon. Surgery in the abdomen can lead to adhesion development or direct changes in the bowel. Hypercalcemia Cholinergic control of secretions of the intestinal epithelium is mediated by changes in intracellular calcium concentrations. Hypercalcemia causes decreased absorption, leading to constipation, whereas hypercalcemia can lead to diarrhea. Secondary effects related to the disease Decreased appetite, decreased fluid intake, low-fiber diet, weakness, inactivity, confusion, depression, change in normal toileting habits. Etiology Decreased fluid and food intake leading to dehydration and weakness. Decreased intake, ineffective voluntary elimination actions, as well as decreased normal defecation reflexes. Decreased peristalsis; increased colonic transit time leads to increased absorption of fluid and electrolytes and small, hard, dry stools. Inactivity, weakness, changes in normal toileting habits, daily bowel function reflexes, and positioning affect ability to use abdominal wall musculature and relax pelvic floor for proper elimination. Psychological depression can increase constipation by slowing down motility. Concurrent disease Diabetes (hyperglycemia), hypothyroidism, hypokalemia, diverticular disease, hemorrhoids, colitis, chronic neurological diseases. Etiology Electrolytes and therefore water are transported via neuronal control. Like hypercalcemia, abnormal potassium can affect water absorption and contribute to constipation. Chronic neurological diseases affect the neurological stimulation of intestinal motility. Medication-related Opioid medications Anticholinergic effects (hydroscine, phenothiazines) Tricyclic antidepressants Antiparkinsonian drugs Iron Antihypertensives, antihistamines Antacids Diuretics Vinka alkaloid chemotherapy Etiology Opioids in particular suppress forward peristalsis and increase sphincter tone. Opioids increase electrolyte and water absorption in both the large and small intestine; this leads to dehydration and hard, dry stools. Morphine causes insensitivity of the rectum to distention, decreasing the sensation of the need to defecate. Vinca alkaloid chemotherapy has a neurotoxic effect that causes damage to the myenteric plexus of the colon. Th is increases nonpropulsive contractions. Colonic transit time is increased, leading to constipation. Antidepressants slow large bowel motility. Antacids (bismuth, aluminum salts) cause hard stools. Sources: Levy (1991), reference 5; Sykes (1996), reference 21.

taking opioids for pain are at extremely high risk for constipation. Diabetes damages the sensory fibers that are most important for temperature and pain sensation, as well as the neuronal influence on intestinal motility.3,6,13 In addition to assessing the extent of the patient’s constipation, determining the methods the patient has used to manage the constipation in the past is essential. This can usually provide information regarding what medications the patient tolerates best and where to start with recommendations for management. According to Sykes,1 using

radiography to evaluate whether constipation has advanced to obstruction may be useful if there is indecision, but in palliative medicine, the use of x-ray procedures should be limited. He also suggests that blood work be limited to corrective studies; for example, if hypercalcemia or hyperkalemia can be reversed to improve constipation, such blood work may be useful. Improving three important primary causes of constipation is essential. Encouraging fluid intake is a priority. Increasing or decreasing fluid intake by as little as 100 mL can effect

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constipation.9 Increase dietary intake as much as possible. This is a difficult intervention for many patients. Focusing on food intake for some patients can increase their anxiety and discomfort. If a patient feels that bowel movements are less frequent, think about dietary intake. The Western diet is fiberdeficient.5,6,12,19 Caution is needed for patients who use bulk laxatives such as psyllium, especially if they also are taking other bowel medications. Increasing the fiber intake for patients in general may be helpful, but in palliative care, high fiber in the diet can cause more discomfort and constipation. Fiber without fluid absorbs what little liquid the patient may have available in the bowel and makes the bowels more difficult to move.5,13,14 For example, an elderly patient who experiences reduced appetite and decreased fluid intake related to chemotherapy or disease, and whose symptoms are nausea or vomiting with reduced activity, is at extreme risk for constipation. Encouraging activity whenever possible, even in end-of-life care, can be very helpful. Increased activity helps to stimulate peristalsis and to improve mood.1,5 Physical therapy should be used as part of a multidisciplinary bowel-management approach. Providing basic range of motion, either active or passive, can improve bowel management and patient satisfaction.12,13

Pharmacological Management Types of Laxatives Bulk Laxatives. Laxatives can be classified by their actions. Bulk laxatives do just that—they provide bulk to the intestines to increase mass, stimulating the bowel to move. Increasing dietary fiber is considered a bulk laxative. The recommended dose of bran is 8 g daily. Other bulk laxatives include psyllium, carboxymethylcellulose, and methylcellulose.6 Bulk laxatives are more helpful for mild constipation. Because bulk laxatives work best when patients are able to increase their fluid intake, they may be inappropriate for end-stage patients. In palliative care, patients may not ingest enough fluid. It is recommended that the patient increase fluids by 200 to 300 mL when using bulk laxatives. Patients may have difficulty with the consistency of bulk laxatives and find this approach unacceptable. Patients using bulk laxatives without the additional fluid intake are at risk of developing a partial bowel obstruction or, if an impending one exists, may risk complete bowel obstruction. The benefits of bulk laxatives in severe constipation are questionable. Additional complications include allergic reactions, fluid retention, and hyperglycemia.5 Bulk laxatives produce gas as the indigestible or nonsoluble fiber breaks down or ferments. The result can be uncomfortable bloating and gas. The recommended dosage of bulk laxatives is to start with 8 g daily, then stabilize at 3 to 4 g for maintenance. Psyllium is recommended at 2 to 4 teaspoons daily as a bulk laxative. Action may take 2 to 3 days. Lubricant Laxatives. Mineral oil is probably the most common lubricant laxative used. It can help by both lubricating the stool

surface and softening the stool by penetration, leading to an easier bowel movement. Overuse of mineral oil can cause seepage from the rectum and perineal irritation. With chronic use it can lead to malabsorption of fat-soluble vitamins (vitamins A, D, E, and K). Levy5 recommends caution when giving mineral oil at bedtime or giving it to patients at risk for aspiration. Aspiration pneumonitis or lipoid pneumonia is common in the frail and elderly patient. A complication should be noted when mineral oil is given with docusate(Colace). If patients are on daily docusate and are given mineral oil in addition to assist with constipation, the absorption of mineral oil increases, leading to a risk of lipoid granuloma in the intestinal wall.5 The recommended dosage of mineral oil is 10 to 30 mL/ day, and action may occur in 1 to 3 days. Surfactant/Detergent Laxatives. Surfactant/detergent laxatives reduce surface tension, which increases absorption of water and fats into dry stools, leading to a softening effect. According to Levy5 and others,8,14 medications such as docusate exert a mucosal contact effect, which encourages secretion of water, sodium, and chloride in the jejunum and colon and decreases electrolyte and water reabsorption in the small and large intestines.9,20 At higher doses, these laxatives may stimulate peristalsis. Docusate is used in a compounded or fi xed combination with bowel stimulants like casanthranol (Peri-Colace) or senna (Senokot S). Castor oil also works like a detergent laxative by exerting a surface-wetting action on the stool and directly stimulates the colon, but Levy5 discourages its use in cancer-related constipation because results are difficult to control. The recommended dosage of surfactant/detergent laxatives includes docusate starting at 300 mg daily and calcium salt (Surfak) at 240 mg daily to twice a day. (This may take 1 to 3 days to be effective.) Combination Medications. Peri-Colace is a combination of a mild stimulant laxative, casanthranol, and the stool softener docusate. Combination softener/laxative medications have been shown to be more effective than softeners alone at a lower total dose.21 The recommended dosage of Senokot S is two tablets daily to twice a day (see Senokot S flow chart in Table 12–2). Senokot is a combination of senna as a laxative and a stool softener for smoother and easier evacuation. Results occur in 6 to 12 hours. Flexibility of dosing allows individual needs to be met. Combination medications are especially recommended for opioid related constipation. Remember as the dose of opioid increases, the dose of anticonstipation medications must also be increased. Osmotic Laxatives. Osmotic laxatives are nonabsorbable sugars that exert an osmotic effect in both the small and, to a lesser extent, large intestines. They increase fluid secretions in the small intestines by retaining fluid in the bowel lumen.7,12 They have the additional effect of lowering ammonia levels. This is helpful in improving confusion, especially in hepatic

Bowel Management failure patients. Laxatives in this category include: Lactulose, Magnesium citrate, Magnesium hydroxide (Milk of Magnesia®), Polyethylene glycol (PEG 3350, MiraLax®), and Sodium biphosphate (Phospho-Soda®). These laxatives can be effective for chronic constipation, especially when related to opioid use. Onset of action is between 2–48 hours.7 Milk of Magnesia can cause severe cramping and discomfort. This medication is recommended for use only as a last resort in chronically ill patients. Opioid-related constipation requires the use of aggressive laxatives earlier rather than later to prevent severe constipation, referred to as obstipation, which leads to obstruction. Drawbacks of agents like Lactulose or Sorbitol are that effectiveness is completely dose-related and, for some patients, the sweet taste is intolerable. The bloating and gas associated with higher doses may be too uncomfortable or distressing to tolerate. Lactulose or sorbitol can be put into juice or other liquid to lessen the taste. Patients may prefer hot tea or hot water to help reduce the sweet taste. Lactulose is more costly than sorbitol liquid. A study that compared the two medications found that there was no significant difference, except with regard to nausea, which increased with lactulose (P = 0.05).22 The recommended dosage of lactulose/sorbitol is 30 to 60 mL initially for severe constipation every 4 hours until a bowel movement occurs. Once that happens, calculate the amount of lactulose used to achieve that movement, and then divide in half for recommended daily maintenance dose.5 An example would be: it took 60 mL to have a bowel movement; therefore, 30 mL daily should keep the bowels moving regularly. The recommended dosage of Milk of Magnesia is 30 mL to initiate a bowel movement. For opioid-related constipation, 15 mL of Milk of Magnesia may be added to the baseline bowel medications either daily or every other day. Magnesium citrate comes in a 10-ounce bottle. For severe constipation, it is used as a one-time initial therapy. It can be titrated up or down, depending on patient response. For patients with abdominal discomfort or pain, it is recommended that obstruction be ruled out before using this medication. If the patient were obstructed, even only partially, this would only increase the discomfort or lead to perforation.3,23 Polyethylene glycol (PEG 3350), (MiraLax®) is used frequently and can be sprinkled over food. Recommended dose is 1 tablespoon. Evacuation can take between 2 to 4 days. If bowel obstruction is suspected, do not use.24 Osmotic rectal compounds include glycerin suppositories and sorbitol enemas. Glycerin suppositories soften stool by osmosis and act as a lubricant. Bowel Stimulants. Bowel stimulants work directly on the colon to increase motility. These medications stimulate the myenteric plexus to induce peristalsis. They also reduce the amount of water and electrolytes in the colon. They are divided into two groups: the diphenylmethanes and the anthraquinones. The diphenylmethanes are commonly known as phenolphthalein (Ex-Lax, Fen-a-Mint, Correctol, and Doxidan) and bisacodyl (Dulcolax). Phenolphthalein must be metabolized in the liver rather than in the colon. Levy5 points out that because the effect

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Table 12–2 Senokot S Laxative Recommendations for Cancer-Related Constipation Day 0 • Senokot S 2 tablets at bedtime If no BM on day 1 • Senokot S 2 tablets Bid. If no BM on day 2 • Senokot S 3 or 4 tablets Bid or Tid. If no BM on day 3 • Dulcolax 2 or 3 tablets Tid and/or Hs. • If no BM, rule out impaction • If impacted: • Lubricate rectum with oil-retention enema • Medicate with opioid and/or benzodiazepine • Disimpact • Give enemas until clear. • Increase daily laxative therapy per above • If not impacted: Give additional laxatives: • Lactulose (45–60 mL PO) • Magnesium citrate (8 oz) • Dulcolax suppository (1 PR) • Fleet enema (1 PR) At any step, if medication is ineffective, continue at that dose. If < 1 BM per day, increase laxative therapy per steps. If > 2 BM per day, decrease laxative therapy by 24 to 50. Source: Adapted from Levy (1991), reference 5.

is difficult to control and hepatic circulation is significant, this class of stimulants may not be appropriate for cancer-related constipation. The anthraquinones are bowel stimulants that include senna and cascara. They are activated in the large intestine by bacterial degradation into the large bowel, stimulating glycosides. The negative side of bisacodyl is its cramping side effect. This action causes a 6- to 12-hour delay when taken orally. Rectal absorption is much faster, at 15 to 60 minutes. It is recommended that bisacodyl be taken with food, milk, or antacids to avoid gastric irritation. One Senokot S® can counter the constipation caused by 120 mg of codeine.5 Senna is available in a liquid form called X-Prep Liquid. This is used for bowel cleansing before radiology procedures; 72 mL of X-Prep is equivalent to 10 Senokot tablets. Cascara, another anthraquinone, is commonly combined with milk of magnesia to make a mixture referred to as “Black and White.” This is a mild combination that reduces colic pain. Casanthranol is derived from cascara and is used as the stimulant component in Peri-Colace. Recommendations for use are senna 15-mg tablets used alone or as Senokot S. Starting dose is two tablets daily (see Table 12–2). These stimulating laxatives are the most effective management for opioid-related constipation. Bisacodyl comes in 10-mg tablets or suppositories and is used daily. The suppository medication has a faster onset that is much appreciated in the uncomfortable, constipated patient. Onset of action can be within 12 hours.7

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MILK and MOLASSES ENEMA RECIPE 8 oz. warm water 3 oz. powdered milk 4.5 oz. molasses • Put water and powdered milk in a plastic jar. Close the jar and shake until the water and milk appear to be fully mixed. • Add molasses, and shake the jar again until the mixture appears to have an even color throughout. • Pour mixture into enema bag. Administer enema high by gently introducing tube about 12 inches. Do not push beyond resistance. Repeat every 6 hours until good results are achieved.

Figure 12–2. Milk and molasses enema recipe. Sources: Bisanz

(2005), reference 11; Lowell (2003), reference 38.

Suppository Medications. As discussed above, bisacodyl (Dulcolax) comes in a suppository. Although the thought of rectal medications is unpleasant for many patients, suppositories’ quick onset of action makes them more acceptable. Bisacodyl comes in 10 mg for adults and 5 mg as a pediatric dose. Suppositories should never be used in patients with severely reduced white cell or platelet counts due to the risk of bleeding or infection. Liquid rectal laxatives or lubricants should be used infrequently. In severely constipated patients, they may be necessary. Most commonly, saline enemas are used to loosen the stool and to stimulate rectal or distal colon peristalsis. Repeated use can cause hypocalcemia and hyperphosphatemia, so it is important to use enemas cautiously. Enemas should never be considered part of a standing bowel regimen. Onset of action can be within 30 minutes. Oil retention enemas, however, are particularly helpful for severely constipated patients, for whom disimpaction may be necessary. They work best when used overnight, to allow softening. Overnight retention is effective only if the patient is able to retain it that long. The general rule is that the longer the enema is retained, the better the results. Bisanz11 recommends a milk-and-molasses enema (Figure 12–2) for patients with low impaction to ease stool evacuation in a non-irritating way. It is a low-volume enema of 300 mL and therefore thought to cause less cramping. Combining an enema with an oral saline-type cathartic (Lactulose, Cephylac) is helpful when a large amount of stool is present.5,11 This may help to push the stool through the GI tract. If disimpaction is necessary, remember that it can be extremely painful; therefore, premedicate the patient with either opioid and/or benzodiazepine anxiolytics to reduce physical and emotional pain.4,6,14 There are few studies outlining the efficacy of one enema over another. The reported success rates for rectal enemas within 1 hour includes phosphate enemas (100), mini-enemas (Micralax) (95), bisacodyl suppositories (66), and glycerine suppositories (38).25 If none of the above enemas is effective, Sykes21 recommends rectal lavage with approximately 8 liters of warmed normal

saline. It is important to remember that if a patient’s constipation requires this invasive intervention, you must change the usual bowel regimen once this bowel crisis is resolved. For severe constipation associated with opioids, Levy5 suggests four Senokot S and three Dulcolax tablets three times a day and 60 mL of lactulose every other night for a goal of a bowel movement every other day (see Table 12–2).

New Approaches to Constipation Management Oral naloxone has been studied for the treatment of opioidrelated constipation resistant to other treatments. CulpepperMorgan and colleagues26 found that the majority of opioid effect on the human intestine is mediated peripherally rather than centrally at the level of the GI tract itself.3,24,25 Naloxone, which is an opioid antagonist, has less than 1 availability systemically when given orally, due to the first-pass effect in the liver. Oral naloxone has shown some relief of constipation, but dosing varies among patients. Sykes used 20 of the daily morphine dose but found that patients did develop some decreased analgesia. Liu and Wittbrodt did a very small study and even with the some improvement in their bowel frequency some had a reversal in analgesia.21,27 Using naloxone in the outpatient setting is not recommended because of the increased risk of withdrawal or dose-benefit behavior.25 The starting dose should be no more than 5 mg.21 It was suggested that oral naloxone doses of greater than 12 mg should be used with caution. The newest opioid antagonist is Methylnaltrexone (Relistor®). It is administered subcutaneously and is indicated for the treatment of opioid-induced constipation in patients with advanced illness. Results occurred within 4 hours and, unlike oral naloxone, it crosses the blood-brain barrier less readily so therefore is less likely to reverse centrally-mediated analgesia.27,28 Oral erythromycin has been shown to cause diarrhea in 50 of patients who use it as an antibiotic.6 Currently, researchers are investigating its use to promote diarrhea. There is also interest in identifying a medication that would increase colon transit time without being antibacterial. Many herbal medicines have laxative properties, such as mulberry and constituents of rhubarb, which are similar to senna. These herbs are being evaluated for use as laxatives. Patients have been known to develop rashes; in one patient, changes were found in warfarin (Coumadin) levels that were related to natural warfarin found in a laxative tea. Many patients prefer these options instead of pharmaceutical laxatives, but they should be cautious about where they purchase any herbal product and be alert to any unexplained side effects, as their content is unregulated.

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Nursing Interventions for Constipation Nurses should always be proactive in initiating laxative therapy. Bowel function requires continued evaluation to follow

Bowel Management the trajectory of the disease and the changes that occur in normal activities that affect bowel function. Nurses should also be alert to medications that can increase the risk of constipation (see Table 12–1). Some patients, especially those on long-term opioid therapy, sometimes need at least two different regimens that can be interchanged when one or the other loses its effectiveness for a time. Like opioids, over time, a standing laxative regimen may be less effective if tolerance develops.5,6 It is also important to be aware of medication dosing changes, as it is common to forget to increase anticonstipation therapy when there is an increase in opioid therapy. Patients generally have increased risk of constipation when opioids are increased. Positioning patients to allow gravity to assist with bowel movements is helpful. Assisting with oral fluid intake, as well as dietary interventions are both helpful. Discuss patients’ management needs as well as personal cultural perspectives and factors that may contribute to good bowel hygiene. Exercise within each patient’s tolerance is recommended to aid in elimination. Fatigue, advanced disease, and decreased endurance all play a role in obstructing good bowel maintenance. The importance of effective bowel management cannot be stressed enough. It remains one of the most distressing symptom in end-stage cancer patients.

o]o]o] DIARRHEA Diarrhea has been a major symptom and significant problem associated with newer chemotherapeutic and biological and radiation treatment regimens.20,24,29 It is a main symptom of 7 to 10 of hospice admissions.29,30 Overgrowth of GI infections such as Candida can cause diarrhea as well.6 Treating diarrhea requires a thorough assessment and therapy directed at the specific cause. Diarrhea is usually acute and short-lived, lasting only a few days, as opposed to chronic diarrhea, which lasts 3 weeks or more.29 Diarrhea can be especially severe in human immunodeficiency virus (HIV)-infected patients.6,30,31 Diarrhea of 500 mL/day or greater occurs in 35–50 of bone marrow transplant patients related to radiation or graft versus host disease (GVHD).29 Similar to constipation, this symptom can be debilitating and can severely affect quality of life.24,28 Diarrhea can prevent patients from leaving their homes, increase weakness and dehydration, and contribute to feelings of lack of control and depression. Nurses play a significant role in recognizing, educating, and managing diarrhea and its manifestations.

Definitions Diarrhea is described as an increase in stool volume and liquidity resulting in three or more bowel movements per day.6,29 Secondary effects related to diarrhea include abdominal cramps, anxiety, lethargy, weakness, dehydration, dizziness, loss of electrolytes, skin breakdown and associated pain, dry mouth, and weight loss. Diarrhea varies among patients depending on their bowel history. Acute diarrhea occurs

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within 24 to 48 hours of exposure to the cause and resolves in 7 to 14 days. Chronic diarrhea usually has a late onset and lasts 2 to 3 weeks, with an unidentified cause.

Prevalence and Impact Cancer patients may have multiple causes of diarrhea. It may be due to infections or related to tumor type or its treatment. A common cause of diarrhea is overuse of laxative therapy or dietary fiber. Additional causes include malabsorption disorders, motility disturbances, stress, partial bowel obstruction, enterocolic fistula, villous adenoma, endocrine-induced hypersecretion of serotonin, gastrin calcitonin, and vasoactive intestinal protein prostaglandins.5,29 Treatment-related causes include radiation and chemotherapy, which cause overgrowth of bacteria, with endotoxin production that has a direct effect on the intestinal mucosa. Local inflammation and increased fluid and electrolyte secretion occur, resulting in interference with amino acid and electrolyte transport and a shift toward secretion by crypt cells with shortened villi.29 Diarrhea associated with radiation can occur by the 2nd or 3rd week of treatment and can continue after radiation has been discontinued.6,32 Radiation-induced diarrhea is related to focus of radiation and total of radiation dose. Pelvic radiation alone has been shown to cause diarrhea of any grade in up to 70 of the patients receiving it. A grade 3 or 4 diarrhea is associated with approximately 20 of those patients.29 The risk is increased in acquired immunodeficiency syndrome (AIDS), GVHD, or HIV patients. The end result could be a change in the intestinal mucosa that results in a limited ability to regenerate epithelium, which can lead to bleeding and ileus. The damaged mucosa leads to increased release of prostaglandins and malabsorption of bile salts, increasing peristaltic activity.30–32 Surgical patients who have had bowel-shortening procedures or gastrectomy related to cancer experience a “dumping syndrome,” which causes severe diarrhea. This type of diarrhea is related to both osmotic and hypermotile mechanisms.5,6 Patients may experience weakness, epigastric distention, and diarrhea shortly after eating.33 The shortened bowel can result in a decreased absorption capacity and an imbalance in absorptive and secretory function of the intestine.

Pathophysiology Diarrhea can be grouped into four types, each with a different mechanism: osmotic diarrhea, secretory diarrhea, hypermotile diarrhea, and exudative diarrhea. Cancer patients rarely exhibit only one type. Understanding the mechanism of diarrhea permits more rational treatment strategies.6,29,30,33 Osmotic Diarrhea. Osmotic diarrhea is produced by intake of hyperosmolar preparations or nonabsorbable solutions such as enteral feeding solutions.6,29 Enterocolic fistula can lead to both osmotic diarrhea from undigested food entering the colon and hypermotile diarrhea. Hemorrhage into the intestine can

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Table 12–3 National Cancer Institute Scale of Severity of Diarrhea National Cancer Institute Grade

Increased number of loose stools/day Symptoms

0

1

2

3

4

Normal

2–3

4–6

7–9

>10

None

Nocturnal stools and/ or moderate cramping

Incontinence and/or severe cramping

Grossly bloody diarrhea and/ or need for parenteral support

cause an osmotic-type diarrhea because intraluminal blood acts as an osmotic laxative. Osmotic diarrhea may result from insufficient lactase when dairy products are consumed. Secretory Diarrhea. Secretory diarrhea is most associated with chemotherapy and radiation therapy. The cause is related to mechanical damage to the epithelial crypt cells in the GI tract.32 The necrosis that results, along with the inflammation and ulceration of the intestinal mucosa, leads to further damage related to exposure to bile and susceptibility to opportunistic infections, atrophy of the mucosal lining, and fibrosis. This all contributes to loss of absorption due to damaged villi, causing an increase in water, electrolytes, mucus, blood, and serum to be pulled into the intestine from immature crypt cells, and increased fluid secretion, resulting in diarrhea.20,33–35 Secretory diarrhea is the most difficult to control. Malignant epithelial tumors producing hormones that can cause diarrhea include metastatic carcinoid tumors, gastrinoma, and medullary thyroid cancer. The primary effect of secretory diarrhea is related to the hypersecretion stimulated by endogenous mediators that affect the intestinal transport of water and electrolytes. This results in accumulation of intestinal fluids.20,29,30,31 Diarrhea associated with GVHD results from mucosal damage and can produce up to 6 to 8 liters of diarrhea in 24 hours.32 Surgical shortening of the bowel, which reduces intestinal mucosal contact and shortens colon transit time, causing decreased reabsorption, leads to diarrhea. Active treatment requires vigorous fluid and electrolyte repletion, antidiarrheal therapy, and specific anticancer therapy.5,20 Preventing diarrhea associated with chemotherapy and radiation is not always realistic, but being proactive in anticipating diarrhea and prompt management may be effective.5,30,33 Initiation of medication with the first episode is suggested. The recommendation starts with loperamide 4 mg, then 2 to 4 mg every 2 to 4 hours (max 16 mg/24 h). If there is no response at 24 to 48 hours, then, based on grade, either increase the loperamide dose, then reevaluate in 24 hours, or start octreotide 100 to 500 mcg subcutaneously, three times a day for grades 3 to 4 diarrhea.20 The somatostatin analogue octreotide is used for grades 3 to 4 diarrhea with success. One study in patients experiencing chemotherapy-induced diarrhea unresponsive to loperamide had a 92 response to octreotide SC 500 mcg three times daily.36 The use of sustained release octreotide (LAR) for the treatment of diarreal

syndromes, as well as treatment of malignant bowel obstruction related nausea, vomiting and pain has shown benefit.36 The goal is to prevent high-grade diarrhea that results in dose reduction or cessation of chemotherapy regimens.37 Cost is a major issue with this medication; dosing for only 3–7 days at $50–$250.00/day could run close to $1800.00.10,20,38 However, along with preventing dose reduction of chemotherapy, the potential to reduce the number of episodes of diarrhea and minimize the additional effects on psychosocial issues and quality of life may make this approach worthwhile. Hypermotile Diarrhea. Partial bowel obstruction from abdominal malignancies can cause a reflex hypermotility that may require bowel-quieting medications such as loperamide.33 Enterocolic fistula can lead to diarrhea from irritative hypermotility and osmotic influence of undigested food entering the colon. Biliary or pancreatic obstruction can cause incomplete digestion of fat in the small intestine, resulting in interference with fat and bile salt malabsorption, leading to hypermotile diarrhea, also called steatorrhea. Malabsorption is related to pancreatic cancer, gastrectomy, ileal resection or colectomy, rectal cancer, pancreatic islet cell tumors, or carcinoid tumors. Chemotherapy-induced diarrhea is frequently seen with 5-fluorouracil or N-phosphonoacetyl-l-aspartate. High-dose cisplatin and irinotecan (Camptosar) cause severe hypermotility. Other chemotherapy drugs that cause diarrhea include cytosine arabinoside, nitrosourea, methotrexate, cyclophosphamide, doxorubicin, daunorubicin, hydroxyurea and biotherapy-2, interferon and topoisomerase inhibitors (capecitabine [5-FU prodrug]), oxaliplatin.20,29 Exudative Diarrhea. Radiation therapy of the abdomen, pelvis, or lower thoracic or lumbar spine can cause acute exudative diarrhea.29 The inflammation caused by radiation leads to the release of prostaglandins. Treatment using aspirin or ibuprofen was shown to reduce prostaglandin release and decrease diarrhea associated with radiation therapy.29 Bismuth subsalicylate (Pepto-Bismol) is also helpful for diarrhea caused by radiotherapy.11 According to Sykes,6 there are multiple causes of diarrhea in palliative medicine. Concurrent diseases such as diabetes mellitus, hyperthyroidism, inflammatory bowel disease, irritable bowel syndrome, and GI infection (C. difficile) can contribute to the development of diarrhea. Finally, the dietary

Bowel Management influences of fruit, bran, hot spices, and alcohol, as well as over-the-counter medications, laxatives, and herbal supplements, need to be considered as sources of diarrhea.6,29

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Assessment of Diarrhea Diarrhea assessment requires a careful history to detail the frequency and nature of the stools. The National Cancer Institute Scale of Severity of Diarrhea uses a grading system from 0 to 4. Stools are rated by (1) number of loose stools per day and (2) symptoms (Table 12–3). This scale permits an objective score to define the severity of diarrhea. The initial goal of assessment is to identify and treat any reversible causes of diarrhea. If diarrhea occurs once or twice a day, it is probably related to anal incontinence. Large amounts of watery stools are characteristic of colonic diarrhea. Pale, fatty, malodorous stools, called steatorrhea, are indicative of malabsorption secondary to pancreatic or smallintestinal causes. If a patient who has been constipated complains of sudden diarrhea with little warning, fecal impaction with overflow is the probable cause.6,29 Evaluate medications that the patient may be taking now or in the recent past. Is the patient on laxatives? If the stools are associated with cramping and urgency, it may be the result of peristalsis-stimulating laxatives. If stools are associated with fecal leakage, it may be the result of overuse of stool-softening agents such as Colace.6,29 Depending on the aggressiveness of the treatment plan, additional assessment could include stool smears for pus, blood, fat, ova, or parasites. Stool samples for culture and sensitivity testing may be necessary to rule out additional sources of diarrhea through C. difficile toxin, Giardia lamblia, or other types of GI infection.5 If patients have diarrhea after 2 to 3 days of fasting, secretory diarrhea should be evaluated. Osmotic and secretory causes are considered first; if ruled out, then hypermotility is the suspected mechanism.

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Management of Diarrhea A combination of supportive care and medication may be appropriate for palliative management of diarrhea. The goal of diarrhea management should focus on minimizing or eliminating the factors causing the diarrhea, providing dietary interventions, and maintaining fluid and electrolyte balance as appropriate. Quality-of-life issues include minimizing skin breakdown or infections, relieving pain associated with frequent diarrhea, and maintaining the patient’s dignity.20,29 If the patient is dehydrated, oral fluids are recommended over the IV route.9,20 Oral fluids should contain electrolytes and a source of glucose to facilitate active electrolyte transport (Figure 12–3). Foods to be avoided in patients experiencing acute diarrhea include: spicey food, high-fat and fried foods, gas causing foods, alcohol and caffeine foods or high-sorbitol

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ADULT HOMEMADE ELECTROLYTE REPLACEMENT SOLUTION 1 tsp salt 1 tsp baking soda 1 tsp corn syrup

6 oz. frozen orange juice concentrate 6 cups water 47 kcal/cup, 515 mg Na⫹, 164 mg K⫹

Following diarrhea, the diet should start with clear liquids, flat lemonade, ginger ale, and toast or simple carbohydrates. It is recommended that the patient avoid milk if diarrhea is related to infection due to acute lactase deficiency. Protein and fats can be added to the diet slowly as diarrhea resolves. Dietary management may help minimize amount of diarrhea.

Figure 12–3. Homemade electrolyte replacement solution for adults. Source: Weihofen & Marino (1998), reference 34.

juices. Milk and dairy products for some patients should be avoided as well.20

Medication Recommendations There are many nonspecific diarrhea medications that should be used unless infections are suspected as the cause. If Shigella or C. difficile are responsible, nonspecific antidiarrheal medications can make the diarrhea worse.6 Loperamide (Imodium) has become the drug of choice for the treatment of nonspecific diarrhea. It is a long-acting opioid agonist.20 The 2-mg dose has the same antidiarrheal action as 5 mg, two tablets of diphenoxylate, or 45 mg of codeine.4 The usual management of diarrhea begins with 4 mg of loperamide, with one capsule following each loose bowel movement. Most diarrhea is managed by loperamide 2 to 4 mg once to twice a day.5,20 Diphenoxylate (Lomotil 2.5 mg with atropine 0.025 mg) is given as one or two tablets orally as needed for loose stools, maximum of eight/day. Diphenoxylate is derived from meperidine and binds to opioid receptors to reduce diarrhea. Atropine was added to this antidiarrheal to prevent abuse.5 Diphenoxylate is not recommended for patients with advanced liver disease because it may precipitate hepatic coma in patients with cirrhosis.5,20 Neither diphenoxylate nor loperamide is recommended for use in children under 12 years old.5 Codeine as an opioid for the reduction of diarrhea can be helpful. It is also less expensive than some opioid medications. Most cancer-related diarrheas respond well to this drug. For specific mechanisms, other medications might be more beneficial. Tincture of opium works to decrease peristalsis, given at 0.6 mL every 4 to 6 hours. This is a controlled substance but may also provide some pain relief.20 Absorbent agents such as pectin and methylcellulose may help provide bulk to increase consistency of the stools.20 Anticholinergic drugs such as atropine and scopolamine are useful to reduce gastric secretions and decrease peristalsis. Somatostatin analogues such as octreotide (Sandostatin) are also effective for secretory diarrhea that may result from endocrine tumors, AIDS, GVHD, or post-GI resection.5,6,20,33

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They may be helpful for patients who experience painful cramping.5 Side effects of that class of drug can complicate their use: dry mouth, blurred vision, and urinary hesitancy. Mucosal antiprostaglandin agents such as aspirin, indomethacin, and bismuth subsalicylate (Pepto-Bismol) are useful for diarrhea related to enterotoxic bacteria, radiotherapy, and prostaglandin-secreting tumors. Octreotide (Sandostatin) is effective for patients with AIDS, GVHD, diabetes, or GI resection.6,30,39 Octreotide is administered subcutaneously at a dose of 50 to 200 mcg two or three times per day. Ranitidine is a useful adjuvant to octreotide for patients with ZollingerEllison syndrome with gastrin-induced gastric hypersecretion.5 Side effects include nausea and pain at injection site. Patients may also experience abdominal or headache pain.5 Clonidine is effective at controlling watery diarrhea in patients with bronchogenic cancer. Clonidine effects an α2-adrenergic stimulation of electrolyte absorption in the small intestine.5 Streptozocin is used for watery diarrhea from pancreatic islet cell cancer because it decreases intestinal secretions. Hypermotile diarrhea involves problems with fat absorption. The recommended treatment is pancreatin before meals. Pancreatin is a combination of amylase, lipase, and protease that is available for pancreatic enzyme replacement. Lactaid may also be helpful for malabsorption-related diarrhea.

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Nursing Interventions for Diarrhea Nursing interventions should include nonpharmacological interventions focused on diet and psychosocial support (Tables 12–4 and 12–5).

Table 12–4 Nutritional Management of Cancer-Related Diarrhea: Foods and Medication to Avoid Medications Antibiotics, bulk laxatives (Metamucil, methylcellulose), magnesium-containing medications (Maalox, Mylanta), promotility agents (propulsid, metoclopramide), stool softeners/ laxatives (Peri-Colace, Dulcolax), herbal supplements (milk thistle, aloe, cayenne, saw palmetto, Siberian ginseng). Foods Milk and diary products (cheese, yogurt, ice cream), caffeine- containing products (coffee, tea, cola drinks, chocolate), carbonated and high-sugar or high-sorbitol juices (prune pear, sweet cherry, peach, apple, orange juice), high-fiber/gas-causing legumes (raw vegetables, whole grain products, dried legumes, popcorn), high-fat foods (fried foods, high-fat spreads, or dressings), heavily spiced foods that taste “hot”. High risk foods—sushi, street vendors, buffets. Sources: Adapted from Stern & lppoliti (2003), reference 20; Engelking (2004), reference 30.

• Evaluate medications currently being used to identify polypharmacy, where multiple medication side effects may be contributing to the problem. • Minimize or prevent diarrhea accidents in an effort to reduce patient anxiety. Anticipate obstacles between the patient and the bathroom. Assist with access plans and timing needs. Recommend commode chair at bedside to allow easiest access and prevent falls or additional problems. • Protecting the bed with Chux can be better accepted than diapers. It may also be better for skin integrity but requires multiple layers of Chux and drawsheets for best results. • Applying skin ointment protection after cleaning and drying the area is also important. Thick protectant creams that apply a barrier on the skin are most beneficial. Eucerin cream, zinc oxide, and bag balm are three that have been used anecdotally with success. • The psychosocial impact of diapers can be devastating for some patients. Encourage a discussion with patient and family about patient needs, fears, and perceptions. • Along with focus on diet/medications, skin integrity, and psychosocial needs, odor management must also be addressed. Perfumed air fresheners sometimes only make it worse. Concentrate on being sure the perineum or periostomy area is clean and the linens are not soiled. Also be sure that dirty linens or trash are removed from the room. Using aromatherapy such as lavender may be soothing. • Remember that there may be times when adult diapers are essential and can help alleviate distress to the patient; for example, when traveling or on necessary outings. Remind families to check them frequently to prevent skin breakdown and, again, be sure there is skin barrier ointment applied before the diaper padding.

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Conclusion Managing diarrhea in the cancer patient is challenging at best. The nurse’s role in helping the patient and caregivers talk about this difficult symptom is essential. It is important to respect comfort levels about the topic among nurse, patient, and caregiver to allow information sharing. Goals of diarrhea therapy should be to restore an optimal pattern of elimination, maintain fluid and electrolyte balance as desired, preserve nutritional status, protect skin integrity, and ensure the patient’s comfort and dignity.11,20

o]o]o] MALIGNANT OBSTRUCTION As primary tumors grow in the large intestine, they can lead to obstruction. Obstruction is related to the site and stage of

Table 12–5 Nursing Role in the Management of Diarrhea Environmental assessment • Assess the patient’s and/or caregiver’s ability to manage the level of care necessary. • Evaluate home for medical equipment that may be helpful (bedpan or commode chair). History • Frequency of bowel movements in last 2 wks. • Fluid intake (normal 2 quarts/day). • Fiber intake (normal 30–40 g/day). • Appetite and whether patient is nauseated or vomiting. Does diet include spicy foods? • Assess for current medications the patient has taken that are associated with causing diarrhea (laxative use, chemotherapy, antibiotics, enteral nutritional supplements, nonsteroidal antiinflammatory drugs). • Surgical history that may contribute to diarrhea (gastrectomy, pancreatectomy, bypass or ileal resection). • Recent radiotherapy to abdomen, pelvis, lower spine. • Cancer diagnosis associated with diarrhea includes abdominal malignancies, partial bowel obstruction; enterocolic fistulae; metastatic carcinoid tumors; gastrinomas; medullary thyroid cancer. • Immunosuppressed, susceptible to bacterial, protozoan, and viral diseases associated with diarrhea. • Concurrent diseases associated with diarrhea: gastroenteritis, inflammatory bowel disease, irritable bowel syndrome, diabetes mellitus, lactose deficiency, hyperthyroidism. Physical assessment • Examine perineum or ostomy site for skin breakdown, fissures, or external hemorrhoids. • Gentle digital rectal examination for impaction. • Abdominal examination for distention of palpable stool in large bowel. • Examine stools for signs of bleeding. • Evaluate for signs of dehydration. Interventions • Treatment should be related to cause (i.e., if obstruction is cause of diarrhea, giving antidiarrheal medications would be inappropriate). • Assist with correcting any obvious factors related to assessment (e.g., decreasing nutritional supplements, changing fiber intake, holding or substituting medications associated with diarrhea). • If bacterial causes are suspected, notify physician and culture stools as instructed. Clostridium difficile is most common. • Educate patient and family on importance of cleansing the perineum gently after each stool, to prevent skin breakdown. If patient has a colostomy, stomal area must also be watched closely and surrounding skin protected. Use skin barrier such as Desitin ointment to protect the skin. Frequent sitz baths may be helpful. • Instruct patient and family on signs and symptoms that should be reported to the nurse or physician: excessive thirst, dizziness, fever, palpitations, rectal spasms, excessive cramping, water or bloody stools. Dietary measures • Eat small, frequent, bland meals. • Low-residue diet—potassium-rich (bananas, rice, peeled apples, dry toast). • Avoid intake of hyperosmotic supplements (e.g., Ensure, Sustacal). • Increase fluids in diet. Approximately 3 liters of fluid a day if possible. Drinking electrolyte fluids such as Pedialyte may be helpful. • Homeopathic treatments for diarrhea include: ginger tea, glutamine, and peeled apples. Pharmacologic management • Opioids—codeine, paregoric, dihenoxylate, loperamide, tincture of opium. • Absorbents—pectin, aluminum hydroxide. • Adsorbents—charcoal, kaolin. • Antisecretory—aspirin, bismuth subsalicylate, prednisone, Sandostatin, ranitidine hydrochloride, indomethacin. • Anticholinergics—scopolamine, atropine sulfate, belladonna. • α 2-Adrenergic agonists—clonidine. Report to nurse or physician if antidiarrheal medication seems ineffective. Psychosocial interventions Provide support to patient and family. Recognize negative effects of diarrhea on quality of life: • Fatigue. • Malnutrition. • Alteration in skin integrity. • Pain and discomfort. • Sleep disturbances. • Limited ability to travel. • Compromised role within the family. • Decreased sexual activity. • Caregiver burden. Sources: Levy (1991), reference 5; Bisanz (2005), reference 11; Viele (2003), reference 29.

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disease.35,40,41 Tumors in the splenic flexure obstruct 49 of the time, but those in the rectum or rectosigmoid junction only 6 of the time.40,41 Obstruction can occur intraluminally related to primary tumors of the colon. Intramural obstruction is related to tumor in the muscular layers of the bowel wall. The bowel appears thickened, indurated, and contracted.6,42 Extramural obstruction is related to mesenteric and omental masses and malignant adhesions. The common metastatic pattern, in relation to primary disease in the pancreas, ovaries or stomach, generally goes to the duodenum, from the colon to the jejunum and ileum, and from the prostate or bladder to the rectum.6,41,42 Bowel obstruction in cancer patients is not always due to their tumors. Hernias, radiation induced strictures, or adhesions may be the cause, so it is important that patients with obstructive symptoms be thoroughly evaluated to rule out a correctable cause.6,41,42

Definition Experts agree there is no standard definition for Malignant Bowel Obstruction (MBO)—it means different things to different physicians.43,44 A current definition uses the criteria that there is “clinical evidence of bowel obstruction, obstruction beyond the ligament of Treitz (in the setting of intra-abdominal cancer with incurable disease), or nonintra-abdominal primary cancer with clear intraperitoneal disease.”45 The significance of an agreed upon definition is the ability to evaluate treatment plans for evidence-based recommendations.43 Clinical evidence of intestinal obstruction is occlusion of the lumen or absence of the normal propulsion that affects elimination from the GI tract.38,40 Motility disruption, either impaired or absent, leads to a mechanical obstruction but without occlusion of the intestinal lumen. Mechanical obstruction results in the accumulation of fluids and gas proximal to the obstruction. Distention occurs as a result of intestinal gas, ingested fluids, and digestive secretions. It becomes a self-perpetuating phenomenon as when distention increases, intestinal secretion of water and electrolytes increases. A small-bowel obstruction causes large amounts of diarrhea. The increased fluid in the bowel leads to increased peristalsis, with large quantities of bacteria growing in the intestinal fluid of the small bowel.38,40 Obstruction is related to the surrounding mesentery or bowel muscle, such as in ovarian cancer. Additional factors include multiple sites of obstruction along the intestine and constipating medications (Table 12–6), fecal impaction, fibrosis, or change in normal flora of the bowel. The goal of treatment is to prevent obstruction from happening whenever possible.

levels increase and can lead to sepsis and associated multisystem failure and death.40 The difficulty is knowing which patients will truly benefit from surgical intervention. The impact of obstruction on the patient and family is overwhelming. The patient and caregivers have been aggressively trying to manage the patient’s constipation in an effort to prevent this very problem. Obstruction for patients means failure to manage constipation or a sign of growing disease. New interventions have been developed in an effort to provide additional noninvasive approaches for the management of bowel obstruction.36,43,46 Bowel obstruction can occur in between 5–43 of patients with advanced disease. Intestinal obstruction related to benign causes in patients with a previous malignancy can be significant: 3-48. No specific guidelines for the management of malignant bowel obstructions (MBO) are defined.41,43,44 Each case must be evaluated individually with care decisions based on goal of treatment. Unfortunately, studies also differ in agreeing on a successful outcome. Defining success may be evaluated based on ability to resume oral intake, on relief of pain, nausea or vomiting, extended survival or improvement in quality of life.41,43,44 Further research needs to be done42,47 to evaluate the effects of surgical intervention on quality as well as quantity of life. The effect of unrelieved intestinal obstruction on quality of life for the patient and loved ones is devastating.

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Assessment and Management of Malignant Obstruction Patients may experience severe nausea, vomiting, and abdominal pain associated with a partial or complete bowel obstruction. In the elderly patient, fecal impaction may also cause urinary incontinence.6 General signs and symptoms associated with different sites of obstruction are listed in Table 12–6. Table 12–6 Sites of Intestinal Obstruction and Related Side Effects Site

Side Effects

Duodenum

Severe vomiting with large amounts of undigested food. Bowel sounds: succussion splash may be present. No pain or distention noted. Moderate to severe vomiting; usually hyperactive bowel sounds with borborygmi; pain in upper and central abdomen, colic in nature; moderate distention. Vomiting is a late side effect. Borborygmi bowel sounds, severe distention. Pain central to lower abdomen, colic in nature.

Small intestine

Prevalance and Impact The best treatment options for bowel obstruction in a patient with advanced cancer remain undetermined.43 Managing MBO is dependant on level of obstruction, disease status related to prognosis, prior treatments, as well as the patient’s current health status.41,42 As obstruction increases, bacteria

Large intestine

Source: Ripamonte & Mercadante (2004), reference 25.

Bowel Management Providing thoughtful and supportive interventions may be more appropriate than aggressive, invasive procedures. The signs and symptoms of obstruction may be acute, with nausea, vomiting, and abdominal pain. A majority of the time, however, obstruction is a slow and insidious phenomenon, which may progress from partial to complete obstruction. Palliative care should allow for a thoughtful and realistic approach to management of obstruction within the goals of care. Radiological examination should be limited unless surgery is being considered Treatment options start with a non-surgical approach and emergent surgical intervention is usually not necessary unless the risk of perforation is eminent. Patients who would benefit from surgical intervention for MBO are evaluated based on age, tumor status, presence of ascites, nutritional status, previous chemotherapy or radiation treatments.40,41,43,47 A surgical intervention would most likely not benefit a patient if they have ascites, multiple bowel obstructions, carcinomatosis or poor overall clinical status.41

Surgical Intervention A percentage of cancer patients may experience nonmalignant obstruction.42 Therefore, assuming the obstruction is related to worsening cancer may prevent the health care team from setting realistic treatment goals. A thorough assessment should be done, with attention to poor prognostic factors.6,38,41 These factors historically include general medical condition or poor nutritional status, ascites, palpable abdominal masses or distant metastases, previous radiation to the abdomen or pelvis, combination chemotherapy, and multiple small-bowel obstructions.41,42 Helyer and Easson42 organize criteria for surgical interventions as, firstly, patient factors including advanced age, nutritional status, performance status, comorbidities and anti-cancer treatment history, psychological health and social support. Secondly, factors including disease-related etiology, tumor grade and tumor extent. Finally, operative factors. Will the procedure relieve symptoms for an extended amount of time with reasonable operative morbidity? The bottom line becomes balancing the risks and benefits of the surgery in contrast to nonsurgical options and the patient’s goals of care. The use of laparoscopic surgical techniques have brought about changes in the use of open surgical techniques in the palliative care patient. Surgical intervention should be a decision made between patient and physician within the established goals of care. The patient’s right to self-determination is essential. As patient advocates, the nurse’s role is to educate the patient and family. Helping them to understand physician recommendations, as well as considering their personal desires and options in an effort to develop the treatment plan, is essential. Surgical resection for obstructing cancers of the GI tract, pancreas, or biliary tracts were found to have a 3- to 7-month survival.33 This study pointed out the importance of nutritional status at baseline and assessment of performance status for its relationship to “reasonable quality of life.”33 The important

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conclusion of these studies was to leave the decision to operate with an informed patient. Mortality is possible. The need for additional surgeries remains high due to recurrence of the obstruction, wound infections, sepsis and further obstruction.25 Survival rates with each subsequent surgery lessen. New options for management of MBO have developed as laporoscopy has become more frequent and experienced providers are more available. The improvements in X-ray technologies have also improved the diagnosis of the cause of the MBO to help choose more appropriate interventions4especially in light of the high morbidity and mortality associated with surgery in this population.40–42,46,48–51

Radiological Examination Bowel obstruction may be diagnosed on the basis of a plain abdominal x-ray, but contrast may help identify the site and extent of the obstruction. CT exams have shown an accuracy of 94 in determining the cause of a bowel obstruction. The use of either CT or MRI to help develop a treatment plan for MBO has improved decision-making between a surgical or medical management approach.42 Barium is not recommended because it may interfere with additional studies.43

Alternative Interventions Nasogastric or nasointestinal tubes have been used to decompress the bowel and/or stomach. Use of these interventions, although uncomfortable for the patient, has been suggested for symptom relief while evaluating the possibility of surgery. Venting gastrostomy or jejunostomy can be a relatively easy alternative, which is especially effective for severe nausea and vomiting. It can be placed percutaneously with sedation and local anesthesia. Patients can then be fed a liquid diet, with the tube clamped for as long as tolerated without nausea or vomiting.43

Endoscopic Palliation Laparoscopic surgical techniques have brought about new options for inoperable cancers. Gastroenterologists or interventional radiologists now have an increased role in palliating obstructions.46 The use of enteral self-expandable metal stents (SEMS) are a permanent intervention that is performed through endoscopy to improve luminal patency and allow oral intake without surgery. The use of self-expanding metallic stents has been highly effective for MBO and, in some cases, has prevented the need for colostomy.42,46 It is done in interventional radiology and requires close clinical observation, since perforation is a potential complication. At the minimum, it has allowed emergent relief of obstruction for surgical intervention in the future. Putting a patient through an x-ray of the abdomen may be helpful to confirm the obstruction and identify where it is, but defining the goal of therapy is essential.42 When patients exhibit signs of obstruction, a physical exam may be helpful to assess the

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extent of the problem. Asking the patient for a bowel history, last bowel movement, and a description of consistency can be helpful. Does the patient complain of constipation? Physical examination should include gentle palpation of the abdomen for masses or distention. A careful rectal exam can identify the presence of stool in the rectum or a distended empty rectum. An empty, or “ballooned,” rectum may be a symptom of high obstruction. It is also difficult to distinguish stool from malignant mass.11,43 The ability to assess whether an impaction is low or high in the intestinal tract is important to help guide the intervention planning. As discussed above, lack of stool noted in the rectum during a digital exam is usually indicative of a high impaction. Stool has not or cannot move down into the rectum. The goal then would be to use careful assessment to be sure the obstruction is not a tumor and to concentrate on softening the stool and moving it through the GI tract. Again, using a stimulant laxative for this type of patient would result in increasing discomfort and possible rupture of the intestinal wall.11,40 Low impactions are uncomfortable, and patients may need more comforting measures. Patients may need to lie down to decrease pressure on the rectal area and avoid drinking hot liquids or eating big meals, which may increase peristalsis and discomfort until the impaction can be cleared.11 Multiple types of stents are available. After evaluating 600 patients who had stent placement for malignant gastric outlet obstruction (GOO), Dormann et al. found technical success with confirmaton that bowel patency occurred for 97 of patients.51 Eighty-seven  of post procedural patients were able to tolerate a full or soft solid diet. Patients were able to tolerate oral diets within 24 hours of the stent placement.33 Complications of stent placement is divided into early or late effects. Early is related to stent misdeployment or malpositioning or perforation. Late complications include: tumor growth extending through the stent into the lumen or stent migration, bleeding or perforation.46 The use of stents has been shown to be effective in relieving malignant bowel obstruction and, compared to surgery, is less invasive with faster resumption of oral intake and shorter hospital stays, which saved money. One study found that the cost for patients who had stent placement versus surgical interventions was $7,215 to $10,190 in US dollars.52 For complete obstructions, especially in an emergency situation, surgery has been necessary to decompress the bowel and frequently results in a colostomy. Laporoscopy is difficult in these patients due to the acutely dilated colon and the increased risk of complications when using laparoscopic instruments on that type of tissue.46,53 Stenting versus surgery has been found to reduce morbidity and mortality of patients who would be poor candidates for surgery. It provides a way to prevent the need for a colostomy and results in shorter hospitalizations, which reduces healthcare costs.53

Decompression Tubes Colonic decompression tubes are used to reduce acutely distended bowel to prevent perforation and prevent more invasive

surgical procedures. They can be placed by endoscopy or over a guidewire. They are inexpensive and widely available and prevent surgical intervention with colostomy. Disadvantages include success being dependent on the person placing them and the risk of dislodgment of the tubes. The size of these tubes allows for bowel cleansing or stool removal. These tubes are recommended as a temporizing measure to relieve distention and hopefully allow for bowel cleaning. More research needs to be done on the success of these larger decompression tubes.46

Symptom Therapy Providing aggressive pharmacological management of the distressing symptoms associated with MBO can prevent the need for surgical intervention.6 The symptoms of intestinal colic, vomiting, and diarrhea can be effectively controlled with medications for most patients. Depending on the location of the obstruction, either high or low, symptom severity can be affected. As accumulation of secretions increases, abdominal pain also increases. Distention, vomiting, and prolonged constipation occur. With high obstruction, onset of vomiting is sooner and amounts are larger. Intermittent borborygmi and visible peristalsis may occur.40 Patients may experience colic pain on top of continuous pain from a growing mass. In chronic bowel obstruction, colic pain subsides. There are multiple options to attempt in an effort to relieve the symptoms and obstruction of an MBO (Table 12–7). As stated above, the goal of treatment is to prevent obstruction whenever possible. The use of subcutaneous

Table 12–7 Obstruction Management Options 1. Prevent obstruction if at all possible. 2. Octreotide—may prevent complete obstruction if used early. 3. Opioids IV/SQ relieve pain. 4. Antiemetic medications—haloperidol 5–15 mg/day, Metoclopromide 10 mg Q 4 h. SQ—only if no colicky pain. 5. Corticosteroids. 6. Fluids and nutrients as tolerated. 7. Antispasmodic medications—hyoscine butylbromide 60 mg/day SQ may ↑ to 380 mg/day to relieve colicky pain. 8. Laxative Meds-stimulating laxatives. contraindicated due to ↑ peristalsis. Stool softener meds may be helpful if a single obstruction only. 9. Antidiarrheal medications—subacute obstruction or fecal fistula—codeine, loperamide, or octreotide. 10. Endoscopic therapeutic devices—Self Expandable Metal Stents (SEMS) 11. Colonic decompression tubes 12. Surgery Sources: Adapted from Frech & Adler (2007), reference 46; Helyer (2008), reference 42.

Bowel Management

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(SQ) or intravenous (IV) analgesics, anticholinergic drugs, and antiemetic drugs can be effective for reducing the symptoms of inoperable and hard-to-manage obstruction.6,38,39,45 Octreotide may be an option in early management to prevent partial obstructions from becoming complete.6,38,39,45 Although octreotide is used for diarrhea because it decreases peristalsis, it also slows the irregular and ineffective peristaltic movements of obstruction, reducing the activity and balancing out the intestinal movement.20,35 It reduces vomiting because it inhibits the secretion of gastrin, secretin, vasoactive intestinal peptide, pancreatic polypeptide, insulin, and glucagon. Octreotide directly blocks the secretion of gastric acid, pepsin, pancreatic enzyme, bicarbonate, intestinal epithelial electrolytes, and water.20,35 It has been shown to be effective in 70 of patients for the control of vomiting.6 Octreotide is administered by SQ infusion or SQ injection every 12 hours. A negative aspect of this drug is its cost. It is expensive and requires SQ injections or SQ or IV infusions over days to weeks. The recommended starting dose is 0.3 mg/day and may increase to 0.6 mg/day.6 Hyoscine butylbromide is thought to be as effective as octreotide at reducing GI secretions and motility. Hyoscine butylbromide is less sedating, since it is thought to cross the blood–brain barrier less due to its low lipid solubility.38 A recent study compared octreotide and scopolamine butylbromide for inoperable bowel obstruction with nasogastric tubes.35,38 Both medications relieve colicky pain; both reduce the continuous abdominal pain and distention. Although this was a small study done over 3 days, they were able to remove the nasogastric tube in three of the seven patients on the fi rst dose of octreotide 0.3 mg/day subcutaneously; three more patients were able to have the nasogastric tube removed when the dose was doubled to 0.6 mg/day. Scopolamine was similar in results, but the octreotide regimen was felt to be more effective overall. The negative effect is associated with the cost of the drug a defi nite consideration for overall quality of life. Scopolamine is less expensive.

antisecretory drugs, steroids and analgesics.6 Recent additions of the selective serotonin antagonists, the 5-hydroxytryptamine blockers (5-HT3) have made a significant difference in the treatment of nausea, especially when combined with corticosteroids for chemotherapy-induced nausea (see also Chapter 9).40,54 Metoclopramide at 10 mg Q 4 hours SQ, has been the drug of choice for patients with incomplete bowel obstruction without colicky pain.40 It stimulates the stomach to empty its contents into the reservoir of the bowel. Once complete obstruction is present, metoclopramide is discontinued and haloperidol or another antiemetic medication is started. Haloperidol is less sedating than other antiemetic or antihistamine medications.40 The usual dose ranges from 5 to 15 mg/day, and at some institutions, it is combined with cyclizine.6 Corticosteroids are particularly helpful antiemetics, especially when related to chemotherapy.40 In practice, it is recommended that morphine, haloperidol, and hyoscine butylbromide be given together by continuous SQ infusion. If pain or colic increases, the dose of morphine and hyoscine butylbromide should be increased; if emesis increases, increase the haloperidol dose.6,40 Fluid and nutrient intake should be maintained as tolerated. Usually, patients whose vomiting has improved will tolerate fluids with small, low-residue meals. Dry mouth is managed with ice chips, although this has been suspected to wash out saliva that is present in the mouth. The use of artificial saliva may be more beneficial.39

Analgesic Medications

Colic pain results from increased peristalsis against the resistance of a mechanical obstruction. Analgesics alone may not be effective. Hyoscine butylbromide has been used to relieve spasm-like pain and to reduce emesis.40 Dosing starts at 60 mg/day and increases up to 380 mg/day given by SQ infusion.38 Side effects are related to the anticholinergic effects, including tachycardia, dry mouth, sedation, and hypotension.40 Using methods to relieve dry mouth with sips of oral fluids, ice chips and good mouth care is important.40

Opioid medications have been used to relieve pain associated with obstruction.6 Providing the opioid through SQ or IV infusion via a patient-controlled analgesic (PCA) pump is beneficial for two reasons: patients may receive improved pain relief over the oral route due to improved absorption, and by giving access to a PCA pump, patients are allowed some control over their pain management. Alternative routes of opioid administration, such as rectal or transdermal, may also be effective, but usually are inadequate if the pain is severe or unstable or there are frequent episodes of breakthrough pain. Antiemetic Medications The goal of relief of symptoms for patients with MBO from a pharmacologic approach include the use of antiemetics,

Corticosteroid Medications. Corticosteroids have been helpful as antiemetic medications. The recommended dose of dexamethasone is between 6 and 16 mg/day; the prednisolone dose starts at 50 mg/day (injection or SQ infusion).40 Steroids increase absorption of water and salt and reduce water and electrolytes in the intestine. Antispasmodic Medications

Laxative Medications Stimulant laxatives are contraindicated due to increased peristalsis against an obstruction. Stool-softening medications may be helpful if there is only a single obstruction in the colon or rectum. If the obstruction is in the small bowel, laxatives will not be of benefit.40

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Antidiarrheal Medications Patients who experience a subacute obstruction or a fecal fistula may complain of diarrhea. Antidiarrheal medicine, such as codeine or loperamide, may be helpful. The benefit of these medications is that they may also help to relieve pain and colic. Octreotide may be helpful with bowel obstruction due to its mechanism of action. By inhibiting the release of certain secretions of the gastric, biliary, and intestine, intestinal motility decreases and absorption of water and electrolytes is increased.35,40 Helping families cope with symptoms associated with obstruction is important. Historically, the management of obstruction involved aggressive surgical intervention or symptom management alone. The initial assessment should include: (1) evaluating constipation, (2) evaluating for surgery, (3) providing pain management, and (4) managing nausea with metoclopramide. If incomplete obstruction, use dexamethasone, haloperidol, dimenhydrinate, chlorpromazine, or hyoscine butylbromide.35,38,40 The introduction of new medications, such as octreotide, as well as newer antiemetics, has made a difference in the quality of life a patient with a malignant bowel obstruction may experience. The important thing to remember is that the treatment plan must always be in agreement with the patient’s wishes. Discussing the patient’s understanding of the situation and the options available are essential to effective and thoughtful care of bowel obstruction in the palliative care patient.

o]o]o] ASCITES Ascites associated with malignancy results from a combination of impaired fluid efflux and increased fluid influx.38 The effect of the accumulation of fluids leads to symptoms of abdominal distention, pain, nausea, early satiety, dyspnea and reduced mobility.55,56 Extreme ascites can lead to vomiting caused by external pressure on the stomach or intestines.55 Ascites may be divided into three different types. Central ascites is the result of tumor-invading hepatic parenchyma, resulting in compression of the portal venous and/or the lymphatic system.57 There is a decrease in oncotic pressure as a result of limited protein intake and the catabolic state associated with cancer.57 Peripheral ascites is related to deposits of tumor cells found on the surface of the parietal or visceral peritoneum. The result is a mechanical interference with venous and/or lymphatic drainage.57 There is blockage at the level of the peritoneal space rather than the liver parenchyma. Macrophages increase capillary permeability and contribute to greater ascites. Mixed-type ascites is a combination of central and peripheral ascites. Therefore, there is both compression of the portal venous and lymphatic systems, as well as tumor cells in the peritoneum. Chylous malignant ascites occurs when tumor infiltration of the retroperitoneal space causes obstruction of lymph flow through the lymph nodes and/or the pancreas.55,57 Additional sources of ascites not related to malignancy include the following:

• Preexisting advanced liver disease with portal hypertension • Portal venous thrombosis • Congestive heart failure • Nephrotic syndrome • Pancreatitis • Tuberculosis • Hepatic venous obstruction • Bowel perforation Severe ascites is associated with poor prognosis (40 1-year survival, less than 10 3-year survival).57 The pathological mechanisms of malignant ascites make the prevention or reduction of abdominal fluid accumulation difficult.57 Invasive management of ascites is seen as appropriate whenever possible, in contrast to intestinal obstruction. Although survival is limited, the effects of ascites on the patient’s quality of life warrant an aggressive approach.57 Tumor types most associated with ascites include ovarian, endometrial, breast, colon, gastric, and pancreatic cancers.57 Less common sources of ascites include mesothelioma, nonHodgkin’s lymphoma, prostate cancer, multiple myeloma, and melanoma.57

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Assessment of Ascites Symptoms Associated with Ascites Patients complain of abdominal bloating and pain. Initially, patients complain of feeling a need for larger-waisted clothing and notice an increase in belt size or weight. They may feel nauseated and have a decreased appetite. Many patients will complain of increased symptoms of reflux or heartburn. Pronounced ascites can cause dyspnea and orthopnea due to increased pressure on the diaphragm.55–57 Physical Examination The physical examination may reveal abdominal or inguinal hernia, scrotal edema, and abdominal venous engorgement. Radiological findings show a hazy picture, with distended and separate loops of the bowel. There is a poor definition of the abdominal organs and loss of the psoas muscle shadows. Ultrasound and computed tomographic scans may also be used to diagnose ascites.57

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Management of Ascites Traditionally, treatment of ascites is palliative due to poor prognosis.54 Ovarian cancer is one of the few types where the presence of ascites does not necessarily correlate with a poor prognosis. In this case, survival rate can be improved through surgical intervention and adjuvant therapy.57,58

Bowel Management

Medical Therapy Advanced liver disease is associated with central ascites. There is an increase in renal sodium and water retention. Therefore, restricting sodium intake to 100 mmol/day or less along with fluid restriction for patients with moderate to severe hyponatremia (125 mmol/L) may be beneficial. Using potassiumsparing diuretics is also important. Spironolactone (100 to 400 mg/day) is the drug of choice.57 Furosemide is also helpful at 40 to 80 mg/day to initiate diuresis. Over-diuresis must be avoided. Over-diuresis may precipitate electrolyte imbalance, hepatic encephalopathy, and pre-renal failure. The above regimen of fluid and sodium reduction and diuretics may work for mixed-type ascites, which results from compression of vessels related to tumor and peripheral tumor cells of the parietal or visceral peritoneum as well. Because mixed-type ascites is associated with chylous fluid, adding changes to the diet, such as decreased fat intake and increased mediumchain triglycerides, may be important. Chylous ascites results from tumor infi ltration of the retroperitoneal space, causing obstruction of lymphatic flow.57 Medium-chain triglyceride oil (Lipisorb) can be used as a calorie source in these patients. Because the lymph system is bypassed, the shorter fatty acid chains are easier to digest. For patients with refractory ascites and a shortened life expectancy, paracentesis may be the most appropriate therapy.50,52 Paracentesis is the most common and effective treatment to relieve ascites.55,56 It is recommended that a maximum of 5 liters of ascites fluid be taken off.56 Although this procedure gives temporary relief of symptoms like the treatment of MBO, palliative care decisions should be based on the goals of care and patients quality of life. New advances in paracentesis treatment options have improved long-term use to minimize the need for frequent trips to the hospital for the procedure and repeated painful needle sticks.55,56

Paracentesis Catheters Peritoneovenous shunts (PVS) (Denver or LeVeen shunt) are helpful for the removal of ascites in 75 to 85 of patients.57 These shunts are used primarily for nonmalignant ascites. The shunt removes fluid from the site, and the fluid is shunted up into the internal jugular vein.57 This type of shunt has the advantage of avoiding an external drainage device and can be placed with minimal invasive techniques under conscious sedation. The disadvantages are that they have a high rate of failure related to occlusion and have been associated with pulmonary edema, thrombosis of major veins, seroma formation, leaks and disseminated intravascular coagulation (DIC).55 Pigtail Catheter Pigtail drainage catheters are used for percutaneous abscess drainage as well as pleural eff usions and percutaneous biliary and renal drainage.55 They are placed under ultrasound

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or fluoroscopic guidance and can be intermittently drained to gravity or vacuum bottles. This can be done as an outpatient procedure.55 Dialysis Catheters Silastic peritoneal dialysis catheters re providing effective management of malignant ascites.55,59 They also can be managed at home easily and can be on gravity drainage or vacuum bottle drainage as needed. Pleurex Catheter (Denver Biomedical, Denver, Colorado) This is a single-cuff tunneled Silastic catheter approved for the drainage of malignant plural eff usions and malignant ascites. It offers a one-way valve instead of a clamp and can be managed in the home as well.55 The management of all of these types of catheters requires careful handling and techniques to prevent infections. Peritonitis, cellulitis and catheter occlusion are risks.55

Nursing Management Ascites management involves initially understanding the mechanism, then using interventions appropriately. The reality of recurring ascites requiring repeated paracentesis is present. Acknowledging the risk/benefit ratio of repeated paracentesis is essential, especially in palliative care. The placement of an indwelling catheter can reduce the need for multiple needle sticks and improve patient quality of life.55 Nurses need to remember good supportive care in addition to other resources. These include skin care, to help prevent breakdown, and comfort interventions, such as pillow support, and loose clothing whenever possible. Educating the patient and caregivers on the rationale behind fluid and sodium restrictions when necessary can help their understanding and compliance. The cycle of a patient who feels thirsty, receives IV fluids, and has more discomfort is difficult for the patient to understand. Careful explanations about why an intervention is or is not recommended can go a long way toward improving the quality of life for these patients.

References 1. Sykes NP. The pathogenesis of constipation. J Support Oncol 2006;4(5):213–224. 2. McMillan SC. Assessing and managing narcotic induced constipation in adults with cancer. Cancer Control 1999; 6:198–204. 3. Thomas J. Opioid-induced bowel dysfunction. J Pain Symptom Manage 2008;35(1):103–113. 4. Massey RL, Haylock PJ, Curtiss C. Constipation. In: Yarbro MHFCH, Goodman M, eds. Cancer Symptom Management. Boston: Jones and Bartlett, 2004:512–527. 5. Levy MH. Constipation and diarrhea in cancer patients. Cancer Bull 1991;43:412–422.

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6. Sykes NP. Constipation and diarrhoea. In: Doyle GWCHD, Cherny N, Calman K, eds. Oxford Textbook of Palliative Medicine. Oxford University Press, 2004:483–496. 7. Thomas JR, Cooney G. Palliative care and pain: New strategies for managing opioid bowel dysfunction. J Palliat Med 2008;11(Suppl 1):S1–S19. 8. Woolery M, Bisanz A Lyons HF, Gaido L, Yenulevich M, Fulton S, McMillan SC. Putting evidence into practice: Evidence-based interventions for the prevention and management of constipation in patients with cancer. Clin J Oncol Nurs 2008;12:317–332. 9. Bruera E, Fadul N. Constipation and diarrhea. In: Bruera IJHE, Ripamonti C, Von Gunten C, eds. Textbook of Palliative Medicine. New York: Oxford University Press, Inc., 2006:554–570. 10. Martin BC, Barghout V, Cerulli A. Direct medical costs of constipation in the United States. Manag Care Interface 2006;19(12):43–49. 11. Bisanz A. Bowel management in patients with cancer. In: Ajani JA, ed. Gastrointestional Cancer. New York: Springer, 2005:313–345. 12. Davison D. Constipation. Clin J Oncol Nurs 2006;10(1):112–113. 13. Sykes NP. The relationship between opioid use and laxative use in terminally ill cancer patients. Palliat Med 1998;12:375–382. 14. Panchal SJ, Muller–Schwefe P, Wurzelmann JI. Opioid-induced bowel dysfunction: Prevalence, pathophysiology and burden. Int J Clin Pract 2007;61:1181–1187. 15. National Comprehensive Cancer Network (NCCN). Clinical Practice Guidelines in Oncology–Palliative Care V.1.2008. Constipation management recommendations. NCCN.org (accessed October 23, 2009). 16. Radbruch L, Sabatowski R, Loick G, Kolbe C, Kasper M, Grond S, Lehmann KA. Constipation and the use of laxatives: A comparison between TDF & oral morphine. Palliat Med 2000;13:159–160. 17. Adler HF, Atkinson AJ, Ivy AC. Effect of morphine and Dilaudid on the ileum and of morphine, Dilaudid and atropine on the colon of man. Arch Intern Med 1942;69:974–985. 18. McMillan SC, Williams FA. Validity and reliability of the constipation assessment scale. Cancer Nurs 1989;12:183–188. 19. AHCPR, Management of Cancer Pain guidelines. Vol. Pub. # 94–0592. 1994, Washington DC: AHCPR. 20. Stern J, Ippoliti C. Management of acute cancer treatment-induced diarrhea. Semin Oncol Nurs 2003;19(4):11–16. 21. Sykes NP. An investigation of the ability of oral naloxone to correct opioid-related constipation in patients with advanced cancer. Palliat Med 1996;10:135–144. 22. Lederle FA, Busch DL, Mattox KM, West MJ, Aske DM. Costeffective treatment of constipation in the elderly: A randomized double-blind comparison of sorbitol and lactulose. Am J Med 1990;89:597–601. 23. Larkin PJ, Sykes NP, Centeno C, Ellershaw JE, Elsner F, Eugene B, Gootjes JRG, Nabal M, Noguera A, Ripamonti C, Zucco F, Zuurmond WWA. The management of constipation in palliative care: Clinical practice recommendations. Palliat Med 2008;22:796–807. 24. Galligan JJ, Vanner S. Basic and clinical pharmacology of new motility promoting agents. Neurogastroenterol Motil 2005;17:643–653. 25. Ripamonti C, Mercadante S. Pathophysiology and management of malignant bowel obstruction. In: Doyle GWCHD, Cherny

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N, Calman K, eds. Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, 2004:496–507. Culpepper-Morgan JA, Inturrisi CE, Portenoy RK. Treatment of opioid-induced constipation with oral naloxone: A pilot study. Clin Pharmacol Ther 1992;52:90–95. Liu M, Wittbrodt E. Low-dose oral naloxone reverses opioid induced constipation and analgesia. J Pain Symptom Manage 2002;23:48–53. Thomas J, Karver S, Cooney GA, Chamberlain BH, Watt CK, Slatkin NE, Stambler N, Kremer AB, Israel RJ. Methylnaltrexone for opioid-induced constipation in advanced illness. N Engl J Med 2008;358:2332–2343. Viele CS. Overview of chemotherapy-induced diarrhea. Semin Oncol Nurs 2003;19(Suppl 3):2–5. Engelking C. Diarrhea. In: Yarbro MHFCH, Goodman M, eds. Cancer Symptom Management. Boston: Jones and Bartlett, 2004:528–557. Anastasi JK, Capili B. HIV-related diarrhea and outcome measures. J Assoc Nurses AIDS Care 2001;12(suppl):44–50. Jacobsohn DA, Vogelsang GB. Acute graft versus host disease. Orphanet J Rare Diseases 2007;2(35). Gwede CK. Overview of radiation and chemoradiationinduced diarrhea. Semin Oncol Nurs 2003;19(suppl3):11–16. Weihofen DL, Marino C. Cancer Survival Cookbook. Los Angeles: John Wiley & Sons, 1998:28. Holt AP, Patel M, Ahmed MM. Palliation of patients with malignant gastroduodenal obstruction with self-expanding metallic stents: The treatment of choice? Gastrointest Endosc 2004;60(6):1010–1017. Prommer EE. Established and potential therapeutic applications of octreotide in palliative care. Support Care Cancer 2008;16:1117–1123. Massacesi C, Galeazzi G. Sustained release octreotide may have a role in the treatment of malignant bowel obstruction. Palliat Med 2006;20:715–716. Lowell A. New strategies for the prevention and reduction of cancer-treatment induced diarrhea. Semin Oncol Nurs 2003;19(Suppl 3):17–21. Ripamonti C, Mercadante S, Groff L, Zecca E, DeConno F, Casuccio A. Role of octreotide, scopolamine butylbromide, and hydration in symptom control of patients with inoperable bowel obstruction and nasogastric tubes: A prospective randomization trial. J Pain Symptom Manage 2000;19:23–34. Beckman R, Siden R, Yanik GA, Levine JE. Continuous Octreotide infusion for the treatment of secretory diarrhea caused by acute intestinal graft-versus-host disease in a child. J Pediatr Hematol 2000;22(4):344–350. Krouse RS. Surgical palliation of bowel obstruction. Gastroenterol Clin North Am 2006;35(1):143–151. Helyer L, Easson AM. Surgical approaches to malignant bowel obstruction. J Support Oncol 2008;6(3):105–113. Ripamonti CI, Malignant bowel obstruction: Tailoring treatment to individual patients. J Support Oncol 2008;6(3):114–115. Krouse RS. Surgical management of malignant bowel obstruction. Surg Oncol Clin N Am 2004;13:479–490. Anthony T, Baron T, Mercadante S. Report of the clinical protocol committee: Development of randomized trials for malignant bowel obstruction. J Pain Symptom Manage 2007;34(1 Suppl):S49–S59. Frech EJ, Adler DG. Endoscopic therapy for malignant bowel obstruction. J Support Oncol 2007;5(7):303–310,319.

Bowel Management 47. Krouse RS. The value of a systematic approach to malignant bowel obstruction. J Support Oncol 2008;6:116–117. 48. Targownik LE, Spiegel BM, Sack J, Hines OJ, Dulai G, Grainek IM, Farrell JJ. Colonic stent vs. emergency surgery for management of acute left-sided malignant colonic obstruction: A decision analysis. Gastrointest Endosc 2004;60(6): 865–872. 49. Siddiqui A, Spechler SJ, Huerta S. Surgical bypass versus endoscopic stenting for malignant gastroduodenal obstruction: A decision analysis. Dig Dis Sci 2007;52:276–281. 50. Ozkan O, Akinci D, Gocmen R, Cil B, Ozmen M, Akhan O. Percutaneous placement of peritoneal port–catheter in patients with malignant ascites. Cardiovasc Intervent Radiol 2007;30:232–236. 51. Dormann A, Meisner S, Verin N, Wenk Lang A. Self-expanding metal stents for gastroduodenal malignancies: Systematic review of their clinical effectiveness. Endoscopy 2004;36:543–550. 52. Johnsson E, Thune A, Liedman B. Palliation of malignant gastroduodenal obstruction with open surgical bypass or endoscopic stenting: Clinical outcome and health economic evaluation. World J Surg 2004;28:812–817. 53. Osman HS, Rashid HI, Sathananthan N, Parker MC. The cost effectiveness of self-expanding metal stents in the management

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of malignant left-sided large bowel obstruction. Colorectal Dis 2000;2:233–237. Mannix KA. Gastrointestinal symptoms—palliation of nausea and vomiting. In: Doyle GWCHD, Cherny N, Calman K, eds. Oxford Textbook of Palliative Medicine. New York: Oxford University Press, 2004:459–468. Rosenberg SM. Palliation of malignant ascites. Gastroenterol Clin North Am 2006;35(1):189–199. Becker G, Galandi D, Blum HE. Malignant ascites: Systematic review and guideline for treatment. Eur J Cancer 2006;42:589–597. Kichian K, Bain VG, Jaundice, ascites, and hepatic encephalopathy. In: Doyle GWCHD, Cherny N, Calman K, eds. Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, 2004:507–520. Numnum TM, Rocconi RP, Whitworth J, Barnes MN. The use of bevacizumab to palliate symptomatic ascites in patients with refractory ovarian carcinoma. Gynecol Oncol 2006;102:425–428. Rosenberg S, Courtney A, Nemcek AA Jr, Omary RA. Comparison of percutaneous management techniques for recurrent malignant ascites. J Vasc Interv Radiol 2004;15: 1129–1131.


13o]

Michelle Schaffner Gabriel, Pamela Kedziera, and Nessa Coyle

Hydration, Thirst, and Nutrition I just don’t feel like eating anything. I have no appetite and nothing tastes good anymore. —A dying patient

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Key Points The last year of life for someone with a progressive debilitating disease is frequently associated with multiple distressing symptoms, comorbidities, and loss of independent function. Difficulties with eating and drinking are common during this period. Decisions regarding hydration and nutrition are confronted by patients, families, and staff at this time. Discussions regarding artificial hydration and nutrition are frequently couched in terms of ethics, religious beliefs, and strongly held personal views. Nurses need to know their state laws concerning provision of artificial hydration and nutrition in the dying patient. Decisions regarding hydration and nutrition at end of life are guided by goals of care, benefit versus burden, and the wishes of the patient and family. Patients have the right to refuse hydration and nutrition, whether parenteral or oral.

There is lack of consensus in society and among experts as to whether it is physically, psychologically, socially, or ethically appropriate to provide artificial hydration and nutrition to a terminally ill person. Do these therapies improve the way an individual feels physically and emotionally? Do they cause harm? Can an individual die comfortably without these interventions? Decisions on whether to provide artificial hydration and nutrition are made taking into consideration a person’s wishes, which are often based on cultural, religious, and personal values, and on the basis of whether the intervention will make the patient more comfortable. These elements are illustrated in the following two case reports.

9= CASE STUDY Two Patients Receiving Artificial Hydration and Nutrition Mrs. M was a 79-year-old woman with metastatic breast cancer. She was a Chinese immigrant, who had moved to the United States to be with her children after her husband passed away. Her family had brought her to the hospital with mental status changes. She was diagnosed with aspiration pneumonia. Although she was cachectic and hadn’t been able to tolerate much food according to her family, they insisted upon her receiving hydration and enteral feedings via a nasogastric (NG) tube. The translator who participated in the discussions shared with the team that many Chinese will insist upon artificial hydration and nutrition even if there are risks because of their belief in ensuring they or their loved one has enough food and fluid for their journey in the afterlife. Mrs. M died two days later, receiving both hydration and enteral feedings at 25 mL/h. In a different situation, Mr. Y was a 45-year-old man who had suffered from complications following neurosurgery for the removal of a benign tumor. After months of being in the intermediate intensive care unit, on a ventilator and receiving enteral feedings, the neurologists had determined 291

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that Mr. Y was in a persistent vegetative state, and no longer able to have meaningful interactions. Mr. Y had completed an advance directive, which revealed his wishes not to be kept alive should he have no chance of a meaningful recovery. He defined this as being able to live independently outside of a skilled nursing facility. After much deliberation, his family decided to wean him off the ventilator, and he was transferred to an inpatient hospice unit. Discussions with the hospice team continued about whether to stop his enteral feedings. His family decided to discontinue the feedings, as they felt that this intervention was contrary to Mr. Y’s expressed wishes. He died one week later with his family present. o] The meaning of food and water, and the meaning of discontinuing food and water, need careful exploration and ongoing discussion of the benefits and burden for each individual, taking into consideration his or her cultural and religious beliefs. There are no absolutes. Nurses have reported that patients knowingly refuse food and fluids to hasten death.1 The following pages provide basic information on hydration and nutrition as a framework for the nurse when guiding a patient and family who are considering the benefits and burdens of artificial hydration and nutrition in the setting of advanced, progressive disease. In addition, the following questions are explored: What are the current practices with regard to managing hydration at the end of life, and how are these clinical strategies justified? How is dehydration clinically recognized? Should dehydration at end of life be treated, and if so, how?

o]o]o] HYDRATION Water is an essential component of the human body. Complex cellular functions, such as protein synthesis and metabolism of nutrients, are affected by hydration status. The maintenance of hydration depends on a balance between intake and output, which is regulated by neuroendocrine influences. Homeostasis is maintained through parallel neuroendocrine activity on excretion of fluid via the kidneys2 and on intake via thirst. Increased osmotic pressure is the prime stimulus for thirst, stimulating the release of vasopressin. Renal excretion is mainly dependent on the action of vasopressin, which is secreted by the posterior pituitary gland. This hormone, known as antidiuretic hormone (ADH), increases water reabsorption in the collecting ducts of the kidneys.3 Thirst stimuli include hypertonicity; depletion of the extracellular fluid compartment arising from vomiting, diarrhea, or hemorrhage; and renal failure, in which plasma sodium is low but plasma renin levels are high.4

Dehydration Dehydration is a loss of normal body water. There are several types of dehydration.3,5 Isotonic dehydration results from a balanced loss of water and sodium. This occurs during a complete fast and during episodes of vomiting and diarrhea

with the loss of water and electrolytes in the gastric contents. Billings6 theorized that terminally ill individuals have this type of balanced decrease in food and fluid intake, causing eunatremic dehydration (sodium levels in normal range) because of the simultaneous loss of salt and water. Hypertonic dehydration occurs if water losses are greater than sodium losses. Fever can cause this problem, by loss of water through the lungs and skin and a limited ability to take in oral fluids. Hypotonic dehydration occurs when sodium loss exceeds water loss. This typically occurs when water is consumed but food is not. Overuse of diuretics is a major factor. Osmotic diuresis (e.g., from hyperglycemia), salt-wasting renal conditions, third spacing (ascites), and adrenal insufficiency are other common causes of sodium loss.7 The methodology for assessing dehydration has not been well studied and tends to vary among practitioners. The clinical sensitivity of each method has not been determined. Clinical assessment should include mental status changes, thirst, oral/ parenteral intake, urine output, and fluid loss. Physical findings, such as weight loss, dry mouth, dry tongue, reduced skin turgor, and postural hypotension should be noted. Laboratory test findings, including increased hematocrit, elevated serum sodium concentration, azotemia with a disproportionate rise in blood urea nitrogen in relation to creatinine, concentrated urine, and hyperosmolarity, are indicative of dehydration. Physical fi ndings (Table 13–1) are complicated to evaluate.7 Comorbid conditions can be the cause of many of these symptoms in the chronically or terminally ill individual. Skin turgor, for example, can be hard to evaluate in the cachexic individual and is unreliable. Obtaining weights may be impractical, but rapid weight loss of greater than 3 is indicative of dehydration.5 Postural hypotension can be related to medications and cardiac pathology. Discomfort, especially problems with xerostomia and thirst, may result from dehydration,8 although there can be other causes as well. Dry mouth can be associated with mouth breathing or anticholinergic medication. Th irst may be absent or mild in patients with hyponatremic dehydration, although marked volume loss may stimulate ADH and water craving. There is evidence that elderly individuals do not perceive thirst in the same manner as healthy young adults.4 In a study comparing the role of thirst sensation and drinking behavior in young versus older men, water was restricted for 24 hours. Only the young, healthy study group reported a dry, unpleasant mouth and a general sense of thirst; the healthy elders had a deficit in the awareness of thirst despite plasma osmolarity and sodium and vasopressin concentrations that were greater than those in the younger group. During the rehydration period, the younger group consumed enough fluid to correct their laboratory values. Elder subjects did not consume enough fluid to correct the laboratory values.9 There is not, however, any evidence to support this observation in terminally ill patients. In hypernatremia, thirst is a powerful stimulus, and persons with access to water usually will take in sufficient amounts of fluid. Confused or somnolent individuals and those who are unable to drink are at risk because water losses may not be adequately replaced. Dehydrated,

Hydration, Thirst, and Nutrition

Table 13–1 Signs and Symptoms of Dehydration

Table 13–2 The Hydration Debate

Hyponatremic Dehydration

Arguments for hydration Provides a basic human need. Provides comfort and prevents uncomfortable symptoms: confusion, agitation, and neuromuscular irritability. Prevents complications (eg, neurotoxicity with high-dose narcotics). Relieves thirst, recognized as a sign of fluid needs. Does not prolong life to any meaningful degree. Allows providers to continue their efforts to find ways to improve comfort and life quality, despite the perception of a poor quality of life. Provides minimum standards of care; not doing so would break a bond with the patient. May set a precedent to withhold therapies from other patients who are compromised.

Hypernatremic Isotonic Dehydration Dehydration

Volume depletion Thirst Anorexia, taste alteration, Fatigue and weight loss

Morose Aggression

Nausea and vomiting

Demoralized

Diminished skin turgor Dry mucous membranes Reduced sweat Orthostatic hypotension Lethargy and restlessness Delirium Seizures (related to cerebral edema) Confusion, stupor and coma Psychosis (rare) Laboratory Results Azotemia

Muscle weakness Mental status changes Fever

Increased sodium

Apathetic Uncoordinated

Minor or no abnormalities

Disproportionate blood urea nitrogen compared to creatinine Hyponatremia Hemoconcentration Urine osmolarity with sodium concentration

terminally ill patients usually present with mixed disorders of fluid and salt loss. Some palliative care clinicians suggest that dehydration at the end of life causes suffering in some patients, which should be relieved. This suffering may include thirst, dry mouth, fatigue, nausea, vomiting, confusion, muscle cramps, and perhaps the hastening of death.10,11 Dehydration has been associated with an increased risk of bedsores and constipation, particularly in the elderly. Dehydration causes confusion and restlessness in patients with non-terminal disease. These same symptoms are frequently reported in terminally ill persons and could be aggravated by dehydration.12 Dehydration as a cause of renal failure has been well documented.13,14 Opioid metabolite accumulation can result from renal failure and cause confusion and myoclonus.15 A study of terminally ill cancer patients, however, showed that the group receiving intravenous fluids at a rate of 1 to 2 L/day consistently had more abnormal laboratory values of serum sodium, urea, and osmolarity than the group who were not hydrated.16 In a separate study of terminally ill cancer patients, the group receiving intravenous fluids at a rate of 1 L/

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Arguments against hydration Interferes with acceptance of the terminal condition. Intravenous therapy is painful and Intrusive. Prolongs suffering and the dying process. Unnecessary since unconscious patients do not experience uncomfortable symptoms, such as pain or thirst. Less urine output means less need for bed pan, urinal, commode, or catheter. Less fluid in the GI tract and less vomiting. Less pulmonary secretions and less cough, choking, and congestion. Minimizes edema and ascites. Ketones and other metabolic by-products in dehydration act as natural anesthetics for the central nervous system, causing decreased levels of consciousness and decreased suffering. Source: Dalal & Bruera, reference 19.

day had significantly lower albumin levels 1 week prior to death (p = 0.005), and no effects on blood urea nitrogen/creatinine, sodium or potassium levels.17 Dehydration may improve physical caregiving for some patients. For example, urinary catheters may be avoided if the frequency of urination decreases. With dehydration, there is less gastrointestinal fluid, with fewer bouts of vomiting, and a reduction in pulmonary secretions, with less coughing, choking, and need for suctioning.18 Table 13–2 shows the arguments for and against hydration.19

Additional Research on Hydration Many researchers have looked at the effects of hydration on general symptom control as well as on specific symptoms such as thirst and dry mouth, cognitive symptoms and mental status. One study that looked at the differences between a group of patients who decided against artificial nutrition and hydration (ANH) versus a group in which other endof-life decisions were made found that in the former group,

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patients as a whole received fewer drugs to relieve symptoms at end of life.20 Although the study did not separate out artificial hydration from nutrition, patients at the end of life who received neither artificial hydration or nutrition died of dehydration, not starvation.21 A study of 82 patients in the last 2 days before death showed no statistically significant relationship between the level of hydration, respiratory tract secretions, dry mouth, and thirst.22 The researchers concluded that artificial hydration to alleviate these symptoms may be futile. These results contrast with those of a study of 100 palliative care patients receiving hypodermoclysis (infusion of fluids into the subcutaneous space); researchers concluded that this therapy was useful for achieving better symptom control.23 Another randomized, comparative and prospective trial looked at hydration and its effect on thirst in cancer patients and found no longstanding effect on this symptom.24 Some experts suggest that hydration may relieve symptoms other than thirst, such as confusion, restlessness, myoclonus, sedation, and nausea.25 An anecdotal study of three patients being hydrated by hypodermoclysis reported that hydration may have contributed to improved cognitive function and allowed patients to deal with end-of-life issues.26 Another study found that hydration with low volumes (1 L/day), along with frequent cognitive monitoring and opioid rotation, correlated with a reduction in prevalence of agitated delirium in cancer patients; however, a study that tried to replicate the results did not arrive at the same finding.27,28 Yet another study24 looked at the impact of hydration on delirium and did not find any preventive effects on this symptom by hydration. In a randomized, controlled, double-blind study evaluating the effects of hydration on several target symptoms, the researchers found that the group who received hydration had a significant improvement on myoclonus and sedation compared to the group who did not receive hydration.29 In the previously mentioned study,24 the researchers found that out of the three symptoms evaluated for an effect from hydration, chronic nausea was the only one that had significant improvement. Other experts who have looked at dehydration-related suffering have stressed the role of inappropriate medical interventions that cause their own problems. They contend that hydrating a patient can be associated with repetitive needlesticks, decreased mobility, increased secretions, increased edema, and possibly congestive heart failure.30,31 It is also suggested that improving the cognition of a dying patient with pain may make the patient more aware of the pain, with the possiblity of decreasing cognition once more through increased opioid requirements. Others state that comatose patients feel no symptoms; fluids may prolong dying, and dehydration may act as an anesthetic.13 In a descriptive study of symptoms of dehydration in the terminally ill, no association was found between fluid intake, serum sodium, osmolality, blood urea nitrogen, and symptom severity.10 A study looking at the effects of hydration on laboratory fi ndings found an association between hydration and hypoalbuminemia, with no beneficial effects

on correcting abnormal values of blood urea nitrogen/creatinine, sodium, or potassium levels.17 A survey of Swiss physicians found that there was no consensus with respect to the assessment of “suffering” from dehydration or thirst. The physicians who chose artificial hydration were more likely to perceive suffering and thirst as serious problems. Two thirds of the doctors did not believe that artificial hydration was the best way to respond to terminal dehydration.32 In addition to surveys of providers’ beliefs about the benefits and burdens of hydration, researchers have looked at the beliefs of patients and family members as well. One study found that in the group receiving the placebo (100 mL of hydration/day versus 1000 mL/day), 50 of patients thought the treatment to be successful.29 Another survey of 54 patients admitted to an acute pain relief and palliative care unit and their caregivers found that the majority felt parenteral hydration to be useful, provided some nutrition, improved their clinical condition, was useful psychologically, and carried an acceptable burden.33 Specific to the method of administration, patients and their caregivers favored the intravenous route versus the subcutaneous route. The decision to use artificial means of hydration comes more from tradition than from science. To avoid unnecessary interventions in the course of the dying process, some practitioners have avoided artificial fluid replacement secondary to its perceived negative effects. Their conclusion—that artificial hydration may cause harm to some dying patients—keeps them from offering this therapy. Palliative care clinicians have noted that some individuals are more comfortable without artificial fluids, which may prolong the dying process, whereas others are more comfortable when artificial hydration is used. Emotional issues are often the driving force in the decision to provide or withdraw artificial hydration. The need to provide fluids may be directed by very strong cultural, religious, and/or moral convictions on the part of patients, families, and some caregivers, even if there is no certainty that the therapy relieves discomfort.

Screening for Dehydration, Management, and Assessing the Effects of Interventions Screening for dehydration in the palliative care setting may include recording intake and output, examining skin turgor and mucous membranes, and monitoring mental status and blood pressure. Subjective reports of fatigue, muscle weakness, anorexia, and taste alteration are correlated with these signs and laboratory values (see Table 13–1). The benefits and possible adverse effects of hydration should be discussed within a broad framework of goals of care and the wishes of the patient and family explored within that framework. Each situation has unique aspects that affect choices and the possible outcomes of therapy. Finally, there is a need for regular reassessment to allow for changes in therapy and frequent discussions with patients and families to provide opportunities to reevaluate decisions. The treatment of dehydration starts with a review of medications and elimination, if possible, of any agents

Hydration, Thirst, and Nutrition (e.g. diuretics) that may be contributing to the dehydration. Mouth care should be provided regularly. Treating dehydration with fluids may include various routes of administration. A standard goal for fluid intake is 1500 to 3000 mL, or 8 to 10 glasses, of water daily.7 The least invasive approach to replacing fluids is to offer liquid orally at regular intervals. For those able to swallow, this approach can help the patient as well as promote the emotional well-being of the caregivers. Those who are very weak, depressed, confused, agitated, or demented may need significant assistance in getting the fluids in on a regular basis. The benefit/burden ratio for the patient in aggressively pursuing such a fluid intake approach must be carefully weighed. Care must be taken to avoid overhydration by a well-meaning but misdirected aggressive approach, and the patient should be monitored for new orthopnea, shortness of breath, increased emotional distress, or change in mental status. If the ability to swallow is diminished, there is a risk of aspiration that can cause more distress to the patient. Small, frequent sips of fluid or ice chips can be provided. Choice of fluids should be patient driven. Some individuals find sports replacement fluids a good choice because they are easily absorbed by the stomach and can correct hypertonic dehydration.5 Use of a fine mist spray can also help to keep mucous membranes moist.34 Hot, humid weather conditions can add to the risk of dehydration, so the use of air conditioning and fans should be considered.

Alternative Routes of Hydration When the Oral Route Is No Longer Reliable If there are days or weeks of life expected, and if it is appropriate to the goals of care and wishes of the patient and family, a more reliable route of fluid replacement than the oral route may be chosen. Rehydration by proctoclysis is relatively riskfree and less expensive than parenteral means of administration.35 Through a NG tube placed rectally, tap water or saline is instilled, starting at about 100 mL/h. If there is no discomfort, leakage, or tenesmus (spasm of the anal sphincter), the rate can be increased to 400 mL/h. One liter of fluid can be instilled over 6 to 8 hours. Care must be taken, however, not to overhydrate. Side effects of this route of hydration can include pain, edema, rectal leakage of fluid, and pain during insertion of the tube. Researchers report that although proctoclysis is effective, safe, and economical, most patients prefer hypodermoclysis.35 It is possible to foresee cultural and social reluctance to accept the rectal mode of fluid administration. In an inpatient setting, clinical staff would administer the fluids, but in a home setting, it may be impractical to use professional staff daily for this treatment. Family caregivers or patients may be uncomfortable with relatives or friends having to assume this type of care. Standard methods for replacement of fluids can be achieved by the use of enteral feeding tubes and by parenteral methods, such as subcutaneous or intravenous infusion. A feeding tube placed through the nose is often uncomfortable

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Table 13–3 Potential Complications of Routes for Artificial Hydration IV Peripheral

IV Central

SC Hypodermuclysis

Pain Short duration of access Infection Phlebitis

Sepsis Hemothorax

Pain Infection

Pneumothorax Central vein thrombosis Catheter fragment thrombosis Air embolus Brachial plexus injury Arterial laceration

Th ird spacing Tissue sloughing Local bleeding

IV, intravenous; SC, subcutaneous.

and may agitate the confused individual. Patients often extubate themselves when agitated. Endoscopic gastrostomy tubes have become more popular but are usually placed for decompression or feeding rather than for fluid replacement. If the individual has a feeding tube or a permanent intravenous access device (port or peripherally inserted central catheter), these may be used safely without any added burden for the patient. Placement of these devices, however, needs to be considered in the context of the overall goals of therapy. Hypodermoclysis (subcutaneous fluid administration) does not require special access devices. This method has the advantage over the intravenous route in people who have poor venous access. Use of this method may prevent transfer to an acute setting for line placement. Hypodermoclysis can also be initiated in the patient’s home. It does not require monitoring for clotting in the line, and there is no fear of letting the line “run dry.” There can be local irritation at the site of infusion, however, as well as minor bleeding. Sloughing of tissue is possible with overinfusion, and abscess formation may occur (Table 13–3). Hypotonic or isotonic solutions, with or without hyaluronidase or corticosteroids, are administered through needles inserted into the subcutaneous tissue of the abdomen or anterior or lateral thigh. Most individuals can tolerate 100 mL/h or more. Up to 1500 mL can be administered into a single site.9,36 The following case report illustrates the use of hypodermoclysis.

9= CASE STUDY Mr. P, A 73-Year-Old Man with Prostate Cancer Mr. P was a 73-year-old man who was admitted for endof-life care to an inpatient hospice unit. When he was first admitted, he was alert and oriented, although fatigued. He had been declining at home, and the level of care he

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required was more than his wife could provide. During his admission, he developed delirium. His family requested that hydration be attempted to see if it could improve his cognitive status. The nurse inserted a subcutaneous needle into his anterior thigh in order to administer fluids by hypodermoclysis. He received 1 L/day of fluid, and within 24 hours had improved in his cognitive status with no more indicators of delirium, although he continued to experience fatigue. He died peacefully two days later. o] Replacement of fluids by the intravenous route is more technically complicated, and access to a competent vein must be available. Some patients have permanent-access devices, placed for therapy earlier in their treatment, that are more than adequate for this type of administration. Others may wish to have a device placed. Use of a regular intravenous line for ongoing hydration at home can be hard to maintain; if ongoing parenteral fluids are required, placement of a central catheter or peripherally inserted central catheter (PICC) line is the norm in these situations. Small, portable pumps to regulate fluid flow are available for hydration of a patient in the inpatient or home setting. Some individuals choose to run fluids via the permanent-access devices only at night. This allows for more mobility during the daylight hours. There needs to be a competent caregiver to monitor the therapy, and because caregivers have many duties and responsibilties, this can be overwhelming to some. Consensus on the appropriate volume or type of fluid replacement does not exist. Clinicians make choices based on their previous experience and knowledge of the patient’s condition and wishes. Some practitioners allow the individual to have 1 L/day despite the fact that it is inadequate replacement. Considerations also include safety and reality of the care burden on all caregivers. Providing 1 L of fluid per day may only partially correct the patient’s deficits, but it may relieve the emotional burden of needing to provide fluids. Administration of 1 L/day can often be worked into the patient’s and family’s schedule better. If fluids are given only at night, the patient may be more mobile during the day. Fluid administration can be scheduled to accommodate the goals of living. More aggressive fluid replacement often requires monitoring of serum electrolytes and blood counts by regular laboratory testing. This type of approach requires monitoring of laboratory results and making adjustments every 24 to 48 hours. Patients and family members can be taught to manage hydration techniques at home. An assessment of their concerns should precede the instruction about the actual procedures. Adequate time must be allowed for education and return demonstration. Backup support should be provided, and repetitive sessions may be required. If possible, direct instruction to more than one caregiver should be provided to allow them to help each other with the tasks required. Printed materials that are age and reading level appropriate should be given. In addition, video instructions can be helpful, if they

are available. Follow-up visits or calls should be scheduled to assess level of functioning, to give support, and to reinforce teaching. These therapies may mean more home visits to accommodate those who learn more slowly or are not able to master all or part of the procedure. Specific protocols vary among institutions and agencies; however, written policies and procedures should guide practice.

Dry Mouth and Thirst Other symptoms related to dehydration can be assessed and treated. In one study that looked at the impact of interventions besides hydration on the symptoms of dry mouth and thirst, the researchers found that routine care, defined as offering food and fluids, administering ice chips, and providing mouth care, helped to alleviate these symptoms.18 Dry mouth is treated with an intensive, every-2-hour schedule of mouth care, including hygiene, lip lubrication, and ice chips or popsicles. Elimination of medications that cause dry mouth, such as tricyclic antidepressants and antihistamines, should be considered. Usually, however, the drugs that contribute to these symptoms are being administered to palliate other symptoms. Mouth breathing can also cause dry mouth. Candida infection, a frequent cause of dry mouth in the debilitated individual, can be treated. Agents such as pilocarpine (Salagen) can be used to increase salivation.

o]o]o] NUTRITION To observe an anorexic, fatigued, wasted, and debilitated patient is disheartening for the family. Food is more than nutrition; it plays an important role in maintaining hope. For those who are able to enjoy eating, every opportunity to offer nourishment should be taken. However, attempts at aggressive nutritional intervention for someone who is unable to eat may end up being frustrating for the family and add to the patient’s suffering.37 Malnutrition is a common problem in patients with chronic, advanced, debilitating illnesses such as acquired immunodeficiency syndrome (AIDS) or cancer. Anorexia, a loss of appetite, occurs in most patients during the last weeks of life. Cancer cachexia is a complex syndrome characterized by loss of appetite, generalized tissue wasting, skeletal muscle atrophy, immune dysfunction, and a variety of metabolic alterations.38,39 It is likely that asthenia, mental and physical fatigue coupled with generalized weakness, is directly related to malnutrition.40–42 Administration of nutrition in the terminally ill is sometimes proposed as a medical intervention for nutritionrelated symptoms or management of side effects such as weight loss, weakness, constipation, pressure sores, intestinal obstruction, and dehydration. Nutritional intervention is also recommended to prevent further morbidity and to maintain quality of life by controlling blood sugars or electrolyte


Table 13–4 Potential Complications of Enteral Support Complication

Symptom

Cause

Aspiration

Coughing Fever Watery stool

Excess residual Large-bore tube Hyperosmotic solution Rapid infusion Lactose intolerance Inadequate fluid Inadequate fiber High volume Hyperosmotic fluids

Diarrhea

Constipation Dumping syndrome

Hard, infrequent stools Dizziness

imbalance. Lastly, nutritional therapy is offered to provide enough dietary intake to maintain energy. Enteral and parenteral feedings are, however, interventions with the potential for associated morbidity and increased suffering (Table 13–4). The American Medical Directors Association (AMDA), a group that represents nursing home physicians, has published a white paper including a section that cautions against tube feeding in patients with advanced dementia unless they have clearly indicated their desire for such treatment. This group believes that there is no advantage to tube feeding and that less time is spent and fewer complications are encountered with hand feeding.43 Until the literature is conclusive, the clinician must stay current with the research in this area.44 In cancer patients, anorexia is influenced by alterations in taste, alterations in the gastrointestinal system, changes in metabolism, and effects of the tumor itself. In addition, psychological factors such as depression or anxiety can change eating habits. Pain, fatigue, and nausea may also decrease the desire for oral intake. Many aspects of the cancer experience decrease caloric intake. Taste changes may result from the tumor itself or from various treatments such as chemotherapy, surgery, radiation, or antibiotics.45 These taste changes may in turn decrease digestive enzymes and delay digestion.46 The gastrointestinal tract may be altered by tumor, opportunistic infections such as Candida, or ulcerations resulting from chemotherapy or radiation that cause diarrhea. These alterations can interfere with ingestion, digestion, and absorption. Nausea and vomiting may ensue. Abnormalities in glucose metabolism, increases in circulating amino acids or lactic acid, and increases in free fatty acids can cause early satiety.47 Increased blood sugar and serotonin levels in the brain may also decrease appetite.48 In addition, cytokines such as interleukin-1 and tumor necrosis factor, released from tumors, may mediate anorexia and decrease gastric emptying.49 In other chronic illnesses, such as dementia, end-stage heart disease, chronic obstructive pulmonary disease, and advanced chronic kidney disease, loss of appetite is a common symptom, ranging in prevalence from 21 to 88.50–59 In end-

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stage dementia, patients lose the interest and ability to eat. Although, at first, dementia patients can ingest an adequate amount of food with assistance in feeding, in later stages there are increased feeding problems such as difficulties in chewing and swallowing, leading to choking and increased frequency of aspirations.60 The patient with advanced chronic illness may have increased caloric needs due to changes in metabolism. The basal metabolic rate can be increased by infection or malignancy. Age, nutritional status, temperature, hormones, and trauma can also change the metabolic rate. Unlike healthy persons, these patients have no adaptation to a decrease in food intake; metabolism does not slow down. Cytokines increase resting energy expenditure and skeletal muscle wasting.49 Nutrients that help to maintain immune function are decreased, and the resulting immunosuppression increases the risk of infection. Tumors invading the esophagus, stomach, or bowel can cause compression or obstruction and may limit oral intake. Surgery to remove tumors can remove all or part of the organs that produce digestive enzymes. This results in incomplete digestion. A shortened intestine reduces the number of villi available for absorption of nutrients.47

Additional Research on Nutrition Research on the use of nutrition, mainly artificial nutrition (AN) by enteral and parenteral methods, has been conducted on patients with cancer, ALS and dementia. It is standard practice to administer nutrition via percutaneous endoscopic gastrostomy (PEG) tube to patients being actively treated for head and neck cancers and in patients post acute stroke with dysphagia, as research has shown decreased morbidity and improved survival.60 However, in an article reviewing 17 trials of patients with advanced cancer receiving parenteral nutrition, no trial showed a survival benefit.61 For patients with amyotrophic lateral sclerosis (ALS), research has not shown an increase in quantity of life with nutrition via PEG; however, such nutritional support has been shown to help palliate by decreasing the effort to eat, improving fatigue, reducing the amount of time spent eating and taking medications, and reducing the fear of choking. 60 In end-stage dementia patients, much research has looked at the impact of tube feeding on prolongation of life and control of distressing symptoms. Several studies looking at placement of a feeding tube in patients with advanced dementia found that survival was not associated with the intervention.62,63 A review of the literature found that tube feeding did not: prevent aspiration of oral secretions or reduce risk of aspiration pneumonia; improve pressure sore outcomes; improve functional status or slow down the decline for demented patients with dysphagia; or make dysphagic demented patients more comfortable.61 The same review documented adverse outcomes from tube feedings that included aspiration pneumonia, tube occlusion, leaking and local infection. One study looking at use of medications to relieve symptoms in end-stage dementia patients for whom ANH was not initiated found that those patients used fewer medications

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for symptoms at end-of-life compared to other patients who received ANH, suggesting no increased suffering from the decision to forgo ANH.20 In another study looking at providers’ perceptions of end-stage dementia patients’ general level of discomfort, the researchers found that in patients who did not initiate ANH, their levels of discomfort decreased from baseline.64 Research to date has not documented improved survival outcomes for end stage diseases.

Nutritional Assessment Within the framework of goals of care, disease status, and closeness to death, nutritional assessment starts with a diet history. The history should include the individual’s usual dietary habits, current eating habits, and disease symptoms. Food preferences and aversions should be explored, as well as family support and the ability to obtain and prepare foods. The educational needs of the patient and of caregivers should also be assessed. A food diary may be helpful in this situation, and dietitians recommend a 72-hour history followed by weekly documentation. A physical examination to screen for changes in oral mucosa and dentition should be performed. Anthropometric measurements are part of nutritional assessment. These are often limited in scope at the end stages of disease. A history of weight loss of 20 or greater is indicative of increased morbidity and mortality.65 In the patient with advanced disease, weight gain may indicate the presence of edema or ascites, and weight loss may indicate dehydration. Other anthropometric measurements, such as skinfold thickness and midarm circumference, assess muscle and fat stores and can be used to monitor progress. Laboratory values are also used to estimate protein stores. These biochemical measurements are the mainstay for determining TPN. The appropriateness of each of these assessment parameters is determined on a case-by-case basis in the terminally ill.

Nutritional Therapy Nutritional therapy is aimed at improving intake and managing cachexia. Increasing appetite is sometimes possible with pharmacological therapy. Steroids have been known to increase appetite, but their long-term use can cause muscle weakness. High-dose megestrol acetate has been shown to increase appetite with subsequent weight gain.66,67 Hydrazine sulfate did not improve appetite more than placebo.68 Metoclopramide, tetrahydrocannabinol, and insulin have resulted in some improvement, but toxicities were problematic and the data were often insufficient. Exercise has been shown to stimulate appetite; however, few end-stage patients are able to participate in the type of exercise that is necessary to increase appetite. Nursing measures to promote oral intake include managing other symptoms (e.g., constipation, pain, nausea) that negatively affect appetite. In addition, patients may require more seasoning than usual for food to taste good. Good oral care and unhurried meals should be encouraged. Suggesting

that the patient allow others to cook may preserve energy for eating as well as decrease the negative effects of food odors. Wine or beer has been known to stimulate appetite but may be poorly tolerated by terminally ill patients or those receiving multiple medications with sedating properties. Enteral feedings use the gastrointestinal tract for delivery of nutrients, and oral supplementation of nutrients can be tried in individuals who have the capacity to swallow. Care must be taken, however, to monitor the use of these supplements. Caregivers and patients sometimes feel a moral obligation to provide food and “push” the supplements at the risk of harm to the patient, such as aspiration pneumonia or increased distress and decreased quality of life. Feedings may also be given through a NG tube, an esophagostomy tube, a gastrostomy tube, or a jejunostomy tube. In addition to the possibility of aspiration with enteral feedings, dumping syndrome, diarrhea, constipation, skin irritation at tube site insertion, and clogging of feeding tubes are potential complications. Finally, it is possible to provide nutrition parenterally. This approach may be useful for a small and carefully selected group of patients. However, TPN can be complicated by venous thrombosis, air embolism, infection, sepsis, hyperglycemia, hypoglycemia, and increased pain.

Whether or Not to Provide Artificial Hydration and Nutrition at End of Life Controversy about providing hydration for terminally ill individuals stems from trying to balance the medical tradition of doing everything possible to heal and prolong life with the idea of allowing patients to die comfortably without unnecessary interventions. Empirical studies of clinical practice suggest that the setting of end-of-life care influences the use of artifical hydration at the end of life. Patients are more likely to receieve hydration if they are cared for in an acute care setting and are less likely to receive hydration if they are cared for in a hospice program.69–73 What is the role of medical intervention at the final stage of illness? In conventional medical management, dehydration is routinely avoided or reversed with fluid and electrolyte replacement. Similarly, whenever a terminally ill patient seeks to prolong life, and if the goal of care is to prolong life, maintaining hydration is accepted medical management. Conversely, if a terminally ill patient does not wish to delay death or even seeks to hasten dying, fluid replacement is generally inappropriate. Table 13–5 outlines the principles of ethical decision-making in regard to artificial hydration and nutrition in the terminally ill. Table 13–6 illustrates four clinical scenarios or paradigm cases that the nurse may encounter while caring for the terminally ill and that influence clinical decision-making. Dehydration may aggravate or alleviate the discomfort of terminal disease (Table 13–7).6 Current research does not clearly guide practice. Dehydration causes unpleasant symptoms, such as confusion and restlessness, in nonterminally ill patients. These problems are common in the dying.


Table 13–5 Hydration and Nutrition in the Terminally Ill: Guiding Principles of Ethical Decision-Making • Everything in the terminal phase of an irreversible illness should be decided on the basis of whether it will make the patient more comfortable and whether it will honor his or her wishes. • Treatments are evaluated principally according to their consequences—benefits and burdens, physical, psychosocial, and spiritual—weighed within the patient’s value framework. • Dehydration per se does not require treatment, but symptoms associated with dehydration do require palliation. • When a patient is unable to express his or her wishes, advance directives or input from the health care proxy is followed. • Although the focus is the patient, attention to the concerns and distress of the family is essential.

Table 13–6 Nutrition and Hydration at the End of Life: Four Paradigm Cases

Table 13–7 Hydration and Rehydration at the End of Life: Potential Effects Body System General appearance Mouth

Pulmonary

Gastrointestinal tract

Paradigm case 1 The dying patient who becomes too weak or too obtunded to maintain normal fluid intake, who will die soon but may die less comfortably and perhaps more quickly without rehydration. Paradigm case 2 The terminally ill cancer patient who has an inoperable intestinal obstruction, feels hungry, and wants to be fed. Paradigm case 3 The terminally ill patient whose inability to take oral food or fluid is precipitated by, or partially the result of, palliative medical management: for example, the patient who is sedated in an attempt to manage a refractory symptom such as pain, dyspnea, or agitated delirium. Paradigm case 4 The dying patient who voluntarily stops eating and drinking in order to hasten death.

Dehydration can cause renal failure with an accompanying accumulation of opioid metabolites, which causes further symptoms, such as myoclonus and even seizures. Dehydration is also associated with constipation and increased risk of bedsores. Clinicians report that these symptoms are mild and easily treated without hydration and that some symptoms, such as increased secretions, are actually made worse by rehydration.6,10,30 Hospice nurses have reported that the dehydrated patient is not uncomfortable.74,75 There is concern that artificial hydration diminishes quality of life by adding tubes, which create a physical barrier that separates the

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Urinary tract

Effects of Dehydration

Effects of Rehydration

Sunken eyes

Improved appearance Oral comfort Relief of thirst Improved taste

Decreased saliva Thirst Bad lasted Dry, cracked lips Dry airway, viscous secretions Reduced death rattle Reduced secretions, cough Reduced congestion, wheezing, dyspnea, pleural eff usions Constipation

Facilitates productive cough Easer suctioning

More normal bowel function

Decreased secretions Less vomiting, diarrhea Anorexia Reduced ascites Ascites Reduced renal Improved renal function drug clearance Edema Reduced toxic metabolites Possible drug May need accumulation more drug administration

Source: Billings (1998), reference 7.

terminally ill from their loved ones. There is often fear that hydration unnecessarily prolongs dying. Those clinicians who support the use of hydration point to the prevention or relief of some symptoms, such as delirium.11,16,27 Patients and families may be making decisions based on inadequate knowledge or misconceptions about artificial hydration, such as the idea that it is helpful at any stage of disease or that it can increase strength.76 As with hydration, there is some controversy with regards to providing artificial nutrition at end of life. Most recent is the case of Terry Schiavo, who lived in a persistent vegetative state for 15 years because she was supported by ANH. In cases such as hers, it is clear that death results from the cessation of fluids and nutrition. It is not as clear that the provision of AN for most end-stage diseases actually prolongs life; however, AN may improve the quality of someone’s life through

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palliating symptoms or psychological distress associated with a decreasing appetite. Because food and fluids are viewed by many as a symbol of life, not to maintain fluids or to withdraw artificial hydration and nutrition at the end of life may cause spiritual or emotional conflict. These issues are complex and involve not only physical, psychological, and social concerns, but also individual ethical dilemmas. The decision to administer artificial hydration and nutrition should be discussed within the framework of a patient’s goals of care and expectations of treatment, taking into consideration the person’s culture, values and religious beliefs.

o]

Summary We inherit beliefs that govern our behavior. Among them are numerous contradictory notions that associate support with sustenance. Attitudes, preferences, and decisions may be influenced by race, gender, and culture.77 The rites of family meals and celebrations provide bonding and sharing as well as food—fundamental components of personal and social life. The issues of hydration and nutrition at the end of life are complex and require a thoughtful, individualized approach.78 Nurses and physicians are guided to institute or withdraw artificial hydration or nutrition based on the ethical principles of autonomy, beneficience and nonmaleficience.79,80 Provision of accurate and complete information by the nurse can influence a patient’s and family’s decisions about these matters.

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10. Burge FI. Dehydration symptoms of palliative care cancer patients. J Pain Symptom Manage 1993;8:454–464. 11. del Rosario B, Martin AS. Hydration for control of syncope in palliative care. J Pain Symptom Manage 1997;14:5–6. 12. MacDonald N. Ethical issues in dehydration and nutrition. In: Bruera E, Portenoy RK, eds. Topics in Palliative Care (Vol 2). New York: Oxford University Press, 1998:153–169. 13. Fainsinger RL, Bruera E. Hypodermoclysis for symptom control versus the Edmonton Injector. J Palliat Care 1991;7:5–8. 14. Fainsinger R, Bruera E. The management of dehydration in terminally ill patients. J Palliat Care 1995;10:55–59. 15. Hanks G, Cherny N, Fallon M. Opioid analgesic therapy. In: Doyle D, Hanks G, Cherny N, Calman K, eds. Oxford Textbook of Palliative Medicine (3rd ed). Oxford, England: Oxford University Press, 2004:316–341. 16. Waller A, Hershkowitz M, Adunsky A. The effect of intravenous fluid infusion on blood and urine parameters of hydration and on state of consciousness in terminal cancer patients. Am J Hospice Palliat Care 1994;11:22–27. 17. Morita T, Hyodo I, Yoshimi T, et al. Artificial hydration therapy, laboratory findings, and fluid balance in terminally ill patients with abdominal malignancies. J Pain Symptom Manage 2006;31:130–139. 18. McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients: The appropriate use of nutrition and hydration. JAMA 1994;272:1263–1266. 19. Dalal S, Bruera E. Dehydration in cancer patients: To treat or not to treat. J Support Oncol 2004;2:467–479. 20. Buiting HM, can Delden JM, Rietjens JAC, et al. Forgoing artificial nutrition or hydration in patients nearing death in six European countries. J Pain Symptom Manage 2007; 34:305–314. 21. Hoefler JM. Making decisions about tube feeding for severely demented patients at the end of life: Clinical, legal, and ethical considerations. Death Stud 2000;24:233–254. 22. Ellershaw JE, Sutcliffe JM, Saunders CM. Dehydration and the dying patient. J Pain Symptom Manage 1995;10:192–197. 23. Fainsinger R, MacEachern T, Miller MJ, et al. The use of hypodermoclysis for rehydration in terminally ill cancer patients. J Pain Symptom Manage 1994;9:298–302. 24. Cerchietti L, Navigante A, Sauri A, Pallazo F. Hypodermoclysis. Int J Palliat Nurs 2000;6:370–374. 25. Fainsinger RL, Bruera E. When to treat dehydration in a terminally ill patient. Support Care Cancer 1997;5:205–211. 26. Yan E, Bruera E. Parenteral hydration of the terminally ill. J Palliat Care 1991;7:40–43. 27. Bruera E, Franco JJ, Maltoni M, Watanabe S, Suarez-Almazor M. Changing pattern of agitated impaired mental status in patients with advanced cancer: Association with cognitive monitoring, hydration, and opioid rotation. J Pain Symptom Manage 1995;10:287–291. 28. Morita T, Tei Y, Inoue S. Agitated terminal delirium and association with partial opioid substitution and hydration. J Palliat Med 2003;6:557–563. 29. Bruera E, Sala R, Rico MA, Moyano J, Centeno C, Willey J, Palmer JL. Effects of parenteral hydration in terminally ill cancer patients: A preliminary study. J Clin Oncol 2005;23:2366–2371. 30. Zerwekh J. The dehydration question. Nursing 1983;13:47–51. 31. Printz LA. Is withholding hydration a valid comfort measure in the terminally ill? Geriatrics 1988;43:84–88.

Hydration, Thirst, and Nutrition 32. Collard T, Rapin CH. Dehydration in dying patients: Study with physicians in French-speaking Switzerland. J Pain Symptom Manage 1991;6:230–240. 33. Mercadante S, Ferrera P, Girelli D, Casuccio A. Patients’ and relatives’ perceptions about intravenous and subcutaneous hydration. J Pain Symptom Manage 2005;30:354–358. 34. Kemp C. Dehydration, fatigue and sleep. In: Kemp C, ed. Terminal Illness: A Guide to Nursing Care (2nd ed). Philadelphia: Lippincott, 1999:205–210. 35. Bruera E, Pruvost M, Schoeller T, Montejo G, Watanabe S. Proctoclysis for hydration of terminally ill cancer patients. J Pain Symptom Manage 1998;8:454–464. 36. Berger EY. Nutrition by hypodermoclysis. J Am Geriatr Soc 1984; 32:199–203. 37. Cimino JE. The role of nutrition in hospice and palliative care of the cancer patient. Top Clin Nutr 2003;18:154–161. 38. Rivadeneira DE, Envoy D, Fahey TJ, Lieberman MD, Daly JM. Nutritional support of the cancer patient. CA Cancer Clin 1998; 48:69–80. 39. Costa G. Cachexia, the metabolic component of neoplastic diseases. Cancer Res 1977;37:2327–2335. 40. Neuenschwander H, Bruera E. Asthenia. In: Doyle D, Hanks GWC, MacDonald N, eds. Oxford Textbook of Palliative Medicine (2nd ed). New York: Oxford University Press, 1998:573–581. 41. Bruera E. Clinical management of cachexia and anorexia in patients with advanced cancer. Oncology 1992;49(Suppl 2):35–42. 42. Storey P. Symptom control in advanced cancer. Semin Oncol 1994;21:748–753. 43. American Medical Directors Association. White Paper on Surrogate Decision-Making and Advanced Care Planning In Long-Term Care, 2003. Available at: http://www.amda.com/ governance/whitepapers/surrogate/surrogate.pdf (accessed December 29, 2008). 44. Meares C. Nutritional issues in palliative care. Semin Oncol Nurs 2000;16:135–145. 45. Bender CM. Taste alterations. In: Yasko JM, ed. Nursing Management of Symptoms Associated with Chemotherapy (3rd ed). Columbus, Ohio: Adria Laboratories, 1993:67–74. 46. Kesner DL, DeWys WD. Anorexia and cachexia in malignant disease. In: Newell GR, Ellison NM, eds. Nutrition and Cancer: Etiology and Treatment. New York: Raven Press, 1981:303–317. 47. Tait NS. Anorexia-cachexia syndrome. In: Groenwald SL, Frogge MH, Goodman M, Yarbro CH, eds. Cancer Symptom Management. Boston: Jones and Bartlett, 1997:171–185. 48. Grant M, Ropka ME. Alterations in nutrition. In: Baird S, McCorkle R, Grant M, eds. Cancer Nursing: A Comprehensive Textbook. Philadelphia: WB Saunders, 1991:717–741. 49. Moldawer LL, Rogy MA, Lowry SF. The role of cytokines in cancer cachexia. J Parenter Nutr 1992;16(Suppl):43s–49s. 50. Cartwright JC, Hickman S, Perrin N, Tilden V. Symptom experiences of residents dying in assisted living. J Am Med Dir Assoc 2006;7:219–223. 51. Cohen LM, Moss AH, Weisbord SD, Germain MJ. Renal palliative care. J Palliat Med 2006;9:977–992. 52. Kutner JS, Bryant LL, Beaty BL, Fairclogh DL. Time course and characteristics of symptom distress and quality of life at the end of life. J Pain Symptom Manage 2007;34:227–236. 53. Kutner JS, Kassner CT, Nowels DE. Symptom burden at the end of life: Hospice providers’ perceptions. J Pain Symtom Manage 2001;21:473–480.

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54. Nordgren L, Sörensen S. Symptoms experienced in the last six months of life in patients with end-stage heart failure. Eur J Cardiovasc Nurs 2003;2:213–217. 55. O’Mahony S, Blank A, Simpson J, et al. Preliminary report of a palliative care and case management project in an emergency department for chronically ill elderly patients. J Urban Health 2008;85:443–451. 56. Solano JP, Gomes G, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage 2006;31:58–69. 57. Tilden VP, Tolle SW, Drach LL, Perrin NA. Out-of-hospital death: Advance care planning, decedent symptoms, and caregiver burden. J Am Geriatr Soc 2004;52:532–539. 58. Tranmer JE, Heyland D, Dudgeon D, Groll D, Squires-Graham M, Coulson K. Measuring the symptom experience of seriously ill cancer and noncancer hospitalized patients near the end of life with the Memorial Symptom Assessment Scale. J Pain Symptom Manage 2003;25:420–429. 59. Walke LM, Byers AL, Tinetti ME, Dubin JA, McCorkle R, Fried TR. Range and severity of symptoms over time among older adults with chronic obstructive pulmonary disease and heart failure. Arch Intern Med 2007;167:2503–2508. 60. Ganzini L. Artificial nutrition and hydration at the end of life: Ethics and evidence. Palliat Support Care 2006:4;135–143. 61. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia. JAMA 1999;282:1365–1370. 62. Meier, D, Ahronheim, JC, Morris J, Baskin-Lyons, S, Morrison, RS. High short-term mortality in hospitalized patients with advanced dementia: Lack of benefit of tube feeding. Arch Intern Med 2001;61:594–599. 63. Murphy LM, Lipman TO. Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia. Arch Intern Med 2003;163:1351–1353. 64. Pasman HRW, Onwuteaka-Philipsen BR, Kriegsman DMW, Ooms ME, Ribbe MW, van der Wal G. Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. Arch Intern Med 2005;165:1729–1735. 65. Bernard M, Jacobs D, Rombeau J. Nutrient requirements. In: Bernard M, Jacobs J, Romeau D, eds. Nutritional and Metabolic Support of Hospitalized Patients. Philadelphia: WB Saunders, 1986:11–45. 66. Tchekmedyian NS, Hickman M, Siau J, Greco FA, Keller J, Browder H, Aisner J. Megestrol acetate in cancer anorexia and weight loss. Cancer 1992;69:1268–1274. 67. Schmoll E, Wilke H, Thole R, Preusser P, Wildfang I, Schmoll HJ. Megestrol acetate in cancer cachexia. Semin Oncol 1991;18(Suppl 2):32–34. 68. Loprinzi CL, Goldberg RM, Su JQ, et al. Placebo-controlled trial of hydrazine sulfate in patients with newly diagnosed non small-cell lung cancer. J Clin Oncol 1994;11:1126–1129. 69. Asch DA, Faber-Langendoen K, Shea JA, Christakis NA. The sequence of withdrawing lifesustaining treatment from patients. Am J Med 1999;107:153–156. 70. Faber-Langendoen K. A multi-institutional study of care given to patients dying in hospitals: Ethical and practical implications. Arch Intern Med 1996;156:2130–2136. 71. Wilson D. A report of an investigation of end-of-life care practices in health care facilities and the influences on those practices. J Palliat Care 1997;13:34–40.

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72. Zerzan J, Stearns S, Hanson L. Access to palliative care and hospice in nursing homes. JAMA 2000;284:2489–2494. 73. Lanuke K, Fainsinger RL, deMoissac D. Hydration management at the end of life. J Palliat Care 2004;7:257–263. 74. Andrews M, Bell ER, Smith SA, Tischler JF, Veglia JM. Dehydration in terminally ill patients: Is it appropriate palliative care? Postgrad Med 1993;93:201–208. 75. Andrews MR, Levine AM. Dehydration in the terminal patient: Perception of hospice nurses. Am J Hospice Care 1989;1:31–34. 76. Chiu TC, Hu WY, Chuang RB, Cheng YR, Chen CY, Wakai S. Terminal cancer patients’ wishes and influencing factors toward the provision of artificial nutrition and hydration in Taiwan. J Pain Symptom Manage 2004;27:206–214.

77. Phipps E, True G, Harris D, Cong U, Tester W, Chavin SI, Braitman LE. Approaching the end of life: Attitudes, preferences, and behaviors of African-American and white patients and their family caregivers. J Clin Oncol 2003;21:549–554. 78. Daly B. Special challenges of withholding artificial nutrition and hydration. J Gerontol Nurs 2000;26:25–31. 79. Day L, Drought T, Davis AJ. Principle-based ethics and nurses’ attitudes towards artificial feeding. J Adv Nurs 1995; 21:295–298. 80. Slomka J. Withholding nutrition at the end of life: Clinical and ethical issues. Cleve Clin J Med 2003;70:548–552.

14o]

Deborah Dudgeon

Dyspnea, Death Rattle, and Cough Have you ever choked on something and not been able to get your breath? Th at’s what it feels like for me all of the time!—A patient I can’t go into the room. It sounds like she’s drowning!!—A family member At times I cough so much I vomit. I’m exhausted!—A patient

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Key Points Dyspnea is a subjective experience. Tachypnea is not dyspnea. Patients can be very frightened when breathless. Nursing and medical interventions are helpful for patients with dyspnea. Death rattle is common in dying patients. Death rattle is very distressing for people at the bedside. Family members need to receive good teaching and reassurance about death rattle. Anticholinergics are the drugs of choice for death rattle. Chronic cough can be very debilitating. Massive hemoptysis is very frightening and needs to be anticipated. Pharmacological and nonpharmacological interventions can help patients with chronic cough.

o]o]o] DYSPNEA Dyspnea is a very common symptom in people with advanced disease and can severely impair their quality of life. The presence of dyspnea correlates with the probability of dying in the hospital.1 In one international study, dyspnea prompted the use of terminal sedation in 25 to 53 of patients.2 Management of breathlessness requires understanding and assessment of the multidimensional components of the symptom, knowledge of the pathophysiological mechanisms and clinical syndromes that are common in people with advanced disease, and knowledge of the indications and limitations of the available therapeutic approaches.

Definition The American Thoracic Society has defi ned dyspnea as the “term used to characterize a subjective experience of breathing discomfort that consists of qualitatively distinct sensations that vary in intensity.”3 Dyspnea, like pain, is multidimensional in nature, with not only physical elements but also affective components, which are shaped by previous experience.4,5 In COPD, a neurophysiological model describes the variety of mechanisms that can lead to dyspnea: receptor → afferent impulse → integration/processing in the central nervous system (CNS) → efferent impulse → dyspnea.5 Stimulation of a number of different receptors (Figure 14–1), and the conscious perception this stimulation invokes, can alter ventilation and result in a sensation of breathlessness.4,5 It is proposed that dyspnea results from a “mismatch” between the afferent information to the CNS and the outgoing motor command to the respiratory muscles. Th is mismatch is called “neuroventilatory dissociation” or “afferent–efferent dissociation.”4

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SOMATOSENSORY & ASSOCIATION CORTICES BIOCHEMICAL Central Peripheral ΔpH ΔpH ΔpCO2 ΔpCO2 ΔpO2

PS YCHOGENIC MEDULLA & PONS VASCULAR Baro& Mechanoreceptors

MECHANICAL Muscle Spindles Irritant, Stretch, J Receptors Golgi Tendon Organs Thermal Receptors Trigeminal Nerves

Motor Control Voluntary, Involuntary

Chest Wall

Diaphragm

FIGURE 14–1. Schematic diagram of the neuroanatomical elements involved in the control of ventilation.

Prevalence and Impact The prevalence of the dyspnea varies according to the stage and type of underlying disease and the methodological design of the studies.6 A systematic review of symptom prevalence in advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease (COPD) and renal disease found the prevalence of dyspnea was 10–70 in patients with cancer, 11–62 with AIDS, 60–88 in heart disease, 90–95 in COPD and 11–62 in renal disease.6 In a prospective study of 400 patients with inoperable lung cancer, the intensity of dyspnea was higher in patients closer to death and difficulties breathing was ranked as the most distressing among these patients.7 Another study of patients with end-stage chronic obstructive pulmonary disease (COPD) found that 95 of the participants experienced extreme breathlessness and that it was the most distressing and debilitating symptom.8 Dyspnea is also quite prevalent in people with advanced congestive heart failure (CHF): 56.3 experience dyspnea, 53.4 have it “frequently” or “almost constantly,” 25.9 describe it as “severe” or “very severe,” and 43.1 describe the distress associated with it as “quite a bit” or “very much.”9 Likewise, dyspnea occurs in 37 of patients with cerebrovascular accident (of whom 57 were breathless for >6 months)10; in 47 to 50 of patients with amyotrophic lateral sclerosis (ALS); and in 70 of those with dementia.11 In a study of late-stage cancer patients, Roberts and associates12 used patient self-report surveys, chart audits of patients under the care of a hospice program, and interviews of patients and nurses in a home-care hospice program to examine the occurrence of dyspnea during the last weeks of

life. They found that 62 of the patients with dyspnea had been short of breath for >3 months. Various activities intensified dyspnea for these patients: climbing stairs, 95.6; walking slowly, 47.8; getting dressed, 52.2; talking or eating, 56.5; and resting, 26.1. The patients universally responded by decreasing their activity to whatever degree would relieve their shortness of breath. Most of the patients had received no direct medical or nursing assistance with their dyspnea, leaving them to cope in isolation. Brown and colleagues13 found that 97 of lung cancer patients studied had decreased their activities, and 80 believed they had socially isolated themselves from friends and outside contacts to cope with their dyspnea. Studies in patients with COPD, CVA, or end-stage heart or neurological diseases have also demonstrated the presence of significant dyspnea and other symptoms, functional disability, and impaired quality of life in the last year of their lives.8,10,11,14,15 Patients with advanced disease typically experience chronic shortness of breath with intermittent acute episodes.13,16 Acute attacks of breathlessness are usually accompanied by feelings of anxiety, fear, panic, and, if severe enough, a sensation of impending death.16 Patients and family members who were participants in a qualitative study using narrative analysis consistently expressed fear of dying during a future acute episode of breathlessness, or of watching helplessly as a loved one became increasingly breathless and died before receiving any help.17 Many dying persons are terrified of waking in the middle of the night with intense air hunger.18 They need providers who will anticipate their fears and provide symptomatic relief of their breathlessness and anxiety as they approach death.17,18

Dyspnea, Death Rattle, and Cough

Pathophysiology Management of dyspnea of patients requires an understanding of its multidimensional nature and the pathophysiologic mechanisms that cause this distressing symptom. Exertional dyspnea in cardiopulmonary disease (Table 14–1) is caused by (1) increased ventilatory demand, (2) impaired mechanical responses, or (3) a combination of the two.19 The effects of abnormalities of these mechanisms can also be additive. Increased Ventilatory Demand Ventilatory demand is increased because of increased physiological dead space resulting from reduction in the vascular bed (from thromboemboli, tumor emboli, vascular obstruction, radiation, chemotherapy toxicity, or concomitant emphysema); hypoxemia and severe deconditioning with early metabolic acidosis (with excessive hydrogen ion stimulation); alterations in carbon dioxide output (Vco2) or in the arterial partial pressure of carbon dioxide (Pco2) set point; and Table 14–1 Pathophysiologic Mechanisms of Dyspnea Increased ventilatory demand Increased physiological dead space • • • • • •

Thromboemboli Tumor emboli Vascular obstruction Radiation therapy Chemotherapy Emphysema

Severe deconditioning Hypoxemia Change in VCO2 or arterial PCO2 set point Psychological: anxiety, depression Increased neural reflex activity Impaired mechanical response/ventilatory pump impairment Restrictive ventilatory deficit Respiratory muscle weakness • • • • • •

Cachexia Electrolyte imbalances Peripheral muscle weakness Neuromuscular abnormalities Neurohumoral Steroids

Pleural or parenchymal disease Reduced chest wall compliance Obstructive ventilatory deficit Asthma Chronic obstructive pulmonary disease Tumor obstruction Mixed obstructive/restrictive disorder (any combination of the above)

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nonmetabolic sources, such as increased neural reflex activity, or psychological factors such as anxiety and depression. Impaired Mechanical Response/Ventilatory Pump Impairment Impaired mechanical responses result in restrictive ventilatory deficits due to inspiratory muscle weakness,20 pleural or parenchymal disease, or reduced chest wall compliance; airway obstruction from coexistent asthma or COPD, or tumor obstruction. Patients may also have a mixed obstructive and restrictive disorder. Multidimensional Assessment of Dyspnea Dyspnea, like pain, is a subjective experience that may not be evident to an observer. Tachypnea, a rapid respiratory rate, is not dyspnea. Medical personnel must learn to ask for and accept the patient’s assessments, often without measurable physical correlates. If patients say they are having discomfort with breathing, we must believe that they are dyspneic. To determine whether dyspnea is present, it is important to ask more than the question, “Are you short of breath?” Patients often respond in the negative to this simple question because they have limited their activities so they won’t become short of breath. It is therefore helpful to ask about shortness of breath in relationship to activities: “Do you get short of breath walking at the same speed as someone of your age?” “Do you have to stop to catch your breath when walking upstairs?” “Do you get short of breath when you are eating?”

Qualitative Aspects of Dyspnea Dyspnea is not a single sensation. Recent work suggests that the sensation of breathlessness encompasses several qualities.21 Just as the descriptions “burning” or “numb” suggest neuropathic pain, phrases such as “chest tightness,” “exhalation,” and “deep” were among a cluster of words associated with asthma.21 It is possible that dyspnea mediated by similar receptors evokes common word descriptors. From the research to date, it is not known whether qualitative assessments of dyspnea in breathless patients permit any discrimination among the various cardiopulmonary disorders. O’Donnell and coworkers22–24 found that, although descriptor choices were clearly different between health and disease states, they provided no discrimination among various diseases (e.g., COPD, restrictive lung disease, and CHF). Others have suggested that changes in the quality of dyspnea may prompt patients with heart failure to go to the emergency department.25

Clinical Assessment Clinical assessments are usually directed at determining the underlying pathophysiology, deciding appropriate treatment, and evaluating the response to therapy.

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The clinical assessment of dyspnea should include a complete history of the symptom, including its temporal onset (acute or chronic), whether it is affected by positioning, its qualities, associated symptoms, precipitation and relieving events or activities, and response to medications. A past history of smoking, underlying lung or cardiac disease, concurrent medical conditions, allergy history, and details of previous medications or treatments should be elicited.26,27 Careful physical examination focused on possible underlying causes of dyspnea should be performed. Particular attention should be directed at signs associated with certain clinical syndromes that are common causes of dyspnea. Examples are the dullness to percussion, decreased tactile fremitus, and absent breath sounds associated with a pleural eff usion in a person with lung cancer; an elevated jugular venous pressure (JVP), audible third heart sound (S3), and bilateral crackles audible on chest examination associated with CHF; and elevated JVP, distant heart sounds, and pulsus paradoxus in people with pericardial eff usions.26,27 Gift and colleagues28 studied the physiological factors related to dyspnea in subjects with COPD and high, medium, and low levels of breathlessness. There were no significant differences in respiratory rate, depth of respiration, or peak expiratory flow rates at the three levels of dyspnea. There was, however, a significant difference in the use of accessory muscles between patients with high and low levels of dyspnea, suggesting that this is a physical finding that reflects the intensity of dyspnea. Diagnostic tests helpful in determining the cause of dyspnea include chest radiography; electrocardiography; pulmonary function tests; arterial blood gases; complete blood counts; serum potassium, magnesium, and phosphate levels; cardiopulmonary exercise testing; and tests specific for suspected underlying pathologies, such as an echocardiogram for suspected pericardial eff usion.26 The choice of appropriate diagnostic tests should be guided by the stage of disease, the prognosis, the risk/benefit ratios of any proposed tests or interventions, and the desires of the patient and family. Nguyen and colleagues29 found that the ratings of intensity of dyspnea during laboratory exercise, clinical measures of dyspnea such as the Oxygen Cost Diagram, and pulmonary function tests captured distinctly different information in patients with moderate to severe COPD. It is therefore not surprising that results of pulmonary function tests do not necessarily reflect the intensity of a person’s dyspnea. Individuals with comparable degrees of functional lung impairment may also experience considerable differences in the intensity of dyspnea they perceive.5 Factors such as adaptation, differing physical characteristics, and psychological conditions can modulate both the quality and the intensity of the person’s perception of breathlessness. The Visual Analog Scale (VAS) is one of the most popular techniques for measuring the perceived intensity of dyspnea. This scale is usually a 100-mm vertical or horizontal line, anchored at each end by words such as “Not at all breathless” and “Very breathless.” Subjects are asked to mark the line

at the point that best describes the intensity of their breathlessness. The scales can be used as an initial assessment, to monitor progress, and to evaluate effectiveness of treatment in an individual patient.30 Numeric rating scales (NRS) are highly correlated with VAS ratings of breathlessness31 and more repeatable measures that require a smaller sample size to detect a change in breathlessness.31 The modified Borg scale is a scale with nonlinear spacing of verbal descriptors of severity of breathlessness.32 Patients are asked to pick the verbal descriptor that best describes their perceived exertion during exercise. It is usually used in conjunction with an exercise protocol with standardized power output or metabolic loads. When used in this manner, the slope of the Borg descriptors over time is very reproducible and reliable, permitting comparisons within individuals and across population groups.33,34 The Reading Numbers Aloud test was designed as an objective measure of the activity-limiting effect of breathlessness in people with cancer who were breathless at very low levels of exertion.35,36 The test involves asking subjects to read a grid of numbers as quickly and clearly as possible for 60 seconds. The number of numbers read and the number read per breath are recorded. In a systematic review of the usefulness of different assessment tools to measure breathlessness, Bausewein and colleagues31 concluded that no one scale accurately reflected the effects of breathlessness on the patient with advanced disease and their family. They recommended that for general clinical questions, a VAS or modified Borg Scale were most useful; multidimensional tools if the focus was on quality of life; breathlessness-specific questionnaires if the focus was the sensation or functional impact of breathlessness; and a combination of instruments or methods (qualitative and quantitative) in a research setting.

Dyspnea and Psychological Factors The person’s perception of the intensity of his or her breathlessness is also affected by psychological factors. Anxious, obsessive, depressed and dependent persons appear to experience dyspnea that is disproportionately severe relative to the extent of their pulmonary disease.5 Gift and colleagues28 found that anxiety was higher during episodes of high or medium levels of dyspnea, compared with low levels of dyspnea. Kellner and associates37 found in multiple-regression analyses that depression was predictive of breathlessness. Studies in cancer patients by Dudgeon and Lertzman20,38 and others39–41 have also shown that anxiety is significantly correlated with the intensity of dyspnea (r = 0.3) but explains only 9 of the variance in the intensity of breathlessness. These studies were done in people with chronic dyspnea and when the person was at rest. Carrieri-Kohlman and colleagues42 found higher correlations between dyspnea intensity and anxiety associated with dyspnea at the end of exercise (r = 0.49). It is also probable that anxiety is a more prominent factor during episodes of acute shortness of breath.

Dyspnea, Death Rattle, and Cough

Table 14–2 Management of Dyspnea Sit upright supported by pillows or leaning on overbed table Fan +/– oxygen Relaxation techniques and other appropriate nonpharmacological measures Identify and treat underlying diagnosis (if appropriate) Pharmacologic Management Chronic Opioids Add phenothiazine (chlorpromazine, promethazine) Acute Opioids Add anxiolytic

Management The optimal treatment of dyspnea is to treat reversible causes. If this is no longer possible, then both nonpharmacological and pharmacological methods are used (Table 14–2). Pharmacological Interventions Opioids. Since the late 19th century, opioids have been used to relieve breathlessness of patients with asthma, pneumothorax, and emphysema.43 Although most trials have demonstrated the benefit of opioids for the treatment of dyspnea,43–53 some have been negative54–57 or have produced undesirable side effects.46,54 In 2001, a systematic review examined the effectiveness of oral or injectable opioid drugs for the palliative treatment of breathlessness.58 The authors identified 18 randomized, double-blind, controlled trials comparing the use of any opioid drug against placebo for the treatment of breathlessness in patients with any illness. In the studies involving non-nebulized routes of administration,43,45,51,57,59–61 there was statistically strong evidence for a small effect of oral and parenteral opioids for the treatment of breathlessness.58 Two recently published systematic reviews also support the use of oral or parenteral opioids for the management of dyspnea in cancer patients.62,63 In recent years, there has been tremendous interest in the use of nebulized opioids for the treatment of dyspnea. Opioid receptors are present on sensory nerve endings in the airways:64 therefore, it is hypothesized that if the receptors were interrupted directly, lower doses, with less systemic side effects, would be required to control breathlessness. The 2001 systematic review58 identified nine randomized, double-blind, controlled trials comparing the use of nebulized opioids or placebo for the control of breathlessness.65–73 The authors concluded that there was no evidence that nebulized opioids were more effective than nebulized saline in relieving breathlessness.58 In a recent double-blind, controlled, crossover study of the effects of nebulized hydromorphone, systemic

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hydromorphone and nebulized saline were compared for the relief of incident dyspnea in advanced cancer patients. Over time, breathlessness decreased significantly with all treatments and there weren’t any significant differences between the treatments.74 Although this study did not rule out the possibility that people’s dyspnea improved because they stopped the activity that precipitated it, the results suggest that nebulized saline is an effective treatment for dyspnea. It is hard to justify the continued use of nebulized opioids. Physicians have been reluctant to prescribe opioids for dyspnea since the potential for respiratory failure was recognized in the 1950s.75 The 2001 systematic review of opioids for breathlessness identified 11 studies that contained information on blood gases or oxygen saturation after intervention with opioids.58 Only one study reported a significant increase in the arterial partial pressure of carbon dioxide (PaCO2), but it did not rise above 40 mm Hg.59 In studies of cancer patients, morphine did not compromise respiratory function as measured by respiratory effort and oxygen saturation44,45,76 or respiratory rate and PaCO2.44 In another study, authors found the patients’ intensity of dyspnea and respiratory rates decreased significantly (P = 0.003) after the administration of an opioid, but there was no significant change in the transcutaneous arterial pressure of CO2.77 It is now known that the development of clinically significant hypoventilation and respiratory depression from opioids depends on the rate of change of the dose, the history of previous exposure to opioids, and possibly the route of administration.78 Early use of opioids improves quality of life and allows the use of lower doses, while tolerance to the respiratory depressant effects develops.79 Twycross80 suggested that early use of morphine or another opioid, rather than hastening death in dyspneic patients, might actually prolong survival by reducing physical and psychological distress and exhaustion. Sedatives and Tranquilizers. Chlorpromazine decreases breathlessness without affecting ventilation or producing sedation in healthy subjects.81 Woodcock and colleagues82 found that promethazine reduced dyspnea and improved exercise tolerance of patients with severe COPD. O’Neill and associates81 did not find that promethazine improved breathlessness in healthy people, nor did Rice and coworkers54 find that it benefited patients with stable COPD. McIver and colleagues83 found that chlorpromazine was effective for relief of dyspnea in advanced cancer. The systematic review by Viola and colleagues concluded that promethazine could be used orally as an alternative when systemic opioids couldn’t be employed.62 The results of clinical trials to determine the effectiveness of anxiolytics for the treatment of breathlessness have also been quite variable. Two studies showed that diazepam was effective in treating dyspnea,82,84 and one showed a reduction in dyspnea.85 Greene and colleagues86 reported an improvement in dyspnea with alprazolam; however, a randomized, placebo-controlled, double-blind study did not find any relief of dyspnea with alprazolam.87 Clorazepate was not found to be effective for breathlessness.88 Buspirone, a

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nonbenzodiazepine anxiolytic, had no effect on pulmonary function tests or arterial blood gases in patients with COPD, but improved exercise tolerance and decreased dyspnea.89 This drug warrants further study. Combinations. In a double-blind, placebo controlled, randomized trial, Light and colleagues60 studied the effectiveness of morphine alone, morphine and promethazine, and morphine and prochlorperazine for the treatment of breathlessness in patients with COPD. The combination of morphine and promethazine significantly improved exercise tolerance without worsening dyspnea, compared with placebo, morphine alone, or the combination of morphine and prochlorperazine.60 Ventafridda and colleagues90 also found the combination of morphine and chlorpromazine to be effective. In a randomized, single-blinded study, dyspneic cancer patients were given subcutaneous doses of: morphine routinely, every 4 hours, with breakthrough midazolam; routine midazolam with breakthrough morphine; or a routine dose of both midazolam and morphine.91 After 24 hours, the patients who received the routine doses of morphine and midazolam had significantly less dyspnea with apparently no greater levels of sedation. Other Medications. Indomethacin reduced exercise-induced breathlessness in a group of normal adults,92 but no benefit was obtained in patients with diffuse parenchymal lung disease93 or COPD.94 Although inhaled bupivacaine reduced exerciseinduced breathlessness in normal volunteers,95 it failed to decrease breathlessness of patients with interstitial lung disease.96 Inhaled lidocaine did not improve dyspnea in six cancer patients.97 Dextromethorphan did not improve breathlessness of patients with COPD.98 None of these medications can be recommended for the treatment of dyspnea at this time. A recent review of nebulized furosemide for the management of dyspnea found encouraging results in patients with asthma, COPD and cancer with further study recommended.99 Nonpharmacological Interventions Oxygen. In hypoxic patients with COPD, oxygen supplementation improves survival, pulmonary hemodynamics, exercise capacity, and neuropsychological performance.100 Guidelines for oxygen use in this setting are shown in Table 14–3. The usefulness of oxygen to relieve breathlessness in the person with refractory dyspnea is less clear.101 In a Cochrane review (2008) to determine if oxygen therapy provided relief of dyspnea in chronic end-stage disease, Cranston and colleagues102 identified 8 cross-over studies that met their inclusion criteria. There were 144 participants (97 cancer, 35 cardiac failure and 12 kyphoscoliosis). In the patients with cancer: the meta-analysis failed to demonstrate a signficant improvement of dyspnea at rest when oxygen was compared with air inhalation; improvement in dyspnea with oxygen inhalation was independent of resting hypoxia; and they perceived an improvement in dyspnea with inhalation of oxygen

Table 14–3 Guidelines for Oxygen Therapy Continuous oxygen PaO2 ≤ 55 mm Hg or oxygen saturation ≤88 at rest PaO2 of 56 to 59 mm Hg or oxygen saturation of 89 in the presence of the following: Dependent edema suggesting congestive heart failure Cor pulmonale Polycythemia (hematocrit > 56) Pulmonary hypertension Noncontinuous oxygen is recommended during exercise: PaO2 ≤ 55 mm Hg or oxygen saturation ≤ 88 with a low level of exertion, or during sleep PaO2 of ≤ 55 mm Hg or oxygen saturation ≤ 88 associated with pulmonary hypertension, daytime somnolence and cardiac arrhythmias100

at rest and during exercise. In cardiac failure participants, high concentration oxygen provided relief of dyspnea at six minutes during exercise tests, but low-flow ambulatory oxygen during a submaximal exercise test did not provide relief. In a single study of oxygen inhalation during exercise in participants with kyphoscoliosis, oxygen improved dyspnea. The authors of this systematic review stated that their outcomes were inconclusive.102 In a subsequent randomized, doubleblind, crossover trial of the effect of oxygen versus air on the relief of dyspnea in 51 cancer patients, Philip and colleagues103 found the mean sensation of dyspnea improved with both air and oxygen, with no significant differences in either VAS or patient preference between treatments. The 17 hypoxic patients also did not report a mean greater improvement with, or preference for, oxygen over air, despite improved oxygen saturations in all but 4 patients. The authors concluded that either air or oxygen via nasal prongs improved breathlessness.103 Pleural Eff usions. Whether a malignant pleural eff usion requires treatment is determined by the degree of symptomatic compromise, the stage of the disease, the patient’s life expectancy, and the patient’s estimated tolerance for more aggressive therapeutic approaches.104,105 At the time of initial diagnostic or therapeutic tap of the pleural eff usion, the removal of 1000 to 1500 mL of pleural fluid helps predict response to further therapies.105 If symptoms are not relieved and the lung does not reexpand, then further thoracenteses or insertion of a chest tube is unlikely to be of any benefit, and treatment should include medications to relieve symptoms. In 97 of cases, fluid reaccumulates within 1 month after thoracentesis alone.106 Repeated thoracenteses increase the risk for pneumothorax, empyema, and pleural fluid loculation and therefore should be limited to people with a short life span. Traditionally, tube thoracostomy was performed with large-bore chest tubes connected to wall suction; this treatment necessitated hospitalization and limited mobility, with substantial discomfort and expense.

Dyspnea, Death Rattle, and Cough Recent studies have shown the effectiveness of small-bore catheters and indwelling small pleural catheters in the outpatient setting.107–109 Instillation of any of several sclerosing agents into the pleural space after adequate drainage by tube thoracostomy creates a chemical pleuritis that obliterates the pleural space and prevents pleural fluid reaccumulation. Because pleurodesis is often painful, intrapleural lidocaine is administered before the instillation of the sclerosing agent to reduce local pain. Patients also should be premedicated and should have adequate analgesic available after the procedure. Pericardial Eff usion. As in all other situations, the approach to management of a pericardial eff usion depends on the person’s stage of disease, the prognosis, the potential benefits and complications, and the wishes of the patient and family. If pericardial tamponade with hemodynamic compromise is present and treatment is appropriate, an emergency pericardiocentesis is indicated, with aggressive intravenous fluid support and possible administration of a sympathomimetic agent to temporize.110 Hemodynamic improvement usually occurs with removal of 50 to 100 mL of pericardial fluid. Continuous drainage can be achieved by placement of an indwelling pigtail catheter or creation of a pericardial window, or by percutaneous balloon pericardotomy.111,112 Pericardial drainage can be followed by instillation of a sclerosing agent to obliterate the pericardial space.113 Radiation or systemic chemotherapy could be considered if appropriate.113 Nursing Interventions Many patients obtain relief of dyspnea by leaning forward while sitting and supporting their upper arms on a table. This technique is effective in patients with emphysema,114 probably because of an improved length-tension state of the diaphragm, which increases efficiency.115 Pursed-lip breathing slows the respiratory rate and increases intra-airway pressures, thus decreasing small airway collapse during periods of increased dyspnea.116 Mueller and coworkers48 found that pursed-lip breathing led to an increase in tidal volume and a decrease in respiratory rate at rest and during exercise in 7 of 12 COPD patients experiencing an improvement in dyspnea. Pursed-lip breathing reduces dyspnea in about 50 of patients with COPD.117 People who are short of breath often obtain relief by sitting near an open window or in front of a fan. Cold directed against the cheek118 or through the nose119,120 can alter ventilation patterns and reduce the perception of breathlessness, perhaps by affecting receptors in the distribution of the trigeminal nerve that are responsive to both thermal and mechanical stimuli.118,119 Randomized controlled trials support the use of acupuncture and acupressure to relieve dyspnea in patients with moderate to severe COPD.121,122 Acupuncture provided marked symptomatic benefit in breathlessness and in respiratory rate in patients with cancer-related breathlessness.123 Other

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randomized controlled trials support the use of muscle relaxation with breathing retraining to reduce breathlessness in COPD patients.124,125 Corner and colleagues126 found that weekly sessions with a nurse research practitioner over 3 to 6 weeks, using counseling, breathing retraining, relaxation, and coping and adaptation strategies, significantly improved breathlessness and ability to perform activities of daily living compared with controls. Carrieri and Janson-Bjerklie127 found that patients used self-taught relaxation to help control their breathlessness. Others have found that formal muscle relaxation techniques decrease anxiety and breathlessness.128 Guided imagery 129 and therapeutic touch130 resulted in significant improvements in quality of life and sense of well-being in patients with COPD and patients with terminal cancer, respectively, but without any significant improvement in breathlessness. Nursing actions that intubated patients thought helpful included friendly attitude, empathy, providing physical support, staying at the bedside, reminding or allowing patients to concentrate on changing their breathing pattern, and providing information about the possible cause of the breathlessness and possible interventions.131

Patient and Family Teaching Carrieri and Janson-Bjerklie127 identified strategies patients used to manage acute shortness of breath. These strategies could be taught to patients and their families. Patients benefited from keeping still with positioning techniques, such as leaning forward on the edge of a chair with arms and upper body supported, and using some type of breathing strategy, such as pursed-lip or diaphragmatic breathing. Some of the patients distanced themselves from aggravating factors, and others used self-adjustment of medications. Several subjects isolated themselves from others to gain control of their breathing and diminish the social impact. Others used structured relaxation techniques, conscious attempts to calm down, and prayer and meditation. The study of Carrieri and Janson-Bjerklie127 and another by Brown and colleagues13 demonstrated that most subjects reported some changes in activities of living, such as changes in dressing and grooming, avoidance of bending or stooping, advanced planning or reduction in activities, staying in a good frame of mind, avoidance of being alone, and acceptance of the situation. Patients and families should be taught about the signs and symptoms of an impending exacerbation and how to manage the situation. They should learn problem-solving techniques to prevent panic, ways of conserving energy, how to prioritize activities, use of fans, and ways to maximize the effectiveness of their medications, such as using a spacer with inhaled drugs or taking an additional dose of an inhaled beta-agonist before exercise.132 Patients should avoid activities in which their arms are unsupported, because these activities often increase breathlessness.128

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Patients in distress should not be left alone. Social services, nursing, and family input need to be increased as the patient’s ability to care for himself or herself decreases.133

9= CASE STUDY Mrs. P, A 58-Year-Old Woman with Dyspnea You are called to the room of Mrs. P and find her sitting at the bedside, gasping for breath. You know that Mrs. P is a 58-year-old woman with advanced non-small cell lung cancer. She has a large lung mass in the right hilar region which has received maximum radiation treatment. She says that she has been unable to lie flat for a number of months and describes a progressive onset of worsening breathlessness with less and less activity. She says that she had gone to the washroom to have a sponge bath and, while combing her hair, got quite breathless and struggled to make it back to her bed. While getting an overbed table and pillow for her to rest on, you calmly instruct her to take slow, deep breaths and to use the breathing technique that you had previously taught her. You note that she is cyanosed and institute oxygen and fan to help relieve her breathlessness. On further examination, you notice that her face is quite puff y. She has bilaterally elevated JVP’s, distended vessels on her anterior chest and, when you raise her arm, her veins do not collapse until her hand is over her head. With institution of the oxygen, fan, and focused breathing, you note that she is slightly less distressed, but you ask her husband to stay with her while you prepare a dose of prn morphine. On your return 5 minutes later, Mrs. P’s breathing has further improved but is still a little labored, so you administer the morphine. Her husband stays with her, and 15 minutes later, when you return, he has helped her back into bed, where she is resting comfortably. o]

Summary Dyspnea is a very common symptom in people with advanced disease. The symptom is often unrecognized and patients, therefore, receive little assistance in managing their breathlessness. Dyspnea can have profound effects on a person’s quality of life, because even the slightest exertion may precipitate breathlessness.

o]o]o] DEATH RATTLE Noisy, rattling breathing in patients who are dying is commonly known as death rattle. This noisy, moist breathing can be very distressing for the family, other patients, visitors, and health care workers, because it may appear that the person is drowning in his or her own secretions.134 Management of death rattle can present health care providers a tremendous challenge as they attempt to ensure a peaceful death for the patient.135

Definition Death rattle is a term applied to describe the noise produced by the turbulent movements of secretions in the upper airways that occur with the inspiratory and expiratory phases of respiration in patients who are dying.136

Prevalence and Impact Death rattle occurs in 23 to 92 of patients in their last hours before death.136–142 Studies have shown that there is an increased incidence of respiratory congestion in patients with primary lung cancer,138,141 cerebral metastases,141,143 pneumonia, and dysphagia,142 with the symptom more likely to persist in cases with pulmonary pathology.141 The incidence of death rattle increases closer to death;141 the median time from onset of death rattle to death is 8 to 23 hours.139–141 Most commonly, this symptom occurs when the person’s general condition is very poor, and most patients have a decreased level of consciousness.141 If the person is alert, however, the respiratory secretions can cause him or her to feel very agitated and fearful of suffocating. Despite the identification of “noisy breathing” as a problem in 39 of patients dying in a long-term care setting, 49 of them received no treatment.144 In one study of the attitudes of palliative care nurses about the impact of death rattle, 13 thought that death rattle distressed the dying patient; 100 thought it distressed the dying person’s relatives, with 52 indicating that bereaved relatives had mentioned death rattle as a source of distress; and 79 thought that death rattle distressed nurses.135 A qualitative study involving hospice staff and volunteers found that most participants had negative feelings about hearing the sound of death rattle and thought that relatives were distressed by it as well.145 Studies of bereaved relatives, however, found that not all were distressed by the sound, and this was, in part, determined by whether the person appeared disturbed or if they saw fluid dribbling from the person’s mouth.146,147

Pathophysiology The primary defense mechanism for the lower respiratory tract is the mucociliary transport system. This system is a protective device that prevents the entrance of viruses, bacteria, and other particulate matter into the body.148–150 The surface of the respiratory tract is lined with a liquid sol phase near the epithelium and a superficial gel phase in contact with the air.148 Ciliated epithelial cells, located at all levels of the respiratory tract except the alveoli and the nose and throat, are in constant movement to propel the mucus up the respiratory tract, to be either subconsciously swallowed or coughed out. The mucus is produced by submucosal glands, which are under neural and humoral control. The submucosal glands are under parasympathetic, sympathetic, and noncholinergic, nonadrenergic nervous control. Resting glands secrete approximately 9 mL/min., but mechanical, chemical, or pharmacological stimulation (via vagal pathways) of the airway

Dyspnea, Death Rattle, and Cough epithelium can augment gland secretion. Surface goblet cells also produce mucus secretions, which can be increased with irritant stimuli (e.g., cigarette smoke). The secretory flow rate and amount, as well as the viscoelastic properties of the mucus, can be altered.148 The audible breathing of the so-called death rattle is produced when turbulent air passes over or through pooled secretions in the oropharynx or bronchi. The amount of turbulence depends on the ventilatory rate and airway resistance.143 Mechanisms of death rattle include excessive secretion of respiratory mucus, abnormal mucus secretions inhibiting normal clearance, dysfunction of the cilia, inability to swallow, decreased cough reflex due to weakness and fatigue, and the supine, recumbent position. Factors that may contribute to respiratory congestion include infection or inflammation, pulmonary embolism producing infarction and fluid leakage from damaged cells, pulmonary edema or CHF,150 dysphagia, and odynophagia. Although it has been suggested that a state of relative dehydration decreases the incidence of problematic bronchial secretions,151 Ellershaw and colleagues138 found no statistically significant difference in the incidence of death rattle in a biochemically dehydrated group of patients, compared with a group of hydrated patients. Bennett143 proposed two types of death rattle. Type 1 involves mainly salivary secretions, which accumulate in the last few hours of life when swallowing reflexes are inhibited. Type 2 is characterized by the accumulation of predominantly bronchial secretions over several days before death as the patient becomes too weak to cough effectively. This characterization has been empirically supported by Morita and colleagues141 and therefore may prove useful to determine appropriate treatment.

Assessment Assessment of death rattle includes a focused history and physical examination to determine potentially treatable underlying causes. If the onset is sudden and is associated with acute shortness of breath and chest pain, it might suggest a pulmonary embolism or myocardial infarction. Physical findings consistent with CHF and fluid overload might support a trial of diuretic therapy; the presence of pneumonia indicates a trial of antibiotic therapy. The effectiveness of interventions should be included in the assessment. The patient’s and family’s understanding and emotional response to the situation should also be assessed so that appropriate interventions can be undertaken. A recently developed and validated assessment tool, the Victoria Respiratory Congestion Scale (VRCS),152 is clinically useful to determine the effectiveness of interventions. This instrument rates the congestion on a scale from 0 to 3, with 0 indicating no congestion heard at 12 inches from the chest; 1 indicating congestion audible only at 12 inches from the chest; 2 indicating congestion audible at foot of patient’s bed; and 3 indicating congestion audible at door of patient’s room. This scale has demonstrated interrater reliability

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(κ = 0.53, P < 0.001) and concurrent validity with a noise meter (P < 0.001). It was weakly correlated with a caregiver distress scale (κ = 0.24, P < 0.001).

Management Pharmacological Interventions Primary treatment should be focused on the underlying disorder, if appropriate to the prognosis and the wishes of the patient and family. If this is not possible, then anticholinergics are the primary mode of treatment. Hyoscine hydrobromide (scopolamine), atropine sulfate, hyoscine butylbromide (Buscopan), and glycopyrrolate (Robinul) are the anticholinergic agents that are used to treat death rattle. Anticholinergic drugs can prevent vagally induced increased bronchial secretions, but they reduce basal secretions by only 39.148 A recent evidence-based guideline stated that there is insufficient evidence to support the use of one drug over another, and that the decision should be based on the drug characteristics and the needs of the patient.153 Hyoscine hydrobromide (scopolamine) is the primary medication used for the treatment of death rattle. It inhibits the muscarinic receptors and causes anticholinergic actions such as decreased peristalsis, gastrointestinal secretions, sedation, urinary retention, and dilatation of the bronchial smooth muscle. It is administered subcutaneously, intermittently or by continuous infusion, or transdermally.137,138,143,154 In one study,155 hyoscine hydrobromide 0.4 mg subcutaneously was immediately effective and only 6 of the patients required repeated doses. In an open label study of the treatment of death rattle, 56 of patients who received hyoscine hydrobromide had a significantly reduced noise level after 30 minutes, compared with 27 of patients who had received glycopyrrolate (P = 0.002).134 In other studies, between 22 and 65 of patients did not respond to hyoscine hydrobromide, and secretions recurred from 2 to 9 hours after the injection.137 In a retrospective study of 100 consecutive deaths in a 22-bed hospice, 27 of patients received an infusion of hyoscine hydrobromide, with 5 of 17 requiring injections despite receiving an infusion.143 Atropine sulfate is another anticholinergic drug that is preferred by some centers for the treatment of respiratory congestion.150 In a study of 995 doses of atropine, congestion was decreased in 30 of patients, remained the same in 69, and increased in 1.150 Atropine is the drug of choice of this group, because it results in less CNS depression, delirium, and restlessness, with more bronchodilatory effect, than hyoscine hydrobromide. There is, however, the risk of increased tachycardia with atropine sulfate when doses >1.0 mg are given. Hyoscine hydrobromide is thought to have a more potent effect on bronchial secretions than atropine does,136 but no comparative trials have been conducted in the palliative population. Glycopyrrolate (Robinul) is also an anticholinergic agent. It has the advantages of producing less sedation and agitation and a longer duration of action than hyoscine hydrobromide.

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In two studies in which its effectiveness was compared with that of hyoscine hydrobromide, glycopyrrolate was not as effective in controlling secretions.134,137 However, others have disputed this finding and suggest it is also more cost-effective.156 Glycopyrrolate is available in an oral form and can be useful for patients at an earlier stage of disease, when sedation is not desired. Hyoscine butylbromide (Buscopan) is another anticholinergic drug, but it has not been evaluated for its effectiveness in this condition. It is available in injection, suppository, and tablet forms. Nonpharmacological Interventions There are times when the simple repositioning of the patient may help him or her to clear the secretions (Table 14–4). Suctioning usually is not recommended, because it can be very uncomfortable for the patient and causes significant agitation and distress. Pharmacological measures are usually effective and prevent the need for suctioning. If the patient has copious secretions that can easily be reached in the oropharynx, then suctioning may be appropriate. In a study conducted at St. Christopher’s Hospice, suctioning was required in only 3 of 82 patients to control the secretions.138 In another study, 31 of the patients required only nursing interventions with reassurance, change in position, and occasional suctioning to manage respiratory congestion in the last 48 hours of life.155

Patient and Family Teaching The patient and the family can be very distressed by this symptom. It is important to explain the process, to help them understand why there is a buildup of secretions and that there is something that can be done to help. The Victoria Hospice group suggests using the term “respiratory congestion” as opposed to “death rattle,” “suffocation,” or “drowning in sputum,” because these terms instill strong emotional reactions.150 When explaining to families the changes that can occur before death, this is one of the symptoms that should be mentioned. If the person is being treated at home, the family should be instructed as to the measures available to relieve

Table 14–4 Management of “Death Rattle” Change position Reevaluate if receiving IV hydration Pharmacological management Chronic Glycopyrrolate or hyoscine hydrobromide patch If treatment fails: subcutaneous hyoscine hydrobromide or atropine sulfate Acute Subcutaneous hyoscine hydrobromide or subcutaneous atropine sulfate

death rattle and to notify their hospice or palliative care team if it occurs, so that appropriate medications can be ordered.

9= CASE STUDY Mrs. S, A 60-Year-Old Woman with Metastatic Breast Cancer When you start your shift and are walking down the hallway, you hear a loud gurgling noise as you pass Mrs. S’s room. You enter and find her family surrounding the bed and looking extremely distressed. Mrs. S. has very advanced metastatic breast cancer to lung, bones, and brain. Her condition has deteriorated markedly over the past few days. She is very restless and is pulling at the intravenous line that is running at 125 mL/h. There are audible gurgling sounds as she breathes, with diff use crackles throughout her chest, and 3+ pitting edema of all of her limbs. Her daughter, in tears, says, “It sounds like she is choking to death! Please do something!” While you help to reposition Mrs. S, you explain why this is happening and suction some of the mucus that has accumulated in her mouth. You go to the desk and get an order from the doctor for some furosemide, to change the intravenous line to a saline lock, and for an “as needed” dose of hyoscine hydrobromide subcutaneously. You administer the furosemide, but there is minimal improvement; therefore, you give Mrs. S an injection of hyoscine hydrobromide, and within 20 minutes she has settled. o]

Summary Although death rattle is a relatively common problem in people who are close to death, very few studies have evaluated the effectiveness of treatment. Anticholinergics are the drugs of choice at this time. Death rattle can be a very distressing for family members at the bedside, and they need to receive good teaching and reassurance.

o]o]o] COUGH Cough is a natural defense of the body to prevent entry of foreign material into the respiratory tract. In people with advanced disease, it can be very debilitating, leading to sleepless nights, fatigue, pain and, at times, pathological fractures.

Definition Cough is an explosive expiration that can be a conscious act or a reflex response to an irritation of the tracheobronchial tree. Cough lasting 8 weeks is considered chronic.154 A dry cough occurs when no sputum is produced; a productive cough is one in which sputum is raised. Hemoptysis occurs when the

Dyspnea, Death Rattle, and Cough sputum contains blood. Massive hemoptysis is expectoration of at least 100 to 600 mL of blood in 24 hours.155

Prevalence and Impact Chronic cough is a common problem; recurrent cough is reported by 3 to 40 of the population.157 In population surveys, men report cough more frequently than women do, but women appear to have an intrinsically heightened cough response.157 Cough is often present in people with advanced diseases such as bronchitis, CHF, uncontrolled asthma, human immunodeficiency virus infection, and various cancers. In a study of 289 patients with non-small cell lung cancer, cough was the most common symptom (>60) and the most severe symptom at presentation.158 Eighty percent of the group had cough before death. Over time, cough and breathlessness were much less well controlled than the other symptoms in this group of patients. In a study of 25 advanced cancer patients designed to evaluate treatment of cough, 88 of patients rated their cough as moderate or severe and 68 coughed >10 times per day.159 Cough was found to interfere with breathing, sleep, and speech, and was associated with coughing spasms, pain, nausea, and vomiting.159 In patients with lung cancer, hemoptysis is the presenting symptom 7 to 10 of the time, 20 have it at some time during their clinical course, and 3 die of massive hemoptysis.160 The mortality rate of massive hemoptysis in patients with lung cancer can be as high as 59 to 100.160

Pathophysiology Cough is characterized by a violent expiration, with flow rates that are high enough to sheer mucus and foreign particles away from the larynx, trachea, and large bronchi. The cough reflex can be stimulated by irritant receptors in the larynx and pharynx or by pulmonary stretch receptor, irritant receptor, or C-fiber stimulation in the tracheobronchial tree.161 Different mechanisms are involved in isolation or together in patients with cough of various causes.162 The vagus nerve carries sensory information from the lung that initiates the cough reflex. Infection can physically or functionally strip away epithelium, exposing sensory nerves and increasing the sensitivity of these nerves to mechanical and chemical stimuli. It is also thought that inflammation produces prostaglandins, which further increase the sensitivity of these receptors, leading to bronchial hyperreactivity and cough. When cough is associated with increased sputum production, it probably results from stimulation of the irritant receptors by the excess secretion.161 Cough is associated with respiratory infection, bronchitis, rhinitis, postnasal drip, esophageal reflux, medications including angiotensinconverting enzyme inhibitors,161 asthma, COPD, pulmonary fibrosis, CHF, pneumothorax, bronchiectasis, and cystic fibrosis.163 In the person with cancer, cough may be caused by any of these conditions; however, direct tumor effects (e.g.,

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obstruction), indirect cancer effects (e.g., pulmonary emboli), and cancer treatment effects (e.g., radiation therapy) could also be the cause.164 Hemoptysis can result from bleeding in the respiratory tract anywhere from the nose to the lungs. It varies from blood streaking of sputum to coughing up of massive amounts of blood. There are multiple causes of hemoptysis, but some of the more common ones are a tracheobronchial source, secondary to inflammation or tumor invasion of the airways; a pulmonary parenchymal source, such as pneumonia or abscess; a primary vascular problem, such as pulmonary embolism; a miscellaneous cause, such as a systemic coagulopathy resulting from vitamin K deficiency, thrombocytopenia, or abnormal platelet function secondary to bone marrow invasion with tumor, sepsis, or disseminated intravascular coagulation; or an iatrogenic cause, such as use of anticoagulants, nonsteroidal antiinflammatory drugs, or acetylsalicylic acid.165

Assessment In assessing someone with cough, it is important to do a thorough history and physical examination. Because cough may arise from anywhere in the distribution of the vagus nerve, the full assessment of a patient with a chronic cough requires a multidisciplinary approach with cooperation between respiratory medicine, gastroenterology, and ear, nose, and throat (ENT) departments.157 The assessment helps to determine the underlying cause and appropriate treatment of the cough. Depending on the diagnosis, the prognosis, and the patient’s and family’s wishes, it may be appropriate to perform diagnostic tests, including chest or sinus radiography, spirometry before and after bronchodilator and histamine challenge, and, in special circumstances in people with earlier-stage disease, upper gastrointestinal endoscopy and 24-hour esophageal pH monitoring. In patients with significant hemoptysis, bronchoscopy is usually needed to identify the source of bleeding. In the history and physical examination, one should look for a link between cough and the associated factors listed in the previous section, whether the cough is productive, the nature of the sputum, the frequency and amount of blood, precipitating and relieving factors, and associated symptoms.

Management It is important to base management decisions on the cause and the appropriateness of treating the underlying diagnosis, compared with simply suppressing the symptom. Th is decision is based on the diagnosis, prognosis, side effects, and possible benefits of the intervention, and the wishes of the patient and family. Management strategies also depend on whether the cough is productive (Table 14–5). Theoretically, cough suppressants, by causing mucus retention, could be harmful in conditions with excess mucus production.161

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Table 14–5 Treatment of Non-Productive Cough Nonopioid antitussive (dextromethorphan, benzonatate) Opioids Inhaled anesthetic (lidocaine, bupivacaine)

Pharmacological Interventions Antitussive drugs can be divided into two categories: centrally acting agents (opioids and nonopioids) and peripherally acting agents (which directly or indirectly act on cough receptors).160 Centrally Acting Antitussives Opioids suppress cough, but the dose is higher than that contained in the proprietary cough mixtures.161 The exact mode of action is unclear, but it is thought that opioids inhibit the mu receptor peripherally in the lung; act centrally by suppressing the cough center in the medulla or the brainstem respiratory centers; or stimulate the mu receptor, thus decreasing mucus production or increasing mucus ciliary clearance.161 Codeine is the most widely used opioid for cough; some authors claim that it has no advantages over other opioids and provides no additional benefit to patients already receiving high doses of opioids for analgesia,166 whereas others state that the various opioids have different antitussive potencies.160 More than 200 synthetic nonopioid antitussive agents are available; most are less effective than codeine.167 Dextromethorphan, a dextro isomer of levorphanol, is an exception; it is almost equiantitussive to codeine. Dextromethorphan acts centrally through nonopioid receptors to increase the cough threshold.166 Benzonatate is a nonopioid antitussive with a sustained cough-depressing action168 that provided excellent symptomatic relief for three cancer patients with opioidresistant cough.169 Opioid and nonopioid antitussives may act synergistically,166 but further studies are needed to confirm this hypothesis. Peripherally Acting Antitussives Demulcents are a group of compounds that form aqueous solutions and help to alleviate irritation of abraded surfaces. They are often found in over-the-counter cough syrups. Their mode of action for controlling cough is unclear, but it is thought that the sugar content encourages saliva production and swallowing, which leads to a decrease in the cough reflex; that they stimulate the sensory nerve endings in the epipharynx, and decrease the cough reflex by a “gating” process; or that demulcents may act as a protective barrier by coating the sensory receptors.161 Benzonatate is an antitussive that inhibits cough mainly by anesthetizing the vagal stretch receptors in the

bronchi, alveoli, and pleura.160 Other drugs that act directly on cough receptors include levodropropizine, oxalamine, and prenoxdiazine.160 Inhaled anticholinergic bronchodilators, either alone or in combination with β2-adrenergic agonists, effectively decrease cough in people with asthma and in normal subjects.170 It is thought that they decrease input from the stretch receptors, thereby decreasing the cough reflex, and change the mucociliary clearance. The local anesthetic lidocaine is a potent suppressor of irritant-induced cough and has been used as a topical anesthetic for the airway during bronchoscopy. Inhaled local anesthetics, such as lidocaine and bupivacaine, delivered by nebulizer, suppress some cases of chronic cough for as long as 9 weeks.161,171–173 Higher doses can cause bronchoconstriction, so it is wise to observe the first treatment. Patients must also be warned not to eat or drink anything for 1 hour after the treatment or until their cough reflex returns. There are a number of treatments for cough which are under investigation including: newer opioids, neurokinin receptor antagonists, gamma-aminobutyric acid receptor agonists, cannabinoid CB2 receptor agonists, compounds that block the transient receptor potential channels and other compounds that open potassium channels.163 Productive Coughs Interventions for productive coughs include chest physiotherapy, oxygen, humidity, and suctioning. In cases of increased sputum production, expectorants, mucolytics, and agents to decrease mucus production can be employed.160 Opioids, antihistamines, and anticholinergics decrease mucus production and thereby decrease the stimulus for cough. Massive Hemoptysis In patients with massive hemoptysis, survival is so poor that patients may not want any kind of intervention to stop the bleeding; in such cases, maintenance of comfort alone becomes the priority. For those patients who want intervention to stop the bleeding, the initial priority is to maintain a patent airway, which usually requires endotracheal intubation. Management options include endobronchial tamponade of the segment, vasoactive drugs, iced saline lavage, neodymium/yttrium-aluminum-garnet (Nd/ YAG) laser photocoagulation, electrocautery, bronchial artery embolization, and external beam or endobronchial irradiation.160

Nonpharmacological Interventions If cough is induced by a sensitive cough reflex, then the person should attempt to avoid the stimuli that produce this. They should stop or cut down smoking and avoid smoky rooms, cold air, exercise, and pungent chemicals. If

Dyspnea, Death Rattle, and Cough medication is causing the cough, it should be decreased or stopped if possible. If the cause is esophageal reflux, then elevation of the head of the bed may be tried. Adequate hydration, humidification of the air, and chest physiotherapy may help patients expectorate viscid sputum.174 Radiation therapy to enlarged nodes, endoscopically placed esophageal stents for tracheoesophageal fi stulas, or injection of Teflon into a paralyzed vocal cord may improve cough.174

Patient and Family Education Education should include practical matters such as proper use of medications, avoidance of irritants, use of humidification, and ways to improve the effectiveness of cough. One such way is called “huffing.” The person lies on his or her side, supports the abdomen with a pillow, blows out sharply three times, holds the breath, and then coughs. This technique seems to improve the effectiveness of a cough and helps to expel sputum. If the patient is having hemoptysis and massive bleeding is a possibility, it is important to educate the family about this possibility, to prepare them psychologically and develop a treatment plan. Dark towels or blankets can help to minimize the visual impact of this traumatic event. Adequate medications should be immediately available to control any anxiety or distress that might occur. Family and staff require emotional support after such an event.175

9= CASE STUDY JD, A 75-Year-Old Man with Metastatic Colon Cancer JD is a 75-year-old man who presented to his family doctor 2 months ago with a 20-pound weight loss, a bowel obstruction, a cough, and shortness of breath. He was found to have metastatic colon cancer with lung and liver metastases. He was treated with surgery and chemotherapy. You are visiting him at home and find that he now has a dry, nonproductive cough that keeps him awake at night and is sometimes so forceful that he vomits. He is receiving hydromorphone 4 mg orally every 4 hours for pain. He has had a trial of demulcents, dextromethorphan, inhalers and opioids for his cough, with little effect. He is afebrile and has no evidence of pneumonia on physical examination, but does have some fine crackles. You suggest a trial of nebulized preservativefree lidocaine every 6 hours. When you next see him, he reports that his cough is much better and that he has been able to get some rest. o]

Summary Chronic cough can be a disabling symptom for patients. If the underlying cause is unresponsive to treatment, then suppression of the cough is the major therapeutic goal.

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117. Make B. COPD: Management and rehabilitation. Am Fam Physician 1991;43:1315–1324. 118. Schwartzstein RM, Lahive K, Pope A, Weinberger SE, Weiss JW. Cold facial stimulation reduces breathlessness induced in normal subjects. Am Rev Respir Dis 1987;136:58–61. 119. Burgess KR, Whitelaw WA. Effects of nasal cold receptors on pattern of breathing. J Appl Physiol 1988;64:371–376. 120. Burgess KR, Whitelaw WA. Reducing ventilatory response to carbon dioxide by breathing cold air. Am Rev Respir Dis 1984;129:687–690. 121. Jobst K, Chen JH, McPherson J. Controlled trial of acupuncture for disabling breathlessness. Lancet 1986;2:1416–1418. 122. Maa SH, Gauthier D, Turner M. Acupressure as an adjunct to a pulmonary rehabilitation program. J Cardiopulm Rehabil 1997;17:268–276. 123. Filshie J, Penn K, Ashley S, Davis CL. Acupuncture for the relief of cancer-related breathlessness. Palliat Med 1996;10:145–150. 124. Renfroe KL. Effect of progressive relaxation on dyspnea and state anxiety in patients with chronic obstructive pulmonary disease. Heart Lung 1988;17:408–413. 125. Rosser RM, Denford J, Heslop A. Breathlessness and psychiatric morbidity in chronic bronchitis and emphysema: A study of psychotherapeutic management. Psychol Med 1983;13:93–110. 126. Corner J, Plant H, A’Hern R, Bailey C. Non-pharmacological intervention for breathlessness in lung cancer. Palliat Med 1996;10:299–305. 127. Carrieri VK, Janson-Bjerklie S. Strategies patients use to manage the sensation of dyspnea. West J Nurs Res 1986;8:284–305. 128. van den Berg R. Dyspnea: Perception or reality. CACCN 1995;6:16–19. 129. Moody LE, Fraser M, Yarandi H. Effects of guided imagery in patients with chronic bronchitis and emphysema. Clin Nurs Res 1993;2:478–486. 130. Giasson M, Bouchard L. Effect of therapeutic touch on the well-being of persons with terminal cancer. J Holistic Nurs 1998;16:383–398. 131. Shih F, Chu S. Comparisons of American-Chinese and Taiwanese patients’ perceptions of dyspnea and helpful nursing actions during the intensive care unit transition from cardiac surgery. Heart Lung 1999;28:41–54. 132. Tiep BL. Inpatient pulmonary rehabilitation: A team approach to the more fragile patient. Postgrad Med 1989;86:141–150. 133. Grey A. The nursing management of dyspnoea in palliative care. Nurs Times 1995;91:33–35. 134. Back IN, Jenkins K, Blower A, Beckhelling J. A study comparing hyoscine hydrobromide and glycopyrrolate in the treatment of death rattle. Palliat Med 2001;15:329–336. 135. Watts T, Jenkins K. Palliative care nurses’ feelings about death rattle. J Clin Nurs 1999;8:615–616. 136. Wildiers H, Menten J. Death rattle: Prevalence, prevention and treatment. J Pain Symptom Manage 2002;23:310–317. 137. Hughes AC, Wilcock A, Corcoran R. Management of death rattle. J Pain Symptom Manage 1996;12:271–272. 138. Ellershaw JE, Sutcliffe JM, Saunders CM. Dehydration and the dying patient. J Pain Symptom Manage 1995;10:192–197. 139. Morita T, Ichiki T, Tsunoda J, Inoue S, Chihara S. A prospective study on the dying process in terminally ill cancer patients. Am J Hospice Palliat Care 1998;15:217–222. 140. Kass RM, Ellershaw JE. Respiratory tract secretions in the dying patient: A retrospective study. J Pain Symptom Manage 2003;26:897–902.

Dyspnea, Death Rattle, and Cough 141. Morita T, Tsunoda J, Inoue S, Chihara S. Risk factors for death rattle in terminally ill cancer patients: A prospective exploratory study. Palliat Med 2000;14:19–23. 142. Morita T, Hyodo I, Yoshima T, et al. Incidence and underlying etiologies of bronchial secretion in terminally ill cancer patients: A multicenter, prospective, observational study. J Pain Symptom Manage 2004;27(6):533–539. 143. Bennett MI. Death rattle: An audit of hyoscine (scopolamine) use and review of management. J Pain Symptom Manage 1996;12:229–233. 144. Hall P, Schroder C, Weaver L. The last 48 hours of life in long-term care: A focused chart audit. J Am Geriatr Soc 2002;50:501–506. 145. Wee BL, Coleman PG, Hillier R, Holgate ST. Death rattle: Its impact on staff and volunteers in palliative care. Palliat Med 2008;22:173–176. 146. Wee BL, Coleman PG, Hillier R, Holgate SH. The sound of death rattle I: Are relatives distressed by hearing this sound? Palliat Med 2006;20:171–175. 147. Wee BL, Coleman PG, Hillier R, Holgate SH. The sound of death rattle II: How do relatives interpret the sound? Palliat Med 2006;20:177–181. 148. Nadel JA. Regulation of airway secretions. Chest 1985;87(1 Suppl):111S–113S. 149. Kaliner M, Shelhamer H, Borson B, Nadel JA, Patow C, Marom Z. Human respiratory mucus. Am Rev Respir Dis 1986;134:612–621. 150. Victoria Hospice Society. Medical Care of the Dying (3rd ed). Victoria, BC: Victoria Hospice Society, 1998. 151. Andrews MR, Levine AM. Dehydration in the terminal patient: Perception of hospice nurses. Am J Hosp Care 1989; 6:31–34. 152. Downing M. Victoria Respiratory Congestion Scale. 2004. Personal Communication. 153. Bennett M, Lucas V, Brennan M, Hughes A, O’Donnell V, Wee B. Using anti-muscarinic drugs in the management of death rattle: Evidence-based guidelines for palliative care. Palliat Med 2002;16:369–374. 154. Dawson HR. The use of transdermal scopolamine in the control of death rattle. J Palliat Care 1989;5:31–33. 155. Lichter I, Hunt E. The last 48 hours of life. J Palliat Care 1990;6:7–15. 156. Murtagh FEM, Thorns A, Oliver DJ. Correspondence: Hyoscine and glycopyrrolate for death rattle. Palliat Med 2002;16:449–450. 157. Morice AH, Kastelik JA. Cough 1: Chronic cough in adults. Thorax 2003;58:901–907.

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158. Muers MF, Round CE. Palliation of symptoms in non-small cell lung cancer: A study by the Yorkshire Regional Cancer Organisation thoracic group. Thorax 1993;48:339–343. 159. Homsi J, Walsh D, Nelson KA. Important drugs for cough in advanced cancer. Support Care Cancer 2001;9:565–574. 160. Kvale PA, Simoff M, Prakash UBS. Palliative care. Chest 2003;123:284S–311S. 161. Fuller RW, Jackson DM. Physiology and treatment of cough. Thorax 1990;45:425–430. 162. Lalloo UG, Barnes PJ, Chung KF. Pathophysiology and clinical presentations of cough. J Allergy Clin Immunol 1996;98(5, Part 2):S91–S97. 163. Morice AH, McGarvey L, Pavord I. Recommendations for the management of cough in adults. Thorax 2006;61(Suppl 1):i1– i24; doi:10.1136/thx.2006.065144. 164. Dudgeon D, Rosenthal S. Pathophysiology and assessment of dyspnea in the patient with cancer. In: Portenoy RK, Bruera E, eds. Topics in Palliative Care. New York: Oxford University Press, 1999:237–254. 165. Ripamonti C, Fusco F. Respiratory problems in advanced cancer. Support Care Cancer 2002;10:204–216. 166. Hagen NA. An approach to cough in cancer patients. J Pain Symptom Manage 1991;6:257–262. 167. Eddy NB, Friebel H, Hahn KJ, Halbach H. Codeine and its alternatives for pain and cough relief. Potential alternatives for cough relief. Bull World Health Organ 1969;40:639–719. 168. Eddy NB, Friebel H, Hahn KJ, Halbach H. Codeine and its alternatives for pain and cough relief. Discussion and summary. Bull World Health Organ 1969;40:721–730. 169. Doona M, Walsh D. Benzonatate for opioid-resistant cough in advanced cancer. Palliat Med 1997;12:55–58. 170. Lowry R, Wood A, Johnson T, Higenbottam T. Antitussive properties of inhaled bronchodilators on induced cough. Chest 1988;93:1186–1189. 171. Louie K, Bertolino M, Fainsinger R. Management of intractable cough. J Palliat Care 1992;8:46–48. 172. Howard P, Cayton RM, Brennan SR, Anderson PB. Lignocaine aerosol and persistent cough. Br J Dis Chest 1977;71:19–24. 173. Sanders RV, Kirkpatrick MB. Prolonged suppression of cough after inhalation of Lidocaine in a patient with sarcoid. JAMA 1984;252:2456–2457. 174. Cowcher K, Hanks GW. Long-term management of respiratory symptoms in advanced cancer. J Pain Symptom Manage 1990;5:320–330. 175. Dudgeon D, Rosenthal S. Pathophysiology and treatment of cough. In: Portenoy R, Bruera E, eds. Topics in Palliative Care. New York: Oxford University Press, 2000:237–254.


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Mikel Gray and Terran Sims

Urinary Tract Disorders As if being sick and dying isn’t enough—it’s all the indignity before you go. Losing control of my bladder and feeling like a baby in diapers has been the worst . . . when my daughter came and saw me like this (with the diaper), that’s when she just lost it.—A patient

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Key Points The urinary system is frequently the cause of bothersome or deleterious symptoms that affect the patient receiving palliative care. A malignancy or systemic disease may affect urinary tract function and produce urinary incontinence, urinary retention, or upper urinary tract obstruction. Common lower urinary tract symptoms (LUTS) include urinary incontinence, daytime voiding frequency, nocturia, urgency, feelings of incomplete bladder emptying, and incomplete bladder emptying. Upper urinary tract symptoms include flank or abdominal pain and constitutional symptoms related to acute renal insufficiency or failure. Significant hematuria leading to clot formation and catheter blockage is an uncommon but significant complication of pelvic radiation therapy. Hematuria may occur months to years following radiotherapy. Initial treatment of hematuria includes continuous bladder irrigation to evacuate clots from the bladder vesicle until the fragile bladder wall heals. If hematuria recurs, more aggressive treatment options include intravesical alum or prostaglandins. Intravesical formalin treatments are reserved for very severe cases of blood loss. Bladder spasms (overactive detrusor contractions) may be associated with urinary tract infection or catheter blockage, or they may be idiopathic. Any apparent underlying cause of bladder spasms, such as a urinary tract infection, should be treated initially. An antimuscarinic medication should be used for long-term relief of bladder spasms. Extended-release or transdermal agents are usually preferred because of their favorable side effect profiles and avoidance of the need for frequent dosing. However, immediate release agents may be adminstered if bladder spasms prove refractory to extended release formulations. Indwelling catheterization is a viable option for managing urine elimination in the patient who is near death and has urinary retention, or when pain or immobility significantly impairs the ability to urinate. A suprapubic catheter may be used as an alternative to urethral catheterization after urethral trauma or in the presence of urethral obstruction in cases of urethral injury, strictures, prostate obstruction, after gynecologic surgery, or for long-term catheterization.

In many ways, the techniques used for management of urinary symptoms are similar to those used for patients in any care setting. However, in contrast to traditional interventions, the evaluation and management of urinary tract symptoms in the palliative care setting are influenced by considerations of the goals of care and closeness to death. Urinary system disorders may be directly attributable to a malignancy, systemic disease, or a specific treatment such as radiation or chemotherapy. This chapter provides an overview of the anatomy and physiology of the urinary system, which serves as a framework for understanding of the pathophysiology of bothersome symptoms and their management. This is followed by a review of commonly encountered urinary symptoms seen in the palliative care setting, including bothersome lower urinary tract symptoms (LUTS), lower urinary tract pain, urinary stasis or retention, and hematuria.

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Lower Urinary Tract Disorders Lower Urinary Tract Physiology The lower urinary tract comprises the bladder, urethra, and supportive structures within the pelvic floor (Figures 15–1 and 15–2). Together, these structures maintain urinary continence, which can be simply defined as control over bladder fi lling and storage and the act of micturition. Continence is modulated by three interrelated factors: (1) anatomic integrity of the urinary tract, (2) control of the detrusor muscle, and (3) competence of the urethral sphincter mechanism.1,2 Each may be compromised in the patient receiving palliative care, leading to bothersome LUTS, urinary retention, or a combination of these disorders.

Anatomic Integrity From a physiological perspective, the urinary system comprises a long tube originating in the glomerulus and 321

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Symptom Assessment and Management elimination habits to total UI characterized by failure of bladder fi lling and micturition.

Control of the Detrusor

Kidney Renal Pelvis Ureteropelvic Junction (UPJ) Ureter

Urinary Bladder

Urethra

Figure 15–1. The female urinary tract.

Kidney Renal Pelvis Ureteropelvic Junction (UPJ) Ureter Urinary Bladder Prostate Urethra

Figure 15–2. The male urinary tract.

terminating at the urethral meatus. When contemplating urinary continence, anatomic integrity of the urinary system is often assumed, particularly because extraurethral urinary incontinence (UI) is uncommon. However, anatomical integrity may be lost in the patient receiving palliative care when a fistula bypasses the urethral sphincter. This epithelialized tract allows continuous urinary leakage, which varies from an ongoing dribble in a patient with otherwise normal urine

In addition to a structurally intact urinary system, continence requires volitional control over detrusor contraction.1,2 Control of this smooth muscle can be conceptualized on three levels. Multiple modulatory centers within the central nervous system modulate lower urinary tract function, ensuring low pressure bladder filling and micturition only when the person wishes to urinate. Detrusor control is also influenced by its histological characteristics, and on a molecular level by neurotransmitters released within the neuromuscular junction. The nervous control of the detrusor arises from multiple modulatory areas within the brain and spinal cord.3 Bilateral modulatory centers are found in the cerebral cortex; they are involved with bladder fi lling and storage, and more recent evidence suggests that they play a more active role in the decision to urinate than previously thought.4 These modulatory centers interact with neurons in the thalamus,5 hypothalamus,6 basal ganglia,7 and cerebellum8 to modulate bladder fi lling and voiding. Data from functional MRI and PET scans reveal that each of these areas is involved with bladder fi lling and/or micturition, leading to new questions and new insights into the relationships between cognition, emotional state, mood and lower urinary tract symptoms.3,4 Whereas modulatory centers within the brain are essential for continence, the primary integration centers for bladder fi lling and micturition are found within the brainstem.9 Specific areas within the brainstem control bladder fi lling and storage under the influence of higher brain regions. These areas include the periaqueductal gray matter, which is responsible for coordinating multiple groups of neurons in the brainstem; the L and M regions, which modulate bladder fi lling and initiate the detrusor contraction; and the pontine micturition center, which coordinates the reflexive response of the urethral sphincter mechanism. Recognition of the significance of the brainstem micturition center is particularly important when providing palliative care, because a neurological lesion above the brainstem causes urge UI with a coordinated sphincter response, whereas lesions below this center affect bladder sensations and the coordination between the detrusor and the urethral sphincter, resulting in reflex UI. The brainstem micturition center communicates with the bladder via spinal roots in the thoracolumbar and sacral segments.3 Neurons in the thoracolumbar spine (T10–L2) transmit sympathetic nervous impulses that promote bladder fi lling and storage, whereas neurons in spinal segments S2–S4 transmit parasympathetic impulses to the bladder wall, promoting micturition under the influence of the brain and brain-stem. These impulses are carried through several peripheral nerve plexi, including the pelvic and inferior hypogastric plexi. Histological characteristics of the detrusor also contribute to its voluntary control.10 Unlike the visceral smooth muscle

Urinary Tract Disorders of the bowel, stomach, or ureter, the detrusor muscle bundles are innervated on an almost one-to-one basis, reflecting the critical importance of the neurological modulation described above. The smooth muscle bundles of the detrusor also lack gap junctions, observed in other visceral organs, which allow propagation of a contraction independent of nervous stimulation. These characteristics promote urinary continence because they discourage spontaneous contractions of the detrusor in response to bladder fi lling, as is characteristic of other visceral organs. On a molecular level, specific chemical substances, commonly called neurotransmitters, exert local control over the detrusor muscle.2 Several neurotransmitters are released from the axons of neurons within the bladder wall and act at specific receptors to produce smooth muscle contraction or relaxation. Norepinephrine acts through β3-adrenergic receptors, promoting detrusor muscle relaxation, and acetylcholine acts through muscarinic receptors, leading to detrusor contraction and micturition. Although it has long been known that the cholinergic receptors within the detrusor are muscarinic, physiological studies have identified at least five muscarinic receptor subtypes (M1 through M5) in the human body.11 Two receptor subtypes, M2 and M3, are believed to predominate within the bladder wall and are primarily responsible for the detrusor contraction that leads to micturition.12 Identification of these receptor subtypes is clinically relevant because it has facilitated the development of drugs that act on the bladder but produce fewer central nervous system side effects than the older (nonselective) drugs traditionally used to manage urge UI or bladder spasms.

Competence of the Urethral Sphincter Mechanism The urethral sphincter is a combination of compressive and tension elements that form a watertight seal against urinary leakage, even when challenged by physical exertion or sudden increases in abdominal pressure caused by coughing, laughing, or sneezing.1,2 The soft urethral mucosa interacts with mucosal secretions (glycosaminoglycans) and the submucosal vascular cushion to ensure a watertight seal that rapidly conforms to changes. Whereas the elements of compression provide a watertight seal for the urethra, striated and smooth muscle within the urethral wall and within the surrounding pelvic floor are necessary when sphincter closure is challenged by physical exertion. The muscular elements of the urethral sphincter include the smooth muscle of the bladder neck and proximal urethra (including the prostatic urethra in men), the rhabdosphincter, and the periurethral striated muscles. α1-Adrenergic receptors in the smooth muscle of the bladder neck and proximal urethra promote sphincter closure when exposed to the neurotransmitter norepinephrine.13 Innervation of the rhabdosphincter is more complex. Acetylcholine acts on nicotinic receptors in the rhabdosphincter to stimulate muscle contraction. In addition, norepinephrine and serotonin (5HT) act on neurons

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within Onuf’s nucleus (located at sacral spinal segments 2 through 4), modulating rhabdosphincter tone during bladder fi lling and storage.14

Pathophysiology of Urinary Incontinence Urinary incontinence is defined as the uncontrolled loss of urine of sufficient magnitude to create a problem.15 It can be divided into two types: transient (acute) and chronic, based on onset and underlying etiology.16 Factors resulting in transient UI clearly contribute to urinary leakage, but they often arise from outside the lower urinary tract. Therefore, treatment of transient UI is typically aimed at the contributing factor, rather than the urinary system itself. Several conditions associated with transient UI are commonly encountered when caring for patients in a palliative care setting; they include delirium, urinary tract infection, adverse side effects of various drugs, restricted mobility, and severe constipation or stool impaction (Table 15–1). Chronic UI is subdivided into types according to its presenting symptoms or underlying pathophysiology.16 Stress UI occurs when physical stress (exertion) causes urine loss in the absence of a detrusor contraction. Two conditions lead to stress UI—urethral hypermobility (descent of the bladder base during physical activity) and intrinsic sphincter deficiency (incompetence of the striated or smooth muscle within the urethral sphincter mechanism). Although urethral hypermobility is rarely the primary cause of significant stress UI in the patient receiving palliative care, intrinsic sphincter deficiency may compromise sphincter closure and lead to severe urinary leakage. Intrinsic sphincter deficiency occurs when the nerves or muscles necessary for sphincter closure are denervated or damaged.17 Table 15–2 lists conditions that are likely to cause intrinsic sphincter deficiency in patients receiving palliative care. Urge UI occurs when overactive detrusor contractions produce urinary leakage.16 Urge UI is part of a larger symptom syndrome called overactive bladder. Overactive bladder is characterized by urgency (a sudden desire to urinate that is difficult to defer), and it is typically associated with daytime voiding frequency (more than every 2 hours) and nocturia (≥3 episodes per night). Reflex UI, in contrast, is caused by a neurological lesion below the brainstem micturition center.18 It is characterized by diminished or absent sensations of bladder fi lling, neurogenic overactive detrusor contractions associated with urinary leakage, and a loss of coordination between the detrusor and sphincter muscles (detrusor– sphincter dyssynergia). Functional UI occurs when long-standing deficits in mobility, dexterity, or cognition cause or contribute to urinary leakage. A variety of conditions may produce functional UI in the patient receiving palliative care. For example, neurological deficits or pain may reduce the patient’s ability to reach the toilet in a timely fashion. Cognitive deficits caused by malignancies or diseases of the brain may predispose the patient to functional UI. In addition, sedative or analgesic

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Table 15–1 Causes of Acute Urinary Incontinence (DIAPERS Mnemonic) Associated Factor

Effect on Continence

Delirium, confusion

Reduces patient’s ability to recognize and respond to cues to urinate, resulting in daytime or nighttime UI episodes. May exacerbate or create transient UI, especially in patients with history of UI or overactive bladder dysfunction. Multiple classes of drugs predispose vulnerable patients to UI; diuretics increase urine production, potentially increasing frequency and risk for overactive detrusor contractions; antidepressants, sedatives, sleeping medications, or opioid analgesics may reduce the individal’s ability to detect or respond to cues to toilet. Polyuria associated with diabetes mellitus, diabetes insipidus, chronic venous disease, chronic heart failure, renal insufficiency, or high volume fluid intake increases urine production, potentially increasing voiding frequency and risk for overactive detrusor contractions. Immobility, secondary to pain to as a direct result of a disease process affecting neuromuscular function, impairs the individual’s ability to respond to cues to toilet and to access toilet facilities. Exact mechanism is unknown; distension of the rectal valut may reduce bladder capacity and cause functional obstruction by reflex increase in pelvic floor muscle tone, as the valut fi lls with stool.

Urinary tract infection Various drugs

Excessive urine output

Restricted mobility

Constipation or stool impaction

Table 15–2 Causes of Intrinsic Sphincter Deficiency in the Patient Receiving Palliative Care Urethral surgery Radical prostatectomy Transurethral prostatectomy Cryosurgery Multiple urethral suspensions in women Surgery indirectly affecting the urethra via local denervation Abdominoperineal resection Pelvic exenteration Radical hysterectomy Neurological lesions of the lower spine Primary or metastatic tumors of the sacral spine Pathological fracture of the sacral spinal column Multiple sclerosis Tertiary syphilis

medications may reduce awareness of bladder fullness and the need to urinate, particularly in the patient who experiences nocturia. Recently, a Wound, Ostomy and Continence Nurse Practitioner worked with the US Centers for Medicare and Medicaid Services to define an ICD-9 code for Functional Incontinence, which will be particularly useful for palliative care nurses providing services for this common cause of urinary leakage.19 Extraurethral UI occurs when a fistula creates an opening between the bladder and the vagina or skin, allowing urine to bypass the urethral sphincter. Within the context of palliative care, fistulas are usually caused by invasive pelvic or

gynecological malignancies, extensive pelvic surgery, or radiation treatment.

Bladder Spasm Bladder spasms may be defined as a painful contraction of the bladder. Their pathophysiology is not well understood, but they are probably caused by an overactive detrusor contraction against a closed or partially blocked bladder outlet. Patients with bladder outlet obstruction due to a urologic malignancy obstructing the bladder outlet, or secondary blockage from a tumor outside the urinary tract, are at risk for bladder spasm. Foreign objects within the urinary tract, such as indwelling urinary catheters or ureteral stents, are also associated with an increased risk for bladder spasm, presumably because of their irritative effect on the urinary mucosa.20 Instillation of potentially caustic substances into the bladder to treat significant hematuria or a urothelial tumor, or recent urologic surgery also may result in bladder spasm owing to their irritative effects.21,22

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Assessment and Management of Bothersome LUTS The results of a focused history, physical assessment, urinalysis, and bladder log are essential for the evaluation of UI in the patient receiving palliative care. Urine culture and sensitivity testing, blood tests, urodynamic evaluation, or imaging studies also may be completed in specific cases. The history focuses on the duration of the problem and the probable cause of bothersome lower urinary tract symptoms. Transient UI is typically characterized by a sudden

Urinary Tract Disorders occurrence of urinary leakage or an acute exacerbation of preexisting symptoms. These symptoms are typically similar to those of urge or stress UI. In contrast, chronic or established UI usually evolves over a period of time, typically months or possibly years. The history can also be used to provide clues about the type of chronic UI. Stress UI is characterized by urine loss occurring with physical exertion or a sudden increase in abdominal pressure caused by coughing or sneezing. It occurs in the absence of a precipitous and strong urge to urinate. Approximately 36 of patients with overactive bladder syndrome experience urge UI.23 (The diagnosis of overactive bladder is based on a combination of symptoms: diurnal voiding frequency, nocturia, and urgency with or without the symptom of urge UI).24 A diagnosis of overactive bladder cannot be inferred from a report of the symptom of urge UI alone. Reflex UI is suspected in the patient who experiences a paralyzing neurological lesion that affects spinal segments below the brainstem and above S2.18 The patient frequently reports periodic urination with little or no warning and little or no associated urgency. The urinary stream may be intermittent (stuttering), and the patient may perceive a sensation of incomplete bladder emptying or report additional urinary leakage soon after completion of micturition. Bladder spasms are diagnosed when a patient reports painful episodes localized to the suprapubic or lower abdomen.20,25 These pains are usually characterized by a sudden onset, and described as stabbing, cramping or colicky. They are often associated with urgency and may produce bypassing of urine around an indwelling urinary catheter or urethral leakage if a suprapubic catheter is in place. Functional UI is suspected when a general evaluation of the patient reveals significant limitations in mobility, dexterity, or cognition.26 Continuous urinary leakage that is not associated with physical exertion raises the suspicion of extraurethral UI associated with a fistula, but it is also associated with severe stress UI caused by intrinsic sphincter deficiency. A focused physical examination provides additional evidence concerning the UI type and its severity. A general examination is used to evaluate the presence of functional UI and to determine the influence of functional limitations on other types of UI. A pelvic examination is completed to assess perineal skin integrity, to identify the presence of obvious fistulas or severe sphincter incompetence, and to evaluate local neurological function. Altered skin integrity, particularly if accompanied by a monilial rash or irritant dermatitis, indicates high-volume (severe) urinary leakage. In certain cases, the source of severe leakage can be easily identified as a large fistula or massive intrinsic sphincter deficiency associated with a gaping (patulous) urethra. A local neurological examination, focusing on local sensations, pelvic floor muscle tone, and the presence of the bulbocavernosus reflex, provides clues to underlying neurological problems leading to voiding dysfunction. A bladder log (a written record of the timing of urination, volume, timing of UI episodes, and fluid intake) is useful because it allows a semiquantitative analysis of the patterns

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of urinary elimination, UI, and associated symptoms. It can also be used to assess fluid intake or the patient’s response to prompted voiding.27 The patient is taught to record the time of voluntary urination, episodes of incontinence and associated factors (urgency, physical activity), and type and amount of fluids consumed. This record is used to determine voiding interval, frequency of UI episodes along with associated factors, and the total volume and types of fluids consumed. Recording fluid intake allows the nurse to calculate the cumulative volume of fluids consumed each day, as well as the proportion of fluids containing caffeine or alcohol— substances that exacerbate bothersome LUTS. A 3-day bladder log is strongly recommended, but valuable information can be obtained from a 1- or 2-day document if a 3-day record is not available.28 Urinalysis serves several useful purposes in the evaluation of the patient with UI. The presence of nitrites and leukocytes on dipstick analysis or bacteriuria and pyuria on microscopic analysis indicates a clinically relevant urinary tract infection. Blood in the urine may coexist with a urinary tract infection, or it may indicate significant hematuria demanding prompt management (see later discussion). In the patient receiving palliative care, glucosuria may indicate poorly controlled diabetes mellitus causing osmotic diuresis and subsequent UI. In contrast, a low specific gravity may indicate diabetes mellitus or excessive fluid intake from oral or parenteral sources. Other diagnostic tests are completed when indicated. For example, a urine culture and sensitivity analysis is obtained if the urinalysis reveals bacteriuria and pyuria, and an endoscopy is indicated if significant hematuria is present without an obvious explanation. Urodynamic testing is indicated in selected patients after transient UI is excluded and when simpler examinations have failed to establish an accurate diagnosis leading to an effective plan for management. The management of UI is based on its type, the desires of the patient and family, and the presence of complicating factors. Transient UI is managed by addressing its underlying cause.29 Acute delirium is managed by treating the underlying infection of disease causing the delirium, if feasible. A urinary tract infection is treated with sensitivity-driven antibiotics. Similarly, medication regimens are altered as feasible if they produce or exacerbate UI. Fecal impaction must be relieved and constipation aggressively managed. After initial disimpaction, a scheduled elimination program is frequently indicated. This program usually combines a peristaltic stimulant, such as a warm cup of coffee or tea, a mini-enema, or a suppository, and a scheduled elimination program. In addition, stool softeners or laxatives may be used if simpler programs fail to alleviate constipation. These interventions are combined with increased fluid intake as indicated and addition of fiber to the diet whenever feasible. Refer to Chapter 12 for a detailed discussion of bowel elimination problems. A number of techniques are used to manage chronic or established UI. Every patient should be counseled about lifestyle alterations that may alleviate or occasionally relieve UI and associated LUTS.30,31 Patients are advised to avoid

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routinely restricting fluid intake to reduce UI, because this strategy only increases the risk of constipation and concentrates the urine, irritating the bladder wall. Instead, they should be counseled to obtain the recommended daily allowance for fluids (30 mL/kg or 0.5 oz/lb),32 to sip fluids throughout the day, and to avoid intake of large volumes of fluids over a brief period. Patients may also be taught to reduce or avoid bladder irritants that increase urine production or stimulate detrusor muscle tone, including caffeine and alcohol, depending on the goals of care and the short-term prognosis. Containment devices may be used to provide protection while treatments designed to address underlying UI are undertaken, or they may be used for added protection if these interventions improve but fail to eradicate urine loss.33 Women and men should be counseled about the disadvantages of using home products and feminine hygiene pads when attempting to contain urine. Specifically, they should be counseled that home products, such as tissues or paper towels, are not designed to contain urine, and feminine hygiene products are designed to contain menstrual flow. As an alternative, patients should be advised about products specifically designed for UI, including disposable and reusable products, inserted pads, and containment undergarments. If the patient experiences primarily stress UI, the initial management is with behavioral methods, often combined with use of absorptive products. Pelvic floor muscle training is strongly recommended for mild to moderate stress UI,34 but its applicability in the palliative care setting is limited. Instead, the patient may be taught a maneuver called the “knack.” The knack describes a pelvic floor muscle contraction completed in response to physical exertion.35 The patient is taught to identify, contract and relax the pelvic floor muscles, typically using some form of biofeedback. Biofeedback provides sensory, audible or palpatory cues allowing the patient to identify the pelvic floor muscles, and to differentiate contraction of these muscles from the abdominals, gluteal or thigh muscles. Simple biofeedback maneuvers include assisting the patient to identify the pelvic floor muscles during a gentle vaginal or digital rectal examination, asking the patient to interrupt the urinary stream, or asking the patient to contract and relax while seated on a chair with a firm seat in order to maxzimize proprioception. After learning to identify, contract and relax the pelvic floor muscles, the patient is taught to maximally contract (squeeze) these muscles when performing a maneuver associated with urine loss such as coughing, sneezing, walking or bending over to don socks. This maneuver increases urethral closure and resistance to UI and relieves or prevents stress UI. It is generally preferred in the palliative care setting because it provides some relief from stress UI within a comparatively brief period of time (usually within days to a week) as compared to more formalized pelvic floor muscle training requiring 3–6 months. Medications also may be used to treat stress UI in selected cases. Imipramine, a tricyclic antidepressant with both α-adrenergic effects that increase urethral resistance and anticholinergic actions, may be useful for patients who experience

stress UI or mixed stress and urge UI symptoms.36 Duloxetine, a norepinephrine and serotonin reuptake inhibitor, acts on neurons in Onuf’s nucleus—nuclei located in spinal segments S2–4 that modulate rhabdosphincter tone in women and men—and has been found to relieve stress UI in women.37 Duloxetine has been approved by the US Food and Drug Administration for treatment of depression, but not stress UI, and its use for this indication is classified as off-label. Although both imipramine and duloxetine have the potential to alleviate stress UI, their benefits must be weighed carefully against the potential for side effects. Common side effects of imipramine include anticholinergic effects such as dry mouth, blurred vision, flushing, and heat intolerance. Imipramine also may affect the central nervous system and may be associated with short-term memory impairment, hallucinations, and nightmares. These side effects may be particularly significant in aged patients and in those with preexisting cognitive defects related to a primary tumor or disease. Common side effects of duloxetine include nausea (occurring in up to 38), drowsiness, dry mouth, and constipation. Among patients with clinical depression, it has been associated with anxiety, agitation, anger, panic attacks and temporary suicidal thoughts or actions.38 An indwelling catheter may be inserted if intrinsic sphincter deficiency and subsequent stress UI are severe. Although not usually indicated, a larger catheter size may be required to prevent urinary leakage (bypassing) around the catheter.39 A detailed discussion of catheter management is provided later in this chapter. Overactive bladder dysfunction, with or without urge UI, is also managed by behavioral or pharmacological modalities (or both) whenever possible.40 Behavioral interventions include reduction or avoidance of bladder irritants such as caffeine and modification of fluid intake described previously. The patient can also be taught to identify, isolate, contract and relax the pelvic floor muscles using principles described above. These skills are applied to a technique called urge suppression, which is used to inhibit specific episodes of urgency before UI occurs. When a sudden urge to urinate occurs, the patient is taught to stop, tighten the pelvic muscles in rapid succession using several “quick flick” contractions until the urge has subsided, and proceed to the bathroom at a normal pace. The patient also may be taught relaxation or other distraction techniques to cope with specific urge episodes. Behavioral methods are particularly helpful for the patient who is at risk for falling and related injuries. Antimuscarinic medications are often used to manage overactive bladder syndrome and urge UI. Multiple agents are available. Novel agents are usually preferred because they can be taken on daily basis promoting adherence,41 and they tend to have less pronounced agents than the older classic drugs within this class.40 Antimuscarinic medications block acetyl choline from binding to cholinergic receptors in the bladder wall. This increases functional bladder capacity, inhibits overactive detrusor contractions and associated incontinence episodes, and reduces voiding frequency. The principal side effect of all these agents is dry mouth, which can be severe

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Table 15–3 Pharmacologic Management for Overactive Bladder and Urge Urinary Incontinence Antimuscarinic Drugs Dosage

Nursing Considerations

Tolterodine ER (Detrol LA)

2–4 mg daily

Oxybutynin IR (Ditropan IR)

5 mg twice daily to three times daily

Oxybutinin ER (Ditropan XL)

5–15 mg daily

Oxybutynin TDS (Oxytrol)

3.9 mg patch twice weekly

Solifenacin (Vesicare)

5–10 mg daily

Darifenacin (Enablex)

7.5–15 mg daily

Trospium ER (Sactura XR)

60 mg daily

Fesoterodine ER (Toviaz)

4–8 mg daily

May be administered at night to reduce dry mouth; administration with antacid or proton pump inhibitor may reduce bioavailability of drug; does not cross blood–brain barrier as readily as oxybutynin IR; the lower (2 mg) dose is recommended for patients with imparied hepatic function. Associated with higher incidence of moderate to severe dry mouth than extended release agents; readily crosses blood–brain barrier, potentially increasing the risk of centeral nervous side effects. Administered via osmotic releasing system; advise patient that skeleton of tablet will be pass in stool 24–48 hours after ingestion; incidence and severity of dry mouth less than IR formulation; may be administered at bedtime to reduce dry mouth. Incidence of dry mouth not statistically different than placebo in pivotal trials; transdermal delivery systems avoids first-pass effects of oral drug formulations, increasing bioavailability of drug; local skin irritation associated with use of patch not seen with oral agents. Half life of drug approximately 45–68 hours; may be administered at night to minimize dry mouth; use with caution in patients with impared hepatic function Drug has greater affi nity for M3 muscarinic receptors; this receptor type is common in the bladder wall, bowel and other periperal organs, but absent in the central nervous system, reducing the potential for adverse central nervous system side effects; constipation rates reported in pivotal trial for this drug are higher than other drugs, possibly associated with presence of M3 receptors in bowel wall. Drug is primarily excreted in urine rather than metabolized in liver, should be administered on empty stomach to maximize bioavailability; comparatively large size of tropsium molecule (it is a quartenary amine) and lipophobic properties reduce likelihood drug will cross blood–brain barrier producing central nervous system side effects. Lower dosage not required for mild to moderate impairment of hepatic function; may be administered at bedtime to reduce dry mouth.

and can interfere with appetite and mastication.36 Other side effects include blurred vision, constipation, flushing, heat intolerance, and cognitive effects such as nightmares or altered short-term memory. Table 15–3 describes pharmacologic options for managing overactive bladder and urge UI and related nursing considerations.41–45 Although antimuscarinic medications are often viewed as an alternative to behavioral therapies, they are better viewed as complementary modalities.46 Specifically, all patients who wish to use antimuscarinic medications for overactive bladder or urge UI should be advised to void according to a timed schedule (usually every 2 to 3 hours, depending on the urinary frequency documented on a bladder log obtained during assessment), and taught urge-suppression skills. Similarly, patients whose lower urinary tract symptoms are not managed adequately by behavioral methods should be counseled about antimuscarinic medications before placement of an indwelling catheter is considered. Nevertheless, use of a catheter is often necessary for patients managed in a palliative care setting. Traditionally, indwelling catheters have been preferred, but external collection devices often provide a viable alternative to indwelling devices in men.

9= CASE STUDY Mr. M, A Patient with Incontinence and Condom Catheter Mr. M is a 58-year-old male who was diagnosed with a high grade, small-cell carcinoma of the prostate. He initially responded to androgen deprivation therapy, but his tumor ultimately became hormone independent and he experienced local extension of the tumor and distant metastases. He began chemotherapy with cisplatin and etoposide but developed urinary incontinence. His oncology team stated that monitoring urinary output while on this chemotherapy regimen was important, and his urinary leakage rendered this especially challenging. In addition to the need to monitor urine output during chemotherapy, his urinary incontinence led to incontinence-associated dermatitis, characterized by inflamed and eroded skin. He wished to continue his work, which remained an essential part of his identity, as long as possible, but he was also bothered by the social stigma of urine loss and the need to wear an adult containment brief (an “adult diaper” as he

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described it). Mr. M was therefore referred for discussion of options to the urology clinic. After discussing multiple options, he elected to have a #16 French, all silicone indwelling urinary catheter placed initially to control his urine loss and to enable monitoring of urinary output. However, he found the catheter uncomfortable, and reported experiencing bladder spasms. At this point, he wanted to explore other options for treating his urinary incontinence. Discussion with the oncology team also focused on the potential risk of infection using long-term catheters in a patient with chemotherapy immunosuppression. The urology nursing team was able to fit the patient with an external collecting device (condom catheter) for daily use and an adaptor for the collection bag connection. He was taught how to place the catheter securely and attach the collection bag. This option also enabled him to remove the catheter if he regained urinary continence following his chemotherapy. As the chemotherapy began to reduce the size of his prostatic tumor, Mr. M experienced increasing daytime continence and he was able to restrict use of the external collecting device to nights only. After three cycles of chemotherapy, he regained urinary control and no longer required the condom catheter until his tumor ultimately returned and death occurred. Nevertheless, Mr. M made a special trip to visit the urology nursing team and express how satisfied he was that he could remain “diaper free” and continue his work, which meant so much to his identity and self esteem. o] Application of a condom catheter or hydrocolloid-based external collection device is indicated when urge UI is severe and refractory of other treatments.47,48 Alternatively, an indwelling catheter may be inserted in women or men who are unable to wear an external device. Indwelling catheterization is also indicated if urge UI is complicated by clinically relevant urinary retention or if the patient is near death and immobile. Because reflex UI is typically associated with diminished sensations of bladder filling, it is not usually responsive to behavioral treatments.18 A minority of patients with reflex UI retain the ability to urinate spontaneously, but most cases must be managed with an alternative program. For men, an external collection device may be used to contain urine. Several devices are available, including a hydrocolloid-based collection device.47,48 This device attaches to the glans penis, without covering the penile shaft. Multiple condom catheters are also available. A latex-free device is typically selected, preferably with adhesive incorporated into the wall of the condom. In some patients, an α-adrenergic blocking agent such as terazosin, doxazosin, tamsulosin, or alfuzosin is administered, to minimize the obstruction caused by detrusor–sphincter dyssynergia.49 Intermittent catheterization is encouraged whenever feasible. The patient and at least one significant other should be taught a clean intermittent catheterization technique. For the patient with reflex UI, an anticholinergic medication is usually required in addition to catheterization, to prevent UI. If intermittent

catheterization is not feasible or if reflex UI develops near the end of life, an indwelling catheter may be inserted. Although the indwelling catheter is associated with serious long-term complications and is avoided in patients with spinal cord injury and a significant life expectancy, it remains a viable alternative for the patient receiving palliative care. Functional UI is treated by minimizing barriers to toileting and the time required to prepare for urination.50,51 Strategies designed to remove barriers to toileting are highly individualized and are best formulated with the use of a multidisciplinary team, combining nursing with medicine, as well as physical and occupational therapy as indicated. Strategies used to maximize mobility and access to the toilet include using assistive devices such as a walker or wheelchair, widening bathroom doors, adding support bars, and providing a bedside toilet or urinal. The time required for toileting may be reduced by selected alterations in the patient’s clothing, such as substituting tennis shoes with good traction for slippers or other footwear with slick soles and substituting Velcro- or elastic-banded clothing for articles with multiple buttons, zippers, or snaps. If the patient has significant contributing cognitive disorders, functional UI is usually managed by a prompted voiding program.52,53 Baseline evaluation includes a specialized bladder log, which is completed over a 48- to 72-hour period. The caregiver is taught to assist the patient to void on a fi xed schedule, usually every 2 to 3 hours. The caregiver is taught to help the patient move to the toilet and prepare for urination; the caregiver also uses this opportunity to determine whether the pad incontinence brief reveals evidence of UI since the previous scheduled toileting. Patients who are successful, dry, and able to urinate with prompting on more than 50 of attempts completed during this trial period are considered good candidates for an ongoing prompted voiding regimen; those who are unsuccessful are considered poor candidates and are managed by alternative methods, including indwelling catheterization in highly selected cases. Because extraurethral UI is caused by a fistulous tract and produces continuous urinary leakage, it must be managed initially by containment devices and preventive skin care. The type of containment device depends on the severity of the UI; an incontinent brief is frequently required. In some cases, the fistula may be closed by conservative (nonsurgical) means. An indwelling catheter is inserted, and the fistula is allowed to heal spontaneously.54 This intervention is most likely to work for a traumatic (postoperative) fistula. If the fistula is a result of an invasive tumor or radiation therapy, it is not as likely to heal spontaneously. In such cases, cauterization and fibrin glue may be used to promote closure.55 Alternatively, a suspension containing tetracycline may be prepared and used as a sclerosing agent. The adjacent skin is prepared by applying a skin protectant (such as a petrolatum, dimethicone or zinc oxide-based ointment) to protect it from the sclerosing agent. Approximately 5 to 10 mL of the tetracycline solution is injected into the fistula by a physician, and the lesion is monitored for signs of scarring and closure. If UI

Urinary Tract Disorders persists for 15 days or longer, the procedure may be repeated under the physician’s direction. For larger fistulas or those that fail to respond to conservative measures, surgical repair is undertaken if feasible. All patients who experience UI are at risk for developing Incontinence Associated Dermatitis (IAD), particularly when they also experience fecal incontinence and when urinary leakage is managed by an absorptive containment brief.56 Skin damage is characterized by inflammation, often accompanied by erosion. IAD is usually associated with burning and itching, and it increases the risk for pressure ulceration. Prevention focuses on a structured regimen of skin cleansing, moisturization, and application of a skin protectant.57 An incontinence or perineal skin cleanser that contains a moisturizing agent such as an emollient or humectant may be selected, followed by application of an ointment-based skin protectant or alcohol-free liquid acrylate moisture barrier. Alternatively, these steps may be combined using a single use perineal cloth that combines a skin cleanser, moisturizer and dimethicone-based skin protectant. Treatment of IAD begins with establishment of a structured skin cleansing regimen unless one is already in place. IAD is often associated with cutaneous candidiasis, which may be treated by applying a thin layer of an antifungal powder covered by a skin protectant, or application of an ointment-based antifungal agent. An ointment containing as active ingredients Balsam Peru, castor oil and trypsin also may be applied for IAD; this ointment combines active ingredients that promote wound healing with a skin protectant, shielding the skin from additional exposure to urine or stool.

o]

Assessment and Management of Bothersome LUTS: Urinary Stasis or Retention A precipitous drop or sudden cessation of urinary outflow is a serious urinary system complication that may indicate oliguria or anuria (failure of the kidneys to fi lter the blood and produce urine), urinary stasis (blockage of urine transport from the upper to lower urinary tracts), or urinary retention (failure of the bladder to evacuate itself of urine). The following sections review the pathophysiology and management of urinary stasis or acute postrenal failure caused by bilateral ureteral obstruction and urinary retention.

Obstruction of the Upper Urinary Tract Upper urinary tract stasis in the patient receiving palliative care is usually caused by obstruction of one or both ureters.58 The obstruction is typically attributable to a primary or metastatic tumor, and most arise from the pelvic region. In men, prostatic cancer is the most common cause, whereas pelvic (cervical, uterine, and ovarian) malignancies produce most ureteral obstructions in women. In addition to malignancies, retroperitoneal fibrosis secondary to inflammation or

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radiation may obstruct one or both ureters. Unless promptly relieved, bilateral ureteral obstruction leads to acute renal failure with uremia and elevated serum potassium, which can cause life-threatening arrhythmias. When a single ureter is obstructed, the bladder continues to fi ll with urine from the contralateral (unobstructed) kidney. In this case, urinary stasis produces symptoms of ureteral or renal colic. Left untreated, the affected kidney is prone to acute failure and infection, and it may produce systemic hypertension because of increased renin secretion.

Urinary Retention Urinary retention is the inability to empty the urinary bladder despite micturition.59 Acute urinary retention is an abrupt and complete inability to void. Patients are almost always aware of acute urinary retention because of the increasing suprapubic discomfort produced by bladder fi lling and distention and the associated anxiety. Chronic urinary retention occurs when the patient is partly able to empty the bladder by voiding but a significant volume of urine remains behind. Although no absolute cutoff point for chronic urinary retention can be defined, most clinicians agree that a residual volume of 200 mL or more deserves further evaluation. Urinary retention is caused by two disorders: bladder outlet obstruction or deficient detrusor contraction strength. Bladder outlet obstruction occurs when intrinsic or extrinsic factors compress the urethral outflow tract. For the patient receiving palliative care, malignant tumors of the prostate, urethra, or bladder may produce anatomic obstruction of the urethra, whereas lesions affecting spinal segments below the brainstem micturition center but above the sacral spine cause functional obstruction associated with detrusor–sphincter dyssynergia.60 In addition, brachytherapy may cause inflammation and congestion of the prostate, producing a combination of urinary retention and overactive bladder dysfunction.61 In the patient receiving palliative care, deficient detrusor contraction strength usually occurs as a result of denervation or medication. Alternatively, it may result from histological damage to the detrusor muscle itself, usually caused by radiation therapy or by detrusor decompensation after prolonged obstruction. Neurological lesions commonly associated with deficient detrusor contraction strength include primary or metastatic tumors affecting the sacral spine or spinal column, multiple sclerosis lesions, tertiary syphilis, and diseases associated with peripheral polyneuropathies, such as advanced-stage diabetes mellitus or alcoholism. Poor detrusor contraction strength also may occur as a result of unavoidable denervation from large abdominopelvic surgeries, such as abdominoperineal resection or pelvic exenteration.

Assessment and Management of Upper Tract Obstruction and Urinary Retention Accurate identification of the cause of a precipitous drop in urine output is essential, because the management of upper

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urinary tract obstruction and of urinary retention are different. Because both conditions cause a precipitous drop in urinary output, the LUTS reported by the patient may be similar. Patients usually report difficulty initiating urination and a dribbling, intermittent flow. In contrast, these conditions produce few or no bothersome symptoms in some instances. However, upper urinary tract obstruction is more likely to produce flank pain, whereas acute urinary retention is more likely to produce discomfort localized to the suprapubic area. The pain associated with upper urinary tract obstruction is usually localized to one or both flanks, although it may radiate to the abdomen and even to the labia or testes if the lower ureter is obstructed. Its intensity varies from moderate to intense. It typically is not relieved by changes in position, and the patient is often restless. The discomfort associated with acute urinary retention is typically localized to the suprapubic area or the lower back. The patient with acute urinary retention also may feel restless, although this perception is usually attributable to the growing and unfulfi lled desire to urinate. A focused physical examination assists the nurse to differentiate urinary retention from upper urinary tract obstruction. The patient with bilateral ureteral obstruction and acute renal failure may have systemic evidence of uremia, including nausea, vomiting, and hypertension. In some cases, obstruction may by complicated by pyelonephritis, causing a fever and chills. An abdominal assessment also should be performed. Physical assessment of the patient with upper urinary tract obstruction reveals a nondistended bladder, whereas the bladder is grossly distended and may extend above the umbilicus in the patient with acute urinary retention. Blood analysis reveals an elevated serum creatinine, blood urea nitrogen, and potassium in the patient with bilateral ureteral obstruction, but these values are typically normal in the patient with urinary retention or unilateral ureteral obstruction.58 Ultrasonography of the kidneys and bladder reveals ureterohydronephrosis above the level of the obstruction or bladder distention in the patient with acute urinary retention. In contrast to the patient with ureteral obstruction or acute urinary retention, many patients with chronic retention remain unaware of any problem, despite large residual volumes of 500 mL or more.59 When present, LUTS vary and may include feelings of incomplete bladder emptying, a poor force of stream, or an intermittent urinary stream. Patients are most likely to complain of diurnal voiding frequency and excessive nocturia (often arising four times or more each night), but these symptoms are not unique to incomplete bladder emptying. Although acute renal failure is uncommon in the patient with chronic urinary retention, the serum creatinine concentration may be elevated, indicating renal insufficiency attributable to lower urinary tract pathology. Obstruction of the upper urinary tract is initially managed by reversal of fluid and electrolyte imbalances and prompt drainage.58 Urinary outflow can be reestablished by insertion of a ureteral stent (drainage tube extending from the renal pelvis to the bladder) via cystoscopy. A ureteral stent is

preferred because it avoids the need for a percutaneous puncture and drainage bag. In the case of bilateral obstruction, a stent is placed in each ureter under endoscopic guidance; a single stent is placed if unilateral obstruction is diagnosed. The patient is advised that the stents will drain urine into the bladder. However, because the stents often produce bothersome LUTS, the patient is counseled to ensure adequate fluid intake while avoiding bladder irritants, including caffeine and alcohol. In certain cases, an antimuscarinic medication may be administered to reduce the irritative LUTS or bladder spasms that sometimes are associated with a ureteral stent. Alternatively, belladonna and opium (B&O) suppositories may be administered if painful ureteral spasms occur that are not responsive to antimuscarinic agents. B&O suppositories contain 16.2 mg of belladonna (an anticholinergic agent) and 30–60 mg of opium (an opoid analgesic). One to 2 suppositories are administered once or twice daily. The suppository should be moistened prior to insertion and care taken to place it immediately beside the rectal wall rather than in a bolus of stool. Potential side effects include anticholnergic effects such as dry mouth and constipation, as well as sensitivity to light, drowsiness and central nervous depression owing to their opium content. If the ureter is significantly scarred because of radiation therapy or distorted because of a bulky tumor, placement of a ureteral stent may not be feasible and a percutaneous nephrostomy tube may be required. The procedure may be done in an endoscopy suite or an interventional radiographic suite under local and systemic sedation or anesthesia. Unlike the ureteral stent that drains into the bladder, the nephrostomy tube is drained via a collection bag. The patient and family are taught to monitor urinary output from the bag and to secure the bag to the lower abdomen or leg in a manner that avoids kinking. The success of placement of a ureteral stent or nephrostomy tube is measured by the reduction in pain and in serum creatinine and potassium concentrations, indicating reversal of acute renal insufficiency. Acute urinary retention is managed by prompt placement of an indwelling urinary catheter.59,62 The patient is closely monitored as the bladder is initially drained, because of the very small risk of brisk diuresis associated with transient hyperkalemia, hematuria, hypotension, and pallor.63 This risk may be further reduced by draining 500 mL, interrupted by a brief period during which the catheter is clamped (approximately 5 minutes), and followed by further drainage until the retained urine is evacuated. The catheter is left in place for up to 1 month, allowing the bladder to rest and recover from the overdistension typical of acute urinary retention. After this period, the bladder may be slowly fi lled with saline, preferably heated to body temperature, and the catheter removed.64 The patient is allowed to urinate, and the voided volume is measured. This volume is compared with the volume infused, to estimate the residual volume; or a bladder ultrasound study can be completed to assess the residual volume. If the patient is able to evacuate the bladder successfully, the catheter is left out and the patient is taught to recognize and promptly

Urinary Tract Disorders manage acute urinary retention. If the patient is unable to urinate effectively, the catheter may be replaced or an intermittent catheterization program may be initiated, depending on the cause of the retention and the patient’s ability to perform self-catheterization. The patient with chronic urinary retention may be managed by behavioral techniques, intermittent catheterization, or an indwelling catheter.59,62 Behavioral methods are preferred because they are noninvasive and not associated with any risk of adverse side effects. Scheduled toileting with double voiding may be used in the patient with low urinary residual volumes (approximately 200 to 400 mL). The patient is taught to attempt voiding every 3 hours while awake and to double void (urinate, wait for 3 to 5 minutes, and urinate again before leaving the bathroom). Higher urinary residual volumes and clinically relevant complications caused by urinary retention, including urinary tract infection or renal insufficiency, are usually managed by intermittent catheterization or an indwelling catheter. Many factors enter into the choice between intermittent and indwelling catheterization, including the desires of the patient and family, the presence of an obstruction or low bladder wall compliance (e.g., a small or contracted bladder), and the prognosis. From a purely urological perspective, intermittent catheterization is preferable because it avoids longterm complications associated with an indwelling catheter, including chronic bacteriuria, calculi, urethral erosion, and catheter bypassing. However, an indwelling catheter may be preferable in a palliative care setting when: the urethra is technically difficult to catheterize; the patient has a small capacity with low bladder wall compliance; the patient is experiencing significant pain or limited upper extremity dexterity that interferes with the ability to effectively evacuate the bladder via micturition; or UI is complicated by retention.

o]

Managing the Indwelling Catheter Although the decision to insert a catheter may be directed by a physician or nurse practitioner, decisions concerning catheter size, material of construction, and drainage bag are usually made by the nurse.39,65,66 A relatively small catheter is typically sufficient to drain urine from the bladder. A 14- to 16-French catheter is adequate for men and a 12- to 14-French catheter is usually adequate for women. Larger catheters (18 to 20 French) are reserved for patients with significant intrinsic sphincter deficiency, hematuria, or sediment in the urine. Silastic, Teflon-coated tubes are avoided if the catheter is expected to remain in place more than 2 to 3 days. Instead, a silicone-coated, all silicone or hydrogel-coated latex catheter is selected because of its increased comfort.67 A hydrogel catheter coated with a silver alloy, or a silicone catheter impregnated with nitrofurazone, may be inserted when catheterization is anticipated to last for 2 weeks or less in order to reduce the risk of catheter-associated urinary tract

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infection.62 However, these have not been found to provide protection when left indwelling more than 2 weeks and they are not recommended for patients managed by long-term catheters. In men, water-soluble lubricating jelly should be injected into the urethra before catheterization and, in women, the gel is liberally applied to the catheter. A lubricant containing 2 Xylocaine may be used to reduce the discomfort associated with catheter insertion. The catheter is inserted to the bifurcation of the drainage port. The retention balloon is fi lled with 10 mL to fi ll the dead space in the port while ensuring proper inflation, and the inflated balloon is gently withdrawn to near the bladder neck. A drainage bag that provides adequate storage volume and reasonable concealment under clothing should be chosen. A bedside bag is preferred for bed-bound patients and for overnight use in ambulatory persons. The bedside bag should hold at least 2000 mL, should contain an antireflux valve to prevent retrograde movement of urine from bag to bladder, and should include a drainage port that is easily manipulated by the patient or care provider. In contrast, a leg bag or belly bag is preferred for ambulatory patients. It should hold at least 500 mL, should be easily concealed under clothing, and should attach to the leg or waist by elastic straps or a cloth pocket rather than latex straps, which are likely to irritate the underlying skin. The patient is taught to keep the drainage bag level with or below the symphysis pubis. All indwelling catheters should be secured using a manufactured leg strap or adhesive backed device to reduce unintentional traction against the bladder neck or inadverent urethral trauma.68 Typically, the patient is encouraged to drink at least the recommended daily allowance of fluids, and to drink additional fluids if hematuria or sediment is present. However, these recommendations may be altered depending on the clinical setting and the patient’s short-term prognosis. The catheter is routinely monitored for blockage caused by blood clots, sediment, or kinking of the drainage bag above the urinary bladder. The patient and family are also advised to monitor for signs and symptoms of clinically relevant infection, including fever, new hematuria, or urinary leakage around the catheter. They are also advised that bacteriuria is inevitable, even with the use of catheters containing a bacteriostatic coating, and that only clinically relevant (symptomatic) urinary tract infections should be treated.

9= CASE STUDY DY, A Patient with an Indwelling Catheter, Hematuria, and Clot Retention DY is a 69-year-old white woman with type 2 diabetes mellitus, hypertension, and idiopathic cirrhosis with a mild coagulopathy. She was diagnosed with endometrial cancer at age 65 and treated with external beam radiation therapy and interstitial radium seed implants. She began noting

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LUTS, including frequency, urgency, and dysuria, and she developed gross hematuria with clots approximately 3 years after completing radiation therapy. She was initially treated with continuous bladder irrigation, intravesical alum, and prostaglandin instillations with minimal response. She underwent a cystoscopy for evacuation of blood clots. At that time, random bladder biopsies were obtained, which revealed chronic inflammation, hemorrhage, hemosiderinladen macrophages, and vascular telangiectasia. There was no evidence of malignancy. Several areas of bleeding were cauterized. Hyperbaric oxygen therapy was attempted, but the patient did not tolerate the procedure well and refused further treatments. Over the next 3 months, she continued to have intermittent episodes of gross hematuria and progressive weakness. DY again sought assistance when she experienced a particularly severe episode of hematuria with clot retention and a hematocrit of 12. She was admitted to the hospital for transfusions and management of recurring hemorrhagic cystitis. A voiding cystourethrogram (VCUG) was obtained on admission, and she was treated with transfusions and continuous bladder irrigations until her sixth hospital day, when she was taken to the operating room for a cystoscopy, performed under anesthesia. Before the cystoscopy, Vaseline gauze was placed on the perineal skin. Because left vesicoureteral reflux was noted on the VCUG, a Fogarty balloon was passed into the distal left ureter and inflated to occlude the ureter. The bladder was fi lled, and her capacity was determined to be 300 mL. A total of 150 mL of a 1 formalin solution was slowly infused into the bladder and retained for 20 minutes. The bladder was then drained and irrigated with saline. A three-way indwelling catheter was placed, and continuous bladder irrigation was restarted. Her hematuria partially resolved, and she returned to the operating room 3 days later for instillation of 150 mL of a 3 formalin solution. The hematuria resolved after this second instillation, and the continuous bladder irrigation was discontinued within 24 hours. At the time of discharge the next day, she was voiding well and her urine remained free of hematuria. Postprocedure pain was managed by a combination of urinary analgesics, such as phenazopyridine (Pyridium), and an oral narcotic analgesic (oxycodone). Both medications were discontinued 1 week after the final instillation. Four months later, DY presented with recurrent dysuria, hematuria, and clots requiring transfusion and repeated cystoscopy with instillation of a 1 formalin solution. She responded to this treatment and was discharged 2 days after treatment. o] This case demonstrates the risk of recurrent hemorrhagic cystitis after treatment with a combination of external beam and interstitial radiotherapy. This patient’s coagulopathy may have exacerbated the risk for significant hematuria. In this case, the initial episode of hematuria occurred 3 years after

therapy, and it recurred over a period of 22 months despite treatment with continuous bladder irrigation, cystoscopy with electrocauterization, hyperbaric oxygen, intravesical alum, and prostaglandin. Ultimately, the condition failed to respond to intravesical instillation of a 1 formalin solution, but it did respond to a 3 solution. Nonetheless, the patient experienced a single recurrence within a period of 4 months, which responded to a single instillation of a 1 formalin solution. She remained symptom-free at 1 year. Fortunately, life-threatening blood loss is a rare complication of hemorrhagic cystitis and bladder tumors. Treatment usually begins with bladder irrigation, evacuation of clots, and intravesical instillations such as alum or silver nitrate and progresses to therapy with intravesical prostaglandin and formalin. Because of the significant risk of toxicity if formalin is absorbed, a Fogarty catheter must be introduced to prevent reflux of formalin into the upper urinary tract and renal capillaries. Alternatives include cystoscopy with electrical cauterization or laser coagulation of individual bleeding sites. Selective embolization or ligation of the hypogastric artery, palliative cystectomy, or radical nephrectomy may be required as a last resort. Table 15–4 summarizes the treatment options for hemorrhagic cystitis.

o]

Assessment and Management of Bothersome LUTS: Bladder Spasm Irritative LUTS, including a heightened sense of urgency and urethral discomfort, are common in patients with a longterm indwelling catheter or ureteral stent. In certain cases, these irritative symptoms are accompanied by painful bladder spasms. Bladder spasms are characterized by intermittent episodes of excruciating, painful cramping localized to the suprapubic region. They are caused by high-pressure, overactive detrusor contractions in response to a specific irritation.58 Urine may bypass (leak around) the catheter or cause urge UI in the patient with a stent. Painful bladder spasms may be the direct result of catheter occlusion by blood clots, sediment, or kinking; or they may be associated with a needlessly large catheter, an improperly inflated retention balloon, or hypersensitivity to the presence of the catheter or stent or to principal constituents. Other risk factors include pelvic radiation therapy, chemotherapeutic agents (particularly cyclophosphamide), intravesical tumors, urinary tract infections, and bladder or lower ureteral calculus. Bladder spasms are managed by altering modifiable factors or by administering anticholinergic medications if indicated (Table 15–5). Changing the urethral catheter may relieve bladder spasms. An indwelling catheter is usually changed every 4 weeks or more often because of the risk of blockage and encrustation with precipitated salts, hardened urethral secretions, and bacteria. In addition to changing the catheter, the nurse should consider altering the type of catheter. For example, a catheter with

Table 15–4 Treatment Options for Hemorrhagic Cystitis Agent

Action

Route of Administration/Dosage

Problems/Contraindications

ε-Aminocaproic acid

Acts as an inhibitor of fibrinolysis by inhibiting plasminogen activation substances

5 g loading dose orally or parenterally, followed by 1–1.25 g hourly to max of 30 g in 24 h; Maximum response in 8–12 h

Potential thromboembolic complications Increased risk of clot retention Contraindicated in patients with upper urinary tract bleeding or vesicoureteral reflux Decreased blood pressure

Silver nitrate

Chemical cautery

Intravesical instillation: 0.5 to 1.0 solution in sterile water instilled for 10–20 min followed by no irrigation; multiple instillations may be required

Reported as 68 effective Case report of renal failure in patient who precipitated silver salts in renal collecting system, causing functional obstruction.

Alum (may use ammonium or potassium salt of aluminum)

Chemical cautery

Continuous bladder irrigation: 1 solution in sterile water, pH = 4.5 (salt precipitates at pH of 7)

Requires average of 21 h of treatment Thought to not be absorbed by bladder mucosa; however, case reports of aluminum toxicity in renal failure patients

Formalin (aqueous solution of formaldehyde)

Cross-links proteins; exists as monohydrate methylene glycol and as a mixture of polymeric hydrates and polyoxyethylene glycols; rapidly “fi xes” the bladder mucosa

Available as 37–40, aqueous formaldehyde (= 100 formalin) diluted in sterile water to desired concentration (1 formalin = 0.37 formaldehyde); instillation: 50 mL for 4–10 min or endoscopic placement of 5 formalin-soaked pledgets placed onto bleeding site for 15 min and then removed

Painful, requires anesthesia Vesicoureteral reflux (relative contraindication): patients placed in Trendelenburg position with low-grade reflux or ureteral occlusive balloons used with high-grade reflux Extravasation causes fibrosis, papillary necrosis, fistula, peritonitis

Sources: References 69,70.

Table 15–5 Conditions Associated with Detrusor Overactivity in the Patient Receiving Palliative Care Condition

Disorder

Neurological lesions above the brainstem micturition center Primary or metastatic tumors of the spinal segments Neurological lesions below the brainstem neicturition center but above sacral spinal segments

(Overactive bladder, with or without urge UI) Posterior fossa tumors causing intracranial pressure increased Cerebrovascular accident (stroke) Diseases affecting the brain, including multiple sclerosis, AIDS Reflex UI with vesicosphincter dyssynergia Primary or metastatic tumors of the spinal cord Tumors causing spinal cord compression because of their effects on the spinal column Systemic diseases directly affecting the spinal cord, including advanced-stage AIDS, transverse myelitis, Guillain-Barré syndrome (Overactive bladder, with or without urge UI) Primary bladder tumors, including papillary tumors or carcinoma in situ Bladder calculi (stones) Radiation cystitis, including brachytherapy Chemotherapy-induced cystitis (Overactive bladder usually without urge UI) Prostatic carcinoma Urethral cancers Pelvic tumors causing urethral compression

Inflammation of the bladder

Bladder outlet obstruction

AIDS, acquired immunodeficiency syndrome; UI, urinary incontinence.

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a smaller French size may be inserted if the catheter is larger than 16 French, unless the patient is experiencing a buildup of sediment causing catheter blockage. Similarly, a catheter with a smaller retention balloon (5 mL) may be substituted for a catheter with a larger balloon (30 mL), to reduce irritation of the trigone and bladder neck. Use of a catheter that is constructed of hydrophilic polymers or latex-free silicone may relieve bladder spasms and diminish irritative LUTS because of their greater biocompatibility when compared with Teflon-coated catheters. Instruction about the position of the catheter, drainage tubes, and bags is reinforced; and the drainage tubes and urine are assessed for the presence of sediment or clots likely to obstruct urinary drainage. In certain cases, such as when the urethral catheter produces significant urethritis with purulent discharge from the urethra, a suprapubic indwelling catheter may be substituted for the urethral catheter. A suprapubic catheter also may be placed in patients who have a urethra that is technically difficult to catheterize, or who tend to encrust the catheter despite adequate fluid intake. Once established, these catheters are changed monthly, usually in the outpatient, home care, or hospice setting. Patients with indwelling catheters who are prone to rapid encrustation and blockage present a particular challenge for the palliative care nurse. Options for management include frequent catheter changes (sometimes as often as one or two times per week) and irrigation of the catheter with a mildly acidic solution such as Renacidin. Irrigation may be completed once or several times weekly, and a small volume of solution is used (approximately 15 mL) to provide adequate irrigation of the catheter while avoiding irritation of the bladder epithelium.71 Bladder spasms also may indicate a clinically relevant urinary tract infection. The catheter change provides the best opportunity to obtain a urine specimen. This specimen should be obtained from the catheter and never from the drainage bag. Although bacteriuria is inevitable with a long-term indwelling catheter, cystitis associated with painful bladder spasms should be managed with sensitivity-guided antibiotic therapy. The patient is taught to drink sufficient fluids to meet or exceed the recommended daily allowance of 30 mL/kg (0.5 oz/lb) whenever feasible. Reduced consumption of beverages or foods containing bladder irritants, such as caffeine or alcohol, also may alleviate bladder spasms in some cases. If conservative measures or catheter modification fail to relieve bladder spasms, an anticholinergic medication may be administered. These medications work by inhibiting the overactive contractions that lead to painful bladder spasms.

9= CASE STUDY Mr. W, A Patient with Bladder Spasms in Hospice Care Mr. W is an 81-year-old gentleman with progressive, metastatic lung cancer with significant pain and limited mobility. He developed urinary incontinence and a silastic,

18 French indwelling urethral catheter with a 30 mL retention balloon was placed based on hospice protocol. After a week spent with the indwelling catheter, the urology team was consulted for bladder spasms and leakage of urine around the Foley catheter (catheter bypassing). During this period, he also developed incontinence-associated dermatitis affecting his penis and the skin folds underneath the scrotum and on the inner thighs. The hospice nurse reported that the discomfort from his bladder spasm and skin irritation was not addressed by the opioid analgesics he was receiving for his metastatic lung cancer. His indwelling catheter was replaced with a 16 French hydrogel-coated catheter, with a 5 mL retention balloon. A Velcro leg strap catheter securing device was placed to prevent traction of the retention balloon on the bladder neck. In addition, a skin care regimen comprising twice daily cleansing with a disposable washcloth containing a perineal cleanser, moisturizer, and 3 dimethicone cleanser was instituted. Mr. W initially experienced relief from bladder spasm, and his incontinence-associated dermatitis resolved within 7 days of beginning his skin care regimen. Unfortunately, his bladder spasms returned 2 days later, resulting in intermittent episodes of pain and catheter bypassing. In an effort to control leakage, the hospice nurses inflated the balloon to 10 and then 15 mL. However, the bladder spasms did not improve and appeared to increase, although the leakage diminished. Urology nursing was again consulted and suggested reduction in balloon inflation size, as this may have been contributing to spasms. The balloon was deflated to 5 mL and the patient started 2 mg extended release tolterodine capsules (DetrolTM LA) daily. This resulted in relief from his bladder spasms, but he reported a very dry mouth. The Detrol was discontinued and a 3.9 mg transdermal oxybutynin patch (Oxytrol) was prescribed. This transdermal medication reduced the need for one more oral agent on a daily basis, and it did not cause the dry mouth associated with the oral antimuscarinic. After 3 days of this medication, along with adjusted and reduced balloon size, the patient’s bladder spasms and leakage stopped altogether. o] This case illustrates several important aspects of indwelling catheter care, management of bladder spasms, and perineal skin care in the palliative care setting. Because of his metastatic lung cancer, Mr. W was experiencing significant pain and limited ability to ambulate. A decision to insert an indwelling catheter was made when he developed urinary incontinence in order to reduce the need for him to move to a toilet, to protect his skin from the potentially damaging effect of repeated exposure to urine, and to preserve him from the indignity of repeated episodes of urinary incontinence. However, the original indwelling catheter resulted in bladder spasms and catheter bypassing. Rather than increasing the catheter and balloon size, the urology team appropriately chose to reduce the catheter size to 16 French, and to

Urinary Tract Disorders reduce the retention balloon size to 5 mL. They also elected to insert a catheter with a hydrogel coating, and to employ a leg strap securing device, in an attempt to reduce irritation and traction at the bladder neck and within the urethra. These actions resulted in relief from bladder spasm for approximately 48 hours. When the spasms recurred, the hospice nurses increased the balloon size to 15 mL, which reduced urinary leakage around the catheter. However, increasing the balloon size probably increased the irritation at the level of the bladder neck, and failed to relieve the underlying bladder spasms. Instead, the patient was managed by reducing the balloon size to a standard 5 mL and an antimuscarinic medication was begun. This combination of interventions relieved the bladder spasms and catheter bypassing, but he experienced bothersome dry mouth. He was then switched to a transdermal oxybutynin patch, which avoids the first pass metabolic effect associated with oral agents, and is associated with a low occurrence of dry mouth. It relieved his painful bladder spasm and associated leakage without causing recurrence of his bothersome dry mouth.

o]

Hematuria Hematuria is defined as the presence of blood in the urine. It results from a variety of renal, urological, and systemic processes. When gross hematuria presented as an initial complaint or finding in an adult, further evaluation in one study revealed that 23 of patients had an underlying malignancy.66,72 In the palliative care setting, hematuria occurs more commonly after pelvic irradiation or chemotherapy, or as the result of a major coagulation disorder or a newly diagnosed or recurring malignancy. Hematuria is divided into two subtypes according to its clinical manifestations. Microscopic hematuria is characterized by hemoglobin or myoglobin on dipstick analysis and more than 3 to 5 red blood cells (RBCs) per high-power field (hpf) under microscopic urinalysis, but the presence of blood remains invisible to the unaided eye. Macroscopic (gross) hematuria is also characterized by dipstick and microscopic evidence of RBCs in the urine, as well as a bright red or brownish discoloration that is apparent to the unaided eye. In the context of palliative care, hematuria can also be subdivided into three categories depending on its severity.69 Mild hematuria is microscopic or gross blood in the urine that does not produce obstructing clots or cause a clinically relevant decline in hematocrit or hemoglobin. Moderate and severe hematuria are associated with more prolonged and high-volume blood losses; hematuria is classified as moderate if < 6 units of blood are required to replace blood lost within the urine and as severe if ≥6 units are required. Both moderate and severe hematuria may produce obstructing clots that lead to acute urinary retention or obstruction of the upper urinary tract.

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Pathophysiology Hematuria originates as a disruption of the endothelial– epithelial barrier somewhere within the urinary tract.73 Inflammation of this barrier may lead to the production of cytokines, with subsequent damage to the basement membrane and passage of RBCs into the urinary tract. Laceration of this barrier may be caused by an invasive tumor, iatrogenic or other trauma, vascular accident, or arteriovenous malformation. Hematuria that originates within the upper urinary tract is often associated with tubulointerstitial disease or an invasive tumor, whereas hematuria originating from the lower urinary tract is typically associated with trauma, an invasive tumor, or radiation- or chemotherapy-induced cystitis. In the patient receiving palliative care, significant hematuria most commonly occurs as the result of a hemorrhagic cystitis related to cancer, infection (viral, bacterial, fungal, or parasitic), chemical toxins (primarily from oxazaphosphorine alkylating agents), radiation, anticoagulation therapy, or an idiopathic response to anabolic steroids or another agent.69 Radiation and chemotherapeutic agents account for most cases of moderate to severe hematuria. Radiation cystitis is typically associated with pelvic radiotherapy for cancer of the uterus, cervix, prostate, rectum, or lower urinary tract. Most of these patients (80 to 90) experience bothersome LUTS (diurnal voiding frequency, urgency, and dysuria) that reach their maximum intensity near the end of treatment and subside within 6 to 12 weeks after cessation therapy. However, about 10 to 20 of patients experience clinically relevant cystitis that persists well beyond the end of treatment or occurs months or even years after radiotherapy.74,75 In addition to bothersome LUTS, these patients experience pain and hematuria caused by mucosal edema, vascular telangiectasia, and submucosal hemorrhage. They also may experience interstitial and smooth muscle fibrosis with low bladder compliance and markedly reduced bladder capacity.69 Severe fibrosis associated with radiotherapy can lead to moderate to severe hematuria, as well as upper urinary tract distress (ureterohydronephrosis, vesicoureteral reflux, pyelonephritis, and renal insufficiency) caused by chronically elevated intravesical pressures. Chemotherapy-induced cystitis usually occurs after treatment with an oxazaphosphorine alkylating agent, such as cyclophosphamide or isophosphamide.69 A urinary metabolite produced by these drugs, acrolein, is believed to be responsible. Hemorrhage usually occurs during or immediately after treatment, but delayed hemorrhage may occur in patients undergoing long-term therapy. The effects on the bladder mucosa are similar to those described for radiation cystitis.

Assessment Because bleeding can occur at any level in the urinary tract from the glomerulus to the meatus, a careful, detailed history is needed to identify the source of the bleeding and to initiate an appropriate treatment plan. The patient should be

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asked whether the hematuria represents a new, persistent, or recurrent problem. This distinction is often helpful, because recurrent or persistent hematuria may represent a benign predisposing condition, whereas hematuria of new or recent onset is more likely to result from conditions related to the need for palliative care. A review of prior urinalyses also may provide clues to the onset and history of microscopic hematuria in particular. The patient is queried about the relation of grossly visible hematuria to the urinary stream. Bleeding limited to initiation of the stream is often associated with a urethral source, bleeding during the entire act of voiding usually indicates a source in the bladder or upper urinary tract, and bleeding near the termination of the stream often indicates a source within the prostate or male reproductive system. The patient with gross hematuria should also be asked about the color of the urine: a bright red hue indicates fresh blood, whereas a darker hue (often described as brownish, rust, or “Coke” colored) indicates older blood. Some patients with severe hematuria report the passage of blood clots. Clots that are particularly long and thin, resembling a shoestring or fishhook, suggest an upper urinary tract source; larger and bulkier clots suggest a lower urinary tract source. The patient is asked about any pain related to the hematuria; this questioning should include the site and character of the pain and any radiation of pain to the flank, lower abdomen, or groin. Flank pain usually indicates upper urinary tract problems, abdominal pain radiating to the groin usually indicates lower ureteral obstruction and bleeding, and suprapubic pain suggests obstruction or infection causing hematuria. In addition to questions about the hematuria, the nurse should ask about specific risk factors, including a history of urinary tract infections; systemic symptoms suggesting infection or renal insufficiency including fever, weight loss, rash, and recent systemic infection; any history of primary or metastatic tumors of the genitourinary system; and chemotherapy or radiation therapy of the pelvic or lower abdominal region. A focused review of medications includes all chemotherapeutic agents used currently or in the past and any current or recent administration of anticoagulant medications, including warfarin, heparin, aspirin, nonsteroidal anti-inflammatory drugs, and other anti-coagulant agents.

Laboratory Testing A dipstick and microscopic urinalysis is usually combined with microscopic examination when evaluating hematuria. This provides a semiquantitative assessment of the severity of hematuria (RBCs/hpf), and it excludes pseudohematuria (reddish urine caused by something other than RBCs, such as ingestion of certain drugs, vegetable dyes, or pigments). Urinalysis provides further clues to the likely source of the bleeding.76 Dysmorphic RBCs, cellular casts, renal tubular cells, and proteinuria indicate upper urinary tract bleeding. In contrast, hematuria from the lower urinary tract is usually associated with normal RBC morphology. Additional evaluation is guided by clues from the history, physical examination, and urinalysis. For example, the presence of pyuria and bacteriuria suggests cystitis as the cause of hematuria and indicates the need for culture and sensitivity testing. The calcium/creatinine ratio should be assessed in a random urine sample for patients with painful macroscopic hematuria, to evaluate the risk for stone formation, particularly for individuals with hyperparathyroidism or prolonged immobility. A random urine protein/creatinine ratio and measurement of the C3 component of complement may be indicated in patients with proteinuria or casts, to evaluate for glomerulopathy or interstitial renal disease. Further studies also may be completed, to evaluate the specific cause of hematuria and implement a treatment plan.

Imaging Studies Ultrasonography is almost always indicated in the evaluation of hematuria in the patient receiving palliative care.69 It is used to identify the size and location of cystic or solid masses that may act as the source of hematuria and to assess for obstruction, most stones, larger blood clots, and bladderfi lling defects. An intravenous pyelogram also may be used to image the upper and lower urinary tracts, but its clinical use is limited by the risk of contrast allergy or nephropathy. Cystoscopy is performed if a bladder lesion is suspected, and ureteroscopy with retrograde pyelography may be completed if an upper urinary tract source of bleeding is suspected.

Management Physical Examination Physical examination also provides valuable clues to the source of hematuria. When completing this assessment, the nurse should particularly note any abdominal masses or tenderness, skin rashes, bruising, purpura (suggesting vasculitis, bleeding, or coagulation disorders), or telangiectasia (suggesting von Hippel-Lindau disease). Blood pressure should be assessed, because a new onset or rapid exacerbation of hypertension may suggest a renal source for hematuria. The lower abdomen is examined for signs of bladder distention, and a rectal assessment is completed to evaluate apparent prostatic or rectal masses or induration.

The management of hematuria is guided by its severity and its source or cause. Preventive management for chemotherapy-induced hematuria begins with administration of sodium 2-mercaptoethanesulfonate (mesna) to patients receiving an alkylating agent for cancer.70 This is given parenterally, and it oxidizes to a stable, inactive form within minutes after administration. It becomes active when it is excreted into the urine, where it neutralizes acrolein (the metabolite postulated to cause chemotherapy-induced cystitis and hematuria) and slows degradation of the 4-hydroxy metabolites produced by administration of alkylating drugs. It is given with cyclophosphamide (20 mg/kg at time 0 and every 4 hours for 2 or 3 doses). When

Urinary Tract Disorders combined with vigorous hydration, it has been shown to protect the bladder from subsequent damage and hematuria. Mild urinary retention is managed by identifying and treating its underlying cause. For example, sensitivity-guided antibiotics are used to treat a bacterial hemorrhagic cystitis, and extracorporeal lithotripsy may be used to treat hematuria associated with a urinary stone. While the hematuria persists, the patient is encouraged to drink more than the recommended daily allowance for fluids, to prevent clot formation and urinary retention. In addition, the patient is assisted in obtaining adequate nutritional intake to replace lost blood, and iron supplementation is provided if indicated. In contrast to mild hematuria, moderate to severe cases often lead to the formation of blood clots, causing acute urinary retention and bladder pain. In these cases, complete evacuation of clots from the bladder is required before a defi nitive assessment and treatment strategy are implemented.58 A large-bore urethral catheter (24 or 26 French in the adult) is placed, and manual irrigation is performed with a Toomey syringe. The bladder is irrigated with saline until no further clots are obtained and the backflow is relatively clear.50 A 22or 24-French three-way indwelling catheter is then placed, to allow continuous bladder irrigation using cold or iced saline. Percutaneous insertion of a suprapubic catheter is not recommended because of limitations of size and the potential to “seed” the tract if a bladder malignancy is present. Unsuccessful attempts to place a urethral catheter or recurrent obstruction of the irrigation catheter provides a strong indication for endoscopic evaluation. Rigid cystoscopy is preferred because it allows optimal evacuation of bladder clots and further evaluation of sites of bleeding; retrograde pyelography or ureteroscopy may also be completed if upper urinary tract clots are suspected. Based on the findings of endoscopic evaluation, sites of particularly severe bleeding are cauterized or resected. After the initial evacuation of obstructing clots, bladder irrigations or instillations may be completed if multiple sites of bleeding are observed or if the risk of recurrence is high, as in the case of radiation- or chemotherapy-induced hematuria. Table 15–4 summarizes treatment options for moderate to severe hematuria and their route, administration, and principal nursing considerations.

9= CASE STUDY Mr. J, A Patient with Urinary Obstruction and Percutaneous Nephrostomy Mr. J is a 57-year-old African American male with prostate cancer. He was undergoing palliative chemotherapy for metastatic prostate cancer to the bone and pelvis lymph nodes when he developed persistent nausea, and his creatinine was found to be 2.8 mg/dL, up from his baseline 1.5 mg/dL. He was found to have incomplete bladder emptying and bladder outlet obstruction identified by ultrasound and non-contrast CT scan. Initially an

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indwelling urethral catheter was inserted that temporarily relieved his urinary retention and his creatinine dropped from 2.8 mg/dL to 1.6 mg/dL. His chemotherapy reduced the prostatic tumor volume and the severity of his bladder outlet obstruction. He underwent a trial of voiding and his indwelling urethral catheter was removed. Four weeks later he again experienced a rising creatinine of 2.6 mg/dL accompanied by nausea and lower abdominal discomfort. Ultrasound at this point revealed bilateral hydronephrosis (enlargement of the renal pelvicaliceal systems). He was admitted to hospital after a difficult indwelling catheterization failed to relieve the hydronephrosis. His urologist performed a cystoscopy that revealed that growth of his prostate malignancy had led to obstruction of both the bladder outlet and both ureteral orifices. He was discharged from hospital with bilateral percutaneous tubes to drain bags. He was taken to the angiographic interventional radiology suite and bilateral percutaneous nephrostomy tubes were placed. This procedure relieved his hydronephrosis and his creatinine returned to baseline values (1.7 mg/dL). Mr. J initially found his bilateral percutaneous nephrostomy tubes cumbersome. However, he also reported that they relieved his abdominal discomfort, improved his appetite, and enabled improved urinary drainage and a return of his serum creatinine to baseline values. His home health nurses worked to improve dressing comfort and the family was taught dressing care and tube management. By preserving maximal renal function, the patient was able to undergo further cycles of chemotherapy and remain out of the hospital. He also remained free of complaints of nausea and lower abdominal pain for many weeks while on palliative chemotherapy. Home health and, eventually, hospice nurses provided support in terms of nursing care of the nephrostomy tubes and drains. A waterproof covering was fashioned so the patient could shower on the days of the nurse visit. Then the dressings were changed and remained dry and free of complications. Although Mr. J ultimately experienced progression of his prostatic malignancy and eventually was unable to undergo further chemotherapy, he expressed pleasure that the nephrostomy tubes allowed him an opportunity to try additional chemotherapeutic options in an attempt to slow progression of his disease. In addition, placement of nephrostomy tubes enabled him to spend valuable time with his family and to remain in his home with them on a special holiday. His family supported him at home with the help of hospice care. o] This case illustrates the importance of evaluating the source of urinary tract obstruction, and the potentially beneficial effects of insertion of an indwelling urinary catheter or nephrostomy tubes in order to relieve obstruction and improve renal function. Initially, Mr. J experienced obstruction of the bladder outlet with incomplete bladder emptying transiently

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relieved by catheterization. Because chemotherapy initially reduced his tumor size, he was able to resume spontaneous voiding for a period of time. Ultimately, his tumor recurred, resulting in obstruction of both lower urinary tract and the ureteral outlets, leading to a rising creatinine and bilateral hydronephrosis. In this situation, insertion of an indwelling catheter was insufficient to relieve ureteral obstruction, and bilateral nephrostomy tube placement was required. Although the patient initially found the nephrostomy tubes cumbersome, he ultimately reported that their presence was worthwhile because they relieved his lower abdominal pain and nausea, and allowed him to pursue further chemotherapy—slowing progression of his cancer and allowing him to spend additional time with his family while remaining in a home care setting.

o]

Summary Patients receiving palliative care frequently experience urinary system disorders. A malignancy or systemic disease may affect voiding function and produce UI, urinary retention, or upper urinary tract obstruction. In addition, upper acute renal insufficiency or renal failure may occur if the upper urinary tract becomes obstructed. These disorders may be directly attributable to a malignancy or systemic disease, or they may be caused by a specific treatment such as radiation, chemotherapy, or a related medication. Nursing management of patients with urinary system disorders is affected by the nature of the urological condition, the patient’s general condition, and the nearness to death.

REFERENCES 1. Gray M, Brown KC. Genitourinary system. In: Thompson JM, McFarland GK, Hirsh JE, Tucker SM, eds. Clinical Nursing (5th ed). St. Louis: Mosby, 2002:917–999. 2. Gray ML. Physiology of voiding. In: Doughty DB, ed. Urinary and Fecal Incontinence: Current Management Concepts (3rd ed). St. Louis: Mosby-Elsevier, 2006:21–54. 3. Griffiths D, Tadic SD. Bladder control, urgency, and urge incontinence: Evidence from functional brain imaging. Neurourol Urodyn 2008;27:466–474. 4. Hruz P, Lovblad KO, Nirkko AC, Thoeny H, El-Koussy M, Danuser H. Identification of brain structures involved in micturition with functional magnetic resonance imaging (fMRI). J Neuroradiol 2008;35:144–149. 5. Kitta T, Kakizaki H, Furuno T, Moriya K, Tanaka H, Shiga T, Tamaki N, Yabe I, Sasaki H, Nonomura K. Brain activation during detrusor overactivity in patients with Parkinson’s disease: A positron emission tomography study. J Urol 2006;175:994–998. 6. Sakakibara R, Hattori T, Yasuda K, Yamanishi T. Micturitional disturbance after hemispheric stroke: Analysis of the lesion site by CT and MRI. J Neurol Sci 1996;137:47–56.

7. Yamamoto T, Sakakibara R, Hashimoto K, Nakazawa K, Uchiyama T, Liu Z, Ito T, Hattori T. Striatal dopamine level increases in the urinary storage phase in cats: An in vivo microdialysis study. Neuroscience 2005;135:299–303. 8. Morrison JF. The discovery of the pontine micturition centre by F. J. F. Barrington. Exp Physiol 2008;93:742–745. 9. Kavia RB, Dasgupta R, Fowler CJ. Functional imaging and the central control of the bladder. J Comp Neurol 2005;493:27–32. 10. Andersson KE, Arner A. Urinary bladder contraction and relaxation: Physiology and pathophysiology. Physiol Rev 2004;84:935–986. 11. Eglen RM. Muscarinic receptor subtypes in neuronal and nonneuronal cholinergic function. Auton Autacoid Pharmacol 2006;26:219–233. 12. Anisuzzaman AS, Morishima S, Suzuki F, Tanaka T, Yoshiki H, Sathi ZS, Akino H, Yokoyama O, Muramatsu I. Assessment of muscarinic receptor subtypes in human and rat lower urinary tract by tissue segment binding assay. J Pharmacol Sci 2008;106:271–279. 13. de Groat WC, Fraser MO, Yoshiyama M, Smerin S, Tai C, Chancellor MB, Yoshimura N, Roppolo JR. Neural control of the urethra. Scand J Urol Nephrol Suppl 2001;207:35–43; discussion 106–125. 14. Thor KB. Serotonin and norepinephrine involvement in efferent pathways to the urethral rhabdosphincter: Implications for treating stress urinary incontinence. Urology 2003;62(4 Suppl):3–9. 15. Abrams P, Cardozo L, Fall M, Griffiths D, Rosier P, Ulmstem U, van Kerrebroeck P, Wein A. The standardization of terminology of lower urinary tract function: Report for the standardization sub-committee of the International Continence Society. Neurourol Urodyn 2002;21:167–178. 16. Gray M, Moore KN. Urologic disorders. Adult and Pediatric Care. St. Louis: Mosby-Elsevier, 2009:119–159. 17. McGuire EJ, English SF. Periurethral collagen injection and female sphincteric incontinence: Indications, techniques and result. World J Urol 1997;15:306–309. 18. Gray M. Pathology and management of reflex urinary incontinence/neurogenic bladder. In: Doughty DB, ed. Urinary and Fecal Incontinence: Nursing Management (3rd ed). St. Louis: Mosby-Elsevier, 2006:105–143. 19. Hurlow J. View from here: Functional urinary incontinence ICD-9. J Wound Ostomy Continence Nurs 2009;36:79–81. 20. Wilson M. Causes and management of indwelling urinary catheter-related pain. Br J Nurs 2008;17:232–239. 21. Chang D, Ben-Meir D, Pout K, Dewan PA. Management of postoperative bladder spasm. J Pediatr Child Health 2005;41(1–2):56–58. 22. Hendirckson K, Gleason D, Young JM, Saltsstein D, Gershman A, Lerner A, Witjes JA. Safety and side effects of immediate instillation of apaziquone following transurethral resection in patients with non-muscle invasive bladder cancer. J Urol 2008;180:116–120. 23. Stewart W, Herzog R, Wein A, et al. The prevalence and impact of overactive bladder in the U.S.: Results from the NOBLE program. Neurourol Urodyn 2001;20:406–408. 24. Gray M, Marx RM, Peruggio M, Patrie J, Steers WD. A model for predicting motor urge urinary incontinence. Nurs Res 2001;50:116–122. 25. Zhang B, Gao X, Wen XQ. Abderxit. [Analysis of the causes of postoperative chest or/and abdomen colic in benign

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44. MacDiarmid SA. How to choose the initial drug treatment for overactive bladder. [Review] Curr Urol Rep 2007;8:364–369. 45. Andersson KE, Olshansky B. Treating patients with overactive bladder syndrome with antimuscarinics: Heart rate considerations. BJU Int 2007;100:1007–1014. 46. Burgio KL, Locher JL, Goode PS. Combined behavioral and drug therapy for urge incontinence in older women. J Am Geriatr Soc 2000;48:370–374. 47. Smith DA. Devices for continence. Nurse Pract Forum 1994;5:186–189. 48. Wells M. Managing urinary incontinence with BioDerm external continence device. Br J Nurs 2008;17:s24–s29. 49. Nickel JC. The use of alpha1-adrenoceptor antagonists in lower urinary tract symptoms: Beyond benign prostatic hyperplasia. Urology 2003;62(Suppl 1):34–41. 50. Anson C, Gray M. Secondary urologic complications of spinal injury. Urol Nurs 1993;13:107–112. 51. Van Gool JD, Vijverberg MA, Messer AP, Elzinga-Plomp A, De Jong TP. Functional daytime incontinence: Non-pharmacologic treatment. Scand J Urol Nephrol 1992;141:93–105. 52. Colling J, Ouslander J, Hadley BJ, Eisch J, Campbell E. The effects of patterned urge response toileting (PURT) on urinary incontinence among nursing home residents. J Am Geriatr Soc 1992;40:135–141. 53. Schnelle JF, Keeler E, Hays RD, Simmons S, Ouslander JG, Siu AL. A cost and value analysis of two interventions with incontinent nursing home residents. J Am Geriatr Soc 1995;43:1112–1117. 54. Golomb J, Ben-Chaim J, Goldwasser B, Korach J, Mashiach S. Conservative treatment of a vesicocervical fistula resulting from Shirodkar cervical cerclage. J Urol 1993;149:833–834. 55. Tostain J. Conservative treatment of urogenital fistula following gynecological surgery: The value of fibrin glue. Acta Urol Belg 1992;60:27–33. 56. Gray M, Bliss DZ, Doughty DB, Ermer-Seltun J, KennedyEvans KL, Palmer MH. Incontinence-associated dermatitis: A review. J Wound Ostomy Continence Nurs 2007;34:45–56. 57. Gray M. Perineal skin care for the continence professional. Continence UK J 2008;2:29–39. 58. Norman RW. Genitourinary disorders. In: Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, 1998:667–676. 59. Gray M. Urinary retention: Management in the acute care setting. Am J Nurs 2000;15:42–60. 60. Gray M. Functional alterations: Bladder. In: Gross J, Johnson BL, eds. Handbook of Oncology Nursing. Boston: Jones and Bartlett, 1998:557–583. 61. 61.Blaivas JG, Weiss JP, Jones M. The pathophysiology of lower urinary tract symptoms after brachytherapy for prostate cancer. BJU Int 2006;98:1233–1237. 62. Parker D, Callan L, Harwood J, Thompson DL, Wilde M, Gray M. Nursing interventions to reduce the risk of catheterassociated urinary tract infection. Part 1: Catheter selection. J Wound Ostomy Continence Nurs 2009;36:23–34. 63. Perry A, Maharaj D, Ramdass MJ, Naraynsingh V. Slow decompression of the bladder using an intravenous giving set. Int J Clin Pract 2002;56:619. 64. Thees K, Dreblow L. Trial of voiding: What’s the verdict? Urol Nurs 1999;19:20–24. 65. Fiers S. Management of the long-term indwelling catheter in the home setting. J Wound Ostomy Cont Nurs 1995;22:140–144.

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72. Openbrier D. Asymptomatic hematuria. Adv Nurse Pract 2003;11:81–88. 73. Herrin JT. General urology: Workup of hematuria and tubular disorders. In: Gonzales ET, Bauer SB, eds. Pediatric Urology Practice. Philadelphia: Lippincott Williams & Wilkins, 1999:69–79. 74. Levenbach C, Eifel PJ, Burke TW, Morris M, Gershenson DM. Hemorrhagic cystitis following radio therapy for stage Ib cancer of the cervix. Gynecol Oncol 1994;55:206–210. 75. Dean RJ, Lytton B. Urologic complications of pelvic irradiation. J Urol 1978;119:64–67. 76. Stapleton FB. Morphology of urinary red blood cells: A simple guide in localizing the site of hematuria. Pediatr Clin North Am 1987;34:561–563.

16o]

Mei R. Fu and Jean K. Smith

Lymphedema Management Until you get lymphedema, you cannot really know what it is. And, you are the only one who notices that the swelling is keeping growing.—A breast cancer survivor with lymphedema

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Key Points Lymphedema, or abnormal swelling is frequently neglected by healthcare providers. Lymphedema is a syndrome of abnormal accumulation of lymph fluid and multiple symptoms that is caused by irreversible damage to, or congenital malformation of, the lymphatic system. There is no cure for lymphedema, and management of lymphedema requires daily self-care and changes in lifestyle. Promotion of lymph fluid flow and prevention of infection is fundamental to achieve long-term effective lymphedema management.

Lymphedema or abnormal swelling is seen regularly in palliative and acute care settings. Lymphedema is often neglected despite its capacity to cause pain, immobility, infection, skin problems, and significant patient distress. Because nurses have access to large, diverse patient populations, they constitute an ideal resource for improving patient care. This text prepares nurses to understand, assess, and manage lymphedema. Information is applicable to various clinical settings, including acute, outpatient, community, and palliative care.1,2

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Definitions Lymphedema, a syndrome of abnormal swelling and multiple symptoms is a chronic condition, resulting from abnormal accumulation of fluid and other elements (e.g. protein) in the tissue spaces due to an imbalance between interstitial fluid production and transport.3 Edema, a symptom, refers to excessive accumulation of fluid within interstitial tissues and is one of the manifestations of lymphedema. Long-term, neglected edema, such as lower extremity venous insufficiency, can develop into chronic lymphedema. Discerning the difference between edema and lymphedema allows appropriate treatment. One or several factors precipitate an imbalance in extracellular fluid volume. Excess fluids, proteins, immunological cells, and debris in affected tissues can produce chronic inflammation and connective tissue proliferation, including hypertrophy of adipose tissue. Some degree of progression usually occurs and can produce subcutaneous and dermal thickening and hardening. Lymphedema and edema are contrasted in Table 16–1, which provides definitions, signs and symptoms, and basic pathophysiology.2–5

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Table 16–1 Comparison of Edema and Lymphedema Edema

Lymphedema

Disorder

A symptom of various disorders

A chronic, currently incurable edema

Definition

Swelling caused by the excessive fluid in tissues (interstitially) due to imbalance between capillary filtration and lymph drainage over time

Swelling (edema) caused by accumulation of fluid within tissues as a result of lymphatic drainage failure, increased production of lymph over time, or both

Signs and symptoms

Swelling, decreased skin mobility Tightness, tingling, or bursting Decreased strength and mobility Discomfort (aching to severe pain) Possible skin color change Pitting scale is often used: 1+ Edema barely detectable 2+ Slight indentation with depression 3+ Deep indentation for 5–30 sec with pressure 4+ Area 1.5–2 times greater than normal

Swelling, decreased skin mobility Tightness, tingling or bursting sensations Decreased strength and mobility Discomfort (none to severe pain) Progressive skin changes (color, texture, tone, temperature), integrity such as blisters, weeping (lymphorrhea), hyperkeratosis, warts, papillomatosis, and elephantiasis

Pathophysiology

Capillary fi ltration rate exceeds lymph transport capacity Example: Heart failure, fluid overload, and/ or venous thrombosis are common causes of increased capillary pressure, leading to an increased capillary fi ltration rate that causes edema Note: Timely treatment of the underlying cause or causes usually reduces edema Prolonged, untreated edema can transition to lymphedema

Inadequate Lymph transport capacity Primary—Inadequately developed lymphatic pathways Secondary—Damage outside lymphatic pathways (obstruction/obliteration) Initial sequelae of transport failure: Lymphatic stasis → Increased tissue fluid → Accumulated protein and cellular metabolites → Further increased tissue water and pressure Potential long-term sequelae: Macrophages seek to decrease inflammation Increased fibroblasts and keratinocytes cause chronic inflammation Gradual increase in adipose tissue Lymphorrhea (leakage of lymph through skin) Gradual skin and tissue thickening and hardening progressing to hyperkeratosis, papillomatosis and other problems Ever-increasing risk of infection and other complications

Sources: References 2, 4.

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Prevalence The world prevalence of edema is unknown,2 and that of lymphedema is poorly documented. According to the World Health Organization, lymphedema affects 250 million people worldwide and the global burden of lymphedema is estimated at 5.78 million disability-adjusted life years lost annually.6 Primary lymphedema, a genetic disorder, is attributed to embryonic developmental abnormalities, which may be sporadic or part of a syndrome caused by either chromosomal abnormalities (e.g., Turner’s syndrome) or inherited single-gene defects.7,8 Primary lymphedema occurs in about one person in 6,000 individuals and is more common in women than men, with a 3:1 ratio.9 The overall prevalence of lymphedema has been estimated as about 2.10 Secondary (acquired) lymphedema

results from obstruction or obliteration of lymph nodes or lymphatic vessels.3,10,11 Cancer, trauma, surgery, severe infections, cardiac disease, poor venous function, immobility or paralyzing diseases are major causes of secondary lymphedema.10 In developed countries, cancer treatment is the main cause of lymphedema. Prevalences of 10–60 have been reported in breast cancer patients11–13 and of 28–40 in patients treated for gynecological cancer.14,15 Other cancers associated with lymphedema risk include prostate cancer; head and neck cancer; sarcoma; melanoma; and lymphoma. Infection, inflammation, and obesity are risk factors for the development of lymphedema in patients treated for cancers.16,17 Lymphatic fi lariasis, a parasitic infection transmitted by mosquitoes, is the predominant worldwide cause of secondary lymphedema in underdeveloped countries. Mosquitoes transmit fi lariasis nematodes, which embed in human lymphatics

Lymphedema Management to cause progressive lymphatic damage. It is estimated that the worldwide incidence of fi lariasis is 750 million.18,19

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Impact Often, the most visible manifestation of lymphedema is persistent swelling.11,13,20 Yet, lymphedema is more than swelling alone. Undiagnosed and unmanaged, lymphedema exerts extensive impact on individual’s quality of life, including physical discomfort, functional disabilities, impaired occupational roles, poor self-image, decreased self-esteem, interrupted interpersonal relationships, financial burden, and life-style changes.21,22,24 Physically, lymphedema leads to the suffering of distressing symptoms such as swelling, firmness, tightness, heaviness, pain, fatigue, numbness, and impaired limb mobility.11,24 Lymphedema also predisposes individuals to fibrosis, cellulitis, infections, lymphadenitis, or septicemia.23 Prolonged fluid stasis can lead to severe skin and tissue symptoms, sometimes referred to as elephantiasis. Symptoms include hyperkeratosis (hard, reptile-like skin), warts, and papillomas (engorged and raised lymph vessels on the skin surface).1 Chronic lymphedema, over a number of years, has also been associated with the development of the rare, usually fatal cancer, lymphangiosarcoma.1,23 Functionally, lymphedema makes it difficult for individuals to accomplish house chores and impairs their abilities to fulfill work that involves heavy lifting, gripping, holding, fine motor dexterity, and repetitive movement of the affected limb.20,21 Some individuals have to give up hobbies that aggravate lymphedema.20 Psychologically, individuals feel stigmatized and a loss of sexual attractiveness because of obvious disfigurement, which often elicits social anxiety, depression, and disruption of interpersonal relationships.21,23,25

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Anatomy, Physiology, and Pathophysiology Edema Edema is a symptom that results from an imbalance between capillary fi ltration and lymph drainage. Edema requires treatment of the underlying disorder that is precipitating tissue fluid excess. Precipitators can include cardiac, hepatic, renal, allergic, or hypoproteinic disease; venous obstruction; and medication complications26 (see Table 16–1). Edema can develop into secondary lymphedema with sufficient lymphatic damage, such as in venous insufficiency or fractures of the lower extremities.4,27,28

Lymphedema A healthy lymphatic system helps regulate the tissue cellular environment, including collecting and returning plasma and proteins.4 Daily, 20 to 50 of the total accumulating

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plasma proteins travel through 2 to 4 liters of lymph fluid in a healthy lymphatic system.25 Lymphatics also remove cellular waste products, mutants, and debris; eliminate nonself antigens; and regulate local immune defense in the process of maintaining homeostasis4 (Figure 16–1). Unidirectional vessels traverse from superficial to deep lymphatics through 600 to 700 lymph nodes, carrying lymph fluid to the venous system at the right or left venous angle of the anterior chest on either side of the neck (Figure 16–2). Lymph nodes purify lymph fluid, eliminating defective cells, toxins, and bacteria, explaining the increased risk of infection for patients with compromised lymphatics.4 Lymphedema pathology signifies malfunction in any part of the process of collecting, transporting, and depositing lymph into the venous system. Lymphedema pathophysiology signifies disruption of these processes and is described in Table 16–1. In brief, lymph fluid is transported initially from the interstitium by the initial lymphatic vessels, fi ltered through lymph nodes, then drained into the two large lymph collecting ducts, and finally returned to the venous bloodstreams via the left and right subclavian veins (Figure 16–3). Damage to any structures of the lymphatic system can lead to accumulation of lymph fluid in the affected area. Further, physiological variations in each individual’s lymphatic system, such as numbers or sizes of lymph nodes, make it difficult to quantify each individual’s risk for lymphedema. Secondary lymphedema from cancer treatment is caused by trauma to the lymphatic system mainly from surgery and radiotherapy.29,30 Surgery creates disruption to the lymphatic system by directly dissecting lymph vessels and removing lymph nodes.11 Unfortunately, lymph nodes do not regenerate once dissected.31 Formation of scar tissue and tissue fibrosis from surgery creates blockage to the lymphatic system. The disruption or blockage of the lymphatic system reduces its ability to transport and fi lter the lymph, resulting in a functional overload and insufficient capability of the lymphatic system to transport normal volume of lymph.32 As a result, an abnormal accumulation of lymph fluid occurs, which leads to the swelling of the affected area. Radiation exposure during radiotherapy is also traumatic to the lymphatic system. Radiation impairs the lymphatic system by causing tissue fibrosis surrounding the lymphatic vessels,33 and it reduces lymphatic transport reserve by increasing long-term changes in basal lymph circulation and lymph flow in the affected area.32 While lymphatic vessels are relatively insensitive to radiotherapy, lymph nodes are radiosensitive to conventional doses of radiotherapy.30 The radiated lymph nodes respond first with lymphocyte depletion, followed by fatty replacement, then by fibrosis.30 As a result, radiation hinders lymph nodes from properly fi ltering and transporting lymph and alters immune function. Research has not clarified the defi nite roles of chemotherapy in contributing to lymphedema. Besides the definite risk from cancer treatment, certain personal risk factors such as weight gain or obesity (body mass index [BMI] >30) and immobility increase the risk for

Lymph valve

Interstitial fluid entering lymph vessel

Lymph flow through vessel

Interstitial space and tissue cells

Plasma leaving artery

Artery (blood flow away from heart)

Vein (blood flow toward heart)

Lymph vessel (lymph flow toward heart)

Capillary Closed valve

Lymph flow through vessel

Open valve

Interstitial fluid

Lymph vessel

1.2A

1.2B

Figure 16–1. Lymphatic vessels and valves. Source: Reprinted, with permission, from the American Cancer Society. Lymphedema:

Understanding and Managing Lymphedema After Cancer Treatment. Atlanta, GA: American Cancer Society; 2006, www.cancer.org/bookstore.

Lymph node Filtered lymph moving toward heart

Right (lymphatic) duct

Left (thoracic) duct

Right drainage area

Thoracic duct

Left drainage area

Lymph entering lymph node

Immune system cells

Valves allow lymph to move toward heart Figure 16–2. Right (lymphatic) duct, left (thoracic duct), and

drainage areas. Source: Reprinted, with permission, from the American Cancer Society. Lymphedema: Understanding and Managing Lymphedema After Cancer Treatment. Atlanta, GA: American Cancer Society; 2006, www.cancer.org/bookstore.

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Figure 16–3. Lymph node. Source: Reprinted, with permission, from the American Cancer Society. Lymphedema: Understanding and Managing Lymphedema After Cancer Treatment. Atlanta, GA: American Cancer Society; 2006, www.cancer.org/bookstore.

Lymphedema Management lymphedema.16,17,34 Factors that trigger or stimulate development of lymphedema in an at-risk person have been identified, including: overuse of the affected limb; heavy lifting; infection; injury or burns to the affected limb; prolonged heat exposure; constriction; and traveling by air.16,17,34

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Assessment and Diagnosis Early diagnosis is essential for prevention of complications and optimal management.11,20 Diagnosing lymphedema remains a clinical challenge. Several factors contribute to the challenge: lack of universally recognized diagnostic criteria; failure to precisely evaluate symptoms; co-existing conditions; and lack of awareness of lymphedema among healthcare professionals.35 To ensure accurate diagnosis, it is important to conduct a careful review of the patient’s health history to rule out other medical conditions that may cause similar symptoms, such as recurrent cancer, deep vein thrombosis, chronic venous insufficiency, diabetes, hypertension, and cardiac and renal disease. These alternative diagnoses should be ruled out before establishing a diagnosis of lymphedema and referring the patient for lymphedema therapy. “Best Practice”36 components of lymphedema nursing assessment are displayed in Table 16–2. The first assessment priority is proper diagnosis. For example, assessment reveals that early symptoms of congestive heart failure are responsible for a suspected lymphedema in one elderly, frail patient referred for lymphedema assistance. When the results of the physical assessment and patient history are combined with dialogue, the patient reports that she has replaced her cardiac medication with several natural supplements in order to save money and avoid “toxic drugs.” Edema then resolves within several days after she has resumed her cardiac medications. Some patients, especially those who are elderly, chronically ill, or significantly distressed, are not able to accurately provide a medical history. Requesting physician (physician assistant or nurse practitioner) dictations can provide excellent assessment information. A patient health history questionnaire facilitates assessment. Useful health categories include: patient demographics; health history; etiology; signs and symptoms; complications; work and household responsibilities; support from significant others; spiritual health; and lymphedema goals.36,37 Completion of the questionnaire before the initial assessment improves assessment accuracy and content and allows additional time for important nurse–patient dialogue.38 Dialogue helps nurses to understand patients’ perspective and gain essential patient knowledge: (1) patient’s view of lymphedema, (2) patient’s readiness for instruction and treatment, (3) patient’s pertinent work and lifestyle, (4) spiritual concerns, (5) illness and adjustment issues, and (6) patient’s desired goals. Often the patient’s initial goal is cure, which is unattainable. In this situation, the patient needs time to adopt new goals. Nurses’ awareness of patient quality-of-

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Table 16–2 Sequential Components of Lymphedema Assessment Rule out or address immediate complications (i.e., infection, thrombosis, severe pain, new or recurrent cancer, significant nonrelated disorders) History and physical examination Routine physical assessments: vital signs, blood pressure, height and weight, body mass index Past and current health status, including medications and allergies (especially antibiotic allergies and history of infection, trauma, or surgery in affected area) Current activities of daily living (job, home responsibilities, leisure activities, sleep position, activities that aggravate lymphedema) Current psychological health, support people, view of lymphedema and health History of lymphedema etiology, presentation, duration, and progression Patient knowledge of and response to lymphedema, interest in assistance and goals Third party payer status Quantification of lymphedema status (lymphedema signs and symptoms, volume, pain and other neurological symptoms, tissue status, range of motion of nearby joints, site-specific and overall patient function)

life goals36 fosters collaboration and management success. Instruction, support, multidisciplinary referrals, goal-setting, assistance with self-care, complication avoidance, and long-term management are improved by nurses’ and healthcare providers’ understanding of patients’ perspectives and knowledge.36,39,40 For example, a 58-year-old woman presented with large lower extremity primary lymphedema. She expressed a positive, easygoing life view; had a boyfriend, children, and grandchildren; cared for an elderly mother; and worked fulltime, 50 miles away from home. She stated that her treatment goal was to “wear boots.” If the nurse’s goals were complete limb reduction and perfect compliance, both the nurse and the patient would be likely to experience frustration and failure. This failure could cause the nurse to conclude that the patient’s poor outcome was caused by poor compliance. Alternatively, the nurse could incorporate the patient’s life view, goals, and responsibilities into a workable treatment and self-care program. An early lymphedema diagnosis is often determined solely from a history and physical examination,39–41 especially if conservative management is planned and symptoms are not severe. Questionable clinical symptoms or etiology may require further evaluation. Lymphoscintigraphy (isotope lymphography) can ensure definite lymphedema diagnosis.4 Lymphography (direct), is now rarely used in lymphedema patients30 because of its potential to cause lymphatic injury and its inability to clarify function.4

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Assessment for infection, thrombosis, or cancer metastasis (Figure 16–4) is required at every patient contact.41,42 Although later signs of infection or thrombosis are well known, awareness and careful assessment allow early diagnosis and treatment. Lymphedema progression or treatment resistance may be the earliest sign of complication or may represent a lack of response to current treatment. Changes in pain or comfort, skin (color, temperature, condition), or mobility and range of motion are other possible early signs of major complications. Most infections develop subcutaneously, beneath intact skin. Cultures are not recommended, because they rarely document a bacterial source and can further increase the risk of infection.31 Suspected thrombosis or new or recurring cancer requires appropriate diagnostic evaluation (e.g., Doppler ultrasonography, magnetic resonance imaging, positron emission tomography, computed tomographic scanning). Venous ultrasonography

is reported to be safer than venography for evaluation of suspected thrombosis in a limb with, or at high risk for, lymphedema.43 Figure 16–4 depicts ongoing complication assessment and decision-making. Basic treatment of complications is also included. Signs and symptoms of metastasis can include pain, neuropathies, new masses or lesions, skin/ tissue color and texture changes, and treatment-resistant rashes. For thrombosis, signs can include distended veins, venous telangiectasis, and rapid edema progression beyond the affected limb.27 Th rombosis requires anticoagulation, pain control, rest, and avoidance of use of external compression. Currently, no research clarifies the appropriate timing for use of compression after thrombosis, and the traditional 6-month delay until use of compression should be assumed.40 Discussion of this issue with the physician is appropriate. Compression refers to the deliberate application of pressure

Patient with Persistent Edema

Any health care provider

PCP, MD, DO, NP, PA

Nurse explains lymphedema service to patient

Possible: A. Infection B. Thrombosis C. Cancer Metastasis

Exam

Diagnostic Evaluation: Lab, US, or Imaging

Assessment by clinical nurse specialist (CNS)

No A, B or C Positive A, B or C

A

B

CNS Assessment

C

A Infection

B Thrombosis

C Metastasis

Antibacterial Antipyretic Fluids Rest

Anticoagulant Antipyretic Antibacterial Fluids & rest Support to skin? F/U blood work

Appropriate cancer diagnosis & treatment

Past medical history TPR, BP, BMI, ADLs Medications/disabilities Edema history Lymphedema etiologies Psychosocial status & support Cultural factors Patient goals & needs Lymphedema measures Readiness for self-care & treatment

Long-Term Management Complication subsides or stabilizes

Edema gone

Edema persists

Provide high-risk lymphedema precautions/instructions.

External compression, lymphedema instruction, exercise, self-care program, referrals, support

Intensive treatment

Regular follow-up Supportive treatment

Figure 16–4. Assessment of complications in lymphedema management. ADLs, activities of daily living; BMI, body mass index; BP, blood

pressure; DO, doctor of osteopathy; F/U, follow-up; MD, doctor of medicine; NP, nurse practitioner; PA, physician assistant; PCP, primary care physician; TPR, temperature, pulse, and respirations; US, ultrasonography.

Lymphedema Management to produce a desired clinical effect.2 In contrast, some physicians recommend the use of limb support for several days or longer after painful thrombosis-related swelling, especially in the presence of metastatic cancer. Support signifies the retention and control of tissue without application of pressure.2 Until research enables a practice standard, the physician must determine the use and timing of support and compression. A diagnosis of early thrombosis was achieved for a 67-year-old patient with advanced metastatic lymphoma and leukemia when left leg thrombosis developed rapidly while the patient was hospitalized for a cancer complication. Th rombosis encompassed the entire leg. During anticoagulation, leg edema, pain, and signs of venous insufficiency continued to progress. Several weeks later, the patient was referred to the clinical nurse specialist for assistance. Excess edema volume in the affected leg (compared with the nonaffected leg) was 94 (4816 mL). A Tensoshape product (BSN Medical Ltd., Brierfield, England) was provided (with physician approval) for 1 week, and 9 limb reduction was achieved. Good product tolerance was reported. A demonstration of compression sleeve (lower extremity, full-leg product that uses high-low foam and a spandex compression sleeve; Peninsula Medical, Inc., Scotts Valley, CA) was then provided with instructions to use it as tolerated, reverting to the Tensoshape product whenever the compression sleeve was removed. One week later, follow-up assessment revealed edema reduction

A

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of 43, compared with the initial volume. Excess volume had decreased from 94 to 54 (2730 mL). The patient also agreed to referral to a lymphedema therapist to obtain daytime compression stockings and to undergo several sessions of lymphatic drainage massage. Five weeks aft er the initial assessment, the patient returned for follow-up wearing her new stockings, her “tight-legged” slacks, her wig, and a large smile. Pain level, skin color and condition, gait, and range of motion of the ankle, knee, and hip were significantly improved (Figure 16–5A). Edema reduction in the lymphedema limb was 81; excess volume was 18 (926 mL). By 4 1 /2 months following the initial assessment, edema reduction had continued. Treatment included daytime stockings and compression sleeve usage several nights a week. Edema reduction at this time was 87. Excess limb volume, compared to the contralateral leg, was 12 (634 mL). Figure 16–5B displays improvement from the initial assessment through the 4-month follow-up. Lymphedema symptoms, such as heaviness, tightness, fi rmness, pain, numbness, or impaired mobility in the affected limb, may indicate a latent stage of lymphedema in which changes cannot be detected by objective measurements.3,44 The latent stage of lymphedema may exist months or years before overt swelling occurs. Assessing lymphedema-related symptoms plays an important role in diagnosis until objective measurements capable of detecting latent stage of lymphedema are established in at-risk individuals.45

B

6000

5000

Volume (mL)

4000

3000

2000

1000

0

Feb 9/04

Feb 16/04

Feb 23/04

Mar 15/04

Apr 26/04

Jun 21/04

Date Figure 16–5. Metatstatic lymphoma patient with severe deep venous thrombosis in the left leg, showing excess edema volume (mL) in the affected compared with the unaffected leg. The graph shows the improvement in the lymphedema over time.

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Quantification of Lymphedema A variety of measurement approaches make quantification of lymphedema a problem. Methods of measuring limb volume or circumference include sequential circumference limb measurement,11 water displacement and infra-red perometry.46 Bioelectrical impedance is emerging as a possible alternative. Unfortunately, lymphedema can also occur in the face, neck, shoulder, breast, abdomen, thoracic regions, and genital areas, which presents a challenge for quantifying lymphedema. Sequential Circumferential Arm Measurements. Measuring limb volume and circumference are the most widely used diagnostic methods. A flexible non-stretch tape measure for circumferences is usually used to assure consistent tension over soft tissue, muscle, and bony prominences.11 Measurements are done on both affected and non-affected limbs at the hand proximal to the metacarpals, wrist, and then every 4 cm from the wrist to axilla. The most common criterion for diagnosis has been a fi nding of ≥ 2 centimeters or ≥200 mL difference in limb volume as compared to the non-affected limb or 10 volume difference in the affected limb.11,46 Water Displacement. Although water displacement has been considered the “gold standard” for limb volume measurement and is identified as a sensitive and accurate measure in the laboratory setting, water displacement is seldom used in clinical settings because of spillover and hygienic concerns. Patients submerge the affected arm in a container fi lled with water and the overflow of water is caught in another container and weighed. This method does not provide data about localization of the edema or shape of the extremity.47 The method is contraindicated in patients with open skin lesions. Patients may find it difficult to hold the position for the time needed for the tank overflow to drain. Infrared Perometry. The Perometer 400T or S350, an optoelectronic device developed to meet the need for a quick, hygienic, and accurate method for volume calculation, works similar to computer-assisted tomography, but makes use of light instead of x-rays.48 The volume and shape of the limb can be measured and volume changes can be calculated in seconds. Armer and colleagues46 found perometry to be as reliable a measurement of limb volume change over time as circumferences in individuals undergoing breast cancer treatment. Bioelectrical Impedance (Imp XCA) Analysis. Bioelectrical impedance has been used for many years to detect early onset lymphedema and to monitor results of lymphatic massage in clinical settings outside the United States.49 The Imp XCA® (Impedimed, Brisbane, Australia), is a new generation impedance device for clinical assessment of unilateral lymphedema

of the arm. The United States Food and Drug Administration approved the use of the Imp XCA® in clinical settings in March of 2007. The Imp XCA® measures impedance and resistance of the extracellular fluid using a single frequency below 30 kHz. The device uses the impedance ratio values between the unaffected and affected limb to calculate a Lymphedema Index. Measurement of limb takes less than five minutes when using the Imp-XCA® and results are immediately available to clinicians. Further research is needed to establish the reliability and validity of the device. The technique is currently of limited use in bilateral swelling (Figure 16–6).

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Lymphedema Risk Reduction No research has demonstrated that “prevention” of lymphedema is possible. Rigid prevention measures may promote fears and frustration. The term “risk reduction” appears more accurate.45 One essential risk reduction behavior is to achieve and maintain ideal body weight, because excess body weight is associated with decreased lymphatic function.16,17,34 Infection prevention is vital for lymphedema risk reduction;16,17 infection is a significant risk factor and is the most frequent lymphedema complication.20 Risk increases with breaches in skin integrity. Occasional drawing of blood, when no other reasonable option exists, is necessary for some patients. Patients can request an experienced phlebotomist and emphasize their increased infection risk. Subcutaneous, intramuscular, or intravenous injections can cause an allergic or inflammatory response and/or infection that compromises a weakened lymphatic system. These risks must be compared with the benefit and risk of use of a central venous catheter or suboptimal venipuncture site such as the lower extremity.50 Diabetes potentially increases breast cancer patients’ lymphedema risk when the affected limb is used for continual blood sticks or insulin injections. Patients with bilateral limb risk, especially of the upper extremities, face lifelong decisions regarding adherence to precautions. Breast cancer disease and treatment factors are associated with increased lymphedema risk, including advanced cancer stage at diagnosis and radiation therapy to the axilla or supraclavicular area after a mastectomy. Benefits of early nurse interventions in decreasing lymphedema occurrence, severity of secondary lymphedema, and lymphedema symptoms in breast cancer survivors have been documented.45,51 Nurses can assist high-risk patients by presenting or reinforcing prevention information and encouraging use of a compression sleeve at the earliest sign of edema. Emphasis on self-protection rather than rigid rules fosters patient empowerment.20,45 For example, an empowered patient assumes responsibility for reminding staff to avoid use of the affected arm rather than expecting medical personnel to remember to do so. Exercise restrictions have long been recommended for breast cancer survivors. However, a growing body of evidence

Lymphedema Management

•

The Imp SCA® (Impedimed, Brisbane, Australia) uses a single frequency below 30 kHz to measure impedance and resistance of the extracellular fluid.

•

The device uses the impedance ratio values to calculate a Lymphedema Index [L-Dex], ranging from - 10 to +10.

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Advantages: Time- and cost-efficient, hygienic Easy mastery of procedure Portable Reliability is established

Limitations: Further research is neeeded to establish validity and sensitivity of the device.

Figure 16–6. Bioelectrical Impedance Analysis (ImpXCA). Source: © copyright by Mei R. Fu. All rights reserved.

suggests that exercise does not necessarily increase lymphedema risk.52,53 Although additional research is needed, preliminary research suggests that breast cancer survivors should be encouraged to carry out all postoperative exercises, resume normal precancer activities, and be as fit as possible, while regularly monitoring their high-risk or affected limb.52–54 In addition to the importance of physical exercise in general health, weight control, and quality of life, physical exercise can promote lymph fluid drainage through large muscle movement. Individuals should be instructed to perform physical exercise according to the general exercise guildelines:54,75 (1) initiate at lower intensity exercise; then graduate to increase exercise intensity; (2) exercise to the extent that the affected body part is not fatigued; (3) modify physical exercise to reduce the risk of trauma and injury; and (4) use a compression garment during exercise.

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Long-Term Management Versus Treatment Edema usually subsides with proper treatment, whereas lymphedema requires long-term management.20,36,55 Lymphedema is a lifelong and chronic condition. Long-term management focuses on daily activities and strategies undertaken to decrease the swelling, relieve symptom distress, and prevent acute exacerbations and infections.20 Components of

Table 16–3 Components of Long-Term Lymphedema Management History, physical examination, and ongoing assessment and support Individualized and holistic care coordination Multidisciplined referrals Comprehensive initial and ongoing patient instruction Ongoing psychosocial support Promotion of ongoing optimal self-care management Facilitation of appropriate evidence-based, individualized treatment Patient and practice outcome measurement Access and long-term follow-up and management Communication and collaboration with related health care providers

long-term lymphedema management are listed in Table 16–3 and described throughout the chapter. Long-term management is a process of fostering optimal physical, functional, psychosocial, and spiritual wellness. Spiritual care guidelines have been gradually evolving in nursing for several decades. Spiritual care supports patients’ efforts to make meaning out of illness and to redefine themselves in their new state of being. Specific spiritual interventions can include: (1) support during the struggle with and exploration of life’s ambiguities;

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(2) acknowledgment of patients’ real and potential losses and victories; and (3) guidance in patients’ exploration of end-oflife issues and decisions.37,56,57 Long-term management requires quantification of ongoing patient, nurse, and program outcomes.36,55–57 Limb size or volume has been commonly used in both research and practice to evaluate treatment effectiveness. Managing limb size or volume requires patients to initiate and maintain behaviors that promote lymph drainage and reduce triggering factors leading to severe lymphedema.20 Other important outcomes include pain level, skin condition, range of motion of nearby joints, affected area and overall patient function, body mass index (BMI), incidence of infection, and other complications.53,57–59 Patient’s overall lymphedema-symptom experience such as psychological distress and fatigue are subjective outcomes which require supportive services from healthcare professionals such as psychologists or conditioning experts.20,36 Long-term management necessitates a multidisciplinary approach.55 At each patient visit, nurses should assess for signs of infection, limb confirmation, and degree of swelling. Additional inquires need to be made as to any other symptoms patients may be experiencing because of the lymphedema. Nurses should assess self-care behaviors and encourage patients with lymphedema to wear their compression sleeves as prescribed, which includes during activities such as flying and exercise. All physicians or advance practice nurses should immediately refer patients with new onset or worsening lymphedema to certified lymphedema therapists for volume reduction treatment. They should also be prepared to prescribe antibiotics for infections. Certified lymphedema therapists should provide treatment for the swollen limb and provide individualized patient education about selfcare practices (including recommended exercise and exercise progression based on individual lymphedema risk factors and level of fitness) and answer other questions, such as “Should a particular patient have massage in the limb by non-certified practitioners?” Collecting and reviewing outcomes with patients over time fosters ongoing instruction, complication prevention, sustained lymphedema improvement, and patient empowerment.20,34,59

9= CASE STUDY JoAnne, A Breast Cancer Survivor with Lymphedema JoAnne was diagnosed with breast cancer at age 55 years. Lymphedema manifested during radiation therapy several months after conservative breast surgery that included standard axillary node dissection. Lymphedema was accompanied by erythema and petechiae, which varied in intensity throughout each day. Antibiotic therapy did not provide benefit and was poorly tolerated. Edema volume in the surgical arm, compared with the nonaffected arm, was 29 (734 mL). No previous treatment had been available to JoAnne, who lived and received her breast cancer

treatment a 2-hour car ride away from the lymphedema facility. JoAnne was attentive and participatory during assessment and instruction. However, she was reluctant to use the recommended compression sleeve and gloves because of her belief of skin infection. She had a friend in whom this occurred. Acceptance and support of JoAnne’s viewpoint validated her coping activities and fostered future self-care decision-making.20,34 Patient readiness for, and acceptance of, treatment is crucial to successful chronic disease management and warrants nurses’ patience.34 JoAnne agreed to use demonstration nighttime compression products (a compression and Medi glove) for 6 to 8 hours at a time. Instruction was provided, including removal of the product (until she could speak with the clinical nurse specialist) if pain, numbness, tingling, infection, bleeding, or worrisome signs or symptoms occurred. One month later, she obtained her compression sleeve and assumed full responsibility for regular replacement. JoAnne gradually increased her product-wearing time. Eight months after assessment, she had achieved 45 limb reduction. Excess limb volume, compared with the nonaffected arm, had decreased from 29 to 16 (405 mL). One year after assessment, JoAnne requested assistance in obtaining a compression sleeve and glove for daytime use. Over the next several months, daytime compression resulted in an 83 limb volume reduction compared with the initial pretreatment volume. Edema volume in the affected arm was reduced to 5 (124 mL). Patient self-reported satisfaction and compliance with management was consistently high, and no limb complications occurred. Asymptomatic mild erythema has continued. Follow-up is currently every 6 months. o]

Edema Treatment Edema treatment focuses on detection and intervention related to the causative factor or factors. Effective treatment stabilizes the interstitial fluid volume.4 Tissue support and/ or gentle compression can be useful in relieving edema that might progress to lymphedema.

Lymphedema Treatment Lymphedema treatment refers to therapies to help decrease or maintain swelling, including surgery, pharmacological therapy, and comprehensive decongestive physiotherapy.20,61 Pharmacological therapy and surgery have limited proven effectiveness. Pharmacological therapy for lymphedema has included use of coumarin (a benzopyrone) and diuretics; however, coumarin and diuretics are not recommended for the treatment of lymphedema and are proven to be ineffective.61,75 Several surgical interventions include microsurgical anastomoses, debulking, and liposuction. Surgical procedures

Lymphedema Management aimed at enhancing lymphatic function have been performed to try to remove excess fluid or tissue in the affected area;62,75 these procedures have been shown to be only marginally effective. Surgery does not cure lymphedema, and follow-up use of compression is necessary.79 Surgery has provided cosmetic improvement in eyelid or genital edema.2,75 Potential complications may occur with surgical management of lymphedema, such as recurrence of swelling, poor wound healing, and infection; thus surgical treatment should only be considered when other treatments fail, and with careful consideration of the benefits to risks ratio.63 Liposuction has been performed on patients with longstanding, breast-cancer-related lymphedema.82 It removes excess fat tissue and is considered only if the limb has not responded to standard conservative therapy.75 Lack of response to conventional treatment resulted from formation of excess subcutaneous adipose tissue secondary to slow or absent lymph flow.80–82 Liposuction has increased skin capillary blood flow and does not further impair already decreased lymph transport capacity in breast cancer patients with lymphedema.81,82 Patients are able to maintain limb reductions with concordant use of compression garments after liposuction.75,81,82 Liposuction does not correct inadequate lymph drainage and is not indicated when pitting is present. Liposuction has also been used for primary and secondary leg lymphedema with promising results.75

Infection Prevention and Treatment Infection is the most common lymphedema complication.4 Lymph stasis, decreased local immune response, tissue congestion, and accumulated proteins and other debris foster infection.64 Traditional signs and symptoms (fever, malaise, lethargy, and nausea) are often present. Decades of literature support prompt oral or intravenous antibiotic therapy.4,61 Because streptococci and staphylococci are frequent precipitators, antibiotics must cover normal skin flora, as well as gram-positive cocci,61,65 and have good skin penetration.61,64,65 Early detection and treatment can help prevent the need for intravenous therapy and hospitalization.65 Intravenous antibiotic therapy is recommended for systemic signs of infection or insufficient response to oral antibiotics.65 Nursing activities include assisting patients in obtaining prompt antibiotic therapy, monitoring and reporting signs and symptoms, and providing instruction regarding high fluid intake, rest, elevation of the infected limb, and avoidance of strenuous activity. Garment-type compression is encouraged as soon as tolerable during infection.66 Wound care or infectious disease specialists can be helpful in complicated cases. Infection prophylaxis has been highly effective for patients who experience repeated serious infections or inflammatory episodes.66–69 Effective edema reduction and control may also help prevent lymphedema infection.69 The feet, which are especially susceptible to fungal infections in lower extremity lymphedema, can exhibit peeling,

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scaly skin, and toenail changes. Antifungal powders are recommended prophylactically. Antifungal creams should be used at the first sign of fungus. Diabetic-like skin care and use of cotton socks and well-fitted, breathable (leather or canvas), sturdy shoes are beneficial.70

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Pain Management Approximately 30 to 60 patients with lymphedema post breast cancer treatment reported pain.71,72 Causes of pain included infection, postoperative changes in the axilla, postmastectomy pain syndrome, brachial plexopathy, various arthritic conditions, peripheral entrapment neuropathies, vascular compromise, and cancer recurrence.65,71,72 Sudden onset of pain requires careful assessment for complications (see Figure 16–4). Use of the 0-to-10 pain scale is recommended for cancer pain assessment.72 Standard pain management principles are applicable for lymphedema-related pain.

Self-Care Optimal patient self-care typically includes adherence to risk reduction behaviors, use of compression, weight management, fitness and lymphedema exercises, optimal nutrition and hydration, healthy lifestyle practices, and seeking assistance for lymphedema-related problems. Patient empowerment for optimal self-care is a great impetus to long-term management success.20,34,55 For example, one female patient attended school, worked part-time, and was a single parent of two sons. She had experienced many lymphedema treatment failures after her initial presentation of lymphedema at age 5. Treatments had been painful, distressing, and unsuccessful. Emotional scars had resulted from having legs so different from those of her friends. Five years of intermittent support and encouragement were required to achieve patient treatment readiness. Achieving a successful treatment program required another year and included surgical repair of ingrown toenails. Use of outcomes provided concrete data that fostered excellent compression compliance (daytime garment and nighttime lower leg compression). Ultimately, external compression reduced pain and fatigue sufficiently to allow 3 extra hours of activity per day. Long-term treatment success included sustained reduction of lymphedema and pain, elimination of recurrent infections, excellent compression compliance and self-care, high treatment satisfaction, and minimal need for lymphedema assistance.

Elevation Elevation of the affected limb above the level of the heart is often recommended to reduce swelling.3,75 Elevation promotes the drainage of lymph fluid by maximizing venous drainage and by decreasing capillary pressure and lymph production.

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Elevation is considered the main treatment for early stage of lymphedema of an upper limb.3 Anecdotal evidence suggests that limb elevation when the patient is sitting or in bed may be a useful adjunct to active treatment, but should not be allowed to impede function or activity.75 Patients should be encouraged not to sleep in a chair but to go to bed at night to avoid the development of ‘arm chair’ legs or exacerbation of lower limb lymphedema. Patient avoidance of limb dependency is also appropriate risk-reduction strategy and ameliorates the symptoms of lymphedema.

Advanced lymphedema can cause several skin complications, including lymphorrhea, lymphoceles, papillomas, and hyperkeratosis. Lymphorrhea is leakage of lymph fluid through the skin that occurs when skin cannot accommodate accumulated fluid. Nonadherent dressings, good skin care, and compression are used to alleviate leakage. Compression and good skin care also reduce the occurrence of lymphoceles, papillomas, and hyperkeratosis; these complications reflect skin adaptation to excess subcutaneous lymph.

Exercise

Bandages

Exercise or body movement is an integral part of lymphedema management and risk reduction. Exercise improves muscular strength, cardiovascular function, psychological well-being and functional capacity.75 Gentle resistance exercise stimulates muscle pumps and increases lymph flow; aerobic exercise increases intra-abdominal pressure, which facilitates pumping of the thoracic duct.54,65 A tailored exercise or body movement program that combines flexibility, resistance and aerobic exercise may be beneficial in reducing the risk of, and controlling, lymphedema.75 General exercise guidelines include:54,75

Multi-layer lymphedema bandaging (MLLB) provides external compression. For some patients, MLLB may be used as part of long-term or palliative management. MLLB uses inelastic or low-stretch bandages to produce a massaging effect and stimulate lymph flow.75 MLLB is especially important for patients with severe lymphedema, such as lymphedema with morbid obesity or neglected primary lymphedema. It is also important for patients who choose self or caregiver bandaging to enhance comfort or for use at night when they wear a compression garment during the day.75 Foam or other padding is often used under bandages to improve edema reduction and foster limb uniformity. The time, effort, and dexterity required for bandaging can become burdensome or impossible for some patients, necessitating the use of an alternative compression method.20 MLLB should be avoided for the following conditions: (1) Severe arterial insufficiency with an ankle/brachial index (ABI) of 3 mg per day Monitor QT interval Due to long half-life may be able to dose once daily after effective dose established Useful if a more sedating agent is desired Higher risk of EPS than with haloperidol Monitor blood pressure for orthostatic hypotension If using IV route, give by slow push or infusion over 10–15 minutes

Class characteristics: • EPS equivalent to or slightly less than those of haloperidol • Prolonged QT interval • More expensive than typical antipsychotics • Available in orally disintegrating tablets • Available in orally disintegrating tablets • Monitor blood pressure for orthostatic hypotension • Most sedating of this class • Preferred agent in patients with Parkinson’s Disease • Monitor blood pressure for orthostatic hypotension • Often worsens delirium • Sedating, but can see paradoxical excitation • Medication of choice in patients with delirium associated with sedative or alcohol withdrawal or those with neuroleptic malignant syndrome • Second-line agent for delirium in patients with Parkinson’s Disease

PO, oral; SL, sublingual; PR, rectal; SQ, subcutaneous; IV, intravenous; ATC, around the clock; PRN, as needed; EPS, extrapyramidal symptoms Sources: Inouye (2006), reference 3; Breitbart & Alici (2008), reference 23; Shuster et al. (2008), reference 113.

intravenously.117 In nonterminal patients, QT intervals should be monitored regularly.23 And, consideration should be given to switching to a different route as soon as possible, recognizing the potential for increased extrapyramidal symptoms with the oral route. Chlorpromazine is another typical antipsychotic that may be used to treat delirium. Doses of 12.5 mg to 50 mg by the oral, sublingual or parenteral route may be used.113 Chlorpromazine is associated with more extrapyramidal side effects, orthostatic hypotension, and sedation than haloperidol. Therefore, it is usually used only when the additional sedation will be of benefit and haloperidol has not been completely effective; i.e., in patients described as experiencing terminal anguish or refractory delirium. The newer, atypical antipsychotics have the advantage of fewer extrapyramidal side effects, less effect on QT interval, and less frequent administration (once or twice daily).109,112,114,118,119,120 Starting doses are outlined in Table 21–5. None of these medications are FDA approved for the treatment of delirium, and all of them are more expensive than haloperidol. The authors of a systematic review of the literature

concluded that haloperidol (in doses less than 3.5 mg per day), risperidone, and olanzapine were equally effective in treating delirium with few adverse events, based on only three studies that satisfied the selection criteria.112 Other atypical antipsychotics that are reported to be effective in treating delirium include aripiprazole and quetiapine.113,114,118,119,121 Cholinesterase inhibitors have been studied for the treatment of delirium based on the understanding that disruption of the cholinergic system may be one of the underlying mechanisms of this syndrome. However, there is currently no evidence from controlled trials that the cholinesterase inhibitors are effective in the treatment of delirium.120 Benzodiazepines are not recommended for treatment of delirium, except for delirium associated with alcohol or sedative-hypnotic drug withdrawal.23,34,108,109,122 This class of medications tends to cause oversedation and exacerbate confusion, potentially making delirium worse.115 However, when antipsychotics alone do not control the symptoms of delirium, a sedative agent such as a benzodiazepine, propofol, or opioids may be added.23 Refractory delirium is often cited as an indication for palliative sedation, accounting for between

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5 to 57 of the patients requiring palliative sedation for comfort.123,124 Midazolam is the most frequently used medication for palliative sedation.123 While sedation may decrease severe agitation, it decreases the capacity to communicate.124 Clinicians should periodically lighten the sedation to reassess delirium and to allow communication with family and staff, if possible.23

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Patient Family Teaching Patient and family education is the cornerstone of comprehensive end-of-life care. Through proper education and support, cognitive disorders may be avoided, recognized early, or shortened. When a cognitive disorder leads to distress, appropriate education and support can decrease the severity of symptoms by providing open and adequate communication to lessen the stimuli that exacerbate symptoms. Teaching activities associated with cognitive disorders at the end of life involve prevention, identification, intervention, and supportive care issues. Preventing Delirium in the Dying. As medications are the most common reversible and preventable cause of delirium, patients and families require education on the proper dosing and scheduling of all medications.3,33 Delirium can be caused by taking too much medication (leading to toxicity) or too little (causing discomfort or potential withdrawal). It is important for nurses who care for patients in home care and clinic settings to review all medications with the patient and primary caregiver. Ideally, patients and family caregivers will recognize both the generic and trade names of their medications. Patients and family caregivers need to know the schedule for each medication, the side effects of each to report to their clinicians, and what to do if they should lose or run out of a medication. Medication charts, pillboxes, and medication information cards or sheets may be useful tools. Patients and families also need to understand that any discomfort that is not adequately addressed can lead to complications, such as feeling nervous, confused, or worse. Thus, education for managing symptoms such as pain, nausea, constipation, and insomnia, is an important component of the teaching plan to prevent delirium. Knowing that sensory deprivation, sensory overload, and unfamiliar or threatening surroundings may contribute to the development of delirium, it becomes evident that patient and family education should include evaluating the patient’s sensory environment and developing strategies to provide appropriate levels of sensory stimulation. For some patients, this may mean encouraging interactions with caregivers and others (e.g., hospice volunteers), having the television or radio at a level pleasing to the patient, being sure the patient can see out a window to sense day and night cues, encouraging touch (e.g., massage or range-of-motion exercises), and assuring

that the patient uses any needed sensory aids, such as eyeglasses or hearing aids. Conversely, the patient who is in an environment where sensory overload is a potential requires education on decreasing sensory stimuli. Acute care settings are well known for the potential for sensory overload. However, many times, the potential for sensory overload in the home is not assessed. The combination of noises from vacuums, mixers, dishwashers, televisions, radios, conversations, and patient equipment (e.g., oxygen concentrators) can be overwhelming. In the susceptible patient, it may be helpful to close room doors, to run dishwashers or other equipment at different times of the day, to turn off or turn down televisions and radios when conversing, or to unplug the telephone at certain times of the day. Being in a strange or threatening environment can contribute to delirium. Should a patient need to be admitted to an acute care or extended care setting, it is important to make that environment as familiar as possible. Encourage the patient and family to bring in familiar photographs or objects, establish a plan for familiar persons to visit regularly, teach family to greet their loved one at eye level, and encourage the use of touch, since this is very reassuring to the patient. Early Identification of the Symptoms of Delirium. The prodromal symptoms of delirium may be easily overlooked. It is not uncommon for persons with advanced diseases to feel restless, anxious, depressed, irritable, angry, or emotionally labile. These symptoms may go unnoticed, only to be recalled later in family interviews.108 Therefore, it is important to teach the patient and family to report any new feelings of uneasiness, anxiety, restlessness, or mood changes. Lessening the Severity of the Symptoms of Delirium. The individual experiencing delirium may be very frightened about what is happening. Clinicians need to provide reassurance that delirium is usually temporary, and that the symptoms are part of a medical condition.108 This intervention may significantly decrease fear and anxiety. The purpose of all supportive measures needs to be explained to both the patient and the family. The family should be informed regarding the fluctuating nature of delirium, to prepare them for the changes in behavior and to prevent them from misinterpreting these frequent changes. Reorienting the patient to time, place, and persons in the environment may assist him or her to stay oriented. Repetition is important to compensate for memory impairment.43 Thus, the family should be taught to correct the patient’s orientation errors gently and regularly. If, however, correcting orientation errors leads to increased distress in the patient, this strategy should be discontinued. The delirious patient is at risk for misinterpreting the environment. The family should be encouraged to evaluate the patient’s environment for over- or undersensory stimulation. Interventions to correct the potential for sensory deprivation or overload, as mentioned above, may be appropriate.

Delirium, Confusion, Agitation, and Restlessness Behaviors associated with delirium can be distressing for family caregivers to observe, and may lead to fears that their loved one has “gone crazy.”43,108 The family needs to hear that delirium is the result of a biological disorder and that the symptoms are generally temporary. The family should also be included in discussions of current, predicted, or resolving delirium in the patient. Teaching Following an Episode of Delirium. Follow-up teaching will include a discussion with the patient about the apparent cause of delirium, so that both the patient and family are aware of risk factors. The individual may or may not recall events that occurred during delirious episodes. Some individuals have frightening recollections of the delirious episode. Thus, it is important to assess the presence of any distressing memories. Extra psychotherapeutic support to work through the experience may be appropriate.108

9= C a s e S t u dy— Pa rt 2 Mr. H (continued) The nurse recognized the patient’s behavior as fitting the DSM–IV criteria for delirium: disturbed level of consciousness (somnolence to agitation), change in cognition (confusion and hallucinations), fluctuating nature of the symptoms, and multiple potential medical causes of delirium. Using the Nursing Delirium Screening Scale, Mr. H’s score was evaluated as 9 out of maximum of 10. Mr. H had many predisposing factors for delirium—age over 65, dementia, history of falls, cardiac disease, and fracture— putting him at high risk for delirium. On admission, Mr. H had dehydration and infection as precipitating factors that contributed to the delirium initially seen. Those two factors had been addressed. However, Mr. H still had other risk factors for delirium, including pain (no morphine was given in the past 24 hours), use of urinary catheter, use of restraints, change of environment, sensory overload, and sleep deprivation. Mr. H also received several doses of lorazepam, which can worsen confusion and is not helpful for delirium. And, the nurse noted that Mr. H had not had a bowel movement since admission. While waiting for a return call from the physician to discuss the concerns about delirium, the nurse initiated a plan to address as many of the factors contributing to delirium as possible. Pain was addressed using the prescribed opioid, monitoring for pain behaviors, and using appropriate turning techniques and supportive devices. The urinary catheter was removed and the patient offered a urinal regularly while monitoring for incontinence. The vest restraint was removed while the family was in the room monitoring the patient, but the mitt continued to preserve the intravenous site. The family was encouraged to talk to the patient about familiar topics to orient him gently to place, time, and the reason for admission to the hospital. A sitter was requested for the night shift, so that the patient could be monitored closely without disturbing

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his sleep by keeping the door open and staff going in and out of the room frequently. Care activities such as vital signs, turning, and bathing were grouped together to minimize disruptions. And, the lorazepam was held. Haloperidol 1 mg intravenous every 8 hours plus 1 mg every 2 hours as needed, and a bowel protocol that included a softener and laxative, were ordered by the physician. Over the course of the next 24 hours, Mr. H received a total of 4 mg of IV haloperidol. It is now day 5 of Mr. H’s admission. The night shift reported he slept through the night when not disturbed, but was easily aroused for care activities. Mr. H was oriented to person and place on this day. His family reported that he recognized them, carried on conversations between naps, and did not appear to be having any hallucinations. Mitt restraints were no longer required. He did not ask for the urinal, but was agreeable to using it when offered. Mr. H ate only bites of meals despite encouragement. His Nu-DESC score improved to 2 out of the maximum of 10. His haloperidol was switched to 1 mg by mouth every 12 hours plus 1 mg by mouth as needed, and the intravenous morphine was changed to oxycodone 5 mg/acetaminophen 325 mg by mouth every 4 hours as needed. He was given a bisacodyl suppository with good results, and the bowel regimen continued. The following morning (day 6 of admission), Mr. H’s right foot was dusky with poor pedal pulses. Testing shows a massive deep vein thrombosis. He was again drowsy, aroused easily but drifted back to sleep when not stimulated. He was incontinent of urine and did not seem to understand instructions when offered a urinal. He recognized family, but reported the year was 1952 and that he was in a different city. The Nu-DESC score on this morning was 6 out of the maximum of 10. After review of the patient’s overall status by the palliative medicine specialist, orthopedic surgeon, cardiologist and hospitalist, there was agreement that Mr. H was at high risk for complications from surgery and from anticoagulant therapy. The family was informed of the medical concerns, the pros and cons of inferior vena cava fi lter to prevent pulmonary embolus, and the team’s recommendation to focus on comfort care. A referral was made for home care hospice. Haloperidol and oxycodone/ acetaminophen were switched to oral solutions for ease of use at home, and continued on the current regimen. Two weeks later, Mr. H died at home with the support of a hospice team. o] Mr. H initially improved significantly with the aggressive nursing and pharmaceutical interventions, illustrating that an assessment of delirium risk factors and implementation of a comprehensive plan to eliminate or minimize these risks, along with appropriate use of antipsychotics, are effective in managing delirium. This case also illustrates that one additional uncontrollable event in a high-risk patient is all it takes to worsen delirium. In this situation, the worsening of the delirium was, indeed, the harbinger of impending death.

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Laura Bourdeanu, Marjorie J. Hein, and Pamela R. Tryon

Insomnia A ruffled mind makes a restless pillow.—Charlotte Brontë

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Key Points Insomnia is a symptom characterized as inconsistent or ineffective sleep patterns which can significantly impact a person’s quality of life. There remains a lack of knowledge specifically related to assessing and managing insomnia in cancer patients. Many pharmacological and nonpharmacological therapies are available that can be helpful. All nurses in all settings can play an important role in advancing the knowledge and skills related to addressing insomnia.

Insomnia is a prevalent health complaint, with an estimated 64 million Americans suffering from insomnia on a regular basis each year.1 Insomnia is predominant among the elderly, those with chronic medical illness, and those with anxiety or depressive disorders.2–4 Unchecked, insomnia can lead to various adverse sequelae in psychiatric, neurocognitive and medical domains, as well as significant reduction in quality of life.5–8 In addition, insomnia can lead to daytime dysfunction, such as daytime sleepiness, irritability, depressive or anxious mood and accidents.9 Sleep is a “highly structured and well-organized activity following a circadian periodicity that is regulated by the interplay of internal biological processes and environmental factors.”10 According to the International Classification of Sleep Disorders and DSM–IV, insomnia is a “heterogeneous complaint that may involve difficulties falling asleep, difficulty maintaining sleep with more than 30 minutes of nocturnal awakenings, early-morning awaking with inability to resume sleep, or a complaint of nonrestorative sleep with corresponding sleep efficiency less than 85.”11,12 In patients with cancer, insomnia is reported to be a common problem. The prevalence of insomnia and associated symptoms in cancer patients, either newly diagnosed or recently treated patients, was reported to be 23–61.13,14,10 However, insomnia was present in 23–44 of patients 2–5 years after treatment.15,16,10 The causes for insomnia in patients with cancer may be related to psychological factors (anxiety or depression), pain, treatment-related toxicity, or other comorbid medical conditions. Further, insomnia was linked with increased rates of depression, decreased quality of life, and increased fatigue in other patient populations.17 Though it is a common symptom noted by cancer patients, especially those undergoing aggressive forms of treatment, research regarding insomnia in cancer patients is scarce. This chapter will apply as a model for assessment and treatment of insomnia to cancer patients; however, these principles can also be considered for patients without cancer. 469

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o] CASE STUDY Andrew, A Man with the Go-Fight-Win Spirit . . . Most of the Time Andrew, a 51-year-old executive producer of a major sports network and newly married, has metastatic gastric cancer. He was initially diagnosed in May of 2007, after experiencing worsening abdominal pain that he thought was “bad heartburn.” After being deemed surgically untreatable, Andrew is now in the midst of his fourth line of aggressive chemotherapy. As a consequence of aggressively fighting for his life with toxic therapy, Andrew’s quality of life has been compromised with chronic nausea, vomiting, neuropathies, fatigue, syncopal episodes, deep vein thrombosis, pain, and poor oral intake. As a result of his gastric cancer, Andrew has become TPN dependent, requiring his faithful wife to diligently connect him to an infusion pump for at least sixteen hours a day. Between routine physical exams, home infusions, chemotherapy, taking medication, and maintaining his routine activities of daily living, Andrew states that he is having problems with insomnia. He is able to sleep for 1–2 hours at a time in the evening, but then awakens and is unable to sleep the rest of the night. He is napping throughout the day and constantly feels fatigued. He reports that his multiple physical symptoms are well controlled with his current medications, which include Compazine, Zofran, Ativan, Scopolamine patches, Remeron, Marinol, MS Contin 30 mg twice daily, Restoril, and Ambien for insomnia. The nurse conducts a thorough assessment of this latter symptom by speaking with Andrew and his wife in order to identify the tangible causes contributing to his insomnia, including how many hours a day he naps, if any, and an assessment of the effectiveness of his medications to control his other symptoms. In addition, a thorough physical exam is performed, including a neurological evaluation. Through the assessment, the nurse discovers that Andrew currently leads a sedentary lifestyle, sitting on the couch or remaining in bed between administrations of his medications throughout the day. Although he is able, he does not feel motivated to exercise or continue working. He also admits to an emotional component, with bouts of anxiety and depression. After discussing Andrew’s care with the physician, the nurse reviews both nonpharmacological and pharmacological approaches to combat insomnia, including dietary recommendations, decreasing nap frequency, using the bed only for sleeping, and incorporating a routine exercise regimen. The nurse also outlines, with both Andrew and his wife, an ideal time interval for each medication he takes—especially Restoril and Ambien—and Andrew is motivated to follow these recommendations. The nurse also suggests a consultation with ancillary services including dietary, psychiatry, and palliative medicine, explaining that both altered emotional and physical states can snowball the effects of insomnia. After seeing the above specialists,

Andrew is now on Restoril alone, with Ritalin during the day to combat the sedative effects of his anti-emetics and pain medication. He has consolidated his intravenous infusions to a set time in the evening, tries to coordinate all his medical appointments to a day or two per week, and has incorporated a diet and exercise regimen that he is able to tolerate. Within less than one month, Andrew states that he is able to get 5–6 hours of restful sleep each evening and no longer feels that insomnia is a major complaint. o]

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Factors Related to Insomnia Insomnia is among one of the most prevalent, distressing, and under-managed symptoms experienced by patients with cancer. Insomnia is associated with adverse outcomes and should be proactively targeted for intervention.18 A. J. Spielman, in the late 1980s, created a model of insomnia in terms of predisposing, precipitating, and perpetuating factors.19 Precipitating factors of developing insomnia are likely to be genetic and neurobiologic factors, such as psychosocial, medical, or psychiatric.19 The process of sleep and wakefulness is an active and tightly regulated process, and differs among individuals who have different susceptibilities to exogenous influence.19 Often, sleep disturbances are associated with situational stresses such as illness, aging, and drug treatments.10 However, in patients with cancer, the physical illness, pain, hospitalization, and cancer treatment drugs, along with the psychological impact of the disease, may disrupt sleeping patterns of the individual. A history of poor sleep patterns will adversely affect the individual’s daytime mood and performance. Among the general population, an individual with complaints of persistent insomnia has been associated with an increased risk of developing anxiety or depression. Complaints of sleep disturbances and a pattern of sleep–wake cycle reversals may be an early sign of a developing delirium.20 Paraneoplastic syndromes may exacerbate sleep disturbances if they are associated with increased steroid production, and if the patient has symptoms associated with tumor invasion such as draining lesions, gastrointestinal and genitourinary changes, pain, fever, cough, dyspnea, pruritus, and fatigue. Moreover, medications used by patients to control symptoms of the disease, or side effects of treatment, may cause insomnia. For example, medications such as vitamins, corticosteroids, neuroleptics for nausea and vomiting, and sympathomimetics to relieve dyspnea may negatively impact sleep patterns.20 Frequently, hospitalized patients are likely to have their sleep interrupted by treatment schedules, routine hospital procedures, and other patients sharing the room. All of these factors may either singularly or collectively alter the sleep–wake cycle. Other considerations influencing the sleep–wake cycles of patients with cancer include age, comfort, pain, and anxiety; and environmental noise, and temperature.21

Insomnia There are four major categories of sleep disorders according to the Sleep Disorders Classification Committee of the American Academy of Sleep Medicine: 1. Disorders of initiating and maintaining sleep (insomnias). 2. Disorders of the sleep–wake cycle. 3. Dysfunctions associated with sleep, sleep stages, or partial arousals (parasomnias). 4. Disorders of excessive somnolence.22 According to the DSM-IV-TR (Diagnostic and Statistical Manual of Mental Disorders: Fourth edition text revision), sleep disorders are organized into four major categories according to the etiology of the sleep disorder11: 1. Primary sleep disorders consist of all other etiologies other than the ones listed below. Primary sleep disorders are assumed to develop from endogenous abnormalities in sleep–wake patterns, accompanied by conditioning factors. a. Dyssomnias are abnormalities in the amount, quality, or timing of sleep. b. Parasomnias are abnormal behavioral or physiological events. 2. Sleep disorder related to another mental disorder resulting from a diagnosable mental disorder, usually mood or anxiety disorder, but severe enough to receive clinical attention. 3. Sleep disorder due to a general medical condition resulting from the effects of a physiological medical condition. 4. Substance-induced sleep disorder resulting from concurrent use or a recent discontinuation of a drug.11 Insomnia may also be caused by medications commonly used in the treatment of cancer. The sustained use of central nervous system (CNS) stimulants such as,amphetamines, caffeine, and diet pills (including some dietary supplements that promote weight loss and appetite suppression); sedatives and hypnotics (e.g., glutethimide, benzodiazepines, pentobarbital, chloral hydrate, secobarbital sodium, and amobarbital sodium); cancer chemotherapeutic agents (especially antimetabolites); anticonvulsants (e.g., phenytoin); adrenocorticotropin; oral contraceptives; monoamine oxidase inhibitors; methyldopa; propranolol; atenolol; alcohol; and thyroid preparations can cause insomnia.22 In addition, withdrawal from CNS depressants (e.g., barbiturates, opioids, glutethimide, chloral hydrate, methaqualone, ethchlorvynol, alcohol, and over-the-counter and prescription antihistamine sedatives), benzodiazepines, major tranquilizers, tricyclic and monamine oxidase inhibitor antidepressants, and illicit drugs (e.g., marijuana, cocaine, phencyclidine) can cause insomnia.20 Hypnotics that are commonly prescribed to patients with cancer can interfere with rapid eye movement (REM) sleep, resulting in irritability, apathy, and decreased mental alertness. An abrupt withdrawal of hypnotics and sedatives may cause nervousness, jitteriness, seizures, and REM rebound.

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REM rebound is a “marked increase in REM sleep with increased frequency and intensity of dreaming, including nightmares.”23 The increased physiologic arousal that occurs during REM rebound may be dangerous for patients with peptic ulcers or a history of cardiovascular problems.

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Pathophysiology Normal sleep consists of two phases: rapid eye movement (REM) sleep and non-rapid eye movement (NREM) sleep.24 The brain is active during REM sleep or dream sleep. NREM sleep is the quiet or restful phase of sleep. NREMs divided into four stages of progressively deepening sleep based on electroencephalogram findings. Sleep occurs in stages of a repeated pattern, or cycle, of NREM followed by REM, in which each cycle lasts approximately 90 minutes. The cycle is repeated four to six times during a 7- to 8-hour sleep period.25 A biological clock, or circadian rhythm, dictates the sleepwake cycle. A disruption in an individual’s sleep pattern may disturb the circadian rhythm and impair the sleep cycle.26 Exogenous influences such as caffeine, light, and stress have been indicated in recent studies to be influenced by genetic factors. An example in one study found that differences in the adenosine 2A receptor gene (ADORA2) determine the differential sensitivity to caffeine’s effect on sleep. The ADORA2A c. 1083T>C genotype determines how closely the caffeineinduced changes in brain electrical activity (increased beta activity) during sleep resemble the alterations observed in patients with insomnia.19 A patient with a history of chronic insomnia may have a mutation in the gene (GABAa beta3) that is believed to affect an individual’s ability to handle stress or make them more susceptible to depression.20 Patients with chronic insomnia (in clinical trials) were noted to have increased brain arousal. Demonstrations of fastfrequency activity during NREM sleep, an EEG sign of hyperarousal, and evidence of reduced deactivation in key sleep/ wake regions during NREM sleep, were noted in patients with chronic primary insomnia. Also, patients with insomnia were noted to have higher day and night body temperatures, urinary cortisol, adrenaline secretion, and adrenocorticotropic hormone ACTH, than patients with normal sleep. Evidence demonstrated that sleep deprivation was not a factor in the differences found between individuals with insomnia and normal sleepers. Studies have indicated that only a small percentage of patients with medical and psychiatric conditions develop insomnia, which suggests that some patients have an inherent susceptibility (whether psychosocial, medical, or psychiatric) to develop insomnia in the context of a stressful event.20

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Perpetuating Factors Cognitive and behavioral mechanisms perpetuate insomnia, regardless of how insomnia is triggered. Patients have

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misconceptions about what are normal sleep requirements, and then develop excessive worry about not having adequate sleep. This often causes the patient to become obsessive about sleep. The patient develops a dysfunctional belief, often worsening the disruptive sleep behavior—for example taking daytime naps or “sleeping in late”—which in turn reduces the natural homeostatic drive to sleep at a normal bedtime.20 Patients develop a conditioned arousal to stimuli that would normally be associated with sleep (i.e., heightened anxiety and ruminations about going to sleep once they are in the bedroom). The patient then develops a cycle in which the more they strive to sleep, the more agitated they become, and the less they are able to fall asleep. Also, the patient may have ruminative thoughts or clock-watching behavior as they try to fall asleep in the bedroom. Therefore, conditioned environmental stimuli cause insomnia to develop from the continued association of sleeplessness with situations and behaviors that are typically related to sleep.20

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Treatment Insomnia in cancer patients may be due to a variety of disease-related factors, cancer treatment, or psychological factors. The initial strategy to treat insomnia in cancer patients is to address the underlying physical and psychological factors contributing to the sleep disturbance. If the precipitating factors are not fully manageable, then pharmacological or behavioral interventions, or both, should be used to treat both acute and chronic insomnia. Pharmacological interventions are more commonly used in cancer patients who seek help for their insomnia; however, long-term pharmacotherapy is not desirable.27–29 Hence, the treatment for insomnia in cancer patients must be multimodal and should include both pharmacologic and nonpharmacologic interventions.

Pharmacologic Interventions Pharmacologic interventions, particularly hypnotics, have historically played a prominent role in the management of insomnia in cancer patients, despite the lack of controlled trials. Pharmacological agents approved by the U.S. Food and Drug Administration for the treatment of insomnia include: benzodiazepine gamma-aminobutyric acid (GABA A) agonists, nonbenzodiazepine GABA A agonists, and melatoninreceptor agonists (Table 22–1).30 Benzodiazepine Receptor Agonists. Benzodiazepines are still frequently used in the management of insomnia because of their undisputed efficacy and relative safety compared to other agents such as barbiturates. Benzodiazepines facilitate the GABA-mediated inhibition of cell firing by occupying the subunits of the GABA receptor complex present throughout the brain, including the ventral lateral preoptic

Table 22–1 Pharmacologic Agents Approved by FDA Benzodiazepine receptor agonists

Nonbenzodiazepines receptor agonists Melatonin receptor agonists

Clonazepam Lorazepam Oxazepam Estazolam Flurazepam Temazepam Triazolam Quazepam Zaleplon Zolpidem Zopiclone Ramelteon

area that controls sleep. The sleep architecture is altered by suppressing sleep stages 3 and 4, and prolonging stages 1 and 2 of sleep, thereby increasing total sleep time.31 Although benzodiazepines are effective agents, they have several unwanted side effects, such as daytime drowsiness, dizziness or lightheadedness, cognitive impairments, motor incoordination, tolerance, dependence, rebound insomnia, and daytime anxiety.10 Nonbenzodiazepine Receptor Agonists. Nonbenzodiazepines are the most widely used medications because they can induce sleep with fewer side effects than benzodiazepines. Nonbenzodiazepines inhibit neuronal firing by binding selectively to the alpha-1 subunit of the omega-1 receptor of the GABA receptor complex.32 Although both nonbenzodiazepines and benzodiazepines exert their effect on the GABA receptor complex, nonbenzodiazepines do not disturb the architecture of sleep.10 Nonbenzodiazepines have fewer residual side effects, including a lower risk for abuse and dependence, less psychomotor impairment, amnesia, and daytime somnolence.33 Melatonin-Receptor Agonists. Melatonin-receptor agonists are an emerging class of drugs that can be used to treat insomnia. Melatonin-receptor agonists bind to the MT1 and MT2 receptors in the suprachiasmatic nucleus. These receptors are thought to be involved in the maintenance of the circadian rhythm underlying the normal sleep–wake cycle.34 Melatoninreceptor agonists have the advantage of having minimal side effects and no potential for abuse or dependence.35 Presently, the only melatonin-receptor agonist approved for the treatment of insomnia by the FDA is ramelteon (Rozerem). Others. Other classes of drugs have been used to treat insomnia in cancer patients, including antidepressants, antihistamines, atypical antipsychotic agents, and neurolepicts. Antidepressants are increasingly used for the management of insomnia.36 Specifically, tricyclic antidepressants such as

Insomnia amitripyline or doxepin, trazadone, and mirtazapine, may provide sedation in patients who are not depressed, as well as those who are depressed. Antihistamines such as diphenhydramine and hydroxyzine are used for their sedative properties as well as for their anticholinergic properties to treat insomnia and help relieve nausea and vomiting. Atypical antipsychotics such as danzapine have been used for their sedating effects and their ability to improve appetite and relieve opioidinduced nausea. Neuroleptics, such as thioridazine, have been found to promote sleep, especially in patients with insomnia associated with organic mental syndrome and delirium.37

Nonpharmacologic Intervention Several nonpharmacologic interventions have been used for the treatment of insomnia in healthy patients, but more intervention studies are needed to address insomnia in patients with cancer. Currently there are four categories of nonpharmacologic interventions for insomnia: cognitive–behavioral therapies (CBT), complementary therapies (CT), psychoeducation and information, and exercise. Cognitive–Behavioral Therapies. Cognitive–behavioral therapies involve a variety of behavioral and psychological treatments aimed at changing negative thought processes, attitudes, and behaviors related to a person’s ability to fall asleep, stay asleep, get enough sleep, and function during the day. Cognitive–behavioral therapies that have been tested in patients with cancer include stimulus control, sleep restriction, relaxation therapy, sleep hygiene, profile-tailored CBT, and cognitive restructuring strategies. These therapies have been shown to produce significant improvement sleep quality, longer duration, higher sleep efficiency.38–42 Complimentary Therapies. Complimentary therapies are interventions that are not considered to be part of conventional medicine. In patients with cancer, several complimentary therapies have been tested: aromatherapy, expressive therapy, expressive writing, healing, autogenic training, massage, muscle relaxation, mindfulness-based stress reduction, and yoga. These therapies have resulted in improvement in Table 22–2 Potential Consequences of Insomnia in the Context of Cancer Psychologic and behavioral consequences Fatigue Cognitive impairments (e.g., memory, concentration) Mood disturbances and psychiatric disorders Psychological and health consequences Health problems and physical symptoms (e.g., pain) Longevity Immunosuppression Source: Data from Savard & Morin (2001), reference 10.

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sleep quality, duration and efficiency, use of fewer medications, and less daytime dysfunction.43–55 Psychoeducation. Psychoeducation includes the use of structured education provided to patients with specific information regarding treatments and side effects. Two studies evaluated the effect of psychoeducation on the severity of the side effects from radiation and chemotherapy.55,56 Kim and colleagues (2002) found that educational information tapes increased sleep duration in men receiving radiation for localized prostate cancer. Williams and Schreier56 found no change in sleep disturbances after using informational audiotapes in women with breast cancer undergoing chemotherapy. The results suggest that patients who receive more detailed, userfriendly information about their treatment may benefit from this form of assistance for their insomnia. Further studies are necessary to explore the benefit of psychoeducation in insomnia in patients with cancer and other diseases. Exercise Interventions. Exercise interventions involve any planned, structured, and repetitive bodily movement that is performed for the purpose of conditioning any part of the body, improving health, or maintaining fitness. Several studies evaluated the efficacy of exercise intervention for the treatment of insomnia in patients with cancer and they reported less difficulty sleeping and improved sleep patterns and quality.57–59 Sleep Hygiene. Sleep hygiene involves changing current health practices and environmental factors to new behaviors that will promote improved quantity and quality of sleep.17 Included in the sleep hygiene interventions are curtailing time in bed, eliminating the bedroom clock, exercising in the late afternoon or early evening, avoiding alcohol, caffeine and nicotine, regularizing the bedtime, eating a light bedtime snack, exploring napping, avoiding use of sleeping pills, limiting liquids before bed, taking hot baths, leaving the bed if awake, eliminating noise from the bedroom, and regulating the temperature in the bedroom.10,60,61 Sleep hygiene is a promising behavioral approach to aid sleep in patients with cancer and other diseases.

Nursing Interventions One of the key components of oncology nurses’ and palliative care nurses’ scope of practice is symptom management. These nurses are often the first-line providers and thus are responsible for understanding the consequences of insomnia on quality of life, and for recognizing the relationships between patient insomnia and disease-related treatments (Table 22–2). Nurses are often in a position to influence decisions regarding interventions to promote optimal sleep, both pharmacologic and nonpharmacologic. Educational programs for nurses that offer information about insomnia and interventions are therefore important and should be introduced at the graduate and undergraduate level.62

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Conclusion Insomnia remains a common and distressing complaint in patients with cancer, in cancer survivors, and in those with chronic debilitating diseases. Insomnia has been linked to psychological and/or physiological malfunction. The importance of healthy sleep in patients who are chronically ill cannot be overestimated. Effective management of insomnia begins with a thorough assessment that will include the exploration of predisposing factors such as insomnia prior to diagnosis, usual sleep patterns, emotional status, exercise and activity level, and other diseaserelated symptoms and medications. Tools such as The Clinical Sleep Assessment for Adults and Children may be used to screen for insomnia.63 Typically, insomnia is treated with hypnotic drugs; however, more recent findings support the use of cognitive–behavioral therapies, complementary therapies, psychoeducation and information, and exercise to treat insomnia. The challenge for palliative care nurses is to adequately provide patients with education regarding healthy sleep patterns. Nurses need to acquire a better understanding of the multidimensionality of sleep and to be aware that patients may not relate their symptoms to sleep issues. Unfortunately, insomnia in patients with cancer and other debilitating chronic diseases has only recently received attention from cancer researchers. Studies aimed to determine the etiology of insomnia in this population, and the appropriate treatment, is much needed.

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Marianne Matzo

Sexuality I am a single woman but have been in a serious relationship for the past two years. My boyfriend has been very understanding and supportive during my diagnosis and treatment for Hodgkin’s disease. Sex is a very important part of our relationship. We have lived together for the past year. I was admitted to the hospital several days ago. The nurses, doctors, and others come and go all day long. I wanted a private room but really couldn’t afford the extra expense. One night, just before visiting hours were over, we decided to try to have a ‘quickie.’ We thought my roommate was asleep and tried to be very quiet. We pulled the curtains around the bed and turned off the lights. All of a sudden, the light went on and the curtain was pulled back. Come to find out my roommate heard the noise I was making and thought I was having difficulty breathing. She had put on her call light for the nurse. We were so embarrassed. My boyfriend left quickly and I’m afraid I won’t see him again. I think this is just too much for a 28-year-old guy.—A 26-year-old woman with Hodgkin’s disease

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Key Points Sexuality is an integral part of the human experience. Health care providers often overlook the sexual needs of those receiving palliative care. Communication, privacy, and practical solutions to physical changes may have a positive impact on sexual health for the palliative care patient.

Terminal illness and end-of-life care can interfere with sexual health and physical sexual functioning in many ways. These include: physiological changes; tissue damage; other organic manifestations of the disease; attempts to palliate the symptoms of advancing disease, such as fatigue, pain, nausea and vomiting; and psychological sequelae such as anxiety, depression, and body-image changes. The complexities of human sexuality are broad, especially for people coping with life-threatening illness and those who are facing the end of their lives. The Sexual Health Model1 (Figure 23–1) reflects these complexities by identifying ten broad components posited to be essential domains of healthy human sexuality: talking about sex; culture and sexual identity; sexual anatomy and functioning; sexual health care and safer sex; overcoming challenges to sexual health; body image; masturbation/fantasy; positive sexuality, intimacy and relationships; and spirituality and values.1 A patient’s experiences, symptoms and concerns throughout the course of his or her illness are dynamic and complex, and are represented in the model as potentially impacting sexual health and, ultimately, quality of life. Th is chapter is organized according to each component of the Sexual Health Model.1

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Talking About Sex A cornerstone of the Sexual Health Model is the ability to talk comfortably and explicitly about sexuality, especially one’s own sexual values, preferences, attractions, history, and behaviors.1 This communication is necessary for one to effectively express needs to a partner, and to discuss with a health care provider the alterations in sexual health that have 477

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resulted from illness. This is a valuable skill that must be learned and practiced. An Institute of Medicine2 report that addresses cancer care for the whole patient states that, in order to ensure appropriate psychosocial health, health care practitioners should facilitate effective communication. One study of an oncology population documented that 28 of the patients indicated their physicians do not pay attention to anything other than their medical needs.3 Psychologic distress that patients or their partners experiences during diagnosis and treatment of malignancy can impair a healthy sexual response cycle.4

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Culture and Sexual Identity Culture influences one’s sexuality and sense of sexual self. It is important that individuals examine the impact of their particular cultural heritage on their sexual identities, attitudes, behaviors, and health.1 The cultural meaning of sexual behaviors needs to be taken into account, because that meaning may impact a person’s willingness or interest in maintaining sexual intimacy while receiving palliative care. The patient and family are at the center of palliative care. A patient’s desire or interest in maintaining physical sexual relations is highly variable. Some may find expression of physical love an important aspect of their life right up to death, while others may relinquish their “sexual being” early in the

end-of-life trajectory. Each individual’s identity is influenced, in part, by his or her sexual identity. Roles between spouses or sexual partners are additionally defined by the sexual intimacy between them. Sexual integrity can be both altered and compromised during the course of an incurable disease, deleteriously affecting both the identity and the role fulfi llment of the affected person. Health care providers should not make assumptions about the level of interest or capacity a couple has for physical intimacy. Sexuality goes far beyond “sexual intercourse.” Sexuality may encompass physical touch of any kind, as well as experiences of warmth, tenderness, and the expression of love. The importance of physical intimacy vacillates throughout a relationship, and may be diminished or rekindled by a superimposed illness. Long-term palliative care providers may see sexual desire and expression ebb and flow between couples throughout the course of care. The patient may view sexual expression as an affirmation of life, a part of being human, a means to maintain role relationships, or the expression of passion in and for life itself. Part IX of this book includes an international perspective on palliative care. There exists tremendous diversity of cultural, religious, and spiritual beliefs in relation to sexual intimacy and death. Culture often guides interactions between people, and even the mores within sexual interactions. Culturally competent health care providers should take into consideration the effect of culture on sexual expression. For example, do both members of the couple possess the same cultural identity? If not, are their identities similar in respect to beliefs about intimacy? What are the couple’s health, illness, and sexual beliefs and practices? What are their customs and beliefs about intimacy, illness, and death? Issues such as personal space, eye contact, touch, and permissible topics to discuss with health care providers and/or members of the opposite sex may influence one’s ability to intercede within the realm of intimate relations. A cultural assessment is vital to determining whether these factors are an issue. Variations in sexual orientation must also be considered within the area of cultural competence. The beliefs, actions, and normative actions of homosexual and bisexual couples are important considerations when providing palliative care to a couple with alternate sexual expression.5–7 Gay and lesbian couples may be offended by the assumption that they are heterosexual.8 An example demonstrating the need for acknowledging and respecting individual sexuality follows.

9= CASE STUDY A 67-Year-Old Man with Prostate Cancer A 67-year-old man dying of prostate cancer once stated, “I am gay but I was married years ago and have three grown children. I have maintained a close supportive relationship with my ex-wife and children. However, for the past 17 years

Sexuality I’ve been in a homosexual relationship with Todd. We are very close emotionally, spiritually, and physically. We have been very forthright about our sexual orientation with our families and friends, but it is difficult when I’m admitted to the hospital. Both my ex-wife and my partner visit me regularly. The staff acknowledges my ex-wife, but seem to think Todd is my business partner because I first introduced him as ‘my partner.’ From the onset, this was an embarrassing assumption on their part, and one I felt awkward in correcting. I have Todd accompany me more often than my ex-wife, but they see him as a friend who gives me rides. I know I should just come right out and explain the nature of my relationship; the problem is, I see so many different providers. I feel like I would have to keep going over this again and again. I don’t want to be put in this position repeatedly. Todd is very frustrated by this misunderstanding, and I hate to see him upset. It is difficult enough to be going through the terminal cancer experience without adding another layer of embarrassment and confusion.” o]

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Sexual Anatomy and Functioning Sexual health assumes a basic knowledge, understanding, and acceptance of one’s sexual anatomy, sexual response, and sexual functioning, as well as freedom from sexual dysfunction and other sexual problems.1 Physical sexual expression is a basic aspect of human life, seen by many as fundamental to “being human.” It is a complex phenomenon that basically comprises the greatest intimacy between two humans. The ability to give and to receive physical love is very important for many individuals, throughout the trajectory of an incurable illness.9,10 The ability to maintain close sexual relations can be viewed as maintaining an essential part of one’s “self.” Sexuality can affirm love, relieve stress and anxiety, and distract one from the emotional and physical sequelae of an eventually terminal chronic illness. Sexual expression can foster hope and accentuate spirituality. Health care providers in all clinical settings where palliative care is provided can be pivotal in facilitating the expression of sexuality in the terminal stages of life. Holistic palliative care throughout the trajectory of an incurable illness should include the promotion of sexual expression and assistance in preventing or minimizing the negative effects of disease progression on a couple’s intimacy. Sexual partners’ caring can comfortably include sexual expression if both parties are interested and able.

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Sexual Health Care and Safer Sex As a component of the Sexual Health Model, physical health includes, but is not limited to, practicing safer sex behaviors,

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knowing one’s body, obtaining regular exams, and responding to physical changes with appropriate medical interventions.1 The promotion or restoration of sexual health begins with a sexual assessment. Interventions to address alterations in sexual health cannot be adequately planned without thorough assessment. Assessment should include the patient as well as his or her partner. Securing permission to include the sexual partner is necessary. For the nurse to perform this assessment, she or he must be comfortable with the topic of sexuality. Comfort with one’s own sexuality conveys comfort to others. Additionally, the nurse’s values, beliefs, and attitudes regarding sexuality greatly influence the capacity to discuss these issues in a nonjudgmental way.11 Perceived insufficient knowledge on the part of the health care provider is often an obstacle to frank sexual discussions. Additional sexual education and consistent assessment and counseling approaches will allay this discomfort. Education can be gained informally via discussions with colleagues and through consultation with experts in the area of human sexuality. Formal training is gained through in-service education offerings, workshops, and sexual-attitude reassessment programs. Knowledge can also be fostered by keeping abreast of new developments within the field by attending conferences, and reviewing journals and professional information via the Internet.12 Assessment of sexuality begins with a sexual history, and is then supplemented by data regarding the patient and partner’s physical health as it influences intimacy, psychological sequelae of the chronic illness, sociocultural influences, and possible environmental issues.13 Sexual health varies from person to person, so it is essential to determine if the couple is satisfied with their current level of sexual functioning.14 Celibacy, for example, may have been present in the relationship for years. However, the trajectory of palliative care may have forced celibacy on an otherwise sexually active couple.15 Determining the couple’s need for interventions and assistance in this area is vital to determining appropriate interventions. The health care provider has many interventions available to prevent or minimize the untoward effects that palliative care may impose on sexual health.13 Obtaining a sexual history and performing a subsequent sexual assessment can be augmented using several communication techniques—assuring privacy and confidentiality; allowing for ample, uninterrupted time; and maintaining a nonjudgmental attitude. Addressing the topic of sexuality early in the relationship with a palliative care patient legitimizes the issue of intimacy.16 It delivers the message that this is an appropriate topic for concern within the professional relationship, and is often met with relief on the part of the patient and couple. Often, sexuality concerns are present but unvoiced.4 Incorporating several techniques of therapeutic communication enhances the interview. These techniques include asking open-ended questions (“Some people who have an incurable illness are frustrated by their lack of private time

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with their spouse/sexual partner. How is this experience for you?”); using questions that refer to frequency as opposed to occurrence (“How often do you have intimate relations with your wife/husband/partner?” as opposed to “Do you have intimate relations with your wife/husband/partner?”); and “unloading” the question (“Some couples enjoy oral sex on a regular basis, while others seldom or never have oral sex. How often do you engage in oral sex?”). This last technique legitimizes the activity and allows the patient to feel safe in responding to the question in a variety of ways.13 Gender and age may also play a part in the patient’s comfort with sexual discussions. An adolescent boy may feel more comfortable discussing sexual concerns with a male health care provider, whereas an elder woman may prefer to discuss sexual issues with a woman closer to her own age. Assessment of these factors may include statements like the following: “Many young men have questions about sexuality and the effect their illness may have on sexual functioning. This is something we can discuss or, if you’d be more comfortable, I could have one of the male nurses talk to you about this. Which would you prefer?”13 If the sexual history reveals a specific sexual problem, a more in-depth assessment is warranted. This would include the onset and course of the problem, the patient’s or couple’s thoughts about what caused the problem, any solutions that have been attempted, and potential solutions and their acceptability to the patient/couple. For example, use of a vibrator in the case of male impotence may be entirely acceptable to some couples but abhorrent to others. Determining what is and is not acceptable regarding potential solutions is part of the logical next step in sexual assessment. Finally, documentation in the patient’s chart should reflect the findings of the sexual assessment. Many institutions have a section for sexual assessment embedded within their intake form. This can be completed, and more thorough notes added to the narrative section on the chart. Findings, suggestions for remediation, and desired outcomes should be documented. This will prevent duplication of efforts, enhance communication within the health care team, and support continuity of care within the realm of sexual health.

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Challenges: Overcoming Barriers to Sexual Health Challenges to sexual health include previous sexual history, developmental issues, privacy, and physical symptoms or side effects of symptom management.7 Previous sexual history such as sexual abuse, substance abuse, compulsive sexual behavior, sex work, harassment, and discrimination are critical in any discussion of sexual health. This is particularly true in the context of interventions for cultural and sexual minorities, many of whom are disproportionately affected by these issues.1 It is not uncommon to see our patients only as they present to us, without full appreciation of their previous life histories.

Developmental Issues There are a number of developmental issues that may play a part in the patient’s ability to maintain intimacy during palliative care.17 Often, health care providers assume sexual abstinence in the elderly and, to some degree, in adolescents and unmarried young adults.18 However, intimacy may be a vital part of these individuals’ lives.19 Chronological age may or may not be a determination of sexual activity.20 For underage patients, parental influence may interfere with the ability to express physical love. Likewise, older adults may be inhibited by perceived societal values and judgments about their sexuality.19–25 Maintaining an open, nonjudgmental approach to patients of all ages, sexual orientations, and marital status when assessing sexual health may foster trust and facilitate communication.

Privacy One of the main external challenges to maintaining intimate relations during palliative care is the lack of privacy. In Part VI of this book, the various settings in which end-oflife care may take place, and the concomitant issues raised within each setting, are addressed. In the acute care setting, privacy is often difficult to achieve. However, this obstacle can be removed or minimized by recognizing the need for intimacy and making arrangements to ensure quiet, uninterrupted time for couples. Private rooms are, of course, ideal. However, if this is not possible, arranging for roommates and visitors to leave for periods of time is necessary. A sign could be posted on the door that alerts health care providers, staff, and visitors that privacy is required. Finally, many rooms in the acute care setting have windows as opposed to walls, requiring the use of blinds and/or curtains to assure privacy. The nurse should offer such strategies rather than expecting patients to request privacy. Similar issues may arise in the long-term care environment.23 If privacy is a scarce commodity, assisting couples to maintain desired intimate relations is crucial in providing holistic care. Nurses in long-term care settings can initiate strategies to offer privacy. Such privacy may be more important than in acute care settings because the stay in long-term care is usually quite extended.26 In both the acute care and long-term care settings, nurses can play a vital role in setting policy to facilitate the expression of intimacy and the maintenance of sexual health. Home care may present an array of different obstacles for maintaining intimate relations, such as the ongoing presence of a health care provider other than the sexual partner. The home setting is often interrupted by professional visits as well as visits from family, friends, and clergy, which may be unplanned or unannounced. The telephone itself may be an unwelcome interruption. Often, when receiving home hospice care, the patient may have been moved from a more private bedroom setting to a more convenient central location, such as a den or family room, to aid caregiving and to enable the patient to maintain

Sexuality an integral role in family life. However, this move does not provide the privacy usually sought for intimate activity. There may not be a door to close; proximity of the patient’s bed to the main rooms of the house may inhibit a couple’s intimate activities, and they may need to schedule private time together. Necessary steps to maintain sexual relations include scheduling “rest periods” when one will not be disturbed; turning the ringer of the phone off; asking health care providers, friends, and clergy to call before visiting; and having family members respect periods of uninterrupted time.

9= CASE STUDY Privacy Issues at the End of Life My husband and I have been married for over 50 years. When I was diagnosed with ovarian cancer 9 months ago, it was devastating for both of us. The nights I spent in the hospital after my exploratory surgery were some of the roughest times in my life. Before then, I could count on one hand how many nights since our marriage we had not spent together in the same bed. Now it seems that number is growing exponentially. I wish we could have some time alone together. Now that the doctors have said the chemotherapy isn’t working, there seems to be a steady stream of people through our house, both night and day. Our three grown children live in the area and often drop by to see us. Along with them come their spouses and grandchildren. Hospice has started paying daily visits, and friends and neighbors come by often. I long for just a little privacy with my husband. Just to hold each other, maybe snuggle and kiss or even just fall asleep in each other’s arms would mean the world to me.—A patient with end-stage ovarian cancer o]

Fatigue Fatigue may be secondary to many factors. In Chapter 8, the etiology and management of fatigue were thoroughly addressed. Fatigue may render a patient unable to perform sexually. If fatigue is identified as a factor in the patient’s ability to initiate or maintain sexual arousal, several strategies may be suggested to diminish these untoward effects.27 Minimizing exertion during intimate relations may be necessary. Providing time for rest before and after sexual relations is often a sufficient strategy to overcome the detrimental effects of fatigue. Likewise, avoiding the stress of a heavy meal, alcohol consumption, or extremes in temperature may be helpful. Experimenting with positions that require minimal patient exertion (male-patient, female astride; female-patient, male astride) is often helpful. Finally, timing should be taken into consideration. Sexual activity in the morning upon awakening may be preferable over relations at the end of a long day. Planning for intimate time may replace spontaneity, but this can be a beneficial tradeoff.

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Pain Sexual health can be impaired by the presence of pain, as well as the use of pain medication (especially opiates) which can interfere with sexual arousal.28 In Chapters 6 and 7, the issues of pain assessment and management are comprehensively discussed. The goal of pain therapy is to alleviate or minimize discomfort; however, attaining that goal may result in an alteration in sexual responsiveness (i.e., libido or erectile function). Temporarily adjusting pain medications, or experimenting with complementary methods of pain management, should be explored. For example, using relaxation techniques and/or romantic music may decrease discomfort through distraction and relaxation, while enhancing sexual interest. Physical sexual activity itself can be viewed as a form of distraction and subsequent relaxation. The couple should be encouraged to explore positions that offer the most comfort. Traditional positions may be abandoned for more comfortable ones, such as sitting in a chair or taking a side-lying position. Pillows can be used to support painful limbs or to maintain certain positions. A warm bath or shower before sexual activity may help pain relief and be seen as preparatory to intimate relations. Massage can be used as both an arousal technique and a therapeutic strategy for minimizing discomfort. Finally, suggesting the exploration of alternate ways of expressing tenderness and sexual gratification may be necessary if the couple’s traditional intimacy repertoire is not feasible due to discomfort.

Nausea and Vomiting Nausea and vomiting are common during the palliative care trajectory and negatively impact sexual health. Chapter 10 discusses the etiology and treatment of these symptoms. There are many medications that suppress nausea; however, they may interfere with sexual functioning due to their sedative effects. If the patient complains of sexual difficulties secondary to treatment for nausea and vomiting, assess which antiemetics are prescribed and try another medication and/or use alternate nonpharmacological methods to control nausea and vomiting. As with fatigue, timing may be an important consideration for intimate relations. If the patient/ couple notes that nausea is more prevalent during a certain time of the day, planning for intimacy at alternate times may circumvent this problem.27

Neutropenia and Thrombocytopenia Neutropenia and thrombocytopenia, per se, do not necessarily interfere with intimacy, but they do pose some potential problems. Sexual intimacy during neutropenic phases may jeopardize the compromised patient, because severe neutropenia predisposes the patient to infections. Close physical contact may be inadvisable if the sexual partner has a communicable disease, such as an upper respiratory infection or

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influenza. Specific sexual practices, such as anal intercourse, are prohibited during neutropenic states due to the likelihood of subsequent infection. The absolute neutrophil count, if available, is a good indicator of neutropenic status and associated risk for infection. Patient and partner education about the risks associated with neutropenia is essential. Thrombocytopenia and the associated risk of bleeding, bruising, or hemorrhage should be considered when counseling a couple about intimacy issues. Again, anal intercourse is contraindicated due to risk for bleeding. Likewise, vigorous genital intercourse may cause vaginal bleeding. Indeed, even forceful or energetic hugging, massage, or kissing may cause bruising or bleeding. Preventative suggestions might include such strategies as gentle lovemaking, with minimal pressure on the thrombocytopenic patient, or having the patient assume the dominant position to control force and pressure.

Dyspnea Dyspnea is an extremely distressing occurrence in the endof-life trajectory. In Chapter 14, the management of this symptom is reviewed. Dyspnea, or even the fear of initiating dyspnea, can impair sexual functioning.29 General strategies can be employed to minimize dyspnea during sexual play. These can include using a waterbed to accentuate physical movements, raising the dyspneic patient’s head and shoulders to facilitate oxygenation, using supplementary oxygen and/ or inhalers before and during sexual activity, performing pulmonary hygiene measures before intimacy, encouraging slower movements to conserve energy, and modifying sexual activity to allow for enjoyment and respiratory comfort.30,31

Neuropathies Neuropathies can be a result of disease progression or complication of prior aggressive treatment. Neurological disturbances are discussed in depth in Chapter 19. Neuropathies can manifest as pain, paresthesia, and/or weakness. Depending on the location and severity of the neuropathy, sexual functioning can be altered or completely suppressed. Management or diminution of the neuropathy may or may not be feasible. If not, creative ways to evade the negative sequelae of this occurrence are necessary. Such strategies might include creative positioning, use of pillows to support affected body parts, or alternate ways of expressing physical love. The distraction of physical sexual expression may temporarily minimize the perception of the neuropathy.

Mobility and Range of Motion Mobility issues and compromised range of motion may interfere with sexual expression. Similar to issues related to fatigue, a decrease in mobility can inhibit a couple’s customary means of expressing physical love.32 A compromise in range of motion can result in a similar dilemma. For example, a female patient may no longer be able to position herself

in such a way as to allow penile penetration from above due to hip or back restrictions. Likewise, a male patient may have knee or back restrictions that make it impossible for him to be astride his partner. Regardless of the exact nature of the range-of-motion/mobility concern, several suggestions can be offered. Anti-inflammatory medication before sexual activity, experimenting with alternate positions, employing relaxation techniques before sexual play, massage, warm baths, and exploring alternative methods of expressing physical intimacy should be encouraged.33

Erectile Dysfunction Erectile dysfunction can be caused by physiological, psychological, and emotional factors.34 These factors include vascular, endocrine, and neurological causes; chronic diseases, such as renal failure35 and diabetes; and iatrogenic factors, such as surgery and medications. Surgical severing of the small nerve branches essential for erection is often a sideeffect of radical pelvic surgery, radical prostatectomy, and aortoiliac surgery.6 Vascular and neurological causes may not be reversible, although endocrine causes may be minimized. For example, the use of estrogen in advanced prostate cancer may be terminated in palliative care, which may result in the return of erectile function. Many medications decrease desire and erectile capacity in men. The most common offenders are antihypertensives, antidepressants, antihistamines, antispasmodics, sedatives or tranquilizers, barbiturates, sex hormone preparations, narcotics, and psychoactive drugs.36 Often, these medications cannot be discontinued to permit the return of erectile function; for those patients, penile implants may be an option.37 The use of sildenafi l (Viagra), vardenafi l HCl (Levitra), tadalafil (Cialis), and yohimbine (Yohimbine) have not been researched with patients receiving palliative care. These medications are classified as selective enzyme inhibitors. They relax smooth muscle, increase blood flow, and facilitate erection.38 If a vascular component is part of the underlying erectile dysfunction, the use of one of these medications may correct the problem.39 Contraindications such as underlying heart disease and other current medications should be taken into consideration.40 Otherwise, if acceptable to the couple, digital or oral stimulation of the female partner or use of a vibrator can be suggested.41

Dyspareunia Dyspareunia, like erectile dysfunction, can be caused by physiological, psychological, and emotional factors. These factors include vascular, endocrine, and neurological causes as well as iatrogenic factors such as surgery and medications.42 Vascular and neurological causes may not be reversible; endocrine causes may be minimized. For example, the use of estrogen replacement therapy (ERT), vaginal estrogen creams, or water-soluble lubricants may be helpful in

Sexuality diminishing vaginal dryness, which can cause painful intercourse. Gynecological surgery and pelvic irradiation may result in physiological changes that prevent comfortable intercourse.43 Post-irradiation changes, such as vaginal shortening, thickening, and narrowing, may result in severe dyspareunia.44 For women, as with male patients, many medications decrease desire and function. These drugs include antihypertensives, antidepressants, antihistamines, antispasmodics, sedatives or tranquilizers, barbiturates, sex hormone preparations, narcotics, and psychoactive drugs. Often, these medications cannot be discontinued in order to facilitate the return of sexual health. For those patients, digital or oral stimulation of the male partner may be suggested, if acceptable. Additionally, intrathigh and intramammary penetration may be suggested to women who find vaginal intercourse too painful.

Anxiety and Depression Anxiety and depression related to the incurable and terminal aspects of the disease may interfere with sexual desire and response.45 As two of the most common affective disorders during end-of-life care, they are thoroughly discussed in Chapter 20. Both anxiety and depression have profound effects on sexual functioning. Decreases in sexual desire, libido, and activity are common sequelae of these affective disorders. However, some interventions, especially pharmacological management, can further compromise sexual functioning. A thorough assessment of the patient’s psychological state and an evaluation of the medications currently prescribed for this condition may reveal the source of the problem. Anxiolytics and antidepressants are often prescribed for these conditions and have the potential for interfering with sexual functioning. Patients may choose symptom management and sacrifice sexual function. However, relaxation techniques, imagery, and biofeedback may lower anxiety to a tolerable level. Additionally, the release of sexual tension may itself resolve anxiety. If desire is maintained and function alone is compromised for male patients, the couple may explore alternate ways of pleasing each other. For female patients, use of water-soluble lubricants can offset the interference with arousal, if interest remains intact. Open communication between the partners and with the health care provider allows for frank discussions and the presentation of possible alternatives to expressing physical affection.

Body Image In a culture with so many sexual images focused on a type of physical beauty unattainable for many, body image is an important aspect of sexual health. Challenging one, narrow standard of beauty and encouraging self-acceptance is relevant to all populations, and should be carried out in a

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culturally sensitive manner.1 An incurable illness and concomitant end-of-life care can alter one’s physical appearance. Additionally, past treatments for disease often irrevocably alter body appearance and function. Issues such as alopecia, weight loss, cachexia, the presence of a stoma, or amputation of a body part, to name a few, can result in feelings of sexual inadequacy and/or disinterest.46,47 End-of-life care can focus on the identification and remediation of issues related to body image changes. Although an altered appearance may be permanent, counseling and behavior modification, as well as specific suggestions to minimize or mask these appearances, can improve body image to a level compatible with positive sexual health. The use of a wig, scarf, or headbands can mask alopecia. Some patients, rather than try to conceal hair loss, choose to emphasize it by shaving their heads. Weight loss and cachexia can be masked through clothing and the creative use of padding. The presence of an ostomy can significantly alter body image and negatively affect sexual functioning.48,49 Specific interventions for minimizing the effect that the presence of an ostomy has on sexual functioning depend, in part, on the particular type of ostomy. Some patients are continent, while others need an appliance attached at all times. If the patient has a continent ostomy, timing sexual activity can allow for removal of the appliance and covering the stoma. If the ostomy appliance cannot be safely removed, the patient should be taught to empty the appliance before intimate relations and to use a cover or body stocking to conceal the appliance. Alternate positions may also be considered, and in the event of a leak, sexual activity can continue in the shower. The United Ostomy Association (http://www.uoa. org) publishes four patient information booklets on sexuality and the ostomate.

Masturbation and Fantasy The topics of masturbation and fantasy are saddled with a myriad of historical myths associated with sin, illness, and immaturity that would need to be confronted in order to normalize masturbation. Encouraging masturbation as a normal adjunct to partnered sex can decrease the pressures on people to engage in penetrative sex with their partners more frequently than they have desire and arousal for.1 Some patients may view sexual expression as an essential aspect of their being, while others may see it as ancillary or unimportant. Some may have an established sexual partner; some may lose a partner through separation, divorce, or widowhood; others may begin a relationship during the course of their illness trajectory. Some patients may have several sexual partners; some couples may be gay or lesbian; others, without a sexual partner, may gain pleasure by erotic thoughts and masturbation. All of these scenarios are within the realm of the palliative care provider’s patient base. Understanding the various forms of sexual expression and pleasure is paramount in providing comprehensive care.

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Intimacy and Relationships

Interventions

Intimacy is a universal need that people try to meet through their relationships.1 A sexual partner’s interest and ability to maintain sexual relations throughout the palliative care trajectory can also be affected by many variables. Sexual expression may be impeded by the partner’s mood state (anxiety, depression, grief, or guilt), exhaustion from caregiving and assuming multiple family roles, and misconceptions about sexual appropriateness during palliative care. Anxiety and depression have profound effects on sexual functioning. Decreases in libido and sexual activity can result from depressive and anxious states.50,51 A partner may feel that the patient is “too ill” to engage in sexual activity. In turn, the partner may feel remorse or guilt for even thinking about their loved one in a sexual capacity during this time. Partners may fear that they may injure their loved one during sexual activity due to the loved one’s perceived or actual weakened state or appearance. The partner may have difficulty adjusting to the altered physical appearance of the patient (cachexia, alopecia, stomatitis, pallor, amputation, etc.). The role of caregiver may seem incompatible with that of sexual partner. As the ill partner’s health deteriorates, the well partner may assume caretaking roles that may seem incompatible with those of a lover. The myriad of responsibilities sequentially assumed by the well partner may leave him or her exhausted, which can interfere with sexual health and impede sexual performance. The partner may harbor misconceptions about sexual relations with a terminally ill partner, including diminishing the patient’s waning energy reserves or causing the illness to progress more rapidly.

The specific sexual needs and concerns of the patient and couple determine the approach and type of intervention. The intervention can address current needs, or focus on potential future needs in the form of anticipatory guidance. False assumptions about intimacy during palliative care can be addressed, and anticipatory guidance regarding what to expect as a result of advancing disease and palliative treatment is included in this discussion. Specific suggestions should go beyond limited information, and be explicit, to help the patient and their partner attain a mutually stated goal. Specific suggestions usually pertain to communication, symptom management, and alternate physical expression. Open communication between the couple and their health care practitioner regarding sexual health is essential for successful symptom management. Candid discussions regarding their emotional responses to this phase of their relationship, their fears and concerns, and their hopes and desires are included in these interactions. Symptom management is essential to optimizing sexual expression. Alternate expressions of physical intimacy may be necessary if sexual disruption is due to organic changes. If intercourse is difficult, painful, or impossible, the couple may be counseled regarding how to expand their sexual repertoire. A thorough discussion of the couple’s values, attitudes, and preferences should be done before suggesting alternatives. Using language that is understandable to the patient/partner is essential. However, the use of slang or street language may be uncomfortable to the health care practitioner—defining terms early in the discussion will alleviate this potential problem. There are many ways of giving and receiving sexual pleasure; genital intercourse is only one way of expressing physical love. The nurse can encourage the couple to expand their sexual expression to include hugging, massage, fondling, caressing, cuddling, kissing, hand-holding, and masturbation, either mutually or singularly. Sexual gratification may be derived from manual, oral, and digital stimulation. Intrathigh, anal, and intramammary intercourse are also options if the female partner is unable to continue vaginal penetration.

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Spirituality and Values Sexual health assumes congruence between one’s ethical, spiritual, and moral beliefs and one’s sexual behaviors and values. In this context, spirituality may or may not include identification with formal religions, but it addresses moral and ethical concerns. Exposure to multiple cultural traditions (e.g., Native American storytelling, African American church activism, etc.) is important, especially in those traditions that have a positive and life-affirming view of sexuality.1 Individual, family, and cultural factors influence the development of healthy sexuality in adolescents. One factor that is less often considered, but may play a role, is religion/spirituality. Attitudes or beliefs about having sex before marriage, decisions about the timing of coital debut, or contraceptive practices may be shaped by their religious/spiritual belief system, or the cultural/religious context in which they were raised.52 These values may influence the decisions that an adolescent with a life-limiting disease may make regarding sexual experiences that they choose to engage in before they die.

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Summary Incurable illness and end-of-life care may result in compromising a couple’s intimacy. To prevent or minimize this, health care practitioners should assume a leading role in the assessment and remediation of potential or identified alterations in sexual functioning. Not all couples will be concerned about their sexual health at this point of their life together. However, if sexual health is desired, all attempts should be made to facilitate this important aspect of life. People may find that being physically close to the one they love is lifeaffirming and comforting.

Sexuality As patients draw close to the end of life, their needs, hopes, and concerns remain intact as in any other stage of their life. Assessment of sexual health should occur for all patients to determine if these needs and hopes include maintenance of their sexual health. The health care practitioner’s offer of information and support can make a significant difference in a couple’s ability to adjust to the changes in sexual health during end-of-life care. The realm of sexual health and intimacy during end-of-life care remains an area in which further research is warranted. Incorporating intimacy research into end-of-life care research is a natural and much-needed area of inquiry.

REFERENCES 1. Robinson BBE, Bockting WO, Simon Rosser BR, Miner M, Coleman E. The Sexual Health Model: Application of a sexological approach to HIV prevention. Health Educ Res 2002;17(1):43–57. 2. Institute of Medicine. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC: The National Academies Press, 2007. 3. Young P. Caring for the whole patient: The Institute of Medicine proposes a new standard of care. Community Oncol 2007;4(12):748–751. 4. Krychman ML, Pereira L, Carter J, Amsterdam A. Sexual oncology: Sexual health issues in women with cancer. Oncology 2006;71(1–2):18–25. 5. Alfano CM, Rowland JH. Recovery issues in cancer survivorship: A new challenge for supportive care. Cancer J 2006;12(5):432–443. 6. Galbraith ME, Crighton F, Galbraith ME, Crighton F. Alterations of sexual function in men with cancer. Semin Oncol Nurs 2008;24(2):102–114. 7. Shell JA, Shell JA. Sexual issues in the palliative care population. Semin Oncol Nurs 2008;24(2):131–134. 8. Dibble SL, Eliason MJ, Christiansen MAD. Chronic illness care for lesbian, gay, & bisexual individuals. Nurs Clin North Am 2007;42(4):655–674. 9. Hordern AJ, Currow DC. A patient-centered approach to sexuality in the face of life-limiting illness. Med J Aust 2003;179(6 Suppl):S8–S11. 10. Rice A. Sexuality in cancer and palliative care 1: Effects of disease and treatment. Int J Palliat Nurs 2000;6(8):392–397. 11. Krebs LU. Sexual assessment: Research and clinical. Nurs Clin North Am 2007;42(4):515–529. 12. Hordern A, Street A. Communicating about patient sexuality and intimacy after cancer: Mismatched expectations and unmet needs. MJA 2007;186(5):224–227. 13. Sadovsky R, Nusbaum M. Sexual health inquiry and support is a primary care priority. J Sex Med 2006;3(1):3–11. 14. Higgins A, Barker P, Begley CM. Sexuality: The challenge to espoused holistic care. Int J Nurs Pract 2006;12(6):345–351. 15. Sanders S, Pedro LW, Bantum EO, Galbraith ME. Couples surviving prostate cancer: Long-term intimacy needs and concerns following treatment. Clin J Oncol Nurs 2006;4:503–508, 21–23. 16. Huber C, Ramnarace T, McCaff rey R. Sexuality and intimacy issues facing women with breast cancer. Oncol Nurs Forum 2006;33(6):1163–1167.

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17. Stausmire JM. Sexuality at the end of life. Am J Hosp Palliat Med 2004;21(1):33–39. 18. Stroberg P, Hedelin H, Bergstrom AB. Is sex only for the healthy and wealthy? J Sex Med 2007;4(1):176–182. 19. Hurd Clarke L. Older women and sexuality: Experiences in marital relationships across the life course. Can J Aging 2006;25(2):129–140. 20. Lindau ST, Schumm LP, Laumann EO, Levinson W, O’Muircheartaigh CA, Waite LJ. A study of sexuality and health among older adults in the United States. N Engl J Med 2007;357:762–774. 21. Lesser J, Hughes S, Kumar S. Sexual dysfunction in the older woman. Complex medical, psychiatric illnesses should be considered in evaluation and management. Psychiatr Consult 2005;60(8):18–22. 22. Loehr J, Verma S, Seguin V. Issues of sexuality in older women. J Womens Health 1997;6(4):451–457. 23. Malatesta VJ. Sexual problems, women and aging: An overview. J Women Aging 2007;19(1–2):139–154. 24. Scott LD. Sexuality & older women. Exploring issues while promoting health. AWHONN Lifelines 2002;6(6):520–525. 25. Robinson JG, Molzahn AE. Sexuality and quality of life. J Gerontol Nurs 2007;33(3):19–29. 26. Everett B, Everett B. Supporting sexual activity in long-term care. Nurs Ethics 2008;15(1):87–96. 27. Stead ML. Sexual function after treatment for gynecological malignancy. Curr Opin Oncol 2004;16:492–495. 28. Abs R, Verhelst J, Maeyaert J, et al. Endocrine consequences of long-term intrathecal administration of opioids. J Clin Endocrinol Metab 2000;85(6):2215–2222. 29. Vincent EE, Singh SJ. Review article: Addressing the sexual health of patients with COPD: The needs of the patient and implications for health care professionals. Chron Respir Dis 2007;4(2):111–115. 30. Hardin S. Cardiac disease and sexuality: Implications for research and practice. Nurs Clin North Am 2007;42(4):593–603. 31. Goodell TT. Sexuality in chronic lung disease. Nurs Clin North Am 2007;42(4):631–638. 32. Newman AM. Arthritis and sexuality. Nurs Clin North Am 2007;42(4):621–630. 33. Kautz DD. Hope for love: Practical advice for intimacy and sex after stroke . . . including commentary by Secrest J. Rehabil Nurs 2007;32(3):95–103, 32. 34. Resendes LA, McCorkle R. Spousal responses to prostate cancer: An integrative review. Cancer Invest 2006;24:192–198. 35. Katz A. What have my kidneys got to do with my sex life?: The impact of late-stage chronic kidney disease on sexual function. AJN, Am J Nurs 2006;106(9):81–83. 36. Karadeniz T, Topsakal M, Aydogmus A, et al. Erectile dysfunction under age 40: Etiology and role of contributing factors. Scientific WorldJournal 2004;4(Suppl 1):171–174. 37. Mulcahy JJ, Wilson SK, Mulcahy JJ, Wilson SK. Current use of penile implants in erectile dysfunction. Curr Urol Rep 2006;7(6):485–489. 38. Ali ST, Ali ST. Effectiveness of sildenafi l citrate (Viagra) and tadalafi l (Cialis) on sexual responses in Saudi men with erectile dysfunction in routine clinical practice. Pak J Pharm Sci 2008;21(3):275–281. 39. Hartmann U, Burkart M. Erectile dysfunctions in patient– physician communication: Optimized strategies for addressing sexual issues and the benefit of using a patient questionnaire. J Sex Med 2007;4(1):38–46.

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40. Ezzell A, Baum N, Ezzell A, Baum N. When Viagra doesn’t work. Treating erectile dysfunction. Diabetes Self Manag 2008;25(2):29–30. 41. Bruner DW, Calvano T. The sexual impact of cancer and cancer treatments in men. Nurs Clin North Am 2007;42(4):555–580. 42. Stead ML, Stead ML. Sexual function after treatment for gynecological malignancy. Curr Opin Oncol 2004;16(5):492–495. 43. Carmack Taylor CL, Basen-Engquist K, Shinn EH, et al. Predictors of sexual functioning in ovarian cancer patients. J Clin Oncol 2004;22(5):881–889. 44. Yamamoto R, Okamoto K, Ebina Y, Shirato H, Sakuragi N, Fujimoto S. Prevention of vaginal shortening following radical hysterectomy. BJOG 2000;107(7):841–845. 45. Brandberg Y, Sandelin K, Erikson S, et al. Psychological reactions, quality of life, and body image after bilateral prophylactic mastectomy in women at high risk for breast cancer: A prospective 1-year follow-up study. [see comment]. J Clin Oncol 2008;26(24):3943–3949.

46. Alfano CM, Rowland JH, Alfano CM, Rowland JH. Recovery issues in cancer survivorship: A new challenge for supportive care. Cancer J 2006;12(5):432–443. 47. Hinsley R, Hughes R, Hinsley R, Hughes R. ‘The reflections you get’: An exploration of body image and cachexia. Int J Palliat Nurs 2007;13(2):84–89. 48. Penson RT, Gallagher J, Gioiella ME, et al. Sexuality and cancer: Conversation comfort zone. Oncologist 2000;5(4):336–344. 49. Kilic E, Taycan O, Belli AK, et al. The effect of permanent ostomy on body image, self-esteem, marital adjustment, and sexual functioning. Turk Psikiyatri Dergisi 2007;18(4):302–310. 50. Barton-Burke M, Gustason CJ. Sexuality in women with cancer. Nurs Clin North Am 2007;42(4):531–554. 51. Stead ML, Brown JM, Fallowfield L, Selby P. Communication about sexual problems and sexual concerns in ovarian cancer: A qualitative study. West J Med 2002;176(1):18–19. 52. Cotton S, Berry D, Cotton S, Berry D. Religiosity, spirituality, and adolescent sexuality. Adolesc Med 2007;18(3):471–483.

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Patrick J. Coyne, Thomas J. Smith, and Laurel J. Lyckholm

Clinical Interventions, Economic Impact, and Palliative Care You Ain’t Seen Nothing Yet.—Bachman Turner Overdrive

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Key Points The scope of nursing and nursing education has expanded to include multiple domains, many of which overlap other disciplines such as wellness, disease prevention, and health services administration. Economic outcome is an area in which nursing plays an essential role in providing efficient, cost-effective, and appropriate palliative care. Health services research regarding economic outcomes, while limited, may help create a framework for addressing how to make palliative care available to everyone in an ethical, economic, and effective manner. Most nurses have major a influence in clinical interventions, yet often do not consider the economic impact.

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Why Are Economic Outcomes Important? • Health care spending and health care quality are major challenges in the United States, with health care spending reaching $2.3 trillion or $7,600 per person, a number expected to triple in the next 10 years. By several measures, health care spending continues to rise at the fastest rate in history. By 2007, there was an annual increase of 6.9, In 2007, employer health insurance premiums increased by 6.1 percent—two times the rate of inflation. The annual premium for an employer health plan covering a family of four averaged nearly $12,100, and the annual premium for single coverage averaged over $4,400.1,2 Drug costs and rising hospital expenses fueled much of this spending.1–7 • The financial costs of cancer are great, for both the individual and for society as a whole. The economic burden is likely to increase as the population ages, the absolute number of people treated for cancer increases, and newer technologies and expensive treatments are adopted as standards of care.5 Already in the year 2004, the National Institutes of Health estimated overall annual costs for cancer to be $189.8 billion, with direct medical costs totaling $69.4 million, and indirect costs from lost productivity to be $16.9 billion due to illness and $103.5 billion due to premature death.4 The United States spends more on health care than other industrialized nations, and those countries provide health insurance to all their citizens.3 Nearly 47 million Americans are uninsured, primarily because of the high cost of health insurance coverage.5 • Rising health care costs correlate to reductions in health insurance coverage.4 According to the 2003 National Health Interview Survey data, nearly 27 of Americans between the ages of 18 and 24, and 20 of Americans between the ages of 25 and 44 reported not 487

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having a regular source of health care.4 Additionally, 17 of Americans under age 65 have no health insurance, and about one third of older individuals have Medicare coverage only.6 • We spend too much money on care near the end of life. Nearly one third of all Medicare dollars are spent on patients in their last year of life.8,9 Although it is not a zero-sum situation, there is good evidence that the more is spent on high-technology care for the elderly, the less funds are available for preventive services or treatment of chronic disease conditions for the same population.10 In addition, 16–20 of solid tumor patients receive chemotherapy within two weeks of their death. Such treatment is unlikely to benefit them, but is likely to increase toxicity and costs10. The drain on health care-directed funds is likely to increase, due to heightened demands from an educated elderly population, more elderly long-term survivors, new and expensive technologies, new diseases, and demands for cost cutting. Cost effectiveness of interventions must be continually assessed. Whatever is spent must be both appropriate to the patient’s goals and maximize the resources available.11,12 The question of when, where, and why to use high-tech and highcost interventions at least partially drives this debate and must be carefully explored. There are substantial concerns about the quality of palliative care in our current system. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) showed that half of all dying patients had unnecessary pain and suffering in their final days of life while in the hospital.13 Cleeland and colleagues found that nearly half of all patients suffer unnecessary pain, even when cared for by oncologists.14 Experts agree that our health care system has inefficiencies, excessive administrative expenses, inflated prices, poor management, and in some cases inappropriate care, waste and fraud. These problems significantly

increase the cost of medical care and health insurance for employers and workers, and affect the financial security of families. Palliative care can help decrease costs while improving the care received. A recent report on multiple health care systems indicated that provision of palliative care saves money for society, in amounts ranging from several hundred to several thousand dollars per admission.15,16 The neglected area of cancer care quality and costs is under scrutiny. Active efforts are underway to improve both areas.16 The relationship of volume to quality is striking,17 as revealed in the following reports: (1) a significant (5 to 10) overall survival advantage at a breast cancer specialty center versus community hospitals;18,19 (2) better survival for testicular cancer patients treated at specialist centers;20 (3) better survival and fewer complications for ovarian cancer surgery performed by specialist gynecological oncologists rather than general surgeons or gynecologists;21 and (4) better survival for prostate cancer patients at high-volume centers.21–23 Clearly, there is a need for additional research to address these questions of quality care. In addition, nurses must be knowledgeable about health care outcomes, in particular those issues related to palliative care: the patient/family unit of care, quality of life, and decision making around end-of-life care. Unfortunately, many nurses are largely unaware and/or uninformed about these issues. Those that are aware may not have a voice within their institutions. Greater knowledge may empower nurses to take a more prominent, collaborative place at the table when such issues are being discussed and decisions are being made. We have identified some important questions about economic outcomes and palliative care, which are listed in Tables 24–1 and 24–2.

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The Ethics of Adding Economic Outcomes In the modern arena of health care, nonmedical concerns, such as cost control, oversight and audit, utilization review,

Table 24–1 Types of Needed Health and Service Research Studies Type of Study

Question Posed

Policy analysis Type of care: chemotherapy vs. best or other types of supportive care Site of service Structural and process changes in care

What outcomes justify treatment? Who should make those decisions? Does chemotherapy save money compared to best supportive care when all costs are considered? Is home site more effective and less costly compared to hospital? Can costs be reduced by changing how care is delivered, e.g., by inpatient hospice or at home? Does hospice improve quality of life and/or reduce costs of care? Do advance directives influence medical treatment decisions and/or change costs?

Hospice vs. nonhospice Advance directives and do-not-resuscitate orders Nursing ability to impact cost at end of life

Can skilled palliative care nurses effectively palliate patients and effect a savings of resources?

Clinical Interventions, Economic Impact, and Palliative Care

Table 24–2 Outcomes that Justify a Medical Intervention Justify

Do Not Justify

Improved overall survival

False hope that survival will be improved

Improved disease-free survival Improved quality of life Less toxicity Improved cost effectiveness

Cost alone

and decreasing liability risk, have assumed a significant role. Almost all authorities have argued that such management tools are ethical.23 While quality care is the primary goal of hospice and palliative medicine, cost control is an important consideration. Nursing and medicine aspire to promoting health and providing comfort and relief of suffering in a just manner. Cost control through aggressive disease management, or “critical paths,” may actually promote these goals by making more and/or better care available. However, the current systems reward/pay for hi-tech interventions but fail to reimburse effective low-tech treatments.24,25 An example of this discrepancy is that some insurance will reimburse a patient-controlled analgesia pump but will not reimburse oral analgesics. Cost control must be differentiated from profit motivation and entrepreneurship, which have not traditionally been considered the goals of medicine. These activities in the context of health care are unethical in that they may make medical care more expensive and difficult to access, especially for those who are socially disadvantaged. They may also create further conflicts of interest in already precarious fiduciary relationships between clinicians and their patients. A code of ethics that covers all professionals, rather than medicine alone, might be useful.26–31 If palliative care can be improved and/or made less costly without sacrificing quality, it should be done in the service of promoting the values of beneficence, compassion, and respect for autonomy. Palliative care has emerged as a national movement, with the advent of several important initiatives (e.g., Oncology Nursing Society; Hospice and Pallitive Nurses Association; Education for Physicians on End-of-Life Care (EPEC); and the End of Life Nursing Consortium (ELNEC)). Other well established national resource educational programs include the National Palliative Care Resource Center; City of Hope, CA; the Center to Improve Care of the Dying at George Washington University; and the Center to Advance Palliative Care at Mount Sinai Hospital in New York). In addition, palliative care programs continue to develop all over the world. The Healthcare Finance Administration’s approval of an International Classification of Diseases 9 code (ICD-9) for palliative care was a start in the effort to obtain data on the impact of palliative care in the health care system. It is to be

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expected that both hospice and palliative care will undergo careful scrutiny in the next several years.26 Some have argued that budgets should not be balanced with penalty to one group, such as the elderly or those on Medicare.28 Many health care goods are rationed justly (benefit versus risk) according to age, such as transplants, coronary bypass, and hemodialysis. This rationing is based on the theory of equality of opportunity according to ability to benefit from such procedures.29 However, palliative care is different in that age does not determine whether a person stands to benefit. In this circumstance, the ethic of distributive justice supports the concept that medical and social needs dictate who stands to benefit most from palliative care. Daniels30 reported that “it does not seem reasonable to postulate that the medical needs of the elderly terminally ill are any less than those of younger patients, and indeed they may be greater because of multiple additional pathologies associated with aging.” Sidgwick’s31 argument that each moment of life is equally valuable, no matter when it occurs, is most poignant in the instance of palliative care. This would also apply to extending palliative care to neonates expected to live only a short time after birth. Patients may view benefit and toxicity in ways very different from their health care providers and from those who are well. Data from multiple studies show that many dying cancer patients would undergo almost any treatment toxicity for a 1 chance of short-term survival, while their doctors and nurses would not; and these decisions were not changed after patients experienced the toxicity of treatment.32,33 A study of palliative radiotherapy for brain tumor patients showed little survival, modest functional benefit, and a substantial decrease in intellectual function; but most patients and families would still want it.34,35 A study of hospice patients compared to those who continued on chemotherapy showed better survival, consistent with less toxicity if chemotherapy is avoided.36 This is a complex appraisal that needs further study.

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What Is the Right Amount to Spend on Health Care? How much to spend on health care cannot be determined without knowing the economic and cultural particulars of a country or even a health system. Blanket statements about a percentage of the gross national product (GNP) may be misleading if a comparison country spends a higher percentage on social safety net programs but less on direct medical care costs. Comments about health care spending as a percent of the GNP may also reflect opinions about alternative uses; for example, “We should stop spending money on defense and spend it on health care.” In the United States, the amount spent on education has declined from 6 to 5 of the GNP, while the amount spent on health care (especially for the elderly) has risen from 6 to about 14.37 Clearly, in all countries, the

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Anticancer treatment

Cancer pain relief and palliative care

At time of diagnosis

Death

Anticancer treatment Cancer pain relief and palliative care At time of diagnosis

Death

Figure 24–1. Present allocation worldwide of cancer resources.

Figure 24–2. Proposed allocation of cancer resources in developed

Palliative care must receive more of these resources. Source: World Health Organization (1990), reference 87. Reproduced by permission of WHO.

countries. Curative and palliative care are not mutually exclusive. Resources should be dispensed to allow the greatest benefits for the majority of individuals. Source: World Health Organization (1990), reference 87. Reproduced by permission of WHO.

entire system of health care needs to be explored with policies designed to ensure that palliative care is a component of the overall health care system (Figure 24–1).38 A common threshold is the World Health Organization’s recommended 3-times per-capita GNP per quality-adjusted life year; in the U.S. that would be about $140,100 in 2008 U.S. dollars.39

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Should There Be Special Economic or Policy Considerations for Palliative Care? We believe that, in general, there should be no special considerations for palliative care. Most health care policy analysts and economists would argue that all care should be evaluated equally. For example, a therapy that gains 1 week for 52 patients should be valued as much as a therapy of equivalent cost that gains 52 weeks for 1 patient.40 Some health economists have argued that time given to those who are most at risk should be valued more (e.g., time added in the last 6 months of life should be given triple value).41 The analogy was made to food and hunger: a sandwich given to a starving person would be of more intrinsic value than one given to a person who already had many sandwiches. Such discussions, while interesting, are outside the scope of this chapter; but many of the ethical concepts applied to these global discussions have relevance to decisions about palliative care. The World Health Organization (WHO) has listed priorities for health care. In cancer care, palliative care has always been included in the same category as curative therapy. In part, this was done because most palliative care is relatively inexpensive, as well as clinically appropriate. Current allocation of resources greatly favors curative care with less support for palliative care. As Figures 24–2 and 24–3 illustrate, WHO advocates a more equal distribution of resources in developed countries, and an even greater support of palliative care in developing countries, where most of the population will experience advanced disease rather than cure or long-term survival. One approach to funding treatments has been based on cost-effectiveness ratios.41 Laupacis and colleagues42 in Canada proposed explicit funding criteria: (1) treatments that work better and are less expensive should be adopted; (2) treatments

Anticancer treatment Cancer pain relief and palliative care At time of diagnosis

Death

Figure 24–3. Proposed allocation of cancer resources in developing countries. As developing countries are the least likely to prevent, detect, and cure cancers, the distribution of resources should be further tailored to best meet the needs of their population. (It is a great ethical dilemma: do you cure one to allow 1000 more to suffer?) Source: World Health Organization (1990), reference 87. Reproduced by permission of WHO.

with cost-effectiveness ratios of less than C$20,000 per additional life year (LY) gained should be accepted, with the recognition that they cost additional resources; (3) treatments with cost-effectiveness ratios of $20,000 to C$100,000/LY should be examined on a case-by-case basis with caution; (4) and treatments with cost-effectiveness ratios of greater than C$100,000/LY should be rejected. These criteria are valid in a system where all resources are shared equally; it is not clear how they apply to other health care systems, where resources may not be shared.43 Alternatively, patients might be allowed to purchase additional insurance for expensive treatments or pay for them out of pocket. In the United States, there has been no accepted answer, but most authorities have agreed on an implicitly defined benchmark of $35,000 to $50,000/ LY saved.40 For example, an individual with a pathological fracture of a femur is sent to the operating room for pinning. This surgery will aid in relieving pain, improving function, and probably decreasing other potential complications, such as decubitus ulcer and deep venous thrombosis. In addition, home care may become a viable option.

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What Are Important Economic Outcomes? Economic and clinical outcomes are closely related. Cost should always be considered along with clinical benefit.


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Table 24–3 Standard Definitions for Economic Outcome Analysis Term

Definition

Comment

Resource utilization

Number of units used (e.g., 9 hospital days)

Charge

What is billed to the patient

Cost

What it costs society to provide the service Costs of standard medical interventions

Best collected prospectively, using a combination of clinical research forms, hospital bills, and patient diaries for outpatient or off-site events. May be fair representation of the cost of service. Can be accurately converted to costs using ratio of charges to cost.92 This is different from the charge because many services cost more or less than what is billed. Usual “cost-drivers” include hospital days, professional fees, diagnostic tests, pharmacy fees, other (e.g., blood products, operating room, emergency services). Includes transportation, time lost from work, caregiver costs, etc. Most are not covered by insurance and may be “out-of-pocket” costs. Should be explicitly stated. Most analyses are done from the perspective of society (valuing this intervention vs. other uses of the same money) or a health care system (valuing this intervention against other local health care needs). The perspective of the individual patient or provider may give less attention to the needs of others.36 Health effects and costs should normally be discounted at 3 per year. Health benefits in the present are worth more than those in the future.

Direct medical cost

Direct nonmedical cost

Costs of medical interventions not usually captured but directly caused

Perspective

The viewpoint of the analysis

Discounting

Adjusts value of intervention for future benefit to present-time amount

Source: Smith (1993), reference 40. Copyright © 1993, American Medical Association. All right reserved.

However, making decisions is not easy. For example, the American Society of Clinical Oncology (ASCO),43 could not define the lowest amount of benefit that justified an intervention; for example, two weeks of quality survival. They did, however, recommend,that the benefit be weighed against the toxicity and costs.44 The economic data necessary to make decisions about treatment may be collected in much the same way as clinical information, and within standard formats for collection and analysis.45–47 Some standard definitions are listed in Table 24–3. It is important to organize data in a way that balances clinical and cost information side by side, as shown in Table 24–3. Cost effectiveness is the amount of money someone must pay to gain additional months or years of life. The usual benchmark is “life years gained” or LYs. The standard costeffectiveness question is ΔC/ΔE = (C2 – C1)/(E2 – E1) where C = costs and E = effectiveness of treatment measured in time. To adjust for quality of life, when the quantity does not change, the concept of utility is used. Utility is the value placed on time in a particular state of health. Perfect health would be assigned a utility value of 1.0 and death a value of 0.0. When utility, or the time × the utility value, is added, the equation becomes ΔC/ΔU where ΔU = U2 – U1. For example, a therapy that does not improve survival but increases

utility by 10 will increase U by (1 year) × (0.10) = 0.1 year. If this treatment costs an additional $10,000/year, then the cost-utility ratio is: ΔC = C2 – C1 = $10,000 = $100,000/QALY. ΔU = U2 – U1 = 0.10 Such values can be compared to other medical interventions, as shown in Table 24–4. Some countries such as Canada and the United Kingdom use such tables to make decisions on what can be afforded. The decision making process is never easy, since as it always means withholding some desired care.

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Chemotherapy and Palliative Care Chemotherapy may be an appropriate treatment decision in palliative care as long as the transition to palliative care is made while resources and quality time are still available to the patient and family.49,50 It is possible to give palliative chemotherapy with cost effectiveness within accepted limits51–54 (Table 24–5). Lung cancer chemotherapy with older regimens improved survival by a few months, and relieved symptoms, at a reasonable cost to society. For example, chemotherapy

Table 24–4 Ways to Balance Clinical Evaluation and Cost Studies Type of Study

Advantages and Disadvantages

Clinical outcomes only

Ignore costs. Easy to choose among clearly superior therapies such as cisplatin for testicular cancer; harder among all others that give lesser benefits at high costs. Ignores clinical outcomes. Does not help choose among clinical strategies. The cost of colony-stimulating factor (CSF) mobilization of stem cells may be higher than that of bone marrow collection, but it saves money later by reducing hospital stay.35

Cost only (e.g., cost of treating febrile neutropenia)

Costs and clinical outcomes together Cost minimization Assumes that two strategies are equal; lowest cost strategy is preferred. Cost effectiveness Compares two strategies; assigns dollar amount per additional year of life (life year [LY]) saved by strategy. Example: at present, CSFs have not improved survival, so cost must be lower for therapy to be cost-effective. Cost utility Compares two strategies; assigns dollar amount per additional LY saved by strategy, then estimates the quality of that benefit in cost per quality adjusted LY. No data show significant improvement in quality of life or utilities in patients who have received CSFs, so they are unlikely to have major impact. Cost benefit Compares two strategies but converts the clinical benefits to money (e.g., a year of life is worth $100,000). This is possible but is rarely done due to difficulty in assigning monetary value to benefit; requires assigning a monetary value to human life.

Table 24–5 Chemotherapy vs. Best Palliative Care or Alternative Treatments Topic

Conclusion

Lung cancer Chemotherapy vs. best supportive care in non-small-cell lung cancer.44,46

Chemotherapy gained 8–13 weeks compared to best supportive care.44

Combined modality including chemotherapy vs. radiation or surgery for stage III non-small-cell lung cancer.47–49

Alternating chemotherapy for small-cell lung cancer84 Gastrointestinal cancer Chemotherapy vs. best supportive care followed by chemotherapy for gastrointestinal cancer patients50 Prostate cancer Palliative chemotherapy with mitoxantrone plus prednisone vs. prednisone51,52 Breast cancer High-dose chemotherapy for limited metastatic disease vs. standard chemotherapy56 Other Acute myelogenous leukemia58

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Chemotherapy generally saved money for the province of Ontario, from a savings of $8000 to an additional cost of $20,000 depending on assumptions. Similar results were found for vinorelbine and cisplatin.46 Chemotherapy in combination with radiation or surgery adds clinical benefit; for chemotherapy plus radiation, 1- and 5-year survival rates are increased from 40 to 54 and from 6 to 17, respectively. The addition of chemotherapy to IIIB patients added cost of $15,866, and addition of chemotherapy to IIIB patients added $8912. The cost per year of life gained was well within accepted bounds at $3348 to $14,958 CAN. The alternating chemotherapy arm cost more, but because it was more effective, the marginal cost effectiveness was only $4560/year of life. Chemotherapy added 5 months median survival if given early rather than late, with symptom palliation for 4 months. The additional cost of about $20,000 per life year was within accepted bounds. Mitoxantrone did not improve survival but did improve quality of life as measured by several indices, and the mitoxantrone strategy cost less than prednisone supportive care. High-dose chemotherapy added 6 months at a cost of $58,000, or $116,000 per life year; this is palliative care because this treatment has not been shown to be curative. Chemotherapy, compared to supportive care, added additional cost, but the cost effectiveness was $18,000/life year, within acceptable limits.

Clinical Interventions, Economic Impact, and Palliative Care with cisplatin and vinorelbine, compared to vinorelbine alone or cisplatin and vindesine, added substantial clinical benefit to the patient54–56 at a reasonable cost effectiveness of C$15,000 to C$17,000/LY.55 Such studies are in critical need of updating with drugs such as bevacizumab, which can cost $100,000 a year but adds two months of survival.56 Chemotherapy for metastatic prostate cancer improves survival by about 2.4 months; the cost effectiveness ratio of £33,000 ($49,000 US) for year of life added is within usual societal accepted values. Because of this, chemotherapy for metastatic prostate cancer has been approved in Great Britian by the National Institute for Clinical Effectivnesss (NICE) program.57 However, in the United States, several different types of chemotherapy may be offered to the patient when only one has known efficacy. The cost effectiveness of all but docetaxol is likely to be exceedingly high.

o]

Models of Care and Cost The less expensive the setting, the less costly the intervention, as shown in Table 24–6. Home opioid infusions had lower total costs. This was associated with the lower cost of home care

Table 24–6 Site of Service Topic

Conclusion

Opioids in home infusion

Inpatient or outpatient

Per diem costs were higher for home patients, but total costs were lower, with equivalent palliation.59 Outpatient administration was less expensive, $184 vs. $223US.60

Home or inpatient/clinic chemotherapy

Home chemotherapy was safe, well accepted, and cost less per treatment.61

despite higher drug equipment and nursing costs.58 Outpatient administration of chemotherapy was less expensive than inpatient administration.59,60 Home chemotherapy compared to outpatient chemotherapy was usually well accepted by patients, with only two of 424 patients electing to discontinue home treatment. The total costs were equivalent, with an average cost of $50 as compared to $116 in the hospital, and equal total costs.59 Disease-management strategies have shown some modest improvements, with better quality of care, less cost, and high patient satisfaction. The available studies are shown in Table 24–7. Coordinated care may be one of the most economically successful disease-management strategies. The Medicare Hospice Benefit requires nurse coordination, team management, easy access to low per diem hospital beds for respite or temporary care, and expanded drug coverage.61,62 Adding a nurse coordinator for terminally ill patients in England did not change disease outcomes. The patients still died, and most still had some unrelieved symptoms. However, patient and family satisfaction did improve slightly.63 Total costs were reduced from £8814 to £4414. The cost savings were associated with decreased number of hospital days. The cost savings of 41 was seen regardless of diagnosis. Home nursing care was associated with more patients dying at home, and hospice patients who did not continue with chemotherapy appear to have lived longer than those who stayed on chemotherapy. Recent randomized studies show that a modified palliative care presence (with lower costs than full hospice care per diem charges), and control over the clinical care of the patient, is associated with fewer hospitalizations, fewer ICU hospital days, and lower costs. Brumley et al. studied patients in the Kaiser Permanente health maintenance organization, 161 in the Palliative Care Program and 139 in the comparison group.63–66 Palliative care patients had significantly fewer emergency department visits, hospital days, skilled nursing facility days, and physician visits. There was a 45 decrease in costs as compared to usual care patients. A randomized study showed increased satisfaction when palliative care was added to usual care. There were fewer emergency room visits, and lower costs (mean cost for patients enrolled in the

Table 24–7 Process or Structural Changes in Care Topic

Conclusion

Reducing uncontrolled pain admissions

A system-wide intervention of focus on pain management, a supportive-care consultation team, and a pain resource center. Th is was associated with a reduction in admissions from 255/5772 (4.4) to 121/4076 (3.0), at a project cost savings of $2,719,245.66 Nursing care availability allowed more patients to die at home, consistent with the wishes of most patients.65 A division changed practice to standardized oral antiemetics and once-daily ceft riaxone and gentamicin. Cost savings were estimated at $250,000 for each intervention, yearly.63,85,88,89

Presence of nursing care for end of life Clinical practice guidelines for supportive care: antiemetics, treatment of febrile neutropenia, treatment of pain

493

494


palliative care group was $12,670, compared with $20,222 for usual care).67,68 The palliative care approach has been adopted by many other Kaiser Permanente groups as part of routine care for patients with advanced illness. Teaching staff about choices for intensive care unit (ICU) use can improve economic outcomes. In one setting, an ethicist in the surgical ICU addressed the issues of patient choice about dying, and the ethics of futile care. This was associated with a decrease in length of stay from 28 to 16 days, and a decrease in surgical intensive care days from 2028 to 1003, far greater than observed in other parts of the hospital. Cost savings were estimated at $1.8 million.69 In a similar project, Dowdy and colleagues70 did proactive ethics consultations for all mechanically ventilated patients beyond four days, and showed improved length of stay (less use of the ICU, either by discontinuing futile care or transferring the patient to lesserintensity units) and a decrease in costs. Clinical practice guidelines for supportive care may decrease costs, but formal data have not been published.71 While there have been significant anecdotal data and clinical opinion that hospice provides improved quality and decreased cost, the available research data do not show that hospice improves care or saves money, as shown in Table 24–8.70–72 A large, randomized controlled trial of hospice versus standard care showed that hospice did not improve quality of care by any measured benchmark (pain, ability to perform activities of daily living). Patients still used many hospital days (48 for

controls, and 51 for hospice), but more of the hospice patients were hospitalized on the hospice unit. There was no difference in diagnostic procedures or total costs (about $15,000 per patient).73 Other data suggest that hospice care can be cost saving.16,66,67 For example, several studies have demostrated that utilizing palliative care improves quality while reducing cost.11,15,25,68 In the 1992 Medicare files, those cancer patients who elected hospice cost less than those who did not elect hospice. For those who enrolled in hospice in the last month of life, Medicare saved $1.65 for each $1 spent. However, those who elected hospice tended to use more resources in the months from diagnosis until about three months before death, so the total disease-management savings were close to zero. Similar findings were reported previously.72 Database studies have shown similar results. In a retrospective study of 12,000 patients at 40 centers, Aiken73 found that hospice patients were more likely to receive home nursing care and to spend less time in the hospital than conventional care patients. Of the three models of care evaluated, conventional care was the least expensive when overall disease-management costs were calculated, but hospital-based hospice ($2270) and home care hospice ($2657) were less expensive than conventional care ($6100) in the last month of life. Advanced directives, such as “do-not-resuscitate” (DNR) orders, have been advocated to allow patients to make autonomous choices about their care at the end of life, and possibly

Table 24–8 Hospice vs. Nonhospice Care Topic

Conclusion

Randomized controlled trial of hospice vs. nonhospice care in Veterans Hospital Hospice election vs. standard care, Medicare beneficiaries, 1992 Hospice election vs. standard care, Medicare beneficiaries, 1988 Total costs from databases

Hospice did not improve or worsen quality of care by any measured benchmark (pain, ability to perform activities of daily living). There was no difference in diagnostic procedures. Total costs were $15,000 per patient, with no difference in the arms.87 Medicare saved $1.65 for each $1 spent on hospice programs; most of the savings occurred during the last month of life.72

Total disease-management costs comparing those who elected hospice to those who did not Home care

Matching resource use to the dying patient

Medicare saved $1.26 for each $1 spent on hospice programs; most of the savings occurred during the last month of life.74 No significant difference in total costs from diagnosis to death, but significant cost savings of 39 for hospice patients who were in hospice more than 2 weeks.88 No different or slightly higher costs among Medicare beneficiaries who elected hospice. Within the hospice period, average 27 days, costs were slightly lower for those who elected hospice.63

Home care provided by relatives is not much different ($4563 for each 3-month period) from costs in a nursing home or similar setting. The sicker the patient became, the more the cost to the family regardless of diagnosis. Costs were lowest when the patient and caregiver lived in the same household.89,90 Hospice patients were likely to receive more home nursing and to spend less time in the hospital than conventional care patients. Conventional care was the least expensive when overall disease management costs were calculated, but hospital-based hospice ($2270) and home care hospice ($2657) were less.


495

Table 24–9 Use of Advanced Directives, Do-Not-Resuscitate (DNR) Orders Study

Conclusion

California durable power of attorney for health care placed on chart78 DNR94

No effect on treatment charges, types of treatment, or health status.

Advance directives in SUPPORT hospitals77

Average of $57,334 for those without DNR orders, compared to $62,594 for those with DNR orders. No cost savings with advance directives. Before the SUPPORT intervention, there was a 23 reduction in cost associated with presence of advance directives ($21,284 versus $26,127). Intervention patients were more likely to have advance directives documented. Average cost was $24,178 for those without advance directives, $28,017 for those with advance directives on the intervention arm.

to reduce costs by preventing futile care. However, as reviewed by Emanuel and Emanuel,74,75 there has been no cost saving associated with the use of either advance directives or DNR orders (Table 24–9). These findings were confirmed in the SUPPORT study.76 End-of-life or advance planning is clearly a part of palliative care and care of the dying. Levinsky27 has questioned whether end-of-life planning has become an economic strategy as much as a way to respect a patient’s wishes: “Confusion between advance planning as a method to fi nd out what the patient wants, and advance planning as a mechanism to reduce medical care and thereby contain costs, represents a clear danger to the goals of informed consent and autonomy for patients.” In a randomized study of 204 patients with lifethreatening diseases, it was found that in those who executed an advance directive, there was no significant positive or negative effect on well-being, health status, medical treatments, or medical treatment charges.77 Studies show that a palliative care presence is associated with fewer hospitalizations, fewer ICU hospital days, and lower costs. As palliative care continues to expand and develop, obtaining and assessing the data will allow the true impact of this field to be known.

o]

Nursing Issues Nurses play a large role in the decisions patients, families, and other health care providers make, and those decisions drive the cost of care. Role utilization and its potential influence will vary within each setting.78 For example, a complete interdisciplinary palliative care team may be necessary to meet the needs of the population in a large university-based hospital, yet a specially trained nurse with interdiciplinary support. may be adequate in a small community hospital. Such coupling of services should be examined from the standpoint of quality of care and cost effectiveness.79 The Advanced Practice nurse may play a significant role in identifying and coordinating the needs of patients/ families requiring palliation. Advanced Practice Nurses are

perfectly positioned to fill such a critical need for this population in the hospital, hospice, and nursing home.80–83 A factor not fully examined is the out-of-pocket cost that the patient’s significant others bear in caring for them. These include lost work hours, expended resources, and simple care hours not reimbursed through insurance or government assistance. Also to be determined is the increased health care costs of those caregivers, who frequently neglect their own health while caring for others.83,84 Nursing as a profession needs to continue to advocate for this population while supporting effective quality care, and fair utilization of resources. The use of advanced technology, especially expensive diagnostic tests, may be accepted as routine in an acute care hospital, regardless of cost and goals of care.85 Consider the following examples: 1. An 82-year-old man with end-stage chronic obstructive pulmonary disease requests removal from a respirator and comfort measures only. He is deemed competent, yet it is questionable whether he will be able to survive off the respirator. His wishes are followed, and he is extubated. While adamantly refusing any discussion regarding reintubation, he continues to have arterial blood gases sampled every 2 to 3 hours around the clock. Clearly, use of such sampling is impractical, wasteful and potentially harmful because the patient refuses reintubation. In addition, he is kept in the ICU, which he no longer requires as the level of monitoring has changed in accordance with his wishes for comfort care only. 2. A 32-year-old man with widely metastatic colon cancer arrives in your facility with a bowel obstruction related to his disease. He has been in the local hospice program. After evaluation, his prognosis is confi rmed to be approximately six weeks. He has a nasogastric tube placed to relieve persistent nausea, vomiting, and abdominal discomfort. After four days of nasogastric decompression, the tube is clamped and he is given subcutaneous octreotide, which alone controls the nausea and vomiting. The local hospice refuses to accept this patient, as the octreotide is too costly.

496


3. A 29-year-old woman with acquired immunodeficiency syndrome (AIDS) is admitted for severe debilitating neuropathic pain, unresponsive to typical adjunctive analgesic agents. The patient is losing her ability to ambulate and perform activities of daily living, due to the pain. She is given a trial of epidural opioids with local anesthetic, which offers almost complete pain relief and significantly improved function. An intrathecally implanted pump, at a cost of over ten thousand dollars, is placed. While the initial cost is staggering, the long-term benefits are considerable, including measurable improved functional status, decreased occurrence of depression, decrease in required skilled and nonskilled nursing care hours, and improved quality of life for both the patient and her significant others. 4. A 60-year-old woman with refractory, late stage multiple myeloma is admitted with an adjusted serum calcium level of 17.9 g/dL. Intravenous fluids, diuretics, bisphosphonate, and calcitonin are administered, and serum calcium is drawn every 12 hours. The patient’s disease is irreversible. The prescribed interventions will perhaps delay an inevitable outcome by a few days, but they will cost thousands of dollars while marginally, if at all, improving her quality of life. 5. A 36-year -old man with a self-inflicted gunshot wound arrives in the emergency department of a financially struggling inner-city hospital. The neurosurgical team determines the injury to the brain is devastating and that the prognosis is grave. The family requests all measures to keep him alive “no matter what.” They demand ongoing ventilator and nutritional support. His primary nurse wonders what his role should be in this situation. How will he advocate for the patient while still advocating for ethical and just utilization of resources? 6. A 68-year-old previously healthy woman has suffered a traumatic subdural hematoma, with significant brain damage. She only opens her eyes to verbal stimuli and does not follow commands two weeks after her injury. She has been receiving nasogastric feedings. The patient has a living will that clearly states no artificial nutrition if her condition becomes irreversible. The social worker informs the medical team that she cannot place this patient in a nursing home unless she becomes “skilled,” which a gastrostomy feeding tube would accomplish. The hospital could lose considerable revenue if the patient is not placed in a nursing home.

strategies. Chemotherapy for some cancers (non-small-cell lung cancer, prostate cancer, and gastrointestinal cancer) is reasonably effective and has acceptable cost-effectiveness ratios. Coordination of palliative care shows no major clinical benefit but does show major cost savings. Directed, ethicallymotivated interventions about futile care appear to produce significant cost savings. The use of advance directives or hospice care may be good medical care, but have not been shown to produce major economic benefit. Most recently, integrated palliative care teams have been shown to reduce hospital and end-of-life care costs for seriously ill patients. The cost of care is rising due to the increasing age of the population, more cancer cases and chronic diseases, increased demand for treatment, and new and expensive technologies. Our limited resources must be rationed wisely so that we can provide both curative and palliative care. The ethical implications of using economic and management outcomes rather than traditional health outcomes include shift ing emphasis from helping at all cost to helping at a cost society can afford, as well as how much society is willing to pay. The value of care to the dying versus those with curable illnesses, and tolerance of suboptimal care, are ethical and societal issues. From the perspective of economics or health service research, the outcomes of palliative care do not differ from those of other cancer treatment or treatment of other chronic illnesses. For treatment to be justified, there must be some demonstrable improvement in disease-free or overall survival, toxicity, quality of life, or cost effectiveness. Palliative care usually does not change survival, and it does not have a measurable cost-effectiveness ratio since it does usually not gain years of life. Only a few studies have assessed the economic outcomes of palliative therapy. The major areas of interest include the following: (1) palliative chemotherapy versus best supportive care; (2) supportive care for cancer symptoms; (3) the process and structure of care; (4) follow-up; (5) cost savings; and (6) hospice care. Palliative first-line chemotherapy for stage III and IV non-small-cell lung cancer, mitoxantrone for prostate cancer, and fluorouracil-based chemotherapy for gastrointestinal cancer have acceptable cost-effectiveness ratios. Supportive care effectiveness and cost for infections, nausea, and pain can be improved. Research outside of cancer is scant. Hospice care does not increase costs or worsen survival. Integrated palliative care appears to improve care and reduce overall costs. Nurses clearly have the ability to impact the care and cost for this population and should be at the forefront of these issues.

o] o]

Summary Economic outcomes are increasingly important for all types of health care, including palliative care. There are substantial opportunities for improvement by using disease management

Acknowledgments Th is work is based on a chapter published in Topics in Palliative Care, Vol. 5, edited by R.K. Portenoy, and E. Bruera: Economic outcomes and palliative care, by Thomas J. Smith and Laurie Lyckholm. New York: Oxford University Press, 2001:157–175.


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Clinical Interventions, Economic Impact, and Palliative Care 77. Teno J, Lynn J, Connors AF, Jr, et al. The illusion of end-oflife resource savings with advance directives. SUPPORT Investigators: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc 1997; 45:513–518. 78. Schneiderman LJ, Kronick R, Kaplan RM, Anderson JP, Langer RD. Effects of offering advance directives on medical treatments and costs. Ann Intern Med 1992;117:599–606. 79. Cassel J. Measurement issues for palliative care programs. In Panke J, Coyne P, eds. Conversations in Palliative Care (2nd ed). Dubuque, IA: Kendall/Hunt Publishing Co., 2006:231–236. 80. Coyne P, Ratliff B, Smith T. Frequently Asked Questions (FAQ’s) about palliative care financing. In: Panke J, Coyne P, eds. Conversations in Palliative Care (2nd ed). Dubuque, IA: Kendall/Hunt Publishing Co., 2006. 81. Coyne PJ. Evolution of the advanced practice nurse within palliative care. J Palliat Med 2003;6:767–768. 82. Reb A. Palliative and end of life care: Policy analysis. Oncol Nurs Forum 2003;30:35–50. 83. Coyne P, Dahlin C, Campbell M, Lentz J, Lynch M, Stahl D. Value of advanced practice nurse in palliative care: An HPNA position statement. J Hospice Palliative Nurs 2007;9(2):72–73.

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84. Cawthone V. Resource utilization. In: Panke J, Coyne P, eds. Conversations in Palliative Care (2nd ed). Dubuque, IA: Kendall/Hunt Publishing Co., 2006:223–230. 85. Levine C. The loneliness of the long-term care giver. N Engl J Med 1999;340:1587–1590. 86. Coyne P. A bridge to where? J Hospice Palliative Nurs 2007; 9(5):231–232. 87. World Health Organization. Cancer Pain Relief and Palliative care. Technical Report Series 304. Geneva:Author, 1990. 88. Smith TJ. Reducing the costs of supportive care. 1: Antibiotics for febrile neutropenia. Clin Oncol Alert 1996;11:47–49. 89. Smith TJ. Reducing the costs of supportive care. 11: Antiemetics. Clin Oncol Alert 1996;11:62–64. 90. Kane PL, Berstein L, Whales J, Leibowitz A, Kaplan S. A randomized control trial of hospice care. Lancet 1984;1:890–894. 91. Brooks CH, Smyth-Staruch K. Hospice home care cost savings to third party insurers. Mes Care 1984;22:691–703. 92. Stommel M, Given CW, Given BA. The cost of cancer home care to families. Cancer 1993;71:1867–1874. 93. Given BA, Given CW, Stommel M. Family and out-ofpocket costs for women with breast cancer. Cancer Pract 1994;2:187–193.


25o]

Barton T. Bobb

Urgent Syndromes at the End of Life I really need to have this bed at home to stay comfortable, since I can’t move my legs. This bed has made a huge difference.—Joe, a patient with probably only a few weeks left to live and malignant spinal cord compression that rapidly progressed from causing weakness to paraplegia, in spite of aggressive treatment; he is explaining, prior to discharge from the palliative care unit, why he needs the same specialty bed at home

Syndromes Covered in This Chapter Include: Superior vena caval obstruction ◆ Pleural eff usion ◆ Pericardial eff usion ◆ Hemoptysis ◆ Spinal cord compression ◆ Hypercalcemia ◆

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Hallmarks of palliative care are skilled assessment and rapid evaluation and management of symptoms that impact negatively on patient and family quality of life. This chapter addresses select syndromes that unless recognized and treated promptly will cause unnecessary suffering for the patient and family.

o]o]o] SUPERIOR VENA CAVAL OBSTRUCTION 9= CASE STUDY Mr. B, A Patient with Non-Small Cell Lung Cancer Mr. B, a 56-year-old bricklayer, was diagnosed with small-cell lung cancer three months ago and has been receiving chemotherapy. He is going to receive radiation therapy in the future. He has tried to continue working as much as possible. He comes in to see his oncologist for scheduled follow-up today, and during his nursing assessment he complains, “I’ve been having more shortness of breath the past few days. I’ve also got this funny dry cough and get a little dizzy every now and then. Come to think of it, my face and upper right arm look a little puff y. What do you think? Should I be worried about this?”

Key Points Superior vena caval obstruction can cause distressing symptoms that are amenable to palliation. The common presenting symptoms are dyspnea, facial swelling, and feeling of fullness in the head. The patient’s swollen and distorted facial features can be highly upsetting to the patient and family. The diagnosis of vena caval syndrome can usually be made on clinical grounds.

o] Definition Superior vena caval obstruction (SVCO) is a disorder produced by obstruction of blood flow in the superior vena cava, which results in impairment of blood flow through the superior vena cava into the right atrium. Severity of the syndrome depends on rapidity of onset, location of the obstruction, and whether or not the obstruction is partial or complete. Obstruction may occur acutely or gradually, and symptoms may be severe and debilitating.1,2

Epidemiology The patient most likely to experience SVCO is a 50- to 70-year-old man with a primary or metastatic tumor of the mediastinum. More than 90 of SVCO cases have been due to cancer, most commonly, endobronchial tumors.2,3 More recent research indicates that the percentage of SVCO cases due to nonmalignant causes, primarly due to the higher use of intravascular devices, has probably risen.4 In the majority of patients, the presence of SVCO is not a poor prognostic indicator of survival.5 The prognosis of patients with SVCO strongly correlates with the prognosis of underlying disease.

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Two types of obstruction may cause SVCO: (1) intrinsic obstruction, and (2) extrinsic obstruction.1 Intrinsic obstruction is usually caused by primary tracheal malignancies that invade the airway epithelium, that is, squamous cell carcinoma and adenoid cystic carcinoma, as well as other benign and malignant tumors. Extrinsic obstruction occurs when airways are surrounded and compressed by external tumors or enlarged lymph nodes, that is, lymphoma, and locally advanced thyroid, lung, or esophageal cancers. Obstruction may be caused by a tumor arising in the right main or upperlobe bronchus or by large-volume lymphadenopathy in the right paratracheal or precarinal lymph node chains.6 Thrombosis of the superior vena cava (SVC) is also associated with insertion of indwelling intracaval catheters and central-venous access devices, which are thought to damage the intima of vessels. Both adults and children may experience thrombosis of the SVC. More than compression or tumor, thrombosis is likely to cause acute and complete obstruction of the SVC.7 Cancer patients are also at greater risk of experiencing hypercoagulopathies, which increase the risk of experiencing thrombosis and SVCO. Other less common nonmalignant causes associated with SVCO are mediastinal fibrosis from histoplasmosis and iatrogenic complications from cardiovascular surgery.7,8

Pathophysiology The superior vena cava is located in the rigid thoracic cavity and is surrounded by a number of structures, including the sternum, trachea, right bronchus, aorta, pulmonary artery, and several lymph node chains. There is little room for structures to move or expand within this cavity, thus the superior vena cava is vulnerable to any space-occupying lesion in its vicinity. Venous drainage from the head, neck, upper extremities, and upper thorax collects in the SVC on its way to the right atrium. The SVC has a thin wall, and normally, blood flows through the vessel under low pressure. When the vessel is compressed, blood flow is slowed, fluid pressure is increased, and occlusion may occur.9 When venous collateral circulation has time to develop, the symptoms of SVCO are likely to develop insidiously.10 The presence of collateral circulation, tumor growth rate, and extent and location of the blockage are factors in determining how rapidly SVCO develops.11

distention of the chest wall (54), facial edema (46), plethora, a very ruddy facial complexion (19), and cyanosis (19). Patients may experience tachypnea, hoarseness, nasal stuffiness, periorbital edema, redness and edema of the conjunctivae, and, rarely, paralyzed vocal cord.16 In severe or rapid cases, where collateral circulation has not yet made accommodation for increased blood flow, symptoms may be immediately life-threatening. Patients may experience orthopnea, stridor, respiratory distress, headache, visual disturbances, dizziness, syncope, lethargy, and irritability. As the condition further progresses, significant mental status changes occur, including stupor, coma, seizures, and, ultimately, death.17

Diagnostic Procedures Plain chest x-ray fi lms are the least invasive diagnostic modality.7 Computed tomography (CT) is the most widely available and used modality to elucidate the location, extent of obstruction or stenosis, presence and extent of thrombus formation, and status of collateral circulation,18–20 and can be performed unless the patient is so debilitated that no further treatment is indicated or desired by the patient.21 Magnetic resonance imaging (MRI) is another diagnostic tool that can confirm the diagnosis of SVC21 and distinguish between tumor mass or thrombosis.

Palliation of Symptoms The effectiveness of palliation of symptoms of SVCO in patients who have persistent or recurrent small-cell lung cancer (SCLC) has been reviewed.5 Chemotherapy or mediastinal radiation therapy were found to be very effective as initial treatment for patients who have SCLC and SVCO at first presentation, as well as in those with recurrent or persistent disease. It was recommended that radiation therapy be used in those patients who have been previously treated with chemotherapy. However, due to side effects, large fractions should be avoided.5 When comparing the treatment modalities used to treat SVCO, including chemotherapy alone, chemotherapy and radiation therapy, and radiation therapy alone, none has proved superior.6 Adverse prognostic indicators are dysphagia, hoarseness, and stridor.

SVC Stenting Signs and Symptoms The onset of symptoms is often insidious. Patients may report subtle signs that include venous engorgement in the morning hours after awakening from sleep, difficulty removing rings from fingers, and an increase in symptoms when bending forward or stooping, all of which may not be noticed initially.1,9,12,13 The most common symptom of the syndrome is dyspnea.12,14,15 Swelling of the neck and face is seen in 50 of patients. Other common symptoms are cough (54), arm swelling (18), chest pain (15), and dysphagia (9).7 Physical findings include venous distention of the neck (66), venous

Current American College of Chest Physicians (ACCP) guidelines state that lung cancer patients with symptomatic SVCO can be treated with a combination of chemotherapy, radiation therapy, and/or insertion of an SVC stent.22 Patients with severe symptoms are often best treated initially by SVC stenting, especially if a tissue diagnosis has not been made yet. However, the decision should be made on a case by case basis, as many patients with lung cancer respond very quickly to radiation or chemotherapy.1 Although there are no controlled studies comparing radiation therapy with SVC stenting, several reviews and nonrandomized studies indicate

Urgent Syndromes at the End of Life that this procedure can relieve edema, promote improved superficial collateral vein drainage, and improve neurological impairment. It can also relieve dyspnea, provide greater relief of obstruction, create few or minor complications,1,6,17,23–26 and allow for the full use of chemotherapy and radiation therapy,17 thus providing more rapid relief in a higher proportion of patients.6 Complications associated with SVC stenting procedures include bleeding due to anticoagulation, arrhythmia, septic episodes, thrombosis, fibrosis, and migration of the stent. Thrombolytic Therapies Thrombolytic therapy has often been successful in the lysing of SVC thrombi.27 Another alternative, percutaneous angioplasty with or without thrombolytics, may open SVC obstructions. Documented thrombi may be treated with tissue plasminogen activators (TPS). Drug Therapy Steroids have been one of the standard therapies for treatment of SVCO, in spite of the lack of research-based evidence to support their use. Prednisone and methylprednisolone have both been used to reduce inflammation in the treatment of SVCO, but the typical regimen is generally 4 mg of dexamethasone every 6 hours.2 Diuretics, such as furosemide, may be given to promote diuresis, thus decreasing venous return to the heart, which reduces pressure in the SVC. However, caution must be exercised to avoid dehydration.28

Nursing Management The primary nursing goals are to identify patients at risk for developing SVC syndrome, to recognize the syndrome if it does occur, and to relieve dyspnea and other symptoms. Reduction of anxiety is another important nursing goal. The patient and family may experience significant distress not only because of physical symptoms experienced. but also because of an altered physical appearance, including a ruddy, swollen, distorted face and neck. The nurse monitors the patient for side effects of treatment and provides symptom management. For example, if the patient is receiving radiation therapy, be alert for signs of dyspnea (which may indicate presence of tracheal edema), pneumonitis, dysphagia, pharyngitis, esophagitis, leukopenia, anemia, skin changes, and fatigue. If the patient is receiving chemotherapy, be alert for signs of stomatitis, nausea and vomiting, fatigue, leukopenia, anemia, and thrombocytopenia. If the patient is receiving steroid therapy, educate the patient and family about the potential for developing proximal muscle weakness, mood swings, insomnia, oral candida, and hyperglycemia. Aspects of palliative nursing care that are always of primary importance are: early recognition and management of symptoms, educating the patient and

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family about these symptoms and what to report, and providing reassurance that these symptoms, if they occur, will be controlled.

o]o]o] PLEURAL EFFUSION 9= CASE STUDY Mr. D, A Patient with Pancreatic Cancer Mr. D, a 46-year-old father of three, was diagnosed with pancreatic cancer six months ago, and the disease has progressed in spite of surgery and multiple regimens of chemotherapy. He has bone and lung metastases. He presents to the emergency room with progressive dyspnea and some chest pain. He says, “I’ve been getting more shortwinded the past couple weeks, mainly when I would walk for longer distances at first, but it’s gotten so bad that I can barely go to the bathroom without losing my breath. I have to prop my head up on three pillows at night to get some sleep. My chest hurts a little, too. I feel terrible. I’m sure it’s the cancer’s fault and I know it can’t be cured, but can you help me feel better?” Examination reveals decreased breath sounds on the right base, dullness to percussion, as well as decreased tactile fremitus. He is tachypneic with a respiratory rate of 32 and he is also splinting. ◆ ◆ ◆

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Key Points The treatment of pleural eff usion is palliative and symptomatic. The treatment approach depends on clinical circumstances, the patient’s general condition, and nearness to death. Preemptive pain management is a critical nursing function when patients undergo invasive procedures.

o] Definition Pleural eff usion is defined as a disparity between secretion and absorption of fluid in the pleural space secondary to increased secretion, impaired absorption, or both, resulting in excessive fluid collection.29–32

Epidemiology More than 150,000 pleural eff usions (PE) are diagnosed each year in the United States.32 Parapneumonic disease is the most common cause of pleural eff usions, followed by malignant disease. Breast, ovarian, and lung cancer plus lymphomas account for over 75 of all malignant pleural eff usions (MPE),34 followed by ovarian cancer and gastric cancer, in order of descending frequency.35 Almost half of patients with metastatic disease will experience a pleural eff usion sometime during the course of their disease.36–40 Pleural eff usions occur in 7 to 27 of hospitalized human immunodeficiency virus (HIV) patients.41 The three

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leading causes of PE in those with HIV disease are parapneumonic infection, pulmonary Kaposi’s sarcoma (KS), and tuberculosis.42–44 The overall mortality rate associated with pleural eff usion in HIV patients is 10 to 40.44 Unfortunately, the presence of malignant pleural eff usion is usually associated with widespread disease and poor clinical prognosis, particularly in those with malignancy or AIDS. The overall mean survival for cancer patients who have MPE is 4 to 12 months.34,45,46 Lung cancer patients usually die within 2 to 3 months, breast cancer patients within 7 to 15 months, and ovarian cancer patients within 9 months.47–49 The mean survival period of those with pulmonary KS and MPE is 2 to 10 months; for those who have lymphoma and MPE, it is about 9 months.50–52 Nearly all patients who have malignant pleural eff usion are appropriate candidates for hospice care.47

Pathophysiology Each lung is covered with a serous membrane called the pleura. A closed cavity is located between the pleura and the surface of each lung, called the pleural cavity. Under normal circumstances, it is bathed with 10 to 120 mL of almost protein-free fluid that continuously flows across the pleural membrane. The fluid moves from the systemic circulation into the pleural cavity and then into the pulmonary circulation.53 Osmotic and hydrostatic pressure act to ensure that equilibrium is maintained between absorption and production of fluid in the pleural space. When this equilibrium is disturbed, fluid can accumulate in the pleural cavity.54–56 A number of factors may disturb this equilibrium: (1) metastatic implants or inflammation that cause increased hydrostatic pressure in pulmonary circulation; (2) inflammatory processes that increase capillary permeability and increase oncotic fluid pressure in the pleural space; (3) hypoalbuminemia that decreases systemic oncotic pressure; (4) tumor obstruction or lung damage that creates increased negative intrapleural pressure; (5) impaired absorption of lymph when channels are blocked by tumor; and (6) increased vascular permeability caused by growth factors expressed by tumor cells.29–31,57,58 Patients with large pleural eff usions have demonstrated left-ventricular diastolic collapse and cardiac tamponade, which resolved with thoracentesis.59,60

Diagnostic Procedures A chest x-ray will usually establish the presence of the pleural eff usion, and should also differentiate the presence of free versus loculated pleural fluid.61 CT can show pleural or lung masses, adenopathy, pulmonary abnormalities such as infi ltrates or atelectasis, or distant disease.62–64 Chest ultrasound may differentiate between pleural fluid and pleural-thickening disease.65,66 In some cases, once evidence of the eff usion has been established and obvious nonmalignant causes have been ruled out, a diagnostic thoracentesis may be helpful in establishing the

diagnosis. Sonographic guidance can avoid problems associated with performing “blind” thoracentesis.32

Signs and Symptoms Dyspnea is the most common symptom of pleural eff usion and occurs in about 75 of patients.32,33,35–37,67 Its onset may be insidious or abrupt, and depends on how rapidly the fluid accumulates.47 It is almost always related to collapse of the lung from the increase of pleural fluid pressure on the lung.57 The patient’s inability to expand the lung leads initially to complaints of exertional dyspnea. As the eff usion increases in volume, resting dyspnea, orthopnea, and tachypnea develop. The patient may complain of a dry, nonproductive cough, and an aching pain or heaviness in the chest. Pain is often described as dull or pleuritic in character.68 Generalized systemic symptoms associated with advanced disease may also be present: malaise, anorexia, and fatigue.30,34,66 Physical examination reveals the presence of dullness to percussion of the affected hemithorax, decreased breath sounds, egophony, decreased vocal fremitus, whispered pectoriloquy, and decreased or no diaphragmatic excursion.30,69,70 A large eff usion may cause mediastinal shift to the side of the eff usion; tracheal deviation may be present. Cyanosis and plethora, a ruddy facial complexion that occurs with partial caval obstruction, may also be present.30,70

Medical and Nursing Management Overall medical management of malignant pleural eff usion depends on multiple factors, including the history of the primary tumor, prior patient history and response to therapy, extent of disease and overall medical condition, goals of care, and severity of symptom distress. In some cases, systemic therapy, hormonal therapy, or mediastinal radiation therapy may provide control of pleural eff usions.64 Symptomatic management of symptoms with pharmacotherapy includes the use of opioids to manage both pain and dyspnea, as well as anxiolytics to control concomitant anxiety.32 If the patient is to have a chest tube placed, or other invasive procedures to drain the fluid or to prevent fluid reaccumulation, the nurse must aggressively manage the patient’s pain and anxiety. Educating the patient about what to expect, being present during the procedure, and medicating the patient preemptively are important aspects of palliative nursing care. Use of patient-controlled analgesia (PCA) for pain management is appropriate. Unfortunately, pain assessment and management is frequently not recognized as a priority when patients undergo these procedures.

Thoracentesis Alone Thoracentesis has been shown to relieve dyspnea associated with large pleural eff usions.64 When thoracentesis is undertaken, relief of symptoms may rapidly occur, but fluid reaccumulates quickly, usually within 3 to 4 days, and in 97 of

Urgent Syndromes at the End of Life patients within 30 days.71 The decision to perform repeated thoracenteses should be tempered by the knowledge that risks include empyema, pneumothorax, trapped lung from inadequate drainage and/or loculated fluid, and the possibility of increasing malnutrition as a result of the removal of large amounts of protein-rich eff usion fluid.57 Repeated thoracenteses rarely provide lasting control of malignant eff usions.72–74 There are no studies that compare repeated thoracenteses to other management approaches.2 Instead of a second thoracentesis, a thoracostomy with pleurodesis should be considered.47 It can be used to reduce adhesions, draw off fluid, and initiate drainage, all at the same time.

Tube Thoracostomy and Pleurodesis Palliative treatment, especially for those with a life expectancy of months rather than weeks, is best accomplished by performing closed-tube thoracoscopy, using imaging guidance with smaller bore tubes.47 The goal of this therapy is to drain the pleural cavity completely, expand the lung fully, and then to instill the chemical agent into the pleural cavity. However, if there is a large eff usion, only 1000 mL to 1500 mL should be drained initially.47 Too-rapid drainage of a large volume of fluid can cause reexpansion pulmonary edema, and some patients have developed large hydropneumothoraces following rapid evacuation of fluid.47 The thoracoscopy tube should then be clamped for 30 to 60 minutes. Approximately 1000 mL can be drained every hour until the chest is completely empty, but a slow rate of drainage is recommended.64,75 The chest tube is then connected to a closed-drainage device. To prevent reexpansion pulmonary edema, water-seal drainage alone and intermittent tube clamping should be used to allow fluid to drain slowly. Complications of chest tube placement include bleeding and development of pneumothorax, which occurs when fluid is rapidly removed in patients who have an underlying noncompliant lung. Patients who have chest tubes inserted should receive intrapleural bupivacaine or epidural and intravenous (IV) conscious sedation, as the procedure can be moderately to severely painful.74,76–81

Pleurodesis Chest radiography is used to monitor the position of the thoracostomy tube after thoracostomy is completed. It is thought that tube irritation of the pleural cavity may encourage loculations, which can lessen the effectiveness of potential sclerosing agents.57 Current evidence indicates that it is not necessary to wait for drainage to fall below a certain level, and that the sclerosing agent can be injected as soon as the lung is fully reexpanded.76 If the lung fails to expand and there is no evidence of obstruction or noncompliant lung, additional chest tube placement may be considered. Fibrinolysis with urokinase or streptokinase may improve drainage in those cases where fluid is still present or is thick

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or gelatinous.82 Intrapleural instillation of urokinase 100,000 units in 100-mL 0.9 saline can be attempted, and the chest tube clamped for 6 hours, with suction then being resumed for 24 hours. Once the pleural fluid has been drained and the lung is fully expanded, pleurodesis may be initiated. This can usually take place the day after chest tube insertion.36,74,83–85 The purpose of pleurodesis is to administer agents that cause inflammation and subsequent fibrosis into the pleural cavity to produce long-term adhesion of the visceral and parietal pleural surfaces. The goal of this procedure is to prevent reaccumulation of pleural fluid.35,72 Various sclerosing agents are used to treat MPE. They include bleomycin, doxycycline, and sterilized asbestos-free talc. There is some research indicating that talc should be the agent of choice based on its success rate in preventing recurrence, and overall effectiveness.34,86

Pleuroperitoneal Shunt This procedure is useful for patients who have refractory MPE despite sclerotherapy.29,72,73,87–89 Two catheters are connected by a pump to a chamber between the pleural cavity and the peritoneal cavity. Manually pushing the pumping chamber moves fluid from the pleural cavity to the peritoneal cavity. Releasing the compression moves the fluid from the pleural cavity into the chamber. The major advantage of this device is that it can be used on an outpatient basis and allows the patient to remain at home. Its disadvantages include obstruction risk, infection, and tumor seeding; general anesthesia is needed for placement, and the device requires motivation and ability on the part of the patient to operate it. Most patients with advanced disease are unable to physically overcome the positive peritoneal pressure required to pump the device. Pumping is required hundreds of times a day, and therefore this device is not likely to be useful in those who are close to death.90

Pleurectomy Surgical stripping of the parietal pleura, with or without lung decortication (if the underlying lung is trapped), is more than 90 effective, but it has a high complication rate67,72 and should be reserved for only those who have a reasonable life expectancy and physical reserve to withstand surgery.29,32 Video-assisted thoracoscopy (VATS) and pleurectomy have been performed successfully in small, selected groups of patients.91 However, it is likely to be an inappropriate choice in the palliative care patient at end of life.

Indwelling Pleural Catheters Indwelling pleural catheters can be placed under local anesthesia.34 Those who meet criteria for ambulatory therapy— that is, those with symptomatic, unilateral eff usions, and who have a reasonable performance status—may benefit from this therapy. It has been suggested that tunneled pleural catheters may permit long-term drainage and control of MPE in more

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than 80 to 90 of patients.36,92 These catheters can be used to treat trapped lungs and large locules. Spontaneous pleurodesis eventually occurred in over 40 of catheter insertions (103 out of 240) in one study.93 Small-bore tubes attached to gravity drainage bags or vacuum drainage have been reported to be successful on an outpatient basis.47 Rare complications include tumor seeding, obstruction, infection, cellulitis of tract site, and pain during drainage. If spontaneous pleurodesis does not occur, then continuing drainage may present management challenges. This treatment offers the potential for better quality of life and reduction in overall health care costs.

the oncology clinic for follow-up, and during the nurse’s assessment he mentions, “I’ve been gradually getting more short of breath recently, especially when I lie down at night. My chest has been feeling a little uncomfortable, too. It may not be anything, but I thought I would mention it.” On exam, his lungs are clear to ausculation and percussion, but his heart sounds seem to be a little muffled. ◆ ◆

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Subcutaneous Access Ports ◆

In this procedure a fenestrated catheter is placed in the pleural cavity. It can be accessed for repeated drainage without risk of pneumothorax or hemothorax.47 Complications include occlusion, kinking, and wound infection.

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Key Points Malignant pericardial eff usions occur in less than 5 of patients with cancer, but the incidence may be nearer to 20 in patients with lung cancer. Eff usions usually develop in patients with advanced disease and are usually a poor prognostic sign. The clinical features depend on the volume of pericardial fluid, the rate of accumulation of fluid, and the underlying cardiac function. Dyspnea is the most common presenting symptom.

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Nursing Management

Definition

Dyspnea and anxiety are primary symptoms experienced by the patient who has a pleural eff usion. When invasive diagnostic procedures are being considered, these choices should be guided by the stage of disease, prognosis, the risk/benefit ratio of tests or interventions, pain-management considerations, and the desires of the patient and family.94 The nurse can educate the patient and family about each procedure, including its purpose, how it is carried out, how pain will be addressed, and possible side effects or complications that may occur. This not only allows for informed consent but also may help to reduce anxiety and thus decrease dyspnea.94 A variety of nonpharmacological techniques can relieve the patient’s dyspnea and pain, and can be used in combination with opioids and anxiolytics, as well as concurrently with medical treatment. These approaches include positioning the patient to comfort, using relaxation techniques, and providing oxygenation as appropriate.94 Aggressive pain assessment and monitoring are particularly important for patients who receive invasive procedures.

A pericardial effusion is defined as an abnormal accumulation of fluid or tumor in the pericardial sac.95 Pericardial effusions can lead to life-threatening sequelae. They can be caused by malignancies and their treatment, and by nonmalignant conditions. Pericardial effusions can lead to cardiac tamponade, which, if not treated, will cause cardiovascular collapse and death.95

o]o]o] PERICARDIAL EFFUSION 9= CASE STUDY Mr. F, A Patient with Lymphoma Mr. F, a 62-year-old retired dentist, has undergone multiple rounds of chemotherapy for lymphoma and he has recently received experimental chemotherapy since he has not responded significantly to any other treatments. He realizes that all treatment is palliative at this point, and has already elected to have a DNR/DNI code status. He comes in to

Epidemiology Malignant disease is the most common cause of pericardial eff usions.96 Pericardial eff usion is most commonly associated with lung and breast cancer, leukemia, and lymphoma.96 Twenty-five percent to 50 of all patients who require surgical pericardial drainage have malignant pericardial involvement.96 Metastatic spread or local extension from esophageal tumors and from sarcomas, melanomas, and liver, gastric, and pancreatic cancers can also occur.97–100 Many pericardial eff usions are asymptomatic and are discovered only on autopsy.101 Up to 40 of cancer patients who have a symptomatic pericardial eff usion will have a benign cause of the eff usion.57 Nonmalignant causes of pericardial eff usions include pericarditis, congestive heart failure, uremia, myocardial infarction, and autoimmune disease, such as systemic lupus erythematosus. Other causes are infections, fungi, virus, tuberculosis, hypothyroidism, renal and hepatic failure, hypoalbuminemia, chest trauma, aneurysm, and complications of angiographic and central venous catheter procedures.102,103 A treatment-related cause of pericardial eff usion is radiation therapy to the mediastinal area of more than 4000 cGy, which can lead to pericarditis and possible cardiac tamponade.99,104,105 The anthracycline-based chemotherapies, such as doxorubicin, can also cause pericardial eff usions.106

Urgent Syndromes at the End of Life

Pathophysiology The heart is covered by a thin sac called the pericardium. There are usually 15 to 50 mL of fluid between the pericardium and the heart itself.57 Pericardial fluid originates in lymphatic channels surrounding the heart and is reabsorbed and drained by the lymph system into the mediastinum and into the right side of the heart.10,11 This fluid minimizes friction, provides a barrier against inflammation, supports the chambers of the heart, and maintains the heart’s position in the chest against accelerational and gravitational forces.107–110 A pericardial eff usion occurs when there is excessive fluid in this space. This fluid causes increased pressure to build in the pericardial sac, and the heart cannot fi ll or pump adequately. A pericardial eff usion refers to the increased fluid or tumor in the pericardial sac. Cardiac tamponade is the physiological hemodynamic response of the heart to the eff usion.9 Malignancies can cause eff usions in the pericardial space by: (1) blocking lymph and blood drainage and preventing their resorption, (2) producing excess fluid in the space, (3) bleeding into the space, and (4) growing tumor into the space. The pericardial sac can hold up to 1800 mL of fluid before the heart begins to decompensate.111,112 Thus, volume of fluid and distensibility will affect the impact of eff usion on intrapericardial pressure. Cardiac tamponade occurs when the heart cannot beat effectively because of excess pressure being exerted on its muscle.99,102 As the pressure of fluid in the pericardial sac increases, the heart chambers are compressed. First, the right side of the heart, including the right atrium and right ventricle, is compressed. Less blood volume returns to the right side of the heart, thus increasing venous pressure. As the ventricles are further compressed, the heart cannot fi ll adequately, which leads to decreased stroke volume and cardiac output, and poor perfusion throughout the body. The body attempts to compensate by activating the adrenergic nervous system to keep the heart stimulated and its chambers filled with circulating blood volume. Heart rate increases, veins constrict, and the kidneys increase sodium and fluid retention. The heart ultimately is overwhelmed due to increased fluid, decreased fi lling, and decreased cardiac output, which leads to hypotension and circulatory collapse.10,110,111 Pericardial eff usion can develop gradually over a period of weeks or months. The pericardium becomes more compliant, stretching to accommodate as much as 2 liters or more of fluid, with minimal effect on pericardial pressure. This is known as the “stress relaxation” phenomenon. Unfortunately, patients with chronic pericardial eff usions may not exhibit physical signs of cardiac tamponade until compression of the heart and surrounding structures occurs, leading to sudden, life-threatening cardiac decompensation.113–115

Signs and Symptoms Pericardial tamponade that results from metastatic disease has a gradual onset that may be chronic and insidious.9,107,114

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Vague symptoms may be reported. Early in the decompensation process it may be difficult to differentiate symptoms of cardiac dysfunction from the effects seen in advancing cancer. The severity of symptoms is related to volume of the eff usion, rate of accumulation, and the patient’s underlying cardiac function.10,99,111,116 Generally, rapid accumulation of fluid is associated with more severe cardiac tamponade. The most powerful predictor of the development of cardiac tamponade is the size of the pericardial eff usion.117 Dyspnea is the most common presenting symptom.118,119 The patient may complain of the inability to catch his or her breath, which progresses from dyspnea on exertion to dyspnea at rest. In advanced stages, the individual may be able to speak only one word at a time. Chest heaviness, cough, and weakness are also symptoms.57 Pressure on adjacent structures, that is, the esophagus, trachea, and lung may increase.120 Tachycardia occurs as a response to decrease in cardiac output. A narrowing pulse pressure (difference between systolic and diastolic blood pressure) may be seen when blood backs up in the venous system, causing the systolic blood pressure to decrease and the diastolic blood pressure to increase.9,120 Compression of the mediastinal nerves may lead to cough, dysphagia, hoarseness, or hiccups.11 Increased venous pressure in the chest may lead to gastrointestinal (GI) complaints, such as nausea.121,122 Retrosternal chest pain that increases when the patient is supine and decreases when he is leaning forward may occur, but is often not present.110,120 Engorged neck veins, hepatomegaly, edema, and increased diastolic blood pressure are late signs of effusion. Anxiety, confusion, restlessness, dizziness, lightheadedness, and agitation related to hypoxemia may be present as the process progresses.10,13,99,110,118,123 Poor cardiac output will lead to complaints of fatigue and weakness. As the eff usion increases and the heart begins to fail, symptoms worsen and dyspnea and orthopnea progress. Increasing venous congestion leads to peripheral edema. As cerebral perfusion worsens and hypoxemia increases, confusion increases. Ultimately, there is cardiovascular collapse, anuria, and decreased tissue perfusion, which causes obtundation, coma, and death.10 Patients with chronic symptomatic pericardial eff usions will often exhibit tachycardia, jugular venous distension, hepatomegaly, and peripheral edema.120 When examining the patient, one should listen for early signs of cardiac tamponade: (1) muffled heart sounds and perhaps a positional pericardial friction rub, and weak apical pulse; (2) presence of a compensatory tachycardia; (3) abdominal venous congestion and possible peripheral edema; and (4) a fever.13,110,118,120,124 The signs and symptoms of pericardial effusion and cardiac tamponade may be mistaken for those of other pulmonary complications or pleural effusions. Many cancer patients have both pleural and pericardial effusions.110,118 Unfortunately, symptoms of cardiac tamponade may be the first indication of the presence of pericardial effusion. The triad of hypotension, increased jugular venous pressure, and quiet heart sounds that are diagnostic for pericardial

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eff usion occurs in less than a third of patients.125 If clear lung fields are present, this can help the clinician differentiate between pericardial eff usion and congestive heart failure.125 Pulsus paradoxus is a cardinal sign of cardiac tamponade. It occurs in 77 of those with acute tamponade and in only about 30 of those with chronic pericardial effusion.114,125 However, its absence does not rule out pericardial effusion. Pulsus paradoxus is a fall in systolic blood pressure of greater than 10 mmHg with inspiration. Normally, blood pressure lowers on inspiration, but when the heart is compressed it receives even less blood flow. The resulting lowered volume and output result in a greater decrease in blood pressure.110,121,126 Hepatojugular reflux is a late sign of cardiac tamponade.10,123 Late in the process of deterioration, diaphoresis and cyanosis are also present. The patient develops increasing ascites, hepatomegaly, peripheral edema, and central venous pressure. Decreased renal flow progresses to anuria. Further impairment in tissue perfusion leads to loss of consciousness, obtundation, coma, and death.9,10,13,99,110,118

pericardioperitoneal shunt, tunneled pericardial catheters, radiation therapy and chemotherapy, and aggressive symptom management without invasive procedures.

Pericardiocentesis The most simple, safe, and effective (97) treatment is echocardiography-guided pericardiocentesis, with a procedural morbidity of 2 to 4 and mortality of 0.127–130 Since more than 50 of pericardial eff usions reoccur, it is recommended that a 60-cm pigtail catheter (6 to 8 French) be threaded over the needle to allow for drainage of fluid over time.120,127,131 The procedure can be performed emergently at the bedside, blindly, or with ECG guidance, but it should not be attempted in this manner except in extreme emergencies.132 Adverse complications of the blind procedure include myocardial laceration, myocardial “stunning,” arrhythmias, pneumothorax, abscess, and infection.95,133 The failure rate of this procedure is 10 to 20 because of posterior pericardial loculation or catheter obstruction.

Diagnostic Procedures Pericardial Sclerosis Initially, a standard chest x-ray is likely to show a change in the size or contour of the heart and clear lung fields.57 A pleural eff usion may be evident in up to 70 of patients. Chest x-ray can also demonstrate mediastinal widening or hilar adenopathy. This diagnostic tool is cost-effective, minimally invasive, readily available, and may detect tamponade before the patient becomes symptomatic. However, when used alone, it is not specific enough to diagnose pericardial eff usions and does not indicate the level of heart decompensation.10,121 2-D echocardiogram (2-D echo) is the most sensitive and precise test to determine if pericardial eff usion or cardiac tamponade is present.118 It can be used at the bedside and is noninvasive. Some cancer patients may have both pericardial eff usions and pleural eff usions.110,118 Pleural eff usions can mimic the signs and symptoms of pericardial tamponade, causing symptoms of dyspnea and respiratory distress. Chest x-ray may hide or mimic the presence of pericardial tamponade, so depending on the goals of care, a 2D-echo should be performed to differentiate between these phenomena and to detect decompensation of the heart. Other tests, including MRI and CT, can be used to detect effusions, pericardial masses and thickening, and cardiac tamponade. However, these tests do not indicate how well the heart is functioning, and they have limited use due to safety and comfort concerns in very ill patients.118,120 If echocardiography is not available, a cardiac catheterization, which will detect depressed cardiac output and pressure levels in all four chambers of the heart, may be considered on a case-by-case basis.120

Patients who experience pericardial tamponade face a 50 rate of recurrence when the underlying disease is not effectively treatable.120 Pericardial sclerosis should be considered in those patients whose disease is not being actively or effectively treated. Pericardial sclerosis is defined as the instilling of chemicals through an indwelling catheter into the pericardial sac for the purpose of causing inflammation and fibrosis, to prevent further fluid reaccumulation. Doxycycline and bleomycin are the most common drugs instilled into the pericardial space.126 Twentytwo patients were treated with bleomycin in one study, 95 of them successfully.134 A common side effect of sclerosing therapy is severe retrosternal chest pain, especially with talc administration, and sometimes with bleomycin therapy.126 A preemptive pain management plan is essential for the well-being of the patient. Arrhythmias, catheter occlusion, and transient fever of up to 38ºC without associated bacteremia are also associated complications, primarily of talc and bleomycin therapy.114,135,136 While sclerosing therapy may initially be “successful,” that is, with evidence of disappearance of effusion or absence of tamponade symptoms for more than 30 days, multiple instillations may be necessary for true success.120 The use of thiotepa has been recommended for pericardial instillation because it can be instilled into the drained space, is not associated with severe pain, and is reasonably effective.126 A major complication is pericardial constriction. A serious discussion of risks, benefits, side effects of the therapy, and its impact on quality of life should take place in the context of end-of-life decision-making.

Medical and Nursing Management

Percutaneous Balloon Pericardiotomy

Options for medical management include pericardiocentesis with or without catheter drainage, pericardial sclerosis, percutaneous balloon pericardiotomy, pericardiectomy,

This is a safe, nonsurgical method that can be used to relieve the symptoms of chronic recurrent pericardial effusions.120 It is performed in a cardiac catheterization lab under fluoroscopic

Urgent Syndromes at the End of Life guidance using IV conscious sedation and local anesthesia. A guidewire is inserted into the pericardial space, and a small pigtail catheter is inserted over the wire. The wire is removed and some pericardial fluid is withdrawn. Next, the pigtail catheter is removed and replaced with a balloon-dilating catheter that is advanced into the pericardial space and inflated. A pericardial drainage catheter is left in place and is removed when there is less than 100 mL of drainage daily.137 Patients have reported experiencing severe pain during and after this procedure. A plan for aggressive pain management must be in place before this procedure and rapidly implemented if pain occurs. Fever and pneumothorax are the most common complications.137 Pleural eff usion has also been associated with the procedure. It is suggested that percutaneous balloon pericardiotomy can be used in place of surgical drainage in patients with malignancy and a short life expectancy.138

Surgical Pericardiectomy Another option is to surgically create a pericardial “window” (partial pericardiectomy), a small opening in the pericardium and suture it to the lung. This allows pericardial fluid to drain out of the pericardial cavity, especially loculated eff usions.126 One study observed a 6.4 morbidity and 2.1 mortality rate after pericardial window surgery as the definitive method of treatment for malignant pericardial eff usion.139 When other procedures fail and the patient is expected to have long-term survival and good quality of life, partial or complete pericardiectomy may be considered.120

Video-Assisted Thoracoscopic Surgery Video-assisted thoracoscopic surgery (VATS), a minimally invasive procedure, can be used to manage chronic pericardial eff usions. In this case, a thoracoscope is introduced into the left or right chest and a pericardial window is performed under thoracoscopic vision.139,140 The pleura and pericardium can be visualized, tissue diagnosis can be obtained, and loculated eff usions can be drained.141 It has a 100 long-term success rate, and there is no significant morbidity or mortality associated with its use.120

Radiation Therapy and Chemotherapy In some cases, radiation therapy can be used to treat chronic eff usions after the pericardial eff usion has been drained,120 and when tamponade is not present. It can be effective in radiosensitive tumors such as leukemias and lymphomas, but is less so in solid tumors.114 Systemic chemotherapy can be considered if the malignancy is chemotherapy sensitive.119 Chronic pericardial eff usions and their management can be challenging. Treatment of symptomatic chronic pericardial eff usions will depend on patient prognosis, extent of symptoms, presence of concurrent medical conditions, and general condition. In many cases, treatment may be planned and carried out in a less urgent manner, keeping in mind the

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long-term benefits and side effects of interventions. Optimal treatment should focus on relieving symptoms caused by pressure on adjacent structures and, in the case of underlying malignancy, the first priority should be the promotion of comfort. When choosing a plan, the ability to treat the underlying cause, the long-term prognosis, and patient comfort should be of greatest importance.120

Nursing Management The priority goals in managing this condition are to provide comfort, to promote pain relief, and to reduce anxiety. The nurse should know both early and late signs of cardiac tamponade. Early recognition of these signs and their implications is most important because early intervention may prevent life-threatening sequelae.9 Aggressive symptom management includes the administration of opioids and anxiolytics to reduce pain and anxiety. If invasive cardiac procedures are carried out in an emergency at the bedside, the nurse should be present to provide support to the patient and family, to control pain and anxiety, and to monitor vital signs as indicated.9

o]o]o] HEMOPTYSIS 9= CASE STUDY Mrs. B, A Patient with Non-Small Cell Lung Cancer Mrs. B, a 67-year-old retired widow without children, was diagnosed with non-small cell lung cancer nine months ago and the disease has progressed rapidly in recent weeks despite aggressive treatment. She has recently started complaining of more dyspnea as well as some hemoptysis, but she has been reluctant to talk to her oncologist because she is afraid of what this may mean. The hemoptysis has been getting gradually worse and she finally goes to the emergency room. A CT scan reveals that a tumor appears to be eroding into an intrapleural vessel. The ER physician briefly tells her the CT scan results but instructs her to see her oncologist for further discussion. She asks the nurse taking care of her, “What does this mean? What’s going to happen to me? I’m home alone most of the time and afraid . . . .what happens if the bleeding gets worse?” ◆ ◆

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Key Points Hemoptysis occurs commonly in patients with advanced cancer and is most commonly due to malignant infiltration or infection. Hemoptysis should be distinguished from gastrointestinal and nasopharyngeal bleeding. Hemoptysis frequently provokes considerable anxiety. Massive hemoptysis, while rare, is a life-threatening crisis for patient, family, and staff. Massive hemoptysis occurs in fewer than 5 of cases, but the mortality rate is 85 if surgery is not feasible.

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Skilled palliative nursing intervention includes provision of 24-hour psychological support and guidance.

o] Definition Hemoptysis is defined as blood that is expectorated from the lower respiratory tract. Hemoptysis can be classified according to the amount of blood expectorated: (1) mild—less than 15 to 20 mL in a 24-hour period; (2) moderate—greater than 15 to 20 mL but less than 200 mL in a 24-hour period; and (3) massive—greater than 200 mL to 600 mL in a 24-hour period.142 The primary risk to the patient is asphyxiation from blood-clot formation obstructing the airway, rather than from exsanguination. Massive hemoptysis carries a high mortality rate if not treated.

these vessels are damaged by inflammation, malignancy, or other injury, blood flow is increased and this raises pulmonary vascular pressure. Hemoptysis occurs in the setting of multiple collateral vessels, high vascular pressure, and damaged, enlarged, and diseased airways.146,150,151 In patients who have HIV disease, bacterial pneumonia and infections cause 63 of episodes of hemoptysis. Kaposi’s sarcoma causes 10 of episodes, and pulmonary embolism causes 4 of episodes.152 Patients on anticoagulant or thrombolytic therapy may also experience hemoptysis.149,153

Diagnostic Procedures

Tuberculosis is the most common worldwide cause of hemoptysis.143 The most common causes of hemoptysis in the United States are bronchitis, bronchiectasis, and bronchogenic carcinoma.143 Other nonmalignant causes of hemoptysis are lung abscess, sarcoidosis, mycobacterium invasion, emphysema, fungal diseases, and AIDS. There is no underlying cause found in 15 to 30 of hemoptic episodes.143–145 Metastatic lung disease caused by other primary tumors is associated with nonfatal hemoptysis.146 Tumors in the trachea usually cause obstructive symptoms rather than massive bleeding.147 Massive hemoptysis occurs in fewer than 5 of cases, but the mortality rate is 85 if surgery is not feasible.148,149 Bleeding occurs most often from proximal endobronchial tumors that are not amenable to surgical intervention. Prognosis is usually grim in the case of endstage lung disease and in the setting of massive hemoptysis.

Flexible fiberoptic bronchoscopy is initially the quickest and surest way to visualize the source of bleeding in the upper lung lobes and to localize it in the lower respiratory tract.143 This procedure can be done at the bedside without putting the patient under general anesthesia, and it can also visualize distal airways.146 If there is brisk bleeding, the rigid bronchoscope can suction more efficiently, remove clots and foreign bodies, allow for better airway control, and can be used to obtain material for diagnostic purposes.154 In some cases, bronchoscopy may locate the area of bleeding but not the direct source of bleeding. In this case, the segment of affected tissue may be purposely suctioned until it collapses.43 Bronchoscopy should not be undertaken if there is evidence of pulmonary embolism, pneumonia, or bronchitis, or when the patient’s condition is so poor or unstable that no further intervention would be undertaken no matter what the results.151 If treatment is to be initiated, the combination of bronchoscopy and high-resolution CT can identify the cause of hemoptysis in 81 of patients. It is also quick, noninvasive, and less costly than other modalities.143 If pulmonary embolism is suspected and therapy is to be initiated, a ventilationperfusion scan may be warranted.155

Pathophysiology

Signs and Symptoms

Each lung is supplied with blood by way of two circulatory systems. Pulmonary circulation delivers blood under low pressure from the right ventricle to the alveolar capillaries, where oxygen and carbon dioxide are exchanged. Bronchial circulation arises from the systemic circulation that branches off the aorta, which delivers blood to the lungs under high pressure. These systems anastomose in precapillary pulmonary arterioles and pulmonary veins.146 The bronchial venous system returns blood to the heart by two pathways: (1) blood is returned to the right atrium by way of the azygous, hemiazygous, or intercostal veins, and (2) blood is returned to the left ventricle by way of the pulmonary veins. The second pathway carries the bulk of bronchial venous return to the heart.146 In the setting of inflammation, tumor, or infection, the bronchial vasculature develops new vascularization pathways. Bronchial blood flow increases as the result of increases in both size and number of these collateral vessels. When

Respiratory complaints that raise suspicion of bleeding into the lungs may include cough, dyspnea, wheezing, chest pain, sputum expectoration, and systemic clues, such as fever, night sweats, and weight loss. Clues to nasopharyngeal bleeding as the possible source include frequent nosebleeds, throat pain, tongue or mouth lesions, dysphonia, and hoarseness.156 Clues to GI bleeding as the possible source include the presence of dyspepsia, heartburn, and/or dysphagia. Coffee-grounds-colored vomitus and blood in vomitus does not rule out hemoptysis, because blood from respiratory sources can be swallowed. Patients and family members should be asked to describe the color of blood, and should be asked about any changes in color and pattern of bleeding in vomitus and stool.156 During an active bleeding episode, a focused examination should be performed as quickly as possible. If possible, the nasopharynx, larynx, and upper airways should be thoroughly visually examined to rule out an upper airway source of bleeding.143,154,156 If bleeding is brisk and views are obstructed,

Epidemiology

Urgent Syndromes at the End of Life examination may best be accomplished with bronchoscopy. The patient may be coughing or vomiting blood, and may be short of breath. If possible, sputum, blood and vomitus should be examined.143,151 Some patients may not yet have a diagnosis of malignancy. In these cases one should note clubbing of fingernails and presence of cervical or supraclavicular adenopathy. This may indicate the presence of a malignancy.156 Massive bleeding may take place in the lung without the presence of hemoptysis, so listening to lung sounds is very important. Auscultation of the lungs may reveal localized wheezing, an indication of possible airway obstruction.156 Fine diff use rales and asymmetric chest excursion may indicate the presence of an infectious or consolidative process.156 If petechiae and ecchymosis are present, then there should be strong suspicion that a bleeding diathesis is present.156

Medical and Nursing Management If the episode of bleeding is severe and the goal is active treatment or prolongation of life, then the primary focus is to maintain an adequate airway. This will usually require endotracheal intubation, which may have to be performed immediately at the bedside, and oxygenation. If bleeding can be localized and controlled quickly, a short period of intubation may be considered if it will allow for improved quality of life.146 Specific methods of treatment include radiation therapy, laser coagulation therapy, bronchial arterial embolization, endobronchial balloon tamponade, epinephrine injection, iced saline lavage, and, in very rare cases, surgical resection. Radiation Therapy External-beam radiation therapy can stop hemoptysis in more than 80 of cases, especially in those patients who have unresectable lung cancers.157,158 The goal is to provide therapy in the shortest time period possible, at the lowest dose to achieve symptom control while minimizing side effects. Complications of therapy are radiation fibrosis, and, unfortunately, massive hemoptysis.159 Endobronchial brachytherapy has been effective in some patients who have failed previous external-beam radiation attempts.160 Brachytherapy and bronchoscopy laser therapy have also resulted in resolution of hemoptysis. Results have not been as favorable in patients who have failed previous external-beam radiation therapy, or when combined with laser therapy.161 Side effects associated with brachytherapy, particularly high-dose brachytherapy, include mucositis, fistula formation, and fatal hemoptysis.162,163 The benefits of this treatment should be carefully weighed against potential side effects and their impact on quality of life, particularly in those patients who have short-term prognoses. Endobronchial Tamponade In this procedure, flexible bronchoscopy is used to find the bleeding site after the site has been lavaged with iced saline.

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A balloon catheter attached to the tip of the bronchoscope is placed on the site and is then inflated and left on the bleeding site for 24 to 48 hours.164 In the case of life-threatening hemoptysis, a rigid bronchoscope should be used. This is not a uniformly successful procedure, and should be considered a temporizing measure only.143 A different approach to endobronchial tamponade that was recently utilized involved the placement of two self-expanding bronchial stents which stopped the bleeding permanently and allowed the patient to be extubated and continue treatment.165 Laser Coagulation Therapy In the case of obstructing tracheal tumors, Nd-YAG photocoagulation may control bleeding from endobronchial lesions, and it has a response rate of 60.166 Anecdotal reports of the effectiveness of electrocautery to control hemoptysis have been reported; argon plasma coagulation has led to resolution of hemoptysis for at least a 3-month followup. However, highly vascular tumors are at risk for bleeding when exposed to laser therapy.165 Bronchial Arterial Embolization When an endoscopically visualized lung cancer is the source of bleeding, bronchial artery embolization is effective as a palliative intervention. It stops bleeding in 77 to 93 of cases.154,167 Bronchial artery embolization, preceded by bronchoscopy, involves injecting a variety of agents angiographically into the bronchial artery to stop blood flow.151,168 Thirty percent of patients will rebleed within the first or later months, and repeated embolizations may be required.168,169 There are major risks associated with this procedure, including transverse myelitis, paraplegia, ischemic colitis, severe pneumonia, esophagobronchial fistula formation, and temporary severe retrosternal pain.170 Superselective catheterization now reduces the chance of inadvertently catheterizing the spinal cord branch of the bronchial artery, which has led to spinal cord paraplegia in the past.171 The risks of rebleeding and the prospect of having repeated embolizations should be carefully reviewed and discussed with the patient and family before carrying out this therapy. Endobronchial Epinephrine Injections A 1:10,000 epinephrine solution may be instilled on visualized lesions to constrict veins and reduce bleeding. Vasopressin and chlorpromazine have also been used in this procedure, which is performed in patients who are not candidates for surgery and when bronchial artery embolization is not available.143,154 Iced Saline Lavage Iced saline solution lavage has been used as a temporary nonstandard measure to provide improved visualization and localization of the bleeding site. It does not appear to improve outcomes.143,154

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Surgery In rare cases, some patients who continue to have lifethreatening hemorrhage after receiving other therapies may be considered as candidates for surgical intervention. Only those whose life expectancy, condition, ability to tolerate major surgery, and ability to maintain an airway make them suitable candidates should be considered. It is important to remember that most lung cancers are well advanced at diagnosis and that undertaking this procedure may not meet quality-of-life goals for those with short-term prognoses.143

Palliative Care When a decision has been made to forego aggressive treatment measures, then promotion of comfort for the patient is the primary goal. Death from massive hemoptysis is usually rapid, occurring within minutes. However, even when the family has been carefully “prepared” for this possibility and coached in a step-by-step manner in what to do, family members inevitably remain unprepared and distraught if a massive hemorrhage does occur, especially in the home without medical personnel around. Preemptive planning includes anxiolytic and opioids readily available in the home, a 24-hour palliative care number to call for immediate guidance and support, and dark-colored towels to reduce the visibility of blood and thus make it less overwhelming.

o]o]o] SPINAL CORD COMPRESSION 9= CASE STUDY Mrs. S, A Patient with Multiple Myeloma Mrs. S is a 73-year-old woman diagnosed with multiple myeloma two months ago. Chemotherapy has not helped so far, and she has been found to have several spinal metastases which cause mild back pain. This has been wellcontrolled by 10 mg of Oxycodone IR two or three times a day. She is admitted directly to the palliative care unit by her oncologist after she called, complaining, “I’ve been having more and more back pain the past few days, especially when I’m lying in bed at night, and the pain medicine isn’t really helping anymore, even though I’m taking it as often as I can. I’m also having this weird numbness and tingling in my legs that I’ve never had before.” On exam, Mrs. S is found to have slight weakness in both legs, but no other focal findings. ◆ ◆

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Key Points Pain is the primary presenting symptom of spinal cord compression. It may be present long before neurological dysfunction occurs. The pain is classically worse when lying flat and improved when upright.

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In a patient with cancer, increasing back pain that is worse when lying flat and improved when standing is presumed to be cord compression until proven otherwise. Early detection and treatment may prevent permanent loss of function. It is therefore considered a medical emergency. The use of steroids and radiation therapy in patients with far advanced cancer can decrease the pain and usually preserve function. Steroids alone can usually decrease pain and preserve function in those who are close to death and do not want to undergo radiation therapy, even in truncated form.

o] Definition Spinal cord compression (SCC) is compression of the thecal sac at the level of the spinal cord or cauda equina. Spinal cord injury may cause progressive and irreversible neurological damage and requires immediate intervention to prevent disability. SCC in the presence of malignancy often carries a poor prognosis, with a median life expectancy of 3 to 6 months.2,172 Prognostic factors for longer survival include: only one site of cord compression, ability to ambulate pre- and post-treatment, bone metastases only, and tumor that is responsive to radiation.172

Epidemiology Compression of the spinal cord and cauda equina is a major cause of morbidity in patients with cancer. It occurs in approximately 5 to 10 of patients with malignant disease,173,174 and is most commonly associated with metastatic disease from tumors of the breast, lung, and prostate. Less than 50 of patients will regain functional losses due to SCC.10,174–176 Compression of the spine in 85 to 90 of cases is caused by direct hematological extension of solid tumor cells into a vertebral body.150,177–180 A less common pathway is by direct extension of tumor from adjacent tissue through the intervertebral foramina. Tumor cells can also enter the epidural space directly by circulating in the cerebral spinal fluid (CSF). Paraneoplastic syndromes, leptomeningeal disease, and toxicity of chemotherapy drugs can cause spinal cord syndromes.181 Nonmalignant causes of SCC include benign tumors, degenerative, inflammatory, and infectious diseases that affect the spinal column, and from trauma, herniated disks, osteoporosis, or other structural diseases.22,181

Pathophysiology There are 26 vertebrae in the vertebral column: 7 cervical, 12 thoracic, 5 lumbar, 1 sacral, and 1 coccygeal. Inside this flexible protective vertebral column is the spinal cord, which is an elongated mass of nervous tissue covered and protected by membranes called meninges. The outermost layer is the dura mater, the middle layer is the arachnoid membrane, and the innermost layer closest to the spinal cord is the pia mater. The epidural space is located between the outer layer of the dura mater and the vertebral column.10

Urgent Syndromes at the End of Life The spinal cord begins where it is attached to the medulla oblongata in the brain and descends through the foramen magnum of the skull until it ends at the level of the first lumbar vertebra. Lumbar and sacral nerve roots then descend below the distal tip of the vertebral column, and spread to the lumbar and sacral areas. These long nerve roots resemble a horse’s tail that is called the cauda equina. Thirty-one pairs of spinal nerves exit from the spinal cord.176,182,183 Transmission of nerve impulses travels the length of the spinal cord to and from the brain in ascending and descending tracts. Impulses from the spinal cord to the brain travel through the anterior spinothalamic tracts, and impulses from the brain to the spinal cord travel through the lateral corticospinal tracts. Injury to these nerves, or to the cord itself, can result in sensorymotor and autonomic impairment.176 Eighty-five percent of SCCs are extradural in nature.9,10,174,184 That is, they originate outside the cord itself. Extradural metastatic tumors may be osteolytic, where lesions invade the marrow of the vertebrae and cause absorption of bone tissue, which leads to bone destruction. They may also be osteoblastic, where lesions invade the bone marrow and cause bone development, tumor invasion, and collapse of the vertebral body, which then pushes tumor or bone fragments into the spinal cord.10,182,184 Neurological deficits caused by SCC include direct compression on the cord or cauda equina, vascular supply interruption, or pathological fracture, causing vertebral collapse. When nerve tissue dies, neurological regeneration is not always possible. Function may be quickly and irreversibly lost.

Diagnostic Procedures Plain spinal x-rays are an excellent screening tool and can determine the presence of tumor and the stability of the spine.181 They can identify lytic or blastic lesions in up to 85 of vertebral lesions. However, false negatives can occur due to poor visualization, mild pathology, or poor interpretation.177 More than 50 collapse and pedicle erosion must be present before x-ray can detect SCC.185,186 Epidural spread of tumor through the foramina might not always be visualized using plain x-rays. A bone scan may detect vertebral abnormalities when plain fi lms are negative.187–189 MRI is the imaging choice for emergent SCC.186 It is noninvasive and does not require injection with contrast material. It has an advantage over CT because it can image the entire spine, thus detecting multiple areas of compression.173,181,190 Decisions about diagnostic testing will be tempered by a number of factors, including the potential for treatment, prognosis, patient’s condition, and the patient’s and/or family’s wishes for treatment.

Signs and Symptoms The presence of increasing back pain, worse on lying flat and improved on standing, with or without signs of bowel and bladder impairment, in a patient with a history of

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cancer, should presumed to be SCC until proven otherwise. Neurological function before initiation of therapy is the single most important prognostic factor in SCC.16 Misdiagnosis of SCC has been attributed to poor history, inadequate examination, and insufficient diagnostic evaluation.191 Patients who have only localized back pain and a normal neurological examination may have more than 75 of the spinal cord compressed. Upper motor neuron weakness may occur above the L1 vertebral body in 75 of patients with SCC at diagnosis. Sensory changes occur in about half of patients at presentation. Sensory change without pain complaint is extremely rare. A thorough history should pay special attention to the onset of pain, its location, its intensity, duration, quality, and what activities increase or decrease the pain.180,184,192 A history of sensory or motor weakness and autonomic dysfunction should be evaluated and should include onset and degree of weakness; heaviness or stiff ness of limbs; difficulty walking; numbness in arms, hands, fingers, toes, and trunk; and change in temperature or touch. Specific questions about bowel, bladder, and sexual function should be asked directly, because patients may not volunteer these symptoms, such as difficulty in passing urine or stool, incontinence of bowel or bladder, loss of sphincter control, and ability to obtain and maintain an erection. Constipation usually precedes urinary retention or incontinence.184 Physical examination includes observation of the spine, muscles, extremities and skin, and palpation and gentle percussion of vertebrae. Spinal manipulation to elicit pain responses should be carried out cautiously because it may cause muscle spasm or further injury.181 Mental status, cranial nerves, motor function, reflexes, sensation, coordination, strength, and gait should be evaluated (where appropriate to the patient’s status and closeness to death). Focused examination may include performing straight leg raises until the patient feels pain, then dorsiflexing the foot. If this action increases pain down the back of the leg, this suggests that nerve root compression is present. Testing of reflexes will indicate the presence and impact of nerve root compression on motor ability. Cord compression may cause hyperactive deep-tendon reflexes, while nerve-root compression may cause decreased deep-tendon reflexes. A positive Babinski sign and sustained ankle clonus indicate motor involvement.184 Sensory function should be tested by assessing pain (sharp, dull), temperature (hot, cold), touch (light), vibration (tuning fork test), and position senses (fingers and toes). Examination may reveal a demarcated area of sensory loss and brisk or absent reflexes.184 The mapping of positive sensation can be used to pinpoint the level of SCC, usually one or two levels below the site of compression.184 Bladder percussion and digital rectal examination will elicit retention and laxity of sphincter control, a late sign of SCC. Pain may be reported for weeks to months before any obvious neurological dysfunction.173 Pain may be local initially (in the central back, for example), then progress to a radicular pattern that follows a particular dermatome.175,181 Local pain

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may be caused by stretching of bone periosteum by tumor or vertebral collapse, and is usually described by the patient as constant, dull, aching, and progressive in nature. Radicular pain is caused by pressure of tumor along the length of the nerve root.10,123,176 The patient who reports radicular pain will describe it as shooting, burning, or shocklike in nature and will state that it is worsened by movement, sneezing, straining, neck flexion, or by lying down. A classic sign of cord compression is if pain is relieved by sitting up or standing and is worsened by lying flat. Also, if pain increases at night when the patient is lying down to sleep, one should be suspicious of SCC rather than degenerative or disk disease.173 Radicular pain is present in 90 of lumbosacral SCC, 79 in cervical SCC, and in 55 of thoracic SCC.193 Radicular pain is typically bilateral in thoracic lesions, and is often described as a tight band around the chest or abdomen, but it may also be experienced in only part of one dermatome.173,177 Nonradicular referred pain may also be associated with vague paresthesias and point tenderness.173,177,181 Vigilance is called for when these radicular symptoms occur: (1) shoulder tip pain from C7/T1 metastases; (2) anterior or abdominal, flank, or hip pain from T12–L2 metastases; or (3) lateral or anterior rib pain from thoracic metastases.181 The sequence of neurological symptoms usually progresses in the following manner: first there is pain, then motor weakness that progresses to sensory loss, then motor loss, and finally, autonomic dysfunction.9 The patient will initially complain of heaviness or stiffness in the extremities, loss of coordination, and ataxia.194,195 Sensory complaints include paresthesias and numbness, and loss of heat sensation. Dysfunction begins in the toes and ascends in a stocking-like pattern to the level of the lesion.173 Loss of proprioception, deep pressure and vibration are late signs of sensory loss.10,22,123,176 When the cauda equina is affected, sensory loss is bilateral; the dermatome that follows the perianal area, posterior thigh, and lateral aspect of the leg is involved. Late signs of SCC are motor loss and paralysis. Loss of sphincter control is associated with poor return to functionality.10,22,176

Medical and Nursing Management The focus of management of SCC should be the relief of pain and preservation or restoration of neurological function. Rapid intervention is required to prevent permanent loss of function and concomitant quality of life. The patient status (e.g., goals of care and closeness to death), rate of neurological impairment, and prior radiation therapy experience are other factors to consider.184 Corticosteroids, surgical decompression, radiation therapy, and adjuvant chemotherapy or hormonal therapy are the standard treatments for SCC.13,184,196

is the preferred corticosteroid because it is less likely to promote systemic edema caused by other steroids, or to cause cognitive and behavioral dysfunction, and it improves overall outcomes after specific therapy.173 There has been controversy about dosage and scheduling of dexamethasone therapy in the management of SCC.172,173,185 In animal studies, neurological status has improved more rapidly with high dose steroid therapy.177,178,198–201 A recent Cochrane review examining interventions for metastatic extradural SCC was, however, unable to demonstrate any evidence-based differences in benefit from high-dose versus low-dose corticosteroids. The review did however, conclude that the incidence of adverse side effects was greater with high-dose compared to low-dose steroid therapy.197 One suggested approach would be to administer high-dose therapy for patients who are no longer ambulatory or have rapidly increasing motor deficits, and low-dose therapy for those patients who can walk and do not have significant/worsening motor deficits.172 Currently, high-dose therapy regimens recommend administering a 100-mg IV bolus of dexamethasone, followed by 24 mg dexamethasone orally QID for 3 days, then tapering the dose over 10 days. High-dose therapy may increase analgesia but, as mentioned, can also increase side effects that are significant. These include GI bleeding, hyperglycemia, depression and psychosis, myopathy, osteoporosis, and acute adrenal insufficiency with abrupt withdrawal.182 Low-dose dexamethasone regimen recommends administering a 10 mg IV bolus of dexamethasone, followed by 4 mg IV QID for 3 days, then tapering the dose over 14 days.173 Rapid IV push of corticosteroids causes severe burning pain in the perineum, and the patient needs to be warned that this will occur but does not signify that anything is wrong. Corticosteroids are metabolized by the cytochrome P-450 system, and there are implications for interactions with other medications, particularly anticonvulsants. Decompressive Surgery The goals of surgery are to decompress neural structures, resect tumor if possible, establish local disease control, achieve spinal stability, restore the ability to ambulate, treat pain, and improve quality of life. Surgery for SCC has been used to (1) establish a diagnosis when tissue is required for histologic analysis; (2) halt rapidly deteriorating function; (3) achieve cure for primary malignancy; (4) treat those with previously irradiated radio-resistant tumor and who have continuing symptomatic progressive loss of function; (5) rule out infection or hematoma; (6) alleviate respiratory paralysis caused by high cervical spinal cord lesions; and (7) decompress and stabilize spine structure.10,13,22,184 Benefits and burden of surgery to the patient in a palliative care setting must be carefully weighed so that the patient and family can make an informed decision.

Corticosteroids Radiation Therapy Corticosteroids decrease vasogenic edema and inflammation and thus relieve pain and neurological symptoms, and may have some oncolytic effect on tumor.192 Dexamethasone

Fractionated external-beam radiation therapy (XRT) to the spine is given to inhibit tumor growth, restore and preserve

Urgent Syndromes at the End of Life neurological function, treat pain, and improve quality of life.9,202 It has been the primary treatment for SCC.173 The standard treatment regimen is 30 Gy over the course of 10 fractions, but hypofractionation (e.g. 8 Gy once or 4 Gy over 5 fractions) may be used in patients with limited expected survival.158 Only symptomatic sections of the spine are treated. Seventy percent of patients who are ambulatory at the start of treatment will retain their ability to walk. Thirty-five percent of paraparetic patients will regain their ability to walk, while only 5 of completely paraplegic patients will do so.16,203 Primary side effects of radiation therapy include skin alterations of erythema, dry or moist desquamation, pigmentation changes, as well as generalized fatigue.

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All patients with hypercalcemia who are symptomatic warrant a trial of therapy. Control of hypercalcemia will not affect prognosis but may greatly improve symptoms and quality of life in these patients.

o] Definition Hypercalcemia is an excessive amount of ionized calcium in the blood.204,205 If hypercalcemia is left untreated, the patient may experience irreversible renal damage, coma, or death. Mortality from untreated hypercalcemia approaches 50.

Nursing Management

Epidemiology

The goal of nursing management is to identify patients at high risk for cord compression, to educate the patient and family regarding signs and symptoms to report, to detect early signs of SCC, and to work as a member of the palliative care team in managing symptoms. In those patients who have far advanced disease, palliative care efforts focus on promoting comfort, relieving pain and providing family support.

About 10 to 20 of cancer patients will develop hypercalcemia at some time during their illness.204,206–208,210 Carcinomas of the breast and lung, multiple myeloma, and squamous cell carcinomas of the head, neck, and esophagus are the most common malignancies associated with hypercalcemia. Incidence ranges from 30 to 40 for breast cancer with bone metastases, 20 to 40 for multiple myeloma, 12.5 to 35 for the squamous cell lung carcinomas, and 2.9 to 25 for head and neck malignancies.204 Hypercalcemia is rare in prostate cancer, GI cancers, and cancers of the biliary tract.204 Primary hyperparathyroidism as a cause of hypercalcemia is more common in the ambulatory and asymptomatic population.209,211,216 Other conditions associated with hypercalcemia include lithium therapy, Addison’s disease, Paget’s disease, granulomatous disease, vitamin D intoxication, hyperthyroidism, vitamin A intoxication, and aluminum intoxication.205,212

o]o]o] HYPERCALCEMIA 9= CASE STUDY Mrs. R, A Patient with Breast Cancer Mrs. R, a 45-year-old mother of two and businesswoman, has been fighting breast cancer for the past three years, and she currently has multiple sites of bony metastasis. She has been taking oral chemotherapy as well as radiation therapy. She is very stoic and determined to “beat this cancer.” Her job requires a lot of concentration, but she has recently had some difficulty focusing on tasks and is having some memory lapses as well. Her co-workers and family finally convince her to call her oncologist’s office, and she talks to his nurse. During this conversation she also lists constipation, loss of appetite, and fatigue as new issues. Mrs. R is instructed to come in to the office for an exam and to have blood drawn. ◆ ◆

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Key Points Hypercalcemia occurs in 8 to 10 of patients with cancer, with an incidence of 40 in patients with breast cancer and multiple myeloma. Common presenting signs are fatigue, lethargy, nausea, polyuria, and confusion. The combination of nausea and polyuria can lead to dehydration and worsening of hypercalcemia. Severity of symptoms depends on the level of free ionized calcium and the speed with which the level rises. The serum calcium level is adjusted according to the serum albumin in patients with significant hypoalbuminemia.

Pathophysiology Calcium helps the body to maintain its acid-base balance, maintain permeability of cell membranes, promote coagulation, and maintain proper nerve and muscle function.213 Under normal circumstances, bone resorption and bone formation are in a steady state and are regulated by three hormones— parathyroid hormone (PTH), calcitriol (1,25 dihydroxyvitamin D, a metabolite of vitamin D), and calcitonin.205 These hormones act at bone sites, in the intestine, and in the kidney. PTH directly increases resorption of calcium from the bone and calcium resorption in the renal tubule. Calcitriol stimulates absorption of calcium in the intestine. It enhances bone resorption and increases renal resorption. Calcitonin is excreted by the thyroid gland and inhibits bone resorption and increases excretion of calcium. Bone undergoes constant remodeling in the human body. Osteoblasts form bone and osteoclasts resorb bone. About 99 of the body’s calcium is found in bone. The remaining 1 circulates in the blood or is found inside cells. Half of plasma calcium is bound to either protein (albumin) or to other ions, such as phosphate, carbonate, or citrate. The remaining

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calcium circulates as free ions. Since free calcium is biologically active, its level is maintained in a narrow range in the normal physiological state. Hypercalcemia in malignant disease is primarily due to increased mobilization of calcium from bone. Increased renal tubular calcium resorption is also a factor in hypercalcemia of malignancy. There are three major mechanisms that contribute to the development of malignant hypercalcemia.206 First, higher levels of PTHrP (parathyroid hormone-related protein) are found in hypercalcemic patients who have solid tumors, particularly squamous cell carcinomas. The presence of elevated PTHrP levels is associated with more advanced cancer, a worse prognosis, and a poor response to bisphosphonate therapy. Approximately 80 of cases of malignant hypercalcemia are related to the presence of this protein. Second, osteolysis of bone is caused by the release of tumor and other cell mediators. When this mechanism is operating, hypercalcemia occurs late in disease and is usually associated with extensive osteolytic bone metastases. Third, the increased production of calcitriol by lymphoma tumor cells, for example, leads to increased resorption of calcium in the gut. Hypercalcemia induced by calcitriol usually responds to corticosteroid therapy. The kidney normally adapts to disturbances in calcium homeostasis. However, in the presence of malignancy, patients may experience treatment or disease-related side effects including vomiting, mucositis, anorexia, dysphagia, and fever, all of which can lead to volume depletion.204 This imbalance signals the kidney to reabsorb sodium to correct extracellular volume depletion. Calcium and sodium resorption are closely linked in the body; when sodium is resorbed, calcium is also resorbed. As calcium ions are resorbed in the kidney, the tubules lose their ability to concentrate urine, leading to high-output polyuria and further dehydration. Poor renal perfusion, reduced glomerular filtration and compromised excretion of calcium lead to a further increase of calcium in the blood. Ultimately, renal failure will occur. A high calcium level can alter the patient’s mental status significantly, which, in turn, can greatly affect the patient’s ability to drink fluids. Cellular dehydration and resulting hypotension are exacerbated by decreased proximal renal tubule reabsorption of sodium, magnesium, and potassium. Bone loss due to immobilization, lack of physical exercise, inappropriate use of thiazide diuretics, poor diet, and general physiological wasting will also increase the amount of free calcium ions in the circulation, further increasing calcium levels.

Diagnostic Tests and Procedures The ionized calcium concentration is the most important laboratory test to use in the diagnostic workup for hypercalcemia. It is the most accurate indicator of the level of calcium in the blood. (There is only a fair correlation between the total serum calcium level and ionized calcium.) When ionized calcium cannot be used as a diagnostic tool, the total

serum calcium value may be used, but it must be corrected for serum albumin. A rule of thumb is to add 0.8 for each 1 g/ dL the albumin has dropped below the normal range (3.7 to 5 g/dL).204,205

Signs and Symptoms Symptoms of hypercalcemia, their severity, and how quickly they appear will vary from patient to patient. The extent of metastatic bone disease is not associated with hypercalcemia levels.208,209,210,214 It is important to remember that patients, especially the elderly and the debilitated,204,209,212,215 may experience severe symptoms even when serum calcium is not extremely elevated.204 Symptoms of hypercalcemia, such as vomiting, nausea, anorexia, weakness, constipation, and impaired mental status, may be mistakenly attributed to the disease or effects of treatment. Factors that will influence patients’ response to hypercalcemia include age,212 performance status, renal or hepatic failure, and sites of metastatic disease. Patients with a corrected serum calcium level less than 12 mg/dL who are asymptomatic can be considered to have mild hypercalcemia. Patients who have a serum calcium level between 12 and 14 mg/dL should be closely monitored and may require urgent intervention, depending on goals of care in the palliative setting. Those patients with a calcium level greater than 14 mg/dL will require urgent treatment, again depending on goals of care in the palliative setting.206 The patient may complain of numerous symptoms that can mimic symptoms of advanced malignancy.204 These include GI symptoms of nausea, vomiting, anorexia, constipation, obstipation and even complete ileus. Polydipsia and polyuria may also be present. Muscle weakness, fatigue, and difficulty climbing stairs or getting out of a car, are musculoskeletal symptoms that can progress to profound weakness, hypotonia, and fracture. Neuropsychological symptoms can begin with confusion, personality change, restlessness, and mood alterations, and can progress to slurred speech, psychotic behavior, stupor, and coma. These are also symptoms that must be evaluated. The patient may also complain of bone pain, although the precise mechanism of bone-pain hypercalcemia is unknown. Early signs of delirium in the hypercalcemic patient are associated with multiple factors that include electrolyte imbalance, metabolic disturbance, and renal failure, among others. If recognized early, treatment of the condition can alleviate and possibly reverse the symptoms.216 Management of confusion includes both pharmacotherapy and a reassuring and calm environment.

Medical and Nursing Management Regardless of the goals of care, active treatment goals are to promote alleviation of distressing symptoms. All patients with hypercalcemia who are symptomatic warrant a trial of therapy. When the goal is to reverse the hypercalcemia, this is

Urgent Syndromes at the End of Life accomplished by replenishing depleted intravascular volume, promoting diuresis of calcium, shutting down osteoclast activity in the bone, inhibiting renal tubular reabsorption of calcium, and promoting patient mobilization to the extent it is possible.205,206 Hydration is the first step in treatment. The purpose of hydration is to increase urinary calcium excretion, which improves renal function.207 One to 2 liters of isotonic saline is administered over 1 to 4 hours, and the patient’s fluid intake and urinary output are closely monitored. The rate of fluid administration depends on the clinical estimate of the extent of hydration, patient’s cardiovascular function, and renal excretion capacity.206 Electrolytes and other laboratory values are closely monitored in appropriate patients. These include serum calcium (ionized or corrected), potassium, magnesium, as well as other electrolytes, and albumin and bicarbonate levels. Renal function tests, including BUN and creatinine, are monitored. In rare cases, dialysis may be considered. In most patients, cardiac effects of hypercalcemia are minimal and outcomes are not usually affected, so cardiac monitoring is not usually necessary. Bisphosphonate Therapy Most hypercalcemic patients are treated with bisphosphonate therapy. It is an effective therapy for a number of cancers.218–221 Bisphosphonate therapy inhibits bone resorption by osteoclasts, thus reducing the amount of calcium released into the bloodstream. Several IV bisphosphonates and amino-bisphosphonates are available for use in patients.222,223 Pamidronate and etidronate are the oldest ones available in the United States.208,217,224,225 The newer agents include risedronate sodium, ibandronate, and zoledronic acid.226 Pamidronate has been the most frequently used bisphosphonate, but zoledronate is becoming more widely used in the outpatient setting due to its much more rapid infusion time (30 minutes versus 2–6 hours for pamidronate). Pamidronate is usually given as 60 mg to 90 mg IV approximately every 3 to 4 weeks. In general, there is a 60 response to a 60-mg dose and a 100 response to a 90-mg dose.211 Zoledronate, usually given as 4 mg IV, has been shown to have a higher rate and duration of control of hypercalcemia compared to pamidronate.227 Pamidronate, and especially zoledronate, can cause renal toxicity (thus making evaluation and continued monitoring of kidney function essential prior to/during administration). Biphosphonates can cause osteonecrosis of the jaw, especially in patients with myeloma who have been treated with pamidronate and zoledronate for a long period of time, as well as patients with dental problems.227 Since hypercalcemia tends to recur, pamidronate or zoledronate must be given approximately every 4 weeks. Immediate side effects of pamidronate therapy include lowgrade fever appearing within 48 hours of treatment, redness, induration, and swelling at the site of catheter. Hypomagnesia and hypocalcemia may also occur. Rapid administration

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of IV bisphosphonates can cause significant pain and this practice should be avoided. Subcutaneous administration of clodronate has been found to be an efficient treatment for malignant hypercalcemia.228 This route may be particularly useful in hospital, home, and hospice settings and spares the patient discomfort and the costs associated with transportation and IV administration in the hospital environment. Calcitonin Calcitonin inhibits resorption of calcium and can rapidly restore normocalcemia, often within 2 to 4 hours of administration. It is much less effective than pamidronate. Its role in managing hypercalcemia is limited to short-term use, usually of only 2 to 3 days’ duration. Side effects are usually mild and include nausea and vomiting, skin rashes, and flushing. Calcitonin can be an alternative for treatment in patients with kidney failure (where pamidronate and zoledronate are contraindicated).227 Gallium Nitrate and Plicamycin Gallium nitrate is an effective bone resorptive agent. Its mechanism of action is unknown.229 Its main disadvantages are that it has potential to cause nephrotoxicity, and it must be given as a continuous IV infusion over 5 days.205,217 Plicamycin is an antitumor antibiotic.230,231 Its mechanism is unknown. It has a hypocalcemic effect that occurs within 48 hours of administration and that lasts for 3 to 7 days, but it exhibits marrow, hepatic, and renal toxicities.205 Individual response variations make this drug unpredictable, and it must be administered repeatedly. Corticosteroids Corticosteroids have a limited role in the treatment of hypercalcemia.206 Dialysis The use of dialysis has been reserved for those patients who have severe hypercalcemia, renal failure, congestive heart failure, and cannot be given saline hydration.232,233 The decision to offer this therapy is made on a case-by-case basis, but, in general, dialysis is not offered in the palliative care arena.

Palliative Nursing Care Hypercalcemia can cause significantly painful and distressing symptoms, including bone pain, agitation and confusion, severe constipation, and delirium. Treatment of hypercalcemia can reduce pain and other symptoms, improve quality of life, and reduce hospitalizations. At end of life, the promotion of comfort and management of symptoms are the primary goals of the palliative nursing care. If hypercalcemia cannot be reversed, or the patient decides that the burden of

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interventions is greater than the benefit, the patient should be given the option of discontinuing such treatment. Ongoing management of symptoms, including sedation if desired, must be guaranteed to the patient and their family.

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7.

8.

Conclusion 9.

This chapter addressed a group of syndromes, which, unless recognized and treated promptly, will cause unnecessary suffering for the patient and family. Emphasis has been given to the epidemiology and basic pathophysiology of each syndrome, as well as diagnostic assessment. Providing this information, although by necessity limited in detail, enables the palliative care nurse to explain to the patient and/or family why particular symptoms are occurring and why a particular management approach is being suggested. Treatment advice and decisions are always couched within the framework of “Is the underlying cause reversible or not?”; “What is the benefit/ burden ratio of the treatment and how does that fit in with the patient’s values and goals?”; “What is the likely outcome if the syndrome is not treated?”; “How will resultant symptoms be managed?”; “Is palliative sedation available to a patient at end of life if desired?”; and “Will the site of care impact on treatment decisions?”

o]

Acknowledgment

10. 11. 12.

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14. 15. 16. 17.

18. 19.

The author wishes to thank Ashby Watson for her outstanding first version (in the 2nd edition) of this chapter that made the task of updating it so much easier. Unfortunately, she could not be reached to get her feedback and retain her as first author.

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180. Caraceni A, Martini C, Simonetti F. Neurological disturbances in advanced cancer. In: Doyle D, Hanks G, Cherny N, Calman K, eds. Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, 2004:702–726. 181. Weinstein SM. Management of spinal cord and cauda equina compression. In: Berger AM, Portenoy RK, Weissman DE, eds. Principles and Practice of Palliative Care and Supportive Oncology (2nd ed). Philadelphia: Lippincott Williams & Wilkins, 2002:532–543. 182. Belford K. Central nervous system cancers. In: Groenwald S, Frogge M, Goodman M, Yarbro C, eds. Cancer Nursing (4th ed). Boston: Jones and Bartlett, 1997:721–741. 183. Henze R. Traumatic and vascular injuries of the central nervous system. In: Bullock B, Henze R, eds. Focus on Pathophysiology. Philadelphia: Lippincott Williams & Wilkins, 2000:938–978. 184. Bucholtz J. Metastatic epidural spinal cord compression. Semin Oncol Nurs 1999;15:150–159. 185. Fuller BG, Heiss JD, Oldfield EH. Spinal cord compression. In: Devita VT, Hellman S, Rosenberg SA, eds. Cancer Principles and Practice of Oncology (6th ed). Philadelphia: Lippincott Williams & Wilkins, 2001:2617–2632. 186. Hewitt DJ, Foley KM. Neuroimaging of pain. In: Greenberg JO, ed. Neuroimaging. New York: McGraw-Hill, 1995:41. 187. Frank JA, Ling A, Patronas NJ. Detection of malignant bone tumors: MRI imaging vs. scintigraphy. Am J Roentgenol 1990;155:1043–1048. 188. Algra PR, Bloem JL, Tissing H. Detection of vertebral body metastases: Comparison between MR imaging and bone scintigraphy. Radiograph 1991;11:219–232. 189. St. Amour TE, Hodges SC, Laakman RW, et al. MRI of the Spine. New York: Raven, 1994:435. 190. Sze G. Magnetic resonance imaging in the evaluation of spinal tumors. Cancer 1991;67:1229–1241. 191. Burger EL, Lindeque BG. Sacral and non-spinal tumors presenting as a backache: A retrospective study of 17 patients. Acta Orthoped Scand 1994;65:344–346. 192. Abrahm JL. Management of pain and spinal cord compression in patients with advanced cancer. Ann Intern Med 1999;131:37–46. 193. Gilbert RW, Kim JH, Posner JB. Epidural spinal cord compression from metastatic tumor: Diagnosis and treatment. Ann Neurol 1978;3:40–51. 194. Hainline B, Tuzynski MH, Posner JB. Ataxia in epidural spinal cord compression. Neurol 1992;42:2193–2195. 195. Gudesblatt M, Cohen JA, Gerber O. Truncal ataxia presumably due to malignant spinal cord compression. Ann Neurol 1987;21:511–512. 196. Patchell R, Tibbs PA, Regine WF, et al. A randomized trial of direct decompressive surgical resection in the treatment of spinal cord compression caused by metastasis. Proc Am Soc Clin Oncol 2003;22(abstract 2):1. 197. George R, Jeba J, Ramkumar G, et al. Interventions for the treatment of metastatic extradural spinal cord compression in adults. Cochrane Database Syst Rev 2008;Issue 4. Art. No.:CD006716. DOI:10.1002/14651858.CD006716.pub2. 198. Greenberg HS, Kim JH, Posner JB. Epidural spinal cord compression from metastatic tumor: Results from a new treatment protocol. Ann Neurol 1980;8:1–366. 199. Delattre JY, Arbit E, Thaler HT. A dose response study of dexamethasone in a model of spinal cord compression caused by epidural tumor. J Neurosurg 1989;70:920–925.

Urgent Syndromes at the End of Life 200. Loblaw D, Laperriere N. Emergency treatment of malignant extradural spinal cord compression: An evidence-based guideline. J Clin Oncol 1998;16:1613–1624. 201. Grant R, Papadopoulos SM, Greenberg HS. Metastatic epidural spinal cord compression. Neurol Clin 1991;9:825–841. 202. Flower CDR, Jackson JE. The role of radiology in the investigation and management of patients with hemoptysis. Clin Radiol 1996;51:391–400. 203. Sitton E. Nursing implications of radiation therapy. In: Itano J, Toaka K, eds. Core Curriculum for Oncology Nursing (3rd ed). Philadelphia: W.B. Saunders, 1998:616–629. 204. Clayton K. Cancer-related hypercalcemia: How to spot it, how to manage it. AJN 1997;97:42–48. 205. Morton AR, Ritch PS. Hypercalcemia. In: Berger AM, Portenoy RK, Weissman DE, eds. Principles and Practice of Palliative Care and Supportive Oncology (2nd ed). Philadelphia: Lippincott Williams & Wilkins, 2002:493–507. 206. Warrell RP. Metabolic emergencies. In: Devita VT, Hellman S, Rosenberg SA, eds. Cancer Principles and Practice of Oncology (6th ed). Philadelphia: Lippincott Williams & Wilkins, 2001:2633–2645. 207. Bajorunas D. Clinical manifestations of cancer-related hypecalcemia. Semin Oncol 1990;17:16–24. 208. Mundy GR. Pathophysiology of cancer-associated hypercalcemia. Semin Oncol 1990;17:10–15. 209. Ralston SH. Pathogenesis and management of cancer-associated hypercalcemia. In: Rubens RD, Fogelman I, eds. Bone Metastases: Diagnosis and Treatment. New York: Springer Verlag, 1991:149–169. 210. Gaich G, Burtis WJ. The diagnosis and treatment of malignancyassociated hypercalcemia. N Engl J Med 1992;326:1196–1203. 211. Nussbaum SR. Pathophysiology and management of severe hypercalcemia. Endocrinol Metab Clin North Am 1993;2:343–362. 212. Kovacs CS, MacDonald SM, Chik CL, et al. Hypercalcemia of malignancy in the palliative care patient: A treatment strategy. J Pain Symptom Manage 1995;10:224–232. 212a. Lange B, D’Angio G, Ross AJ, et al. Oncologic emergencies. In: Pizzo PA, Poplack DG, eds. Principles and Practice of Pediatric Oncology. Philadelphia: J.B. Lippincott, 1989:799–819. 213. King PA. Oncologic emergencies: Assessment, identification, and interventions in the emergency department. J Emerg Nurs 1995;21:213–218. 214. Burtis WJ. Parathyroid hormone-related protein: Structure, function, and measurement. Clin Chem 1992;38:2171–2183. 215. Mercadante S. Malignant bone pain: Pathophysiology and treatment. Pain 1997;69:1–18. 216. Kuebler KK. Palliative nursing care for the patient experiencing end-stage renal failure. Urol Nurs 2001;21:167–168, 171–178. 217. Flombaum CD. Oncologic emergencies: Metabolic emergencies. Semin Oncol 2000;27:322–334.

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218. Djulbvegovic B, Wheatley K, Ross J, et al. Bisphosphonates in multiple myeloma. Cochrane Database Syst Rev 2002;3:CD0031188. 219. Pavlakis N, Schmidt RL, Stockler PN. Bisphosphonates for breast cancer. Cochrane Database Syst Rev 2005;3. Available at: http://www.cochrane.org/reviews/en/ab003474.html (accessed December 22, 2008). 220. American Society of Clinical Oncology (ASCO). Optimizing cancer care—the importance of symptom management: Malignant pleural eff usions. ASCO Curriculum. Dubuque, IA: Kendall/Hunt Publishing Company, 2001:1–27. 221. Wong RKS, Wiffen PJ. Bisphosphonates for the relief of pain secondary to bone metastases. Cochrane Library, 2003, Available at: http://www.cochrane.org/reviews/en/ab002068. htm (accessed December 22, 2008). 222. Ralston SH, Gallacher SJ, Patel U, et al. Comparison of three intravenous bisphosphonates in cancer-associated hypercalcemia. Lancet 1989;2:1180–1182. 223. Gallacher SJ, Ralston SH, Fraser WD. A comparison of low versus high dose pamidronate in cancer-associated hypercalcemia. Bone Miner 1991;15:249–256. 224. Gucalp R, Theriault R, Gill I, et al. Comparative study of pamidronate disodium and etidronate disodium in the treatment of cancer-related hypercalcemia. J Clin Oncol 1992;10:134–142. 225. Purohit OP, Radstone CR, Anthony C, et al. A randomized double-blind comparison of intravenous pamidronate and clodronate in the hypercalcemia of malignancy. Br J Cancer 1995;72:1289–1293. 226. Major P, Lortholary A, Hon J, et al. Zoledronic acid is more effective than pamidronate for hypercalcemia of malignancy. Evid based Oncol 2001;2:159–162. 227. Lumachi F, Brunello A, Roma A, Basso U. Medical treatment of malignancy-associated hypercalcemia. Curr Med Chem 2008;15:415–421. 228. Roemer-Becuwe C, Vigano A, Romano F, et al. Safety of subcutaneous clodronate and efficacy in hypercalcemia of malignancy: A novel route of administration. J Pain Symptom Manage 2003;26:843–848. 229. Warrell RP Jr, Bockman RS, Coonley CJ, et al. Gallium nitrate inhibits calcium resorption from bone and is effective treatment for cancer-related hypercalcemia. J Clin Invest 1984;73:1487–1490. 230. Smith IE, Powles TJ. Mithramycin for hypercalcemia associated with myeloma and other malignancies. BMJ 1975;1:268–269. 231. Mundy GR. Mechanisms of bone metastasis. Cancer 1997;80:1546–1556. 232. Koo WS, Jeon DS, Ahn SJ, et al. Calcium-free dialysis for the management of hypercalcemia. Nephron 1996;72:424–428. 233. Leehey DJ, Ing TS. Correction of hypercalcemia and hypophosphatemia by hemodialysis using a conventional, calciumcontaining dialysis solution enriched with phosphorus. Am J Kidney Dis 1997;29:288–290.


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Patti Knight and Laura A. Espinosa

Sedation for Refractory Symptoms and Terminal Weaning I can’t bear the thought of my dad dying like this; he is such a good man.—Daughter watching her father suffer with bone pain while dying of cancer It’s not the withdrawal of care that’s the hard part; it’s the infliction of care when—when there’s no need for it. It’s not going to make any difference. All you’re going to do is make somebody suffer longer. Why? I’d rather let somebody die.—ICU Nurse

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Key Points Palliative sedation is sedation used to control refractory and intolerable symptoms at the end of life when control of these symptoms is not possible and the person remains awake and alert. Proportionality is a concept that implies that a patient’s consciousness is reduced just enough to relieve refractory symptoms. Determining refractoriness of symptoms and closeness to death can be difficult and requires assessment by a skilled practitioner. Patient/family/proxy involvement is central in decisions concerning use of palliative sedation or terminal weaning. Clear communication with significant others, precise documentation, and informed consent are necessary. Most hospital deaths involve a decision to withhold or withdraw some form of life support.

In the United States, approximately 2.5 million people die each year, with greater than 60 of deaths occurring in hospitals.1 These statistics are alarming and underscore the public’s concern about how well the dying are cared for. The results of a survey by the Last Acts Coalition, funded by the Robert Wood Johnson Foundation, indicated that many of the general public feel that deaths in hospitals are not well managed. Ninety-three percent of respondents stated that it was “very important” or “somewhat important” to improve how the health care system cares for dying Americans.2 This survey also demonstrated that patients and their family members wanted to be involved in decision-making and to be comfortable at the end of life with well-managed symptoms, and care that does not exhaust life savings. Oregon’s Death with Dignity Act has been in effect since 1997. This Act allows terminally ill Oregonians to end their lives through the voluntary self-administration of medications prescribed by a physician for that purpose. Before the law was passed, opponents argued that good palliative and hospice care would largely replace the need for such a law. In the first 10 years after the law was passed, 341 patients chose to end their lives under the protection of the Death with Dignity Act. The Oregon Department of Health Services (ODHS) is required to collect information about patients and physicians who participate in the process. The 2007 ODHS report states that 33 of participating patients mentioned concern about pain (up from 26 in past years) as one reason for seeking a prescription for lethal medications. ODHS also reports that 100 of patients mentioned loss of autonomy as the main reason for seeking a prescription, and 86 cited decreasing ability to participate in enjoyable activities, as well as loss of dignity, as highly significant in their decision. In 2008, the state of Washington passed a Death with Dignity Act modeled after the Oregon law.3 Obviously, this is an issue with which patients and the public are concerned. With this in mind, both nurses and physicians need to develop skills in

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assessing why a particular patient is requesting a hastened death, so that appropriate interventions can be initiated. Palliative care providers are faced with the challenge of managing a multitude of complex symptoms in terminally ill patients. Although many of these symptoms respond to skilled palliative management, others can remain refractory to treatment.4–9 Suffering at the end of life involves physical, psychological, social, and spiritual distress. In most situations, multidisciplinary palliative interventions provide effective comfort,7–9 but in some instances suffering becomes refractory and intolerable.7,10 This chapter explores the use of palliative sedation and terminal weaning in the hospital setting. It presents case studies involving palliative sedation and withholding or withdrawing life support, discusses several definitions of palliative sedation, frequency of palliative sedation , reasons for palliative sedation, medications used, guidelines for nursing care, time-to-death issues, ethical considerations, informed consent, and the role of the nurse-caregiver. The following two cases provide examples of clinical situations in which decisions regarding sedation and terminal weaning were required.

9= CASE STUDY 1 Mr. C is a 63-year-old man with a 3-month-old diagnosis of bladder cancer that metastasized to his ribs, spine, pelvis, right clavicle, and right femur and humerus. He was admitted to the Acute Palliative Unit by his primary oncologist for management of uncontrolled pain, depressed mood, and difficulty coping with the cancer diagnosis. His primary oncologist is offering palliative treatment, but is not ruling out curative therapy if Mr. C’s overwhelming symptom burden is brought under control. Mr. C, who is divorced, is accompanied by his two children and three siblings. While his family is supportive, they are also having difficulty coping with the cancer diagnosis and with watching their loved one suffer uncontrolled pain. Mr. C was initially started on a hydromorphone infusion (patientcontrolled analgesia) for immediate pain relief. Palliative radiation therapy for the tumor in his femur was also started. Adopting a multidisciplinary approach, the primary oncologist asked a psychiatrist to assess Mr. C’s depressed mood, an orthopedic surgeon to assess options for femur stabilization, and an anesthesia pain specialist to evaluate the feasibility of a nerve block or other interventions to provide added pain relief. Shortly after admission, Mr. C’s femur fractured upon transfer to radiation therapy. Consultants from the orthopedic and pain services felt he was not a candidate for surgery for multiple reasons, including coagulopathies related to his renal cancer. The psychiatrist who evaluated Mr. C diagnosed an adjustment disorder stemming from the stress associated with his cancer diagnosis, and multiple family issues that required immediate attention. The patient and family’s distress were

compounded by his escalating pain and his dependency and need for daily care. His pain was initially managed by escalating his hydromorphone dose and adding steroids to his regimen. With increasing doses of hydromorphone and the addition of steroids, he developed a delirium; Haloperidol was added to his regimen and he was rotated to methadone. The patient’s sensorium cleared, his pain remained difficult to control while he remained awake and alert, and he stated that he did not want further cancerfocused treatment. He acknowledged that his death was near and that he wanted to be sedated in his dying. o]

9= CASE STUDY 2 Mrs. M, a 74-year-old woman with end-stage heart failure, was admitted to the coronary care unit (CCU) for respiratory support. She was a widow with three adult daughters, ages 23, 30, and 34. Mrs. M was awake and alert but on a ventilator. Once stabilized and diuresed she was able to be extubated. Her physician asked if she would want to be reintubated in the case of a recurrence of respiratory failure. Mrs. M stated that she did not want to be reintubated—all she wanted was to be home for Thanksgiving. The two older daughters agreed to honor their mother’s decision. An interdisciplinary team meeting was held including a hospice nurse, and a plan was developed to get the patient home the day before Thanksgiving. The patient would receive home hospice care once discharged. Morphine was to be used for any respiratory distress, and glycopyrrolate for excessive secretions. o]

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Definitions From Terminal Sedation to Palliative Sedation Numerous efforts have been made to standardize a definition for terminal sedation (this phrase was first used by Enck after a reviewing series of cases where physical symptoms were treated with sedation at the end of life),11 and to separate sedation at end of life from sedation used in other medical settings.5–8,12–14 Terms used for sedation at end of life include “palliative sedation,”5,7,8,13 “terminal sedation,”9 “total sedation,”15 “sedation for intractable symptoms,”16 and “sedation for distress in the imminently dying.”5 Palliative sedation has been termed “slow euthanasia.”17 This is not a widely accepted definition of palliative sedation, as the intent of sedation at end of life is to relieve suffering and not to hasten death. In this chapter the term “palliative sedation” will be used for sedation at end of life. It is defined as the monitored use of medications to induce sedation as a means to control refractory and unendurable symptoms near the end

Sedation for Refractory Symptoms and Terminal Weaning

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Table 26–1 Palliative Sedation Definitions Existential suffering (sometimes referred to as terminal anguish): Refractory psychological symptoms. Imminent death: Death that is expected to occur within hours to days based on the person’s condition, disease progression, and symptom constellation. Intent: The purpose or state of mind at the time of an action. Intent of the patient/proxy and health care provider is a critical issue in ethical decision-making regarding palliative sedation. Relief of suffering, not hastening or causing death, is the intent of palliative sedation. Palliative sedation: The monitored use of medications intended to provide relief of refractory symptoms by inducing varying degrees of unconsciousness, but not death, in terminally ill patients (Hospice and Palliative Nurses Association [2003], reference 53). Levels of sedations: Mild (somnottence): The patient is awake with a lowered level of consciousness. Intermediate (stupor): the patient is asleep but can be awakened to communicate briefly. Deep (coma): The patient is unconscious and unresponsive (Beel et al. (2002), reference 6). Double effect: In terminal sedation, an act with more than one potential effect (one good and one bad) is ethical if (1) the intended end (relief of distressing symptoms) is a good one, (2) the bad effect (death) is foreseen but not intended, (3) the bad effect is not the means of bringing about the good effect (death is not what relieves the distress), and (4) the good effect outweighs the bad effect (in a dying patient, the risk of hastening death for the benefit of comfort is appropriate) (Thorns [2002], reference 54). Refractory symptom: A symptom that cannot be adequately controlled in a tolerable time frame despite the aggressive use of usual therapies and that seems unlikely to be adequately controlled by further invasive or noninvasive therapies without excessive or intolerable acute or chronic side effects. Terminal weaning (slow withdrawal): Removal of mechanical ventilation, which is performed by gradually reducing the fraction of inspired oxygen (FIO2) and/or mandatory ventilator rate, leading to the development of hypoxemia and hypercarbia, when the patient is not expected to survive.21 Terminal extubation (abrupt withdrawal): Removal of an endotracheal tube.22

of life. The intent is to control symptoms, not hasten death. The acceptance of the term “palliative sedation” over “terminal sedation” has evolved to emphasize the difference between management of refractory symptoms at end of life, and euthanasia. Table 26–1 lists common terms used in relation to palliative sedation and terminal weaning. The goal of palliative sedation is the relief of suffering, and includes the concept of proportionality. Proportionality, in this setting, implies that the patient’s consciousness is reduced just enough to relieve refractory suffering. Depending on the patient’s situation, the level of sedation that is required may be light or deep. The endpoint that is sought is the relief of suffering. This range in depth of sedation is captured in a proposed definition of palliative sedation at the end of life as the “intentional administration of sedative drugs in dosages and combinations as required to reduce the consciousness of a terminally ill patient as much as necessary to relieve one or more refractory symptoms.”18 This definition reflects proportionality and clearly separates out palliative sedation at end of life from euthanasia.

“Terminal Wean” The term “terminal wean” is used when mechanical ventilation is withdrawn and the patient is not expected to survive.19,20 A frequent approach to a terminal wean is to gradually reduce the fraction of inspired oxygen (FIO2) and/or mandatory ventilator rate. This may lead to the development of hypoxemia or

hypocarbia or both.21 Another commonly used term is “terminal extubation,” which refers to removal of the patient’s endotracheal tube. The decision to remove the endotracheal tube during or after a terminal weaning process is practitioner-dependent at this time.22 Grenvik, in 1983, was the first to describe a systematic approach to ventilator withdrawal, suggesting a gradual reduction in ventilator settings over the course of several hours.20 Some practitioners prefer a more abrupt withdrawal from ventilator support. In a 1992 survey of Society of Critical Care Medicine physicians about general ICU patients in need of extubation, 33 preferred terminal weaning, 13 preferred extubation, and the remainder used both.23 Surgeons and anesthesiologists were more likely to use terminal weaning, and internists and pediatricians were more likely to use terminal extubation. While both methods include administration of sedatives and analgesics as indicated, the primary advantage of terminal weaning cited is that patients do not develop signs of upper airway obstruction during the withdrawal process. Terminal weaning can be viewed as less abrupt and disruptive than terminal extubation, reducing the anxiety of family and caregivers. On the other hand, terminal extubation can be viewed as not prolonging the dying process, and allowing a natural death and peace for the patient.

Frequency of Palliative Sedation Because the definition of palliative sedation is so varied, it is difficult to determine how often palliative sedation at end of

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life occurs in practice. Estimates range from 10 to 52, varying by definition and practice sites.5–8,24,25

Withholding or Withdrawing Life Supports Approximately one-half of patients who die in hospitals have been cared for in an ICU within the previous 3 days, and onethird of these patients spend at least 10 days in ICU during their final hospitalization.26 In the United States, approximately 22 of all hospital deaths occur in an ICU.27 The majority of ICU deaths involve withholding or withdrawing life-sustaining treatments, although there are wide geographic variations.28,29 A 1997 survey of the American Thoracic Society’s critical care section revealed that 96 of the physicians who responded reported that they had withheld or withdrawn some form of life support.29 A survey by Luce and Prendergast demonstrated wide geographical variations in the proportion of deaths in ICUs that are preceded by withdrawal of life support (0 to 79) and the proportion of deaths that are preceded by a donot-resuscitate (DNR) order (0 to 83).29,30

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Reasons for Palliative Sedation Deep sedation is a usual and accepted standard of practice prior to surgery or an extremely painful or highly distressing procedure. However, sedation at end of life has not the same level of acceptance.14,17,31–33 Common symptoms at the end of life include pain, dyspnea, delirium, nausea, and vomiting, as well as feelings of hopelessness, remorse, anxiety, and loss of meaning.5,6 Palliative sedation is most commonly used and accepted for the relief of refractory physical symptoms. Claessens and colleagues, in a literature review of palliative sedation, found that the majority of practitioners listed physical symptoms as the reasons for sedation at end of life, with a smaller number indicating existential suffering as the reason for sedation. The most common physical symptoms were listed as delirium, dyspnea, and pain. The nonphysical symptoms were feelings of meaninglessness, being a burden, dependency, death anxiety, and wishing to control the timing and manner of death.18 Fainsinger and associates, in a multicenter international study, found that 1 to 4 of terminally ill patients needed sedation for pain, 0 to 6 for nausea and vomiting, 0 to 13 for dyspnea, and 9 to 23 for delirium.34 Multiple physical and psychological symptoms are common.13 Chater and colleagues surveyed a number of palliative care experts and asked a series of questions regarding symptoms and palliative sedation in their patients, These clinical experts reported that half of their patients had more than one symptom and that 34 received sedation for nonphysical symptoms such as anguish, fear, panic, anxiety, terror, and emotional, spiritual or psychological distress.9 Various factors that may affect varying standards of practice for palliative sedation include the physician’s philosophy of what constitutes a “good death,” personal and/or

professional experiences, religious beliefs, and level of fatigue or burnout.34,35 Although there is no consensus on the use of palliative sedation for existential suffering, literature suggests that its use in these circumstances may be increasing.24,34 Ganzini and colleagues reviewed Oregon physician’s perceptions of reasons for patients request for a hastened death and found avoidance of dependency on others and wanting to control the timing and manner of their death frequently cited.36 In the ICU setting, reasons for palliative sedation are related to both refractory symptom management and terminal weaning from a ventilator.

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Medications and Monitoring Drugs most commonly used for palliative sedation outside the ICU setting are benzodiazepines, neuroleptics, barbiturates, and anesthetics.7,8,13,16 Midazolam is the most commonly used of these drugs.7,37,38 The drug and route chosen vary based on the route available, location of the patient, and cost, as well as the preference of the provider.7 Usually in inpatient settings the medications are given intravenously or subcutaneously and continuously. In general, the chosen medication is started at a low dose and titrated upward rapidly until the symptom is controlled and the patient does not evidence signs of distress. Classes of medications used and routes of administration are presented in Table 26–2. Dose ranges are highly variable and determined by the patient’s weight, renal and hepatic function, state of hydration, concurrent medication use, and other variables. The right dose is the dose that results in the patient resting comfortably without showing evidence of distress. It is recommended that doses be started low and titrated at approximately 30 an hour until sedation is achieved and the desired Richmond Agitation–Sedation Scale (RASS) level is reached39 (Table 26–3). The type of medication that can be administered by nurses may be influenced by state regulatory rules. The drugs used for refractory symptoms and terminal weaning in the ICU include opiates, benzodiazepines, neuroleptics, and anesthetics.2,19,21,22,40–42 These drugs can be continually infused and titrated until the patient appears comfortable. Morphine or other opioids are used to provide analgesia and reduce dyspnea. Propofol is a general anesthetic but can be used at sedative doses for ICU patients. Propofol is a good drug of choice because of its rapid onset and rapid offset. Haloperidol is used in the treatment of delirium, and can be combined with opiates and sedative agents to manage acute agitation or to protect against delirium in vulnerable patients.22 The drugs of choice for deep sedation are usually classified as anesthesia medications, and therefore can only be used in monitored settings. Copies of protocols and sample orders for palliative sedation from a major Cancer Center are included in Appendices 26–1 through 26–3. If the patient is on a neuromuscular-blocking agent this should be discontinued before the patient is removed from the ventilator.42,43 Neuromuscular blockades make it


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Table 26–2 Management of Distressing Physical Symptoms Symptom

Considerations Before Defining a Symptom as Refractory

Agitation and confusion

Discontinue all nonessential medications. Change required medications to ones less likely to cause delirium. Check for bladder distention and rectal impaction. Evaluate for undiagnosed or undertreated pain. Review role of hydration therapy. Consider evaluation and therapy for potentially reversible processes, such as hypoxia, hyponatremia, and hypercalcemia.

Pain

Maximize opioid, nonopioid, and adjuvant analgesics including agent, route, and schedule. Consider other therapies, including invasive/neurosurgical procedures, environmental changes, wound care, physical therapy, and psychotherapy. Anticipate and aggressively manage analgesic side effects.

Shortness of breath

Provide oxygen therapy. Maximize opioid and anxiolytic therapy. Review the role of temporizing therapy, including thoracentesis, stents, and respiratory therapy.

Muscle twitching

Differentiate from seizure activity. Remember the use of opioid rotation, clonidine, and benzodiazepines if muscle twitching is caused by high-dose opioids.

Source: Cowan and Palmer (2002), reference 7.

Table 26–3 Medications Used for Palliative Sedation Medication

Dose and Route

Comments

Benzodiazepines/ midazolam Lorazepam Neuroleptics/haloperidol

Loading dose of 0.5–5.0 mg, followed by 0.5–10 mg/h continuously infused IV or SQ 0.5–5.0 mg every 1–2 h PO, SL, or IV Loading dose of 0.5–5.0 mg PO, SL, SC, or IV, followed by an IV bolus of 1–5 mg every 4 h or 1–5 mg/h continuously infused IV or SQ 12.5–25.0 mg every 2–4 h PO, PR, or IV 60–200 mg PR every 4–8 h; loading dose of 2–3 mg/kg bolus IV, followed by 1–2 mg/kg/h continuously infused IV Loading dose of 200 mg, followed by 0.5 mg/kg/h continuously injected SQ or IV Begin with 2.5–5.0 μg/kg/min and titrate to desired effect every 10 min by increments of 10–20 mg/h

Monitor for paradoxical agitation with all benzodiazepines — Monitor for extrapyramidal side effects

Chlorpromazine Barbiturates/ pentobarbital Phenobarbital Anesthetics/propofol

More sedating than haloperidol Do not mix with other drugs when given IV — —

IV, intravenously; SQ, subcutaneously; PO, per os; SL, sublingually, PR, per rectum. Source: Lynch (2003), reference 8.

extremely difficult to assess a patient’s comfort level because their use prevents spontaneous movement. The patients may be experiencing pain, respiratory distress, and/or anxiety, but may be unable to communicate their distress. Because neuromuscular blockade can take several days to clear, ventilator support is occasionally withdrawn despite the presence of a neuromuscular blockade. This is not common practice. In such a situation death is expected to be rapid and certain after removal of the ventilator. A practitioner skilled in palliative sedation and vent withdrawal must be present at all

vent withdrawals, and if possible a respiratory therapist also skilled in this area should be present.

Assessment Tools to Measure Sedation and Agitation Assessment tools to measure sedation and agitation are important in assessing and managing levels of consciousness in patients undergoing palliative sedation. The Richmond Agitation–Sedation Scale (RASS) has demonstrated validity and reliability in medical and surgical, ventilated and

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nonventilated patients, and in sedated and nonsedated adult ICU patients.39 The RASS assessment scale is also being used in some Palliative Care Units to assess and monitor patients undergoing mild or intermediate sedation.

Guidelines for Palliative Sedation Institutional guidelines are important for palliative sedation and vent withdrawal so that there is a consistent standard of care and essential education for all involved practitioners can be provided.7,25 Table 26–4 is a sample checklist for palliative sedation. Table 26–5 is a sample checklist used in an ICU setting for terminal weaning. Four factors need to be present for a patient to be considered for palliative sedation. First, the patient is terminally ill; second, the patient has severe symptoms that are refractory to treatment and intolerable to the patient, and a palliative care expert agrees that the symptoms are intractable; third, a DNR order is in effect; and fourth, death is imminent (within hours to days), although this can be challenging to determine.7,8 If the first three conditions exist, sedation may be appropriate for a patient in severe distress who has been unresponsive to skilled palliative interventions. Ethics consultations or patient advocate services have been found to be useful if there is conflict about goals of care and appropriate care of someone near to death, especially in the ICU setting.44

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Palliative Sedation Checklist A major role of the palliative care team is to assist families in making the transition in treatment goals from cure to comfort. Refractory symptoms and the distress they cause can create a very difficult and abrupt need for this transition phase. Use of the interdisciplinary team to both plan for treatment options and participate in family meetings is critical to the success of the team. The social worker plays an important role in assessing caregiver stress and family dynamics, and coordinating family meetings. The chaplain and other psychosocial professionals provide spiritual assistance and counseling and support the decision-makers through anticipatory and actual grief. The nurse is a consistent presence and skilled resource to the patient and family.

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Nursing Care: Back to Basics Communication An important role of the nurse in the end of life process is to facilitate communication and establish trust between the patient, family members, and health care providers.45 Communication is vital to developing a relationship of trust and avoiding conflict during any illness, but it becomes even more important when dealing with end of life issues. The team

Table 26–4 Palliative Sedation Checklist Part A. Background — Confirm patient has • Irreversible advanced disease. • Apparent imminent death within hours, days, or weeks. • A “do not attempt resuscitation” order. — Confirm that symptoms are refractory to other therapies that are acceptable to the patient and have a reasonable/ practical potential to achieve comfort goals. — Consider obtaining a peer consultation to confi rm that the patient is near death with refractory symptoms. — Complete informed consent process for palliative sedation (PS). — Discontinue interventions not focused on comfort. • Discontinue routine laboratory and imaging studies. • Review medications, limit to those for comfort, and adjust for ease of administration (timing and route). • Discontinue unnecessary cardiopulmonary and vital sign monitoring. • Review the role of cardiac support devices (e.g., pacemaker) and disable functioning implanted defibrillators. • Integrate a plan to discontinue ventilator support with PS. — Develop a plan for the use or withdrawal of nutrition and hydration during PS. — Identify a location and an environment acceptable for providing PS. — Use providers familiar with PS and the use of sedatives. Part B. Treatment/care of the patient — Institute and maintain aspiration precautions. — Provide mouth care and eye protection. — Use oxygen only for comfort, not to maintain a specific blood oxygen saturation. — Provide medications primarily by IV or SQ route. — Maintain bowel, bladder, and pressure point care. — Continue, do not taper, routine opioids. — Provide sedating medication: • Around the clock. • Titrate to symptom control not level of consciousness, using frequent re-evaluation. • Limit vital sign monitoring to temperature and respiratory rate for dyspnea. — Choose sedating medication based on provider experience, route available, and patient location. Home initial dosing (choose one): • Chlorpromazine, 25 mg suppository or 12.5 mg IV infusion every 4–6 h. • Midazolam, 0.4 mg/h by continuous IV or SQ infusion. • Lorazepam, 0.5–2.0 mg IV sublingually every 4–6 h. Hospital initial dosing (choose one): • Chlorpromazine, 12.5–25.0 mg every 4–6 h. • Midazolam, 0.4 mg/h by continuous IV or SQ infusion. • Amobarbital or thiopental, 20 mg/h by continuous IV infusion. • Propofol, 2.5 mg/kg/min by continuous IV infusion. Source: Lynch, (2003), reference 8.

Table 26–5 Checklist for Intensive Care Unit Personnel End-of-Life Criterion Assessment

MET

NOT MET

1. Determine that primary physician, critical care physician, family and possibly patient are in agreement with discontinuation of life sustaining treatment. 2. Assist family in preparation or fulfi llment of familial or religious predeath rituals. 3. Place, “do not resuscitate” orders on chart. 4. Turn off neuromuscular blockade agents (e.g., paralytics). 5. Provide a calm, quiet, restful atmosphere free of medical devices and technology for the patient and family, including dimming the lights in the room. 6. Turn off arrhythmia detection and turn off or decrease all auditory alarms at bedside and central station. 7. Remove all monitoring equipment from patient and patient’s room except for the electrocardiograph (ECG). 8. Remove all devices unless the removal of the device would create discomfort for the patient (e.g., sequential compression device, nasogastric tube). 9. Remove or discontinue treatments that do not provide comfort to the patient. 10. Obtain orders to discontinue test and laboratory studies. 11. Liberalize visitation. 12. Notify respiratory therapist of end-of-life care. 13. Notify chaplain and social worker of end-of-life care; obtain grief packet from chaplain. 14. Determine that family participants in the end-of-life process are present, if appropriate; place sufficient chairs in the patient’s room for family members. 15. Maintain the patient’s personal comfort and dignity with attention to hygiene, hairstyle, and providing moisturizers for lips and eyes. 16. Gather ordered sedation and analgesics. Frequent assessment of the patient’s condition assists in titrating medications per end-of-life protocol and level of patient discomfort. 17. Document the patient’s signs and symptoms that indicate discomfort, including but not limited to the following: Grimacing Agitated behavior Increased work of Altered cognition breathing Anxiety Irritation Autonomic hyperactivity Moaning Confusion Pain Coughing Perspiration Dyspnea Tachypnea Restlessness Tension Self-report of symptoms Trembling Splinting Stiff ness Tachycardia 18. Remain at bedside to a. assess patient for comfort/discomfort. b. promptly administer sedation, analgesics. c. provide emotional support to patient and family. d. ask patient/family if additional comfort measures are needed. 19. Obtain physician orders for additional or alterations in pain and sedation medications if the end-of-life protocol medications are ineffective in controlling the patient’s discomfort. 20. Respiratory therapist should remain in room until ventilator is function at minimal capacity or patient is extubated and the ventilator is removed from the room. 21. Support and educate the patient’s family regarding interpretation of the clinical signs and symptoms the patient may experience during the end of life. 22. Assess the family’s need to be alone with the patient during and after the death process. 23. Assess the family to determine the amount of support they require during the end-of-life process. 24. Assist the family in meeting its needs and the patient’s needs for communication, fi nal expressions of love and concern (e.g., holding a hand, talking with the patient, remembering past events). (continued)

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Table 26–5 Checklist for Intensive Care Unit Personnel End-of-Life Criterion (continued) Assessment

MET

NOT MET

25. Discuss signs of death and how the physician will pronounce the patient; the family will be asked to leave the room while the physician examines the patient. 26. If the patient is transferred to the general care floors during end-of-life care, provide the accepting nurse a verbal report and discuss the dosage of IV medications and the signs and symptoms for medication titration. Suggest to the critical care physician or attending physician a patient referral to or consultation with palliative care services. 27. Notify intensive care unit physician to pronounce patient. An ECG strip of a straight line or asystole is not needed to document patient death. 28. Notify primary care physician. 29. Assist family with decisions regarding need for autopsy. 30. Notify clinical nurse specialist Monday through Friday before 3 P.M. to complete death paperwork. 31. Notify in-house administrator after 3 P.M. and on weekends to complete death paperwork. 32. Notify chaplain, if chaplain not present. 33. If the patient is to have an autopsy, leave all tubes in place; if no autopsy, remove all tubes (IV lines may be clamped instead of removed). 34. Permit family visitation after the patient has been cleaned and tubes removed. 35. Prepare patient for the morgue, shroud etc. MET, Indicates that the individual is prepared, follows suggested steps in appropriate sequence, and demonstrates minimal safe practice; NOT MET, Indicates that the individual is unprepared, needs repeated assistance or suggestions in order to proceed, and or omits necessary steps. Source: M.D. Anderson Cancer Center, Houston, Texas. Reprinted with permission.

has to build a trusting relationship with patients and families as they make difficult decisions together. If the patient or family members do not trust the health care team, conflict is likely. Communication includes: (1) being honest and truthful; (2) letting the patient and family members know they will not be abandoned; (3) including them in care decisions; (4) helping the patient and family explore all options; (5) asking them to clearly define what they need from the team; (6) working to ensure that the entire team knows and understands the plan; and, most important, (7) practicing active listening when talking to the patient and family members.45 In a qualitative study examining nurses’ perceptions of palliative sedation, two factors made nurses more comfortable with their role in the dying process. The first was how well the nurse knew the patient as a person, and the second was the interdisciplinary team collaboration.46 When the decision is made to use either palliative sedation or terminal weaning, caring and thoughtful communication make a tremendous difference in the family’s experience with the death of their loved one. The patient and/or family health care agent are central in this decision, and need ongoing reassurance that the decision made is the right one. They may need frequent confirmation that the person is dying of their disease, and that the intent of the sedation is to ensure a peaceful death but not to hasten death. The concept of “presence” with the patient and family during the death vigil is difficult to quantify, but critical during periods of extreme distress.47,48 Untreated symptoms cause families and staff to be traumatized by a “horrible death.” The family may fear that this “final event” will be equally traumatic. They don’t want their loved one to suffer any more. They need constant

explanations and reassurance about what to expect, what is happening, and the opportunity to express their grief.7

Physical care As the patient becomes more sedated, protective reflexes decrease. The ability to clear secretions decreases. This can be anticipated, and appropriate medication should be given proactively. Suctioning is kept to a minimum and only done if really necessary. The blink reflex also decreases and eyes can become dry, requiring frequent eye drops (artificial tears). Bowel and bladder management needs to be carefully monitored to maintain comfort. A urinary catheter is often appropriate to minimize the need for frequent changing and cleaning, and to prevent skin breakdown. General nursing care for immobilized patients is especially important; mattress pads that decrease pressure, excellent skin care, and attention to positioning are all needed. Allowing the family to participate in the basic comfort care of their loved one at end of life, such as bathing, brushing the hair, and applying a lubricant to the lips, can be quite meaningful to some family members. Other family members may prefer not do help with physical care and they should be reassured that their presence alone, even if in spirit only, is equally important.

Terminal Weaning Special Considerations in the Intensive Care Unit Conversations with the family prior to the weaning process are essential so they know what to expect and can be present for

Sedation for Refractory Symptoms and Terminal Weaning the weaning if they so chose. In addition, friends may want to visit to say their goodbyes before the terminal weaning takes place. Immediately before terminal weaning, the physician and nurse should again briefly review the procedure and answer any questions the patient and/or family members may have. In some institutions a respiratory therapist is always present for terminal weans; their presence is part of the institutional protocol. If a family member wants to be present during the terminal weaning process, a social worker and or nurse should be present solely to take care of the family. Chaplaincy may also be present if that is appropriate for this particular family. Members of the interdisciplinary team should be familiar with the terminal weaning process, so that they can be consistent in the information that they give to the family, to reassure the family that the patient will not suffer, and that medication will be immediately administered if there is any sign of distress. Before beginning the weaning process, physiological monitoring alarms should be deactivated and unnecessary tubes or equipment removed. Unnecessary medications (i.e. those not related to symptom control) should also be discontinued. Each step should be explained to the family, questions answered, and reassurance given. Before extubation, appropriate medications are administered to ensure symptom control and the necessary level of sedation. Frequently opioids are used for dyspnea, and benzodiazepines for anxiety. The need for additional medications must be anticipated and readily available if needed. Oxygen is frequently set at 21. The patient is constantly monitored for any signs of distress and medicated accordingly. The nurse’s presence is critical in this monitoring process. Once the patient appears comfortable, if the patient is to be extubated, the physician removes the endotracheal tube. Throughout this process, the nurse should allow space for the patient’s family at the bedside. The decision to stay at the bedside or not is a personal decision, and it is important that the nurse validates and supports whatever decision is made by each family member. The family, if appropriate, and with coaching beforehand, can be encouraged to assist with the patient’s care by wiping the patient’s forehead, holding the patient’s hand, and/or talking soft ly to the patient reassuring them that they are there. Chaplaincy and or other psychosocial support should be available to the family throughout the process. After the patient dies, the family should be allowed adequate time with their loved to say their goodbyes and move to the next phase in the grieving process. Debriefing following the patient’s death allows the family to go over what happened, have their questions answered once more, and be supported by those who were present during the terminal wean. Ensuring ongoing bereavement support for the family is an important nursing role.

Time to Death Palliative Sedation One of the concerns many people have with palliative sedation is that it might hasten death. Part of this concern stems

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from the difficulty in predicting the time of death. Several studies using different methodologies have examined effects of sedation on survival rates.49,50 The mean time-to-death in a large 4-country study ranged from 1.9 to 3.2 days,34 and the median time to death in a Taiwanese study was 5 days.51 A study of patients in Japanese hospices indicated that sedating medications did not shorten lifespan.49 However, because of ethical considerations none of these studies were controlled trials, so it is not possible to determine whether sedation may or may not result in hastening the death. In situations of unbearable distress, sedation remains an appropriate option to relieve suffering.

Ethical Considerations Concerning Palliative Sedation and Terminal Weaning Palliative sedation is a medical therapy for the imminently dying when pain and suffering are intolerable, and other interventions have proved inadequate. Intent is the critical issue, and separates palliative sedation at end of life from assisted dying and euthanasia. With sedation the intent is to produce somnolence and relieve suffering, not hasten death. In assisted dying—where the intent is to produce death to relieve suffering—the agent is the patient. In euthanasia—the intent is to produce death to relieve suffering—the agent is another. The ethical and legal principles that apply to palliative sedation are patient autonomy (patient’s choice), beneficence (do good), nonmaleficence (do no harm), and the principle of double effect.7,16,52–56 The reader is referred to Chapter 62 for a more in-depth discussion on ethical principles and issues in palliative care and end of life care. In 1997, the U.S. Supreme Court ruled unanimously that “there is no constitutional right to physician-assisted suicide” but “terminal sedation is intended for symptom relief and not assisted suicide . . . and is appropriate in the aggressive practice of palliative care.”57,58 The American Nurses Association and the Oncology Nursing Society have Position Papers opposed to physician-assisted suicide.59,60Although neither of the Position Papers address the exact issue of palliative sedation or terminal weaning, both support the risk of hastening death through treatments aimed at alleviating suffering or controlling symptoms, as ethically and legally acceptable. The Hospice and Palliative Nurses Association has issued a Position Paper in support of palliative sedation.53 The use of palliative sedation for existential suffering remains controversial.5 The ethical principles that apply to withdrawal of mechanical ventilation are patient autonomy, nonmaleficence, and beneficence. However, terminal weaning can be disturbing for those who do not understand the principles that guide caregivers’ actions, which includes respect for the patient’s right to discontinue unwanted treatment including ventilator withdrawal. In addition, the terminal weaning process can be more difficult for the caregiver if the patient is awake and alert enough to participate in the decision to withdraw life support, but the guiding principles remain the same.

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Informed Consent Informed consent is always a process. A patient’s symptoms may have been difficult to control over time and may have escalated as the patient’s disease has progressed. Patients (or their agents when they cannot speak for themselves) must always be involved in these decisions. Palliative sedation involves an important trade-off between symptom control and alertness, and different patients will weigh this differently. The need for sedation may be a palliative care emergency to relieve distress, and consent would be similar to obtaining consent in any other emergency situation. A family meeting to discuss the situation would then follow. A family meeting includes a well planned, compassionate, and clear discussion with the patient and family about the patient’s goals and values in the setting of end of life care. The bedside nurse is an important participant in these meetings to provide insight into the care and support needed by the family. It is important to plan these meetings carefully if at all possible, to ensure that the appropriate family members are present. Allowing the designated decision-maker to invite significant people to the planned meeting allows key participants to hear the information at the same time. A religious or spiritual representative can be helpful at these meetings, if the family so desires. The primary physician usually begins the family meeting with a brief, clear report on the current condition of the patient. Supporting documentation of the current condition, such as recent laboratory data or other diagnostic test results, may be helpful to some families. The patient and or family should be provided all the time necessary to raise concerns, clarify information, and have their questions answered. The same questions may be raised time and time again to different team members, and need to be answered with consistent information to reduce uncertainty. Next, the treatment options should be discussed. When discussing terminal sedation options, it is important to assess the patient’s and family’s cultural and religious beliefs and concerns. Documentation in the chart should include the parties present, the reason for sedation (symptom distress), and the primary goal (patient comfort), as well as patient terminal status, notation of any professional consultations, documentation that the patient is near death and has refractory symptoms, planned discontinuance of treatments not focused on comfort, plan regarding hydration and nutrition, and anticipated risks or burdens of sedation.7 Either at the end of the family meeting, or the next day in nonemergency cases, some institutions require that an informed consent document is signed by the patient, family, or health care agent. Because it usually is not possible to communicate verbally with the sedated patient, it is important to make sure that the patient and family are given time to talk with each other and say their goodbyes, if that is possible, prior to proceeding with sedation. A well-planned family meeting decreases miscommunication and supports the family during a difficult decision-making time by allowing all pertinent parties to hear the same information at the same

time. The decision for palliative sedation or terminal wean is a patient/agent/family decision (whoever is the decisionmaker) with guidance from the palliative care team. In the ICU setting, there should also be a succinct description of the terminal weaning process. One of the most common reasons for withholding or withdrawing life support is that the patient has a very poor prognosis and is unlikely to improve.61 Although there are published guidelines for withholding and withdrawing life support, the actual implementation of such measures is often difficult for the health care team members as well as the patient and family. Physicians may have a difficult time discussing such interventions with patients and families, and this in turn may lead to the continuation of treatments that are medically inappropriate, increase suffering, or are futile. The patient and family members must be allowed sufficient time to reach a consensus about whether to discontinue life support. It is their decision. This is a process that is made easier by the provision of consistent, compassionate, accurate information about the patient’s prognosis and likely course. Ongoing nurse–physician communication is essential so that the patient, where possible, and the family, is given consistent information about the patient’s status. Clear documentation as indicated earlier is also essential so that all members of the team and others involved in the patient’s care are clear about the goals of care and treatment plan.

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The Nurse Caregiver In a literature review examining the experience of nurses caring for terminally ill patients in ICU settings, several barriers related to provision of terminal care were identified. These included: (1) lack of involvement in the plan of care and comfort; (2) disagreement among physicians and other health care team members; (3) inadequacy of pain relief; (4) unrealistic expectations of families; (5) personal difficulty coping; (6) lack of experience and education; (7) staffing levels; and (8) environmental circumstances.62 In a Japanese study of 2607 nurses involved in palliative sedation, 37 reported they wanted to leave their current jobs because of the burden of palliative sedation; 12 reported that their involvement in palliative sedation made them feel helpless; and 11 would avoid a patient who is being treated with palliative sedation if possible. This study concluded that a significant number of nurses felt serious emotional burdens related to palliative sedation.63 Nurses who work with patients requiring palliative sedation and terminal weaning are at increased risk of burnout if not intimately involved with the team decision-making process. In addition, if left out of decision-making processes such as the team planning and family conferences, they are denied the information needed for effective counseling at the patient’s bedside.64 A formal and informal support system for nurses as well as education in end of life care, spiritual support, and individual support are essential.

Sedation for Refractory Symptoms and Terminal Weaning An interdisciplinary team meeting after the death of the patient can function as both a learning experience and a debriefi ng session. Working in an environment that recognizes the need for support and education of staff, and one that recognizes the importance of mentors and advance practice nurses, allows nurses to face these challenges as they arise.

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Conclusion Although nurses and other health care practitioners may disagree about what a “good death” is, there is general agreement about what is a “bad death.” Palliative sedation and terminal weaning are a necessary option for a small number of patients with refractory and intolerable symptoms and suffering at end of life. These options are part of the spectrum of palliative care and are ethically and legally supported. However, the ability to determine refractoriness of symptoms can be complicated and is largely dependent on the skills of the practitioner and the tools available to manage complex symptoms. Nurses have a central role in ensuring that a dying patient undergoing palliative sedation or ventilator withdrawal has his or her symptoms well controlled, and that the family members are well supported. Education of palliative care nurses in these areas is essential.

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30. Luce JM, Prendergast TJ. The changing nature of death in the ICU. In: Curtis JR, Rubenfeld GD, eds. Managing Death in the Intensive Care Unit. New York: Oxford University Press, 2001:19–29. 31. Sykes N, Thorns A. Sedative use in the last week of life and the implications for end of life decision making. Arch Intern Med 2003;163:341–344. 32. Jansen LA, Sulmasy DP. Sedation, alimentation, hydration, and equivocation: Careful conversation about care at the end of life. Ann Intern Med 2002;136:845–849. 33. Hallenbeck JL. Terminal sedation: Ethical implications in different situations. J Palliat Med 2000;3:313–320. 34. Fainsinger RL, Waller A, Bercovici M, Bengtson K, Landman W, Hosking M, Nunez-Olarte JM, deMoissac D. A multicentre international study of sedation for uncontrolled symptoms in terminally ill patients. Palliat Med 2000;14:257–265. 35. Breitbart W, Bruera E, Chochinov H, Lynch M. Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer. J Pain Symptom Manage 1995;10:131–141. 36. Ganzini L, Dobscha SK, Heintz RT, Press N. Oregon physicians’ perceptions of patients who request assisted suicide and their families. J Palliat Med 2003:6:381–390. 37. De Graeff A, Dean M. Palliative sedation therapy in the last weeks of life: A literature review and recommendations for standards. J Palliat Med 2007;10(1):67–87. 38. Cheng C, Roemer-Becuwe C, Pereira J. When midazolam fails. J Pain Symptom Manage 2002;23:256–265. 39. Sessler CN, Jo Grap M, Ramsay MA. Evaluating and monitoring analgesia and sedation in the intensive care unit. Crit Care 2008;12 Suppl 3:15. 40. Hospice & Palliative Care Federation of Massachusetts. Palliative Sedation Protocol: A report of the Standards and Best Practice Committee Hospice & Palliative Care Federation of MA, 2004. 41. Truog RD, Berde CB, Mitchell C, Grier HE. Barbiturates in the care of the terminally ill. N Engl J Med 1992;327:1678–1681. 42. Truog RD, Burns JP, Mitchell C, Johnson J, Robinson W. Sounding board: Pharmacological paralysis and withdrawal of mechanical ventilation at the end of life. N Engl J Med 2000;342:508–511. 43. Rushton CH, Terry PB. Neuromuscular blockade and ventilator withdrawal: Ethical controversies. Am J Crit Care 1995;4:112–115. 44. Schneiderman LJ, Gilmer T, Teetzel HD, Dugan DO, Blustein J, Cranford R, Briggs KB, Komatsu GI, Goodman-Crew P, Cohn F, Young EWD. Effects of ethics consultations on nonbeneficial life-sustaining treatments in the intensive care setting. JAMA 2003;209:1166–1172. 45. Matzo ML, Sherman DW, Sheehan DC, Ferrell BR, Penn B. Communication skills for end of life nursing care. Nurs Educ Perspect 2003;24:176–183. 46. Beel AC, Hawranik PG, McClement S, Daeninck P. Palliative sedation: Nurses’ perceptions. Int J Palliat Nurs 2006;12(11):510–518.

47. . Pitorak EF. Care at the time of death: How nurses can make the last hours of life a richer, more comfortable experience. Am J Nurs 2003;103:42–53. 48. Walsh SM, Hogan NS. Oncology nursing education: Nursing students’ commitment of “presence” with the dying patient and the family. Nurs Educ Perspect 2003;24:86–90. 49. Morita T, Tsunoda J, Inoue S, Chihara S. Effects of high-dose opioids and sedatives on survival in terminally ill cancer patients. J Pain Symptom Manage 2001;21:282–289. 50. Rousseau P. The ethical validity and clinical experience of palliative sedation. Mayo Clin Proc 2000;75:1064–1069. 51. Chiu TY, Hu WY, Lue BH, Cheng SY, Chen CY. Sedation for refractory symptoms of terminal cancer patients in Taiwan. J Pain Symptom Manage 2001;21:467–472. 52. A report by the National Ethics Committee of the Veterans Health Administration. The Ethics of Palliative Sedation, 2006. 53. Hospice and Palliative Nurses Association. Position paper: Palliative sedation at the end of life. J Hosp Palliat Nurs 2003;5:235–237. 54. Hayes C. Ethics in end of life care. J Hosp Palliat Nurs 2004;6:36–43. 55. Gallagher A, Wainwright P. Terminal sedation: Promoting ethical nursing practice. Nurs Stand 2007;21(34):42–46. 56. Quill TE, Dresser R, Brock DW. The rule of double effect: A critique of its role in end of life decision making. N Engl J Med 1997;337:1768–1771. 57. Orentlicher D. The Supreme Court and physician-assisted suicide: Rejecting assisted suicide but embracing euthanasia. N Engl J Med 1997;337:1236–1239. 58. Burt RA. The Supreme Court speaks: Not assisted suicide but a constitutional right to palliative care. N Engl J Med 1997;337:1234–1236. 59. American Nurses Association. Code of Ethics for Nurses with Interpretive Statements. Washington, DC: American Nurses Association, 2001. 60. Oncology Nursing Society. Position statement on the nurse’s responsibility to the patient requesting assisted suicide, 2001. Available at: http//www.ons.org/publications/positions/ AssistedSuicide.shtml (accessed January 6, 2005). 61. Keenan SB, Busche KD, Chen LM, McCarthy L, Inman KJ, Sibbald WJ. A retrospective review of a large cohort of patients undergoing the process of withholding or withdrawal of life support. Crit Care Med 1997;25:1324–1321. 62. Espinosa L, Young E, Walsh T. Barriers to ICU nurses providing terminal care: An integrated literature review. Crit Care Nurse 2008;31:83–93. 63. Morita T, Miyashita M, Kimura R, Adachi I, Shima Y. Emotional burden of nurses in palliative sedation therapy. Palliat Med 2004;18:550–557. 64. Frederich ME, Strong R, von Gunten CF. Physician-nurse conflict: Can nurses refuse to carry out doctor’s orders? J Palliat Med 2002;5:155–158.


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APPENDIX 26–1 End-of-life Protocol Introduction The Intensive Care Unit (ICU) healthcare team provides complex medical and nursing interventions to stabilize and improve the physical status of critically ill patients. However, there are frequent situations in which the patient cannot be stabilized, their status cannot be improved or continued lifesustaining interventions would be medically inappropriate. The end-of-life Protocol is a guide and educational tool for the ICU healthcare team. Consequently the patient will benefit from expert, competent, compassionate, consistent end of life care. The end-of-life Protocol should be initiated subsequent to a patient care conference and a written DNR order.

Definitions ICU healthcare team—The ICU healthcare team is multidisciplinary and the participants vary according to the needs of the patient or family. Members may include: physicians, nurses, social worker, respiratory therapist, ethicist, dietician, physical therapy, pharmacist, chaplain, and others depending on the patient’s physical and mental status. Intensive care physician—The Intensive Care Physician supervising the initiation of the end of life Protocol will sign the End-of Life Orders and will be readily available to consult with the nurse and family during the patient’s end of life care. Contact alternate physician—If the Intensive Care Physician is unavailable during the patient’s endof-life care, the Intensive Care Physician will indicate a physician that will assume supervision of the patient’s care. This physician will be known as the Alternate Physician Contact and will be identified on the end of life Orders by name and pager number. Comfort measures—Comfort measures are interventions that ease the patient’s discomfort. Comfort measures may include: regulation of hypothermia or hyperthermia, oral care, basic hygiene, music therapy, control of pain and sedation. Family—Family includes spouse, mother, father, sibling, guardian, or any significant other to the patient. Patient care conference—The family and or patient meets with the Intensive Care Physician, Attending Physician, nurse, social worker and other appropriate members from the ICU healthcare team to discuss the patient’s medical status. The goal for the Patient Care Conference is to develop a plan of care that may include the end of life Protocol.

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Plan of care—The plan of care gives direction and prioritizes the care the patient receives. Signs and symptoms of discomfort—Signs and symptoms of discomfort include, but are not limited to: agitated behavior, altered cognition, anxiety, autonomic hyperactivity, confusion, coughing, dyspnea, grimacing, increased work of breathing, irritation, moaning, pain, restlessness, tachycardia, splinting, tenseness, self-report of discomfort, perspiration, stiffness, trembling and tachypnea. When appropriate—The terms “when appropriate” or “appropriate” in reference to the end of life Protocol defines a time when the patient, family and ICU healthcare team are present and prepared to initiate the steps outlined in the Protocol. The timing for Protocol initiation will accommodate the needs of the patient and family.

Purpose The purpose for the end of life Protocol is to guide the ICU healthcare team, promote consistency of care, and improve the quality of care provided during the patient’s end of life.

Goal The goal for the end of life Protocol is to maximize patient comfort and dignity without prolongation of life, extension of the dying process or hastening the dying process.

Objectives The end of life Protocol and care may include the following actions: • Create a quiet, calm, restful atmosphere with minimal medical devices and technology in the patient’s room. • Remove or discontinue treatments that do not provide comfort for the patient. • Provide controlled and comfortable end of life care for the patient. • Promote patient comfort with a variety of approaches including medications. • Provide physical, psychological, social, emotional, and spiritual resources for the patient and family. • Educate and support the patient’s family regarding the progression of end of life care and the interpretation of the clinical signs and symptoms the patient may experience. • Assist the family in meeting their needs and the patient’s needs for communication, final expressions of love, and concern. • Assist the family in fulfilling familial, cultural or religious death rituals.

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9= A P P E N D I X 2 6 – 2 Sample Institutional Policy on Palliative Sedation


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9= A P P E N D I X 2 6 – 3 Sample ICU end of life Orders

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27o]

Kate Kravits and Susan Berenson

Complementary and Alternative Therapies in Palliative Care I was a number one skeptic, but I was so desperate because the doctor threatened to put me in the hospital again. I decided I would try anything once.—L.W., bone marrow transplant patient

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Key Points Complementary therapies improve quality of life in patients with advanced cancer. Complementary therapies reduce physical, psychosocial, and spiritual symptoms and provide comfort. Complementary therapies offer the patient an opportunity to develop enhanced feelings of self-efficacy. Nurses bring hope and empower patients and families by providing education and guidance in the safe utilization of complementary therapies.

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Introduction to Complementary and Alternative Therapies There is worldwide use of complementary and alternative medicine (CAM) by cancer patients for many reasons (Table 27–1), but many oncologists and nurses that provide care for cancer patients have limited or no knowledge of these therapies or their benefits and risks. Complementary medicine has become an important aspect of palliative and supportive cancer care.1 The management of debilitating physical symptoms, particularly in terminally ill patients, is integral to good palliative care. When curative treatment is no longer an option, the emphasis of care shifts to palliation and symptom management. Comfort measures become the main focus.2 Many patients in the advanced stages of cancer seek treatments outside conventional medicine in hopes of a cure and better management of debilitating physical symptoms. Some CAM therapies can improve quality of life, such as management of pain, dyspnea, nausea and vomiting, fatigue, anxiety, depression, insomnia, and peripheral neuropathy, whereas others may be potentially harmful or useless. It is difficult, if not impossible, for most people to distinguish between reputable treatments and promotions of unproven alternatives pushed by vested interests. Understanding CAM is complicated because of its unfamiliar terminology, large numbers of available therapies, and the abundance of controversial anecdotal stories versus good research studies. It is confusing for patients, families, doctors and nurses to fi nd their way through to the most effective and safest choices. In this chapter, the focus is on the most helpful complementary therapies. Cancer is used as a model of chronic progressive disease. Most of the literature and research on CAM is related to cancer but can be expanded to cardiac, liver, and lung disease, diabetes, and other illnesses. Evidencebased complementary therapies are shown to affect patients’ 545

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Table 27–1 Reasons for Use of Complementary and Alternative Medicine

Table 27–2 Evidence-based Complementary Medicine Therapies for Symptom Control and Quality of Life

Poor prognosis Focus of care is comfort not cure Desire to be more active in one’s own health care Reduce side effects of treatment Reduce side effects of the disease Desire to cover all the options Suggestions by family/friends/society to try it Philosophical or cultural orientation Less expensive than conventional medicine Easier access to health food store than physician Dissatisfaction with or loss of trust in conventional medicine Desire to treat the disease in a “natural” way Hope of altering the disease progression Decrease the feelings of helplessness and hopelessness Improve the immune system Improve overall health Improve the quality of one’s life

Physical

Cognitive

Acupuncture Acupressure Aromatherapy Chiropractic medicine Exercise Massage Nutrition Polarity Qi gong Reflexology Reiki Shiatsu Therapeutic touch Yoga

Art therapy Biofeedback Creative visualization Focused breathing Guided imagery Hypnosis Meditation Music therapy Progressive muscle relaxation

physical, emotional, and spiritual well-being, in safe ways. Individuals who can participate in their care in the last stages of their illnesses are often more hopeful and positive than those who are passive participants. Patients in the advanced stages of their disease can participate in their care by knowing that they have options to promote comfort and quality of life. It is the role of nurses to educate themselves, their patients and families, to assist in critical decision-making related to CAM. The goals of this chapter are (1) to defi ne terms related to CAM; (2) to list, define, and describe the benefits and risks of the most common CAM therapies; (3) to emphasize the most beneficial, evidenced-based complementary therapies along with the supportive research; and (4) to describe the role of the nurse as educator, researcher, and clinical practitioner in the CAM setting. Patients look to their nurses to guide them to make informed and safe complementary therapy choices. Nurses can bring hope and a sense of empowerment to their patients and families by teaching, supporting, and encouraging the use of safe complementary therapies when indicated.

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Definitions The National Center for Complementary and Alternative Medicine defines CAM as “. . . a group of diverse medical and health care systems, practices, therapies, and products that are not presently considered to be part of conventional medicine.”3 “They range from adjunctive modalities that effectively enhance quality of life and promising antitumor herbal

remedies now under investigation, to bogus therapies that claim to cure cancer and that harm not only directly, but also indirectly by encouraging patients to avoid or postpone effective cancer care.”4 The list of what is considered to be CAM changes continually, as therapies that are proven to be safe and effective are adopted into conventional health care. Although they are grouped together, complementary and alternative therapies are very different. Complementary therapies are used together with conventional care. They are not promoted as cancer cures but are used as soothing, noninvasive therapies to provide comfort and enhance the quality of life for patients (Table 27–2). The goals of complementary cancer care are to promote relaxation, reduce stress and anxiety, relieve pain and other symptoms, reduce adverse effects of conventional therapies, and improve sleep.1 An example of a complementary therapy is the use of reflexology to help to lessen a patient’s anxiety as he or she awaits a painful procedure. In contrast, alternative therapies are used in place of surgery, chemotherapy, and radiation therapies. They are invasive, biologically active, and unproven, and are promoted as viable cures and alternatives to be used in place of mainstream cancer treatments.5 Some examples of alternative therapies are Laetrile, dietary cancer cures, oxygen therapy, and biomagnetics. There is not a single alternative intervention (as opposed to mainstream therapies) that has been demonstrated to constitute an effective cure for cancer. Alternative therapies can misguide, raise false hopes, and financially exploit patients, and may be associated with significant risks. They may prevent patients from seeking known, helpful medical oncological interventions.6 Integrative oncology medicine promotes the use of evidence-based complementary therapies along with mainstream cancer treatments. At a major comprehensive cancer center, Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City, Integrative Medicine practitioners of

Complementary and Alternative Therapies in Palliative Care massage, reflexology, Reiki, meditation, acupuncture, art therapy, and music therapy work with inpatients who have been self-referred or referred by doctors, nurses, or other hospital professionals. Outpatients are offered these same therapies along with nutritional counseling, yoga, Tai chi, Qi gong, and other exercise classes.

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History The history of medicine is filled with descriptions of persons using herbs, potions, and physical and spiritual manipulations to heal the sick. Traditional medicine came into being in the United States in the late 1890s when physicians began to develop the science of medicine, with a focus on cure. Anything other than the allopathic physician using science-based diagnosis and prescribing tested medicines began to be considered quackery.7 The healer became passé. Recently, however, there has been a resurgence of interest in the use of herbal and other CAM therapies that fall outside mainstream medicine. People are living longer with chronic diseases, cancer being one of them. Patients look to CAM therapies to help with quality of life, to allow them to participate in their own self-care, and to provide a glimmer of hope and maybe a cure. The increasing use of CAM by Americans prompted the United States Congress to establish in 1992 the Office of Alternative Medicine (OAM) as part of the National Institutes of Health (NIH). In 1998, the name was changed to the National Center for Complementary and Alternative Medicine (NCCAM), and a larger budget was assigned. NCCAM’s mission is to explore complementary and alternative healing practices in the context of rigorous science, to train CAM researchers, and to inform the public and health professionals about the results of CAM research studies.

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Prevalence General Population The use of CAM by the general population in the United States is common, widespread, and on the rise. In a national health interview survey conducted by the Centers for Disease Control and Prevention (CDC) in 2002, use of CAM therapies among U.S. adults was 36 when prayer was excluded, and 62 when prayer for health reasons was included.8 Some publications cite prayer as a CAM therapy. It is excluded from further discussion as a CAM therapy in this chapter. Other findings of the CDC study were that women are more likely than men to use CAM, black adults more likely than white or Asian adults, persons with higher educations more likely than those with lower education, and those who have been hospitalized in the past year more likely than those who have not been hospitalized.

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Cancer Population Among cancer patients, rates of CAM use are usually higher than in the general population. Ernst and Cassileth,9 in 1998, found that the average use in 26 surveys from 13 countries was 31.4, ranging from 7 to 64. They believed that lack of specificity and inconsistent defi nitions of CAM to have contributed to this variability. For example, some studies included counseling, group therapy, prayer, wellness regimens, and self-help efforts as CAM, whereas others counted these as mainstream therapies. Molassiotis et al. reported in 2005 the results of their study of 14 European countries. In that study, they found that 35.9 of the cancer patients used some form of CAM therapy.10 Another study reported 63 use of CAM therapies by adult cancer patients enrolled in an National Cancer Institute (NCI) clinical trial.11 Higher use among women and among patients with higher education was also observed. Sixty-two percent of the patients in this study reported that they would have liked to talk to their physicians about the use of these therapies, but 57 said that their physicians did not ask them about CAM therapies.

Rural Cancer Population One study looked only at the use of complementary therapies in a rural cancer population.12 Eighty-seven percent of the patients were using at least one complementary therapy, most commonly prayer, humor, support group, and relaxing music and visualization. Again, women were found to be more interested in CAM, but education and income did not seem to make a difference in this population.

Comprehensive Cancer Center In an outpatient clinic in a comprehensive cancer center, 83 of the patients had used at least one CAM therapy.13 When psychotherapy and spiritual practices were eliminated, 68.7 had used at least one other CAM therapy. Use of multiple CAM therapies with conventional treatment was widespread, disclosure of CAM to the physician was low, and seeking information about CAM was high.

Breast Cancer Patients The prevalence of CAM among breast cancer patients varies. In one study conducted in the United States, it is reported to range from 48–70.14 New use of CAM after surgery in patients with early-stage breast cancer (28.1) was thought to be a marker for greater psychosocial distress and worse quality of life.15 It was suggested that physicians take note of such usage and evaluate patients for anxiety, depression, and physical symptoms. The prevalence of CAM use among breast cancer survivors in Ontario, Canada, was 66.7 and was mostly associated with the hope of boosting the immune system.7,16 Women with breast cancer tended to use more

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CAM, compared to patients with other malignancies (63 versus 83, respectively).7,17 In the largest patient cohort to date (500 women with breast and gynecological cancers), 48 of the breast cancer patients used CAM therapies, and the number increased to 58 after patients who had recurrent disease were included.18 It is not possible from these studies to infer the reasons for the use of CAM therapies. Higher percentages may be indicative of the patients’ levels of distress, but they may also indicate the seeking of hope and attempts to control their situations.

Pediatric Population The 2007 National Health Interview Survey reports on the use of CAM therapies by adults and children. The results of this survey indicate that 12 of children use some form of CAM therapy with 23.9 using CAM therapies if their parents are using them as well.19 A 2003 study of CAM usage by pediatric cancer patients reported that 47 of the patients survey had used CAM therapies since diagnosis.20 This study also reported that the most commonly used therapies were faith healing, vitamins, massage, herbal medicines, and relaxation.20 Relaxation techniques and imagery were used to reduce chemotherapy side effects in children and adolescents.21 In one well controlled, randomized, non-blinded study, imagery was used with 73 pediatric patients to manage post-operative pain and anxiety. A significant reduction in both were reported.22 In another randomized, controlled clinical trial of hypnosis in 80 pediatric patients undergoing lumbar puncture, the results indicated that the participants experienced less pain and anxiety.23 Creative arts therapies, music therapy, art therapy, and movement therapy are used with the pediatric population, but due to the lack of well designed clinical studies, it is difficult to assess the impact of these therapies on the participants.24 Health care providers have a responsibility to provide education to families that are using or considering the use of complementary and alternative therapies. A comprehensive health assessment should include a discussion of other therapies used to manage illness, especially in light of the data suggesting a growing popularity of these therapies. There is some evidence from letters published in the New England Journal of Medicine25 that some parents choose alternative approaches where evidence of efficiency is lacking, rather than conventional evidence-based therapies. Use of conventional and alternative therapies simultaneously is also of concern, because there could be a harmful reaction between the two. The possibility that a patient is using CAM therapies calls for education and discussion with the patient and family in a nonjudgmental and collaborative manner about known risks and potential benefits of such therapies. Involving the health care team in these discussions through effective communication and documentation of dialogues can benefit the patient and family and lead to the use of these therapies in a safe and rational manner.26

Culture and Ethnicity There appears to be a relationship between ethnicity and CAM use. The 2007 National Health Interview Survey reports that 50.3 of American Indians/Alaska Natives had used CAM therapies within the last 12 months as compared to 43.1 of white adults, 39.9 of Asian adults, and 25.5 of black adults. Variations in use of CAM therapies by Hispanic populations were reported as Mexican adults 18.2, Puerto Rican 29.7, Mexican American 27.4, Dominican 28.2, and South American 23.4.19 In a diverse population in Hawaii, CAM use was highest among Filipino and Caucasian patients, intermediate among the Native Hawaiians and Chinese, and significantly lower among Japanese patients.27 The preferences were as follows: Filipinos, religious healing or prayer; Japanese, vitamins and supplements; Chinese, herbal therapies; Native Hawaiians, religious healing, prayer, vitamins, supplements, massage, and bodywork; and Caucasians, vitamins and supplements along with support groups and homeopathy. A study by Lee and associates28 on the use and choices of CAM by women with breast cancer in four ethnic populations revealed that blacks most often chose spiritual healing, Chinese chose herbal remedies, Latinas chose dietary therapies and spiritual healing, and whites chose dietary methods and physical methods such as massage and acupuncture.28 Another study of Navajo patients revealed that 62 used native healers but did not see a conflict between the use of a native healer and use of conventional medicine.29 These studies suggest that culture can influence CAM choices and should be considered when caring for patients.

Elderly Older adults are challenged by the physical consequences of the aging of their bodies. The United States, as well as many other countries around the world, is experiencing an aging population. It is important to understand how older adults use all of the types of health care resources available to them. Recent studies indicate that older adults use CAM therapies to manage their health care issues.19,30–33 In results reported in the 2002 National Health Interview Survey, Arcury and colleagues used logistic regression models to determine the impact of ethnicity, sex, age, education, and health conditions on the use of CAM therapies. Their results indicated that 27.7 of older adults use CAM therapies, with the highest levels of use by Asians (48.6).30 CAM therapy use by Hispanics reached a rate of 31.6, Whites 27.7, and Blacks 20.5. Older adults living in New York City were surveyed and their use of CAM therapies was reported as 58. The factors associated with CAM use in this population were gender (female), education, thyroid disease, and arthritis.31 In a survey of rural Caucasian and African American adults, results indicate use of CAM therapies by both groups with Caucasians using more CAM therapies than African Americans.32 Other reasons cited for the use of CAM therapies by older adults include pain relief, improved quality

Complementary and Alternative Therapies in Palliative Care of life, self-care and fitness.33 Older adults are using CAM therapies—education about CAM therapies is essential for promoting safe and effective use of these strategies. Health care providers have the responsibility to open a dialogue with all their patients about CAM therapies, so that appropriate consultation and education may take place.

Cost Most insurance companies do not reimburse for CAM. In the United States in 1997, it is estimated that individuals spent between $36 billion and $47 billion on CAM therapies. Of this amount, between $12 billion and $20 billion were paid out-ofpocket, with $5 billion spent on herbal products alone.3 The cost of CAM may prevent many patients from receiving these therapies. There is movement within the U.S. Congress to begin to acknowledge the value of these therapies and to reimburse for them. It is suggested that patients check with their insurance companies to see whether use of CAM can be reimbursed. There is hope that reimbursement will be soon forthcoming.

9= CASE STUDY Fred, A 51-year-old Gentleman 100 Days after Bone Marrow Transplant for Leukemia Fred is an active professional person who describes himself as a workaholic. He is thin and slightly unsteady on his feet. He is the father of three daughters between the ages of 33 and 18. His oldest daughter has severe health problems. Fred has been married for 25 years. He states that his social support comes from his wife, co-workers, and church community. Fred reports that he experienced a long period of frequent, apparently minor illnesses prior to being diagnosed with leukemia. He states that he made frequent visits to his health care provider with aching joints, cold-like symptoms, loss of weight, and a perception of losing strength. At the final hospital visit prior to his diagnosis, Fred insisted on staying in the hospital until he was told what was wrong with him. Ultimately, he was diagnosed with pneumonia and leukemia. Fred states that “It was a relief to know.” Fred was treated with a bone marrow transplant. Following the bone marrow transplant, Fred’s recovery progressed as expected except that Fred continued to experience loss of appetitie, nausea, and vomiting. He lost 2–3 pounds per week following discharge from the hospital. He was unable to participate in family activities such as joining them for meals. In order to cope with his nausea and vomiting, Fred began to isolate himself in his home office. Fred’s condition was monitored by his physician, who could not find an organic reason for the continued nausea and vomiting. Fred had lost 25 pounds by this time, and reported that he felt profoundly weak. The physician considered putting Fred in the hospital in order to manage his weight loss, nausea and vomiting. However, the

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physician was made aware of an opportunity for Fred to receive hypnosis for nausea control, and offered that option to Fred since nothing else they had tried seemed to have an impact. According to Fred, he was desperate to stay out of the hospital and was willing to try anything once, but he did not believe that the hypnosis would have any effect on his symptoms. He was referred to a nurse trained in providing hypnosis and an appointment was scheduled. During the initial session, the nurse and Fred took some time to explore his illness, treatment and recovery. Fred stated, “I feel useless.” He reported that images of food on TV and even thoughts of food triggered episodes of nausea and gagging. He described his eating habits, clearly stating he could eat easily in the morning, having cereal, fruit, or other cold foods. However, he could not eat meat at all—and if he allowed too long a period to pass between attempts to eat, he would not be able to eat. The nurse assessed the intentsity of his symptoms during the first session by asking Fred to complete a Visual Analog Scale rating distress, anxiety, appetite, and nausea. On a 0–10 scale with 0 = no symptoms and 10 = the worst possible symptoms, Fred rated his pre-intervention distress as 5, anxiety as 3.2, lack of appetite as 8.5, and nausea as 5.8. The nurse described hypnosis, and clarified for Fred the benefits and risks associated with the intervention. Fred’s questions and concerns were answered before beginning the intervention. The nurse, in collaboration with Fred, conducted a 20-minute guided hypnotic intervention using the metaphor of “sanctuary” as a foundation for creating relaxation and safety. A suggestion was given for deep breathing and repeating the word “sanctuary” to help restore a sense of relaxation and to decrease nausea. Following the intervention, Fred rated his symptoms using the visual analog scale with anxiety rated at 2.5, lack of appetite at 8.7, and nausea at 2.7. Fred returned in one week for a second session. He denied any episodes of vomiting and stated that he had been able to eat a meal with his family. His feelings of progress were reinforced at his doctor’s visit, as his weight had remained stable during this week. This was Fred’s first week without weight loss since discharge from the hospital. A hypnotic intervention was conducted in session two, and Fred was given an audiotape to listen to at bedtime. Session three was conducted a month after session two, and was the last face-to-face session. Fred’s weight remained stable and he was beginning to work with a personal trainer. He reported that, while he was able to eat, cooking odors still bothered him. The intervention was adjusted to include suggestions addressing the distress related to aromas. He reported using the the audiotape and finding it helpful. o]

9= Fol l ow-u p Seven months following the final interview, Fred has returned to work. He has regained weight and is no longer

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suffering with nausea and vomiting. He reports that he has developed his own way of using the techniques that he learned. He goes to a quiet, private space and turns on soft jazz music. He then guides himself through the hypnotic intervention. He reports that it is very effective for him and that now he uses it to promote relaxation and reduce stress at the end of his work day. After reading this chapter, the reader should begin to understand the rationale for the choices that Fred made in response to his symptom distress. o]

naturopathic medicine, Native American medicine, and Tibetan medicine. Ancient healing systems tend to remain unchanged, unlike modern medicine, which keeps growing and expanding on a regular basis. A common feature across alternative medical systems is an emphasis on working with internal natural forces to achieve a harmonic state of mind and body, which can promote a sense of well-being and comfort. This idea, although outmoded and unscientific, has great appeal for many in the general public and especially for cancer patients dealing with advanced disease.

Traditional Chinese Medicine o]

Overview of Complementary and Alternative Therapies CAM therapies have been grouped into five major domains by the National Center for Complementary and Alternative Medicine: (1) alternative medical systems (traditional Chinese medicine, ayurvedic medicine, homeopathic medicine, naturopathic medicine, Native American medicine, and Tibetan medicine); (2) mind–body interventions (meditation, focused breathing, progressive muscle relaxation, guided imagery, creative visualization, hypnosis, biofeedback, music therapy, and art therapy); (3) biologically based therapies, nutrition, and special diets (e.g., macrobiotics, megavitamin and orthomolecular therapies, metabolic therapies, individual biological therapies such as shark cartilage) and herbal medicine; (4) manipulative and body-based methods (massage, aromatherapy, reflexology, acupressure, Shiatsu, polarity, chiropractic medicine, yoga, and exercise); and (5) energy therapies (Reiki, Qi gong, and therapeutic touch). The currently popular therapies are discussed in the following sections. Many of these methods are not proven, whereas others have been documented as helpful complementary therapies. Counseling, group therapy, prayer, and spirituality, which we already know to be very helpful to cancer patients, are not included in this chapter because many view them as part of mainstream therapies.

Alternative Medical Systems Instead of disease-oriented therapies, ancient systems of healing were based on attributing health, illness, and death to an invisible energy or life force, and the suggestion of an interaction between the human body, humankind, the spirit world, and the universe. In the earliest of times, there seemed to be a link between religion, magic, and medicine. This is in contrast to modern Western medicine, which is focused on the cause and curing of the disease. These alternative medicine systems are briefly discussed in this chapter because they are followed by many people today. The best known examples of alternative medical systems are traditional Chinese medicine (TCM), India’s ayurvedic medicine, homeopathic medicine,

The cornerstone concept in Chinese medicine is qi (life force), which is energy that flows through the body along pathways known as meridians. TCM views people as ecosystems in miniature.34 Any imbalance or disruption in the circulation of Chi or qi (pronounced “chee”) is thought to result in illness. Restoration of one’s health is therefore dependent on returning the balance and flow of the life force. A TCM diagnosis is based on examination of the person’s complexion, tongue, radial pulse, and detection of scents in bodily materials. Treatment is geared toward correcting imbalances or disruptions of the qi, primarily with herbal formulas and acupuncture.34 Acupuncture is one of the best known forms of CAM. It is one component of TCM. It is based on the belief that qi, the life force, flows through the human body in vertical energy channels known as meridians. There are 12 main meridians, which are believed to be dotted with acupoints that correspond to every body part and organ. To restore the balance and flow of qi, very fine disposable needles are inserted into the acupoints just under the skin. Other stimuli can be used along with acupuncture, such as heat (moxibustion), suction (cupping), external pressure (acupressure), and electrical currents (electroacupuncture). The biological basis of qi or meridians has not been found, but is thought that acupuncture needling releases endorphins and other neurotransmitters in the brain.35 There is good evidence in the oncology literature that acupuncture helps control pain and nausea and vomiting. There is current research on its possible effectiveness for fatigue and dyspnea. Risks associated with acupuncture include mild discomfort or, occasionally, a drop of blood and/or a small bruise at the site of the insertion, but they can include more serious problems, such as an infection or (in the most extreme case) a pneumothorax, which is rare, and depends on the training and experience of the acupuncturist.

Ayurvedic Medicine The term ayurveda comes from Sanskrit words ayur (life) and veda (knowledge) and is about 5000 years old. Ayurvedic medicine is based on the idea that illness is the absence of physical, emotional, and spiritual harmony.36 Many of the basic principles are similar to those of Chinese medicine.

Complementary and Alternative Therapies in Palliative Care Ayurveda is a natural system of medicine that uses diet, herbs, cleansing and purification practices, meditation, yoga, astrology, and gemstones to bring about healing. It sees causation of disease as an accumulation of toxins in the body and an imbalance of emotions. It prescribes individualized diets, regular detoxification, cleansing from all orifices, meditation, and yoga as some of the therapies. There is no scientific evidence that ayurvedic healing techniques cure illness.

Homeopathic Medicine Homeopathy is a medical system that was devised by Samuel Hahnemann 200 years ago, when the causes of diseases, bacteria and viruses were unknown, and little was understood about the workings of the bodily organs. The thinking was that symptoms of ill health represent expressions of disharmony within the person, and attempts of the body to heal itself and return to a state of balance. It is the person, not the disease, that needs treatment. The treatment of disease is based on the principle, “Like cures like.” Homeopathic medicines are made by taking original substances from plants, animals, and minerals, and highly diluting them. It is believed that the body’s own healing ability is stimulated by these medicines. Homeopathic medicines are sold over the counter without prescription. They are so dilute that they are thought to have no side effects, and at the same time to be ineffectual for medical conditions, including cancer-related conditions.

Naturopathic Medicine Naturopathy is more of a philosophical approach to health than a particular form of therapy. It is an alternative medical system that attempts to cure disease by harnessing the body’s own natural healing powers, and restoring good health and preventing disease. Rejecting synthetic drugs and invasive procedures, it stresses the restorative powers of nature, the search for the underlying causes of disease, and the treatment of the whole person. It takes very seriously the motto, “First, do no harm.” Naturopathic medicine began as a quasispiritual “back to nature” movement in the 19th century. European founders advocated exposure to air, water, and sunlight as the best therapy for all ailments and recommended such spa treatments as hot mineral baths as virtual cure-alls. This system relies on natural healing approaches such as herbs, nutrition, and movement or manipulation of the body. Most naturopathic remedies are considered harmless by conventional practitioners.36

Traditional Healing Systems of American Indians/Alaska Natives It is difficult to characterize a traditional healing system of American Indian/Alaska Native (AI/AN) peoples, as there are 562 federally recognized tribes speaking over 270 different

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languages.37 American Indian/Alaska Native (AI/AN) traditional healing methods are rooted in the culture of the people. Traditional healing methods are themselves an expression of cultural identity.38 Despite the diversity of tribal beliefs, shared concepts that influence health behaviors can be identified. A significant belief that underlies many traditional healing systems is that all things are interconnected and composed of a spiritual essence.39 Spirituality is a critical component of most AI/AN traditional healing methods. Therefore, traditional healing is an expression of a cultural identity that is informed by a rich tradition of spirituality.38 Wellness and Illness Wellness is another important concept in AI/AN traditional healing systems. Wellness is an expression of balance and harmony in individual, family, and community systems. Many tranditional healing methods focus on restoring balance and harmony to one or more of these elements.38 Concepts of illness and its causes vary among tribal groups. However, beliefs in the spiritual reality of life often serve to provide a framework for understanding illness. Even seemingly accidental causes of injury may be viewed as having occurred to someone who may be living out of balance and harmony with traditional ways of being, as defined by the group’s spiritual belief systems. Therefore, illness is often attritubted to the violation of spiritual norms.38 Healing is often viewed by American Indians/Alaska Natives as the restoration of harmony and balance. Healing may be facilitated by traditional healers, who may be called many things and take many forms depending upon the native group. Rituals, herbs, and purification processes are used by traditional healers to restore balance and harmony in a manner consistent with the values and beliefs of their people. Traditional healers are considered respected leaders within and outside of their communities.38 Pluralistic Practice It is common for AI/AN to incorporate multiple healing systems into their lives. Both traditional healing systems and the biomedicine of European-American society may be employed. Contributions to European-American biomedicine have been made by the traditional healing systems of AI/AN. The most important evidence of Native American influence on traditional American medicine is the fact that >200 indigenous medicines used by one or more tribes have been listed in the Pharmacopeia of the United States of America.40

Tibetan Medicine Tibetan medicine views the human body as an ecological system, a microcosm directly related to the macrocosm of the world. It attempts to investigate the root causes of illness. The belief is that all of the material that makes up

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our universe is based on the qualities of five basic elements (earth, water, fire, wind, and space). It is understood through experience that natural environmental forces can influence the functioning of the human organism. The Tibetan doctor bases his practice of diagnosis on his own spiritual practice, intellectual training, and intuition. The Tibetan medical diagnosis is a result of the patient interview, observation of the urine, taking of the 12 pulses, looking at the sclera and surface of the tongue, and feeling for sensitivity on certain parts of the body. The treatment is similar to that used in Chinese medicine.

Mind–Body Interventions Mind/Body Therapies (MBT) are defined by the National Center for Complementary and Alternative Medicine as, “. . . a variety of techniques designed to enhance the mind’s ability to affect bodily function and symptoms.”3 There is a long history of the use of interventions currently categorized as Mind/Body Therapies such as distraction, breathing, relaxation, imagery, and hypnosis.41 Frequently used outside of formal Western medical contexts, they have become accepted as useful by the public at large. One study indicates that as of 2002 approximately 17 of the adult U.S. population used some type of Mind/Body Therapy, and when including prayer as an MBT, 53 of the population use or have used some form of MBT.42 The National Health Interview Survey conducted in 2007 reports that the use of deep breathing, meditation, and yoga increased from 2002 to 2007.19 According to one study, Mind/Body Therapies are most often used by the public to treat medical conditions (59).43 Other reasons cited for the use of MBTs include wellness/ prevention, and lifestyle.43 The majority of MBTs are used as self-guided therapies by lay users. Only 12 of the users were shown to seek care from a health care and/or MBT providers.42 One reason cited in the literature for the prevalence of self-guided Mind/Body Therapies over practitioner-guided therapies is availability of health care providers who have received training in, and are competent to provide, Mind/ Body Therapies.44 The ability to influence health with the mind is an extremely appealing concept for many individuals. One of the benefits of self-guided Mind/Body Therapies is the ability to support and affirm feelings of self-efficacy. Since there is emerging evidence of the effectiveness of meditation, guided imagery, hypnosis, progressive muscle relaxation, biofeedback, and yoga for stress reduction, and as adjunct therapies for the management of pain, nausea and vomiting, fatigue, anxiety and disease related distress, it is important for nurses and other health care providers to be well educated about these therapies . While the evidence supports the ability of these therapies to control stress, to reduce selected symptoms and to improve the response to cardiac rehabilitation , there are no reliable, well controlled studies to support the idea that these therapies can cure disease.3,45 A word of caution: some patients may feel guilty, responsible and a failure when their

disease continues to progress despite the use of mind–body interventions.

Meditation Meditation is the intentional self-regulation of attention. It enhances concentration and awareness as the individual focuses systematically and intentionally on particular aspects of inner or outer experience. It allows one to stay present in the moment, and without judgment.46 Historically, most meditation practices were developed within a spiritual or religious context with the goal of spiritual growth, personal transformation, or transcendental experience.45 There are two categories of meditation: concentration and mindfulness. Concentrative methods cultivate onepointedness of attention and start with mantras (sounds, words, or phrases repeated), as in Transcendental Meditation (TM). Mindfulness-based stress reduction (MBSR) practices start with the observation, without judgment, of thoughts, emotions, and sensations as they arise in the field of awareness.46 “Meditation can help individuals connect with what is deepest and most nourishing in themselves, and to mobilize the full range of inner and outer resources available to them.”46 Meditation has been helpful for terminally ill cancer patients. It has shown to be helpful in the relief of physical and emotional pain when integrated into a palliative care program. Many dying cancer patients discover that the calmness and quiet of meditation promotes a profound feeling of acceptance, well-being, and inner peace.46 Walking meditation is appealing to those that cannot sit still. The focus might be on taking one step at a time, smelling the fresh air, taking in one breath at a time, or listening to the birds as one walks.

Relaxation Techniques Relaxation techniques are those simple techniques that, when learned by the patient, can promote relaxation. They include progressive muscle relaxation (contracting and relaxing muscle groups one at a time from head to toe), passive progressive muscle relaxation (no contraction of muscles, but focusing in the mind on sequentially relaxing groups of muscles),47 focused breathing (counting of breaths as one exhales, which can be used by itself or as an introduction to guided imagery).

Guided Imagery Imagery is the formation of mental images. Guided imagery is the intentional formation of mental images in response to verbal suggestion for the purpose of achieving a specific therapeutic result.41,48–54 Some investigators categorize guided imagery and hypnosis as part of the same continuum of experience, with imagery playing a particular role in inducing a state of relaxation necessary for therapeutic intervention.55 Imagery is a natural phenomenon in our lives that occurs all day long. For example, when we wake in the morning we might imagine our day, where we will be going, what we will wear,

Complementary and Alternative Therapies in Palliative Care what we will eat. This is a form of self-guided visualization and imagery. There is strong evidence that guided imagery is useful as an adjunct therapy in cardiac rehabilitation for the promotion of relaxation, in the management of cancer symptoms, and in reduction of procedure/surgery-related pain.45 There are minimal risks associated with guided imagery. Due to the requirement for focused attention, it is contraindicated in patients with severe cognitive impairments and/or thought disorders. It is important that those providing guided imagery are well trained and conform to the ethical standards of practice of their profession. Guided imagery should be taught to nurses so that they may assist patients and family members to develop skills in self-guided imagery that will allow them to enhance their quality of life.47

Hypnosis As the technology for understanding the mechanisms underlying the experience known as hypnosis becomes more advanced, more precise and accurate definitions of the phenomenon are created. At present, hypnosis is defined as “. . . a natural state of aroused, attentive focal concentration coupled with a relative suspension of peripheral awareness.”45 Activation of the anterior cingulate cortex, the thalamus, and the anterior basal ganglia, along with alterations in the orbital frontal cortex, support the state of hypnosis.56,57 One study using fMRI has identified the neural processes underlying the mechanism for hypnotic pain reduction. Th is study determined that the hypnotic state prevents nociceptive inputs from reaching the cortical structures.56 These findings support the concept that there are specific neural processes underlying hypnosis that are responsible for its clinical affect. Hypnosis does not have the same mechanism of action as distraction, but has similar mechanisms to meditation.58 Some evidence is available supporting the use of hypnosis for the management of cancer symptoms (pain, nausea and vomiting, fatigue, anxiety and distress) and the promotion of positive surgical outcomes (decreased pain, nausea and vomiting, medication usage, recovery time, and anxiety).45 Hypnosis may be practiced as a facilitated experience or a self-guided experience. It is not uncommon for practitioners of hypnosis to begin with a facilitated experience that transitions to a self-guided practice through the use of supportive tools such as audiotapes/cds. The hypnotic state is achieved by using a variety of strategies to induce a state of profound relaxation and focused attention, including deep breathing, relaxation and imagery. The process of inducing the hypnotic state is known as the induction. Once a sufficient state of relaxation and focused concentration is achieved, suggestions may be used to achieve therapeutic goals. These suggestions, identified as therapeutic suggestion, are suggestions for behaving, thinking and/or feeling in a particular way with a specific outcome in mind (i.e., pain reduction).59,60 The suggestion may be direct or indirect depending upon the needs of the client and the skills and preferences of the provider.60

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Minimal risks are associated with hypnosis. One risk is the unintentional stimulation of emotionally laden memories that may be upsetting. Careful exploration of the patient’s life experiences prior to using hypnosis minimizes the chance these memories will accidentally be triggered.59 Due to the requirement for focused attention, it is contraindicated in patients with severe cognitive impairments and/or thought disorders. It is recommended that only those individuals with licensure in a health care profession, and who have received formal training in hypnosis, be allowed to provide this service.

Biofeedback Biofeedback involves the use of devices that amplify physiological processes (e.g., blood pressure, muscle activity, skin temperature, perspiration, pulse, respiratory rate, and electroencephalography) that ordinarily cannot be perceived without amplification. Patients are guided through relaxation and imagery exercises and are instructed to alter their physiological processes using as a guide the provided biofeedback (typically visual or auditory data). The primary objective of biofeedback is to promote relaxation. It is a noninvasive procedure. It has been shown to be effective for anxiety and headaches.45

Music Therapy Music therapy in the palliative care setting is essential. Music can break the cyclic nature of pain, alter mood, promote relaxation, and improve communication.61 Music can facilitate the participation of the patient with family and hospital staff. Music therapists apply psychotherapeutic skills in the setting of music as they care for patients with advanced cancer. Music therapy interventions consist of use of precomposed songs (reflecting messages or feelings that are foremost in the patient’s thoughts), improvisation (offering opportunities for spontaneous expression and discovery), chanting and toning (use of vocalization to promote attentiveness and relaxation), imagery (exploration of images and feelings that arise in the music), music listening techniques (which facilitate reminiscence and build self-esteem through reflection on accomplishments), and taping of the music session as a gift for the family.61 Music therapy may help to facilitate a life review for the patient. It can also help in management of the most common symptoms of advanced cancer: pain,62 anxiety and depression,63 nausea and vomiting,64 shortness of breath,65 and sleeplessness.64 Live music has been shown to be more effective than taped music.66

Art Therapy Art therapy is a form of psychotherapy. Art therapists are trained professionals. Art therapy focuses on assisting patients to express, explore, and transform sensations, emotions, and thoughts connected with physical and psychological

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suffering.61 In art therapy, the art therapist and the art materials (e.g., paper, colored markers, oil pastels, cut-up images from magazines) help patients get in touch with their feelings, their fears, and their hopes, and put them out onto the paper, thus helping patients process their experience of illness. It can easily be accommodated to hospitalized inpatients as well as to outpatient art groups or individuals. Art therapy can assist patients with advanced-stage cancer in the management of pain, fatigue, and stress.67 Art images can serve to help the dying patient with issues of anger, bereavement, and loss. The art therapist may help dying patients find “personal symbols” to express something so powerful and so mysterious as the end of life.67

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Biologically Based Therapies Alternative diets have an ancient history, both medical and cultural, of plants and herbs as the first medicines. The example of vitamin C curing scurvy reinforces the idea of foods being medicines and curing illness. Some of the ancient medicine systems are still being practiced today; for example, ayurvedic medicine uses special diets, herbs, and cleansings to treat illness and promote health. Today’s food pyramid recommends fiber, grains, fruits and vegetables, and less protein, meat, and dairy products than was emphasized in earlier U.S. Department of Agriculture government guidelines. It emphasizes balance. Changes in guidelines are based on carefully controlled scientific studies. Many alternative and fad diets, herbs, and supplements are either not scientifically validated or are marketed despite having been found worthless or harmful.

Nutrition

seaweeds, and soups. Soybean foods are encouraged, and a small amount of fish is allowed. In-season foods are preferred. Proponents of this diet believe that it cures cancer. There is no evidence that the macrobiotic diet is beneficial for cancer patients. Megavitamin and Orthomolecular Therapy. Some alternative practitioners believe that huge doses of vitamins can cure cancer. Linus Pauling coined the term orthomolecular, meaning large quantities of minerals and other nutrients. His claim that large doses of vitamin C could cure cancer was disproved. There was no evidence in 1979 that megavitamin or orthomolecular therapy was effective in treating any disease.68 In 1985, Moertel and colleagues69 showed that vitamin C was ineffective against advanced malignant cancer. There are side effects to the overdosing of vitamins and minerals.36 A nutritionally healthy diet is recommended for overall good health. Some people have special needs and may require supplements. Patients should not attempt to treat themselves with megadoses of vitamins or minerals, but should seek professional attention for nutritional advice. Metabolic Therapies. Metabolic therapies are based on the theory that disease is caused by the accumulations of toxic substances in the body. The goal of treatment is to eliminate the toxins. Metabolic therapies usually include a special diet; high-dose vitamins, minerals, or other dietary supplements; and detoxification with coffee enemas or irrigation of the colon. Colon detoxification is not used in mainstream medicine, and there are no data to support the claims that dried food and toxins remain stuck in the walls of the colon. The development of metabolic therapy is attributed to Max Gerson, a physician who emigrated from Germany in 1936. Today, cancer is the most common illness treated with metabolic therapies. Research does not substantiate the beliefs and practices of metabolic therapies, and patients may lose valuable time during which they could be receiving treatments with proven benefits.

Some alternative practitioners believe that dietary treatments can prevent cancer or even go a step further to believe that foods or vitamins can cure cancer. The American Cancer Society Guidelines on Nutrition form the basis for a healthful diet that emphasizes vegetables, fruits, legumes, and whole grains; low-fat or nonfat dairy products; and limited amounts of red meat (lean preferred). Special dietary problems should be discussed with the doctor and an oncology-registered dietitian. It should be emphasized to the patient and family that the doctor should be informed before the patient takes any vitamin, mineral, or herb.

Individual Biological Therapy. Advocates of shark and bovine cartilage therapy claim that it can reduce tumor size, slow or stop the growth of cancer, and help reverse bone diseases such as osteoporosis. More importantly, shark and bovine cartilage are thought to play a role in angiogenesis, which involves halting the blood supply to cancer cells. There is no firm evidence that cartilage treatment is effective against cancer.

Special Diets

Herbal Medicine

Macrobiotics. The philosophy of the macrobiotic diet is curing through diet. It was developed in the 1930s by a Japanese philosopher, George Ohsawa. Originally, the diet consisted of brown rice with very little liquid. It was nutritionally deficient. Today it consists of 50 to 60 whole grains, 25 to 30 vegetables, and the remainder beans,

Herbs have been used as medicines going back to ancient times. Belief in the magic of herbs for the treatment of cancer exists today, especially in the face of advanced cancer and few or no options. There is a romance about herbs, in that they are natural and come from the earth and therefore must be pure, safe, and harmless. A major concern exists

Complementary and Alternative Therapies in Palliative Care that patients are using herbs indiscriminately on a routine basis without knowledge that these herbs interact with drugs, can interfere with the efficacy of anticancer drugs, and can cause death.70 There is a lack of knowledge that most herbal remedies have not been tested in carefully designed clinical studies.71 Currently, some herbal remedies are being studied for their ability to induce or extend a cancer remission. We must remember and teach our patients that herbs have potency comparable to that of pharmaceuticals.72 They can cause medical problems such as allergic reactions, toxic reactions, adverse effects, drug interactions, and drug contamination.34 An important aspect of cancer care is to recognize that herbs can be toxic to cancer patients and should be discussed with the doctor and other qualified practitioners. MSKCC advises patients to avoid taking any herbs for 2 weeks before any cancer therapy and to refrain from using supplements while in the hospital. Some herbs, such as St. John’s wort,73 may interfere with the effectiveness of chemotherapy. Garlic may alter clotting times in a surgical candidate. Dong qui may make the skin more sensitive to burns during radiation. The active ingredients in many herbs are not known. In the United States, herbal and other dietary supplements are not regulated by the U.S. Food and Drug Administration (FDA) as drugs. This means that they do not have to meet the same standards as drugs and over-the-counter medications for proof of safety and effectiveness. Identifying the active ingredients and understanding how they affect the body are important areas of research being done by NCCAM. Differences have been found in some cases between what is listed on the label and what is in the bottle, and some contaminants have been identified as heavy metals, microorganisms, or unspecified prescription drugs and adulterants. Standardization and authentication of herbs is important. An excellent resource to obtain information about herbs can be found on MSKCC’s website for Integrative Medicine,74 and in a resource book by Cassileth and Lucarelli on herbdrug interactions.75 The website has pages written for consumers as well as a professional section; both are available to all at no cost. None of these resources make any medical recommendations about herbs; the website is specifically for information. Mikail and colleagues76 found in a study of medical residents that they had a knowledge deficit concerning herbal medicines. Ninety percent of them wanted to learn more about herbal medicine, including uses of herbs, contraindications, and drug interactions, as well as being able to talk to patients about their use. As the prevalence of herbal remedy use grows, equipping nurses and doctors with information and vocabulary will help them discuss with, and offer their patients information about proper precautions. Patients should be encouraged to talk to their doctors and nurses about the herbs they are taking. It is important to listen with patience, and then to respond without judgment. This approach promotes open, ongoing communication between the patient and the doctor or nurse.

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Manipulative and Body-Based Methods Touch is the first sense to develop, and it is our primary way of experiencing the world, starting with infancy up until the moment of the last breath.77 It is critical to growth and development. Infants, the elderly, the ill, and animals that do not receive regular touch fail to thrive and eventually die. In ancient times, the “laying on of hands” was an early practice of healing by touch. Medicine consisted of touch before the advent of pharmaceutical therapies. Today drugs, technology, paperwork, and heavy patient loads keep the doctor and nurse from the bedside. Patients comment, “I don’t get touched very much any more. If I do, it is a medical touch and it can hurt. My family and friends don’t seem to touch either, maybe out of fear.” Touch is a healing agent, but is underutilized by healing practitioners. Touch is our most social sense and implies a communication between two people. Cultural differences in touching are essential to keep in mind, so as to always be respectful.

Massage Massage therapy is one of the oldest health care practices in use. Chinese medical texts referred to it more than 4000 years ago. It is one of the most widely accepted forms of complementary therapies today. Massage employs the manual techniques of rubbing, stroking, tapping, or kneading the body’s soft tissues to influence the whole person. Simms2 suggested that touch is a fundamental element in patient care that can encourage better communication and promote comfort and well-being. The concern of the medical profession and patients has been that massage would spread cancer cells. There is no evidence that this is the case, because the stimulation caused by massage is no more than everyday exercise.78 The benefits of massage are many and include improving circulation, relaxing muscles and nerve tissue, releasing tension, reducing pain, decreasing anxiety and depression, energizing, and promoting an overall sense of well-being. Massage is contraindicated under some circumstances: over metastatic bones (for risk of bone fracture or breakage), if the platelet count is 48 hours. Results showed that two thirds (67.2) of patients were last cared for in an institution. Family members reported greater satisfaction with patient’s symptom management, and with emotional support for both the patient and family, if they received care at home with hospice services. Families have greater opportunities for involvement in the care if home care is possible. Family involvement in hospital care also makes for better outcomes. Among geriatric patients receiving end-of-life care in a hospital setting, family involvement before death reduces the use of technology and increases the use of comfort care as patients die.27

Supporting Families in Palliative Care Nurses, therefore, must consider how best to include families in the care of their dying loved ones, regardless of the location of care. Large variations exist in the provision of home-based palliative and terminal care across the United States, although the development of hospice home services has enabled increasing numbers of seriously ill patients to experience care at home. However, dying at home can present special challenges for family members.28 Lack of support and lack of confidence have been found to be determinants contributing to hospital admissions and the breakdown of informal caregiving for people with a life-threatening illness. A lack of support from the health care system is given as the reason many caregivers have to admit their loved one to the hospital.23 They also report that fragmentation of services and lack of forward planning jeopardizes the success of home care.29,30 Moreover, the decision for home care has a profound effect on family members.3,23,31,32 In an ethnographic study investigating palliative care at home,33,34 caregiver decisions for home care were characterized in three ways. Some caregivers made uninformed decisions, giving little consideration to the implications of their decision: “I made the decision just like that. . . . There wasn’t much thought that went into it.” Such decisions were made early in the patient’s disease trajectory or when the patient was imminently dying, and they were often influenced by the unrealistic portrayal in the media about dying at home. Indifferent decisions occurred if caregivers felt they had little choice. The patient’s needs and wishes often drove decisions, with caregivers paying little attention to their own needs. Negotiated decisions for home care typically occurred if caregivers and patients were able to talk openly about dying, and had done so throughout the disease trajectory. For some families, a home death can bring additional burdens, worries, and responsibilities,28 so it is important that open discussion is facilitated. Family members’ decisions were influenced by three major factors: making promises to care for the loved one at home, the desire to maintain as much as possible a “normal” life for the patient and themselves, and negative experiences with institutional care. Of interest, family members did not think of themselves as the target of professional interventions. They were reluctant to ask for help or to let their needs be known. Consequently, when working with caregiving families, health care providers could mediate discussions with the aim of coming to a mutually acceptable decision about home care. Such discussions could facilitate the sharing of perspectives, to allow for decisions that would work well for all concerned. Ideally, such discussions should begin early in the disease trajectory. Importantly, ongoing attention should be paid to improving hospital end-of-life care so that families feel they have a meaningful alternative to home care. A small-scale study to develop and evaluate care pathways for the last days of life in a community setting was developed and tested in the United Kingdom, based on the pioneering work of Ellershaw.35 The plan outlines the expected course of a patient’s trajectory;

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brings together all the anticipated aspects of care, particularly with regard to symptom management and caregiver support; and encourages forward planning to avoid crisis admission to the hospital.36 It serves as a model for how home care can be optimally delivered to those with terminal illness, echoing Doyle’s 37 observation that good palliative care is an exercise in anticipation. Clinicians must recognize the emotional impact of providing palliative care at home, and must be sensitive to the sometimes overwhelming task that caregiving imposes on family caregivers. Acknowledging that availability and access to service is important, Stajduhar and Davies 38 specified that care must be provided within a team context so that families can benefit from a whole set of services needed to support death at home. Clinicians must work with the dying patients, with family caregivers, and with each other as equal partners in the caregiving process. Clinicians must be available to families, offering anticipatory guidance and support throughout the caregiving experience. Health care professionals must assist family members as they traverse the maze of treatment and care decisions, ranging from whether to give particular “as needed” medications, or what food to make for the patient to eat, to whether or not to seek hospice care, to sign “do-not-resuscitate” documents, or to terminate treatment. It is critical that palliative care professionals continually engage with caregivers in forward planning, interpretation, and monitoring of the inevitable decline and dying process of the ill person, so as to facilitate the feeling in caregivers that they are secure and supported in their physically and emotionally exhausting work. Families need to know whom to call and when, and how to reach them. Some simple guidelines for families can serve to encourage their coping. For example, caregivers should be told to keep a small notebook handy for jotting down questions and answers. The pages may be divided in half lengthwise, using the column on the left for questions and the other column for answers. Or, the left-sided page may be used for questions and the opposite page for the answers. They should be advised to have the notebook with them whenever they talk with a member of the palliative care team. Family members should be reassured that nothing is trivial. All questions are important, and all observations are valuable. They should be encouraged to say when they do not understand something, and to ask for information to be repeated as necessary. Palliative care professionals can help by spelling words that family members do not understand or by jotting down explanations. They should reassure family members that asking for help is not a sign of failure, but rather a sign of good common sense. Following such simple guidelines helps keep families from feeling overwhelmed. And, if they do feel “out of control,” such guidelines, simple as they may seem, give family members some concrete action they can take to help with whatever the situation may be. Clinicians must also remember that their own attitudes are critical; if families feel they are a “nuisance” to health care providers, they tend to be more anxious and to shy away from

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Psychosocial Support

asking for help. Furthermore, clinicians are in ideal positions to advocate with politicians and policy makers to expand resources for home-based palliative care programs so that families can adequately and humanely be supported in their caregiving work.

Caregiving at a Distance Not all caregiving is provided by family members who live with, or are geographically close to, the patient. Distant caregiving, the provision of instrumental and/or emotional support to an ill loved one who lives a long distance from the caregiver, is prevalent in today’s changing society. Adult children often live far from their parents and find themselves caregiving from a distance. Millions of Americans are distant caregivers 39 and the number is expected to reach approximately 14 million by the year 2012 40 as baby boomers and their parents age. An estimated 15 of adult children are caregiving parents from a distance.41 These adult children are dealing with the added challenges and stressors associated with living at a distance, such as lack of nearby family support. There is some indication that stress related to the distant caregiving is reported by about 79 of these caregivers.42 Otherwise, little is known about their experiences, yet most interventions have been designed to support local caregivers. Clinicians must remember that interventions to decrease caregiver burden and improve caregiver well-being may not be as applicable to distant caregivers, who may need extra flexibility and accommodations, such as increased telephone communication, in order to meet their needs.

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Guidelines for Nursing Interventions Respect for persons requires that clinicians understand diversity and are able to manage issues that may arise when caring for people with varied backgrounds. The cultural and spiritual backgrounds of families, as well as those of the clinician, need to be taken into account because cultural or spiritual beliefs may be important in assisting families to cope.43 All nursing interventions should be provided with respect to an individual’s background. However, despite differences across cultures, it is important to remember that similarities exist in regards to basic needs for support, dignity, and connections with others.44 Much of the nursing literature, which provides guidelines for nursing care, addresses the importance of four major interventions that have relevance for all members of the palliative care team: 1. Maintain hope in patients and their family members. As families pass through the illness trajectory, the nature of their hope changes from hope for cure, to hope for remission, to hope for comfort, to hope for a good death. Offering hope during fading away can be as simple as reassuring families that everything

will be done to ensure the patient’s comfort. Talking about the past also can help some families by reaffirming the good times spent together and the ongoing connections that will continue among family members. Referring to the future beyond the immediate suffering and emotional pain can also sustain hope. For example, when adult children reassure the ill parent that they will care for the other parent, the patient is hopeful that the surviving spouse will be all right. 2. Involve families in all aspects of care. Include them in decision-making, and encourage active participation in the physical care of the patient. This is their life—they have the right to control it as they will. Involvement is especially important for children when a family member is very ill. The more children are involved in care during the terminal phase, and in the activities that follow the death, the better able they are to cope with bereavement.45 3. Offer information. Tell families about what is happening in straightforward terms and about what they can expect to happen, particularly about the patient’s condition and the process their loved one is to undergo. Doing so also provides families with a sense of control. Initiate the discussion of relevant issues that family members themselves may hesitate to mention. For example, the nurse might say, “Many family members feel as if they are being pulled in two or more directions when a loved one is very ill. They want to spend as much time as possible with the patient, but they also feel the pull of their own daily lives, careers, or families. How does this fit with your experience?” 4. Communicate openly. Open and honest communication with nurses and other health professionals is frequently the most important need of families. They need to be informed; they need opportunities to ask questions and to have their questions answered in terms that they can comprehend. Open communication among team members is basic to open communication with the families. It is not an easy task for families to give up their comfortable and established views of themselves as death approaches. The challenge for members of the health care team is to help family members anticipate what lies ahead, without violating their need to relinquish old orientations and hopes at a pace they can handle. These four broad interventions assist health care providers in providing good palliative care; the following guidelines offer further direction. They are derived from the direct accounts of patients, spouses, and children about the strategies they used to cope with the dimensions of fading away.

Redefining Supporting patients and other family members with redefi ning requires that health care providers appreciate how difficult

Supporting Families in Palliative Care it is for family members to relinquish familiar perceptions of themselves and adopt unfamiliar, unwelcome, and unaskedfor changes to their self-perceptions. Disengagement from former perceptions and the adoption of new orientations occur over time. Nurses and other care providers are challenged to help family members anticipate and prepare for what lies ahead, while not pushing them at a pace that threatens their sense of integrity. Each family member redefines at his or her own pace; interventions must be tailored according to the individual needs of each. At the same time, health care providers must support the family as a unit by reassuring family members that their varying coping responses and strategies are to be expected. Provide opportunities for patients to talk about the losses incurred due to the illness, the enforced changes, the adaptations they have made, and their feelings associated with these changes. Reinforce their normal patterns of living as long as possible and as appropriate. When they can no longer function as they once did, focus on what patients still can do, reinforcing those aspects of self that remain intact. Acknowledge that roles and responsibilities may be expressed in new and different ways, and suggest new activities appropriate to the patient’s interest and current capabilities. The focus with spouses and children centers on explaining how the disease or treatment contributes to changes in the patient physically, psychologically, and socially. Provide opportunities for spouses to talk about how changes in the patient affect their marital relationship. Help children appreciate their parent from another perspective, such as in recalling favorite memories or identifying the legacies left. Discuss how they can face their own vulnerability by channeling concerns into positive steps for self-care. Reinforce the spouse’s and children’s usual patterns of living for as long as possible and as appropriate; when former patterns are no longer feasible, help them to consider adjustments or alternatives. Provide opportunities for spouses to discuss how they may reorganize priorities in order to be with and care for the patient to the degree they desire. Consider resources that enable the spouse to do this, such as the assistance of volunteers, home support services, or additional nursing services. Teach caregiving techniques if the spouse shows interest. With the children, discuss the degree to which they want to be open or private about the patient’s illness with those outside the family. Acknowledge that family members will vary in their ability to assimilate changes in the patient and in their family life.

Burdening Palliative care professionals can help patients find ways to relieve their sense of burden, and can provide patients with opportunities to talk about their fears and concerns and to consider with whom they want to share their worries. In this way, patients may alleviate their concern for putting excessive demands on family members. Explain the importance of a break for family members, and suggest that patients accept

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assistance from a volunteer or home-support services at those times to relieve family members from worry. Explain that when patients affirm family members for their efforts, this contributes to family members feeling appreciated and reduces their sense of burden. Nurses and all members of the interdisciplinary team can assist spouses with burdening by supporting the spouse’s reassurances to the patient that he or she is not a burden. Acknowledge spouses’ efforts when they put their own needs on hold to care for the patient; help them to appreciate the importance of taking care of themselves as a legitimate way of sustaining the energy they need for the patient. Talk with spouses about how they might take time out, and consider the various resources they might use. Acknowledge the negative feelings spouses may have about how long they can continue; do not negate their positive desire to help. For children, acknowledge the reorganization and the considerable adjustment in their daily routines. Explain that ambivalent feelings are common—the positive feelings associated with helping, and the negative feelings associated with less time spent on careers and their own families. Acknowledge that communicating regularly with their parents by telephoning or visiting often is part of the “work” of caring; the extra effort involved should not be underestimated. Encourage children to take time out for themselves, and support them in their desire to maintain involvement in their typical lives.

Struggling with Paradox Facing the usual business of living and directly dealing with dying is a considerable challenge for all members of the family. The care provider’s challenge is to appreciate that it is not possible to alleviate completely the family’s psychosocial and spiritual pain. Team members must face their own comfort level in working with families who are facing paradoxical situations and the associated ambivalent feelings. Like family members, nurses, social workers, physicians, and all team members may also sometimes want to avoid the distress of struggling with paradox. They may feel unprepared to handle conversations in which no simple solution exists, and strong feelings abound. Care providers can support patients and other family members by providing opportunities for all family members to ventilate their frustrations and not minimizing their pain and anguish. On the good days, rejoice with them. Listen to their expressions of ambivalence, and be prepared for the ups and downs and changes of opinion that are sure to occur. Reassure them that their ambivalence is a common response. Encourage “time out” as a way to replenish depleted energy.

Contending with Change Palliative care team members must realize that not all families communicate openly or work easily together in solving problems. Nurses in particular can support patients and family members to contend with change by creating an

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environment in which families explore and manage their own concerns and feelings according to their particular coping style. Providing information so that families can explore various alternatives helps them to determine what adjustments they can make. Make information available not only verbally but also in writing. Or, tape-record informative discussions so that families can revisit what they have been told. Rituals can be helpful during periods of terminal illness. A family ritual is a behavior or action that reflects some symbolic meaning for all members of the family and is part of their collective experience. A ritual does not have to be religious in nature. Rituals may already exist, or they can be newly created to assist the family in contending with change. For example, the writing of an “ethical will,” whereby one passes on wisdom to others or elaborates on his or her hopes for their loved ones’ future, can help ill family members communicate what they might not be able to verbalize to their loved ones. Developing new rituals can help with the changes in everyday life; for example, one woman had always been the sounding board for her children on their return from school. It was a pattern that continued as her children entered the work force. Cancer of the trachea prevented her participation in the same way. Instead, she requested her young adult children to sit by her side, hold her hand, and recount their days. Instead of words, the mother responded with varying hand squeezes to let them know she was listening. The altered daily ritual served both mother and children in adapting to the changes in their lives.

Searching for Meaning Palliative care professionals help families search for meaning by enabling them to tell their personal stories and make sense of them. It is essential that team members appreciate the value of storytelling—when a family talks about its current situation and recollections of the past, it is not just idle chatter. It is a vital part of making sense of the situation and coping with it. Professional team members must appreciate that much of the search for meaning involves examining spiritual dimensions, belief systems, values, and relationships within and outside the family. Nurses can be supportive by suggesting approaches for personal reflection, such as journal writing or writing letters.

Living Day to Day In living day to day, families make subtle shifts in their orientation to living with a dying family member. They move from thinking that there is no future to making the most of the time they have left. This is a good time to review the resources available to the family, to ensure that they are using all possible sources of assistance so that their time together is optimally spent.

Preparing for Death In helping families prepare for death, nurses in particular must be comfortable talking about the inevitability of

death, describing the dying process, and helping families make plans for wills and funerals. It is important not to push or force such issues; it is equally important not to avoid them because of the nurse’s personal discomfort with dying and death. Encourage such discussions among family members while acknowledging how difficult they can be. Affi rm them for their courage to face these difficult issues. Encourage patients to attend to practical details, such as fi nalizing a will and distributing possessions. Encourage them to do “last things,” such as participating in a special holiday celebration. Provide information to spouses and children about the dying process. If the plan is for death at home, provide information about what procedures will need to be followed and the resources that are available. Provide opportunities for family members to express their concerns and ask questions. Encourage them to reminisce with the patient as a way of saying “good-bye,” and acknowledge the bittersweet quality of such remembrances. Provide information to the adult children about how they can help their own children with the impending death. The foregoing guidelines are intended to assist nurses and all members of the palliative care team in their care of individual family members. The guidelines are summarized in Table 31–1. In addition, family-centered care also means focusing on the family as a unit. Health care providers must appreciate that the family as a whole has a life of its own that is distinct, but always connected to the individuals who are part of it. Both levels of care are important.19 The families in the “fading away” study also provided insights about how family functioning plays a role in coping with terminal illness in a family member.

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Family Functioning and Fading Away Families experienced the transition of fading away with greater or lesser difficulty, depending on their level of functioning according to eight dimensions: integrating the past, dealing with feelings, solving problems, utilizing resources, considering others, portraying family identity, fulfi lling roles, and tolerating differences. These dimensions occurred along a continuum of functionality; family interactions tended to vary along this continuum rather than being positive or negative, good or bad. Some families acknowledged the pain of past experience with illness, loss, and other adversity, and integrated previous learning into how they were managing their current situation. These families expressed a range of feelings, from happiness and satisfaction, through uncertainty and dread, to sadness and sorrow. Family members acknowledged their vulnerabilities and their ambivalent feelings. All topics were open for discussion. There were no clearcut rights and wrongs, and no absolute answers to the family’s problems. They applied a flexible approach to problem-solving and openly exchanged all information. They engaged in

Table 31–1 Dimensions of Fading Away: Nursing Interventions for Family Members Redefining Appreciate that relinquishing old and comfortable views of themselves occurs over time and does not necessarily occur simultaneously with physical changes in the patient Tailor interventions according to the various abilities of family members to assimilate the changes Reassure family members that a range of responses and coping strategies is to be expected within and among family members Provide opportunities for patients to talk about the illness, the enforced changes in their lives, and the ways in which they have adapted; for spouses to talk about how changes in the patient affect their marital relationship; and for children to talk about their own feelings of vulnerability and the degree to which they want to be open or private about the situation Reinforce normal patterns of living for as long as possible and as appropriate. When patterns are no longer viable, consider adjustments or alternatives Focus on the patient’s attributes that remain intact, and acknowledge that roles and responsibilities may be expressed differently. Consider adjustments or alternatives when former patterns are no longer feasible Help spouses consider how they might reorganize priorities and consider resources to help them do this Help children appreciate their parent from another perspective, such as in recalling favorite stories or identifying legacies left Burdening Provide opportunities for patients to talk about fears and anxieties about dying and death, and to consider with whom to share their concerns Help patients stay involved for as long as possible as a way of sustaining self-esteem and a sense of control Assist family members to take on tasks appropriate to their comfort level and skill and share tasks among themselves Support family members’ reassurances to patient that he or she is not a burden. Explain that when patients reaffi rm family members for their efforts, this contributes to their feeling appreciated and lessens the potential for feeling burdened Explain the importance of breaks for family members. Encourage others to take over for patients on a regular basis so family members can take a break Acknowledge the reorganization of priorities and the considerable adjustment in family routines and extra demands placed on family members. Acknowledge the “work” of caring for all family members Realize that family members will vary in their ability to assimilate the changes and that a range of reactions and coping strategies is normal Struggling with paradox Appreciate that you, as a nurse, cannot completely alleviate the psychosocial-spiritual pain inherent in the family’s struggle Assess your own comfort level in working with people facing paradoxical situations and ambivalent feelings Provide opportunities for family members to mourn the loss of their hopes and plans. Do not minimize these losses; help them modify their previous hopes and plans and consider new ones Listen to their expressions of ambivalence, and be prepared for the ups and downs of opinions

Ensure effective symptom management, because this allows patients and family members to focus outside the illness Explain the importance of respite as a strategy for renewing energy for dealing with the situation Contending with change Create an environment in which family members can explore and manage their own concerns and feelings. Encourage dialogue about family members’ beliefs, feelings, hopes, fears, and dilemmas so they can determine their own course of action Recognize that families communicate in well-entrenched patterns and their ability to communicate openly and honestly differs Normalize the experience of family members and explain that such feelings do not negate the positive feelings of concern and affection Provide information so families can explore the available resources, their options, and the pros and cons of the various options. Provide information in writing as well as verbally Explain the wide-ranging nature of the changes that occur within the patient’s immediate and extended family Searching for meaning Appreciate that the search for meaning involves examination of the self, of relationships with other family members, and of spiritual aspects. Realize that talking about the current situation and their recollections of past illness and losses is part of making sense of the situation Encourage life reviews and reminiscing. Listen to the life stories that family members tell Suggest approaches for self-examination such as journal writing, and approaches for facilitating interactions between family members such as writing letters Living day to day Listen carefully for the subtle shifts in orientation to living with a dying relative and gauge family members’ readiness for a new orientation Ensure effective control of symptoms so that the patient can make the most of the time available. Assess the need for aids Without minimizing their losses and concerns, affirm their ability to appreciate and make the most of the time left Review resources that would free family members to spend more time with the patient Preparing for death Assess your own comfort level in talking about the inevitability of death, describing the dying process, and helping families make plans for wills and funerals Provide information about the dying process Discuss patients’ preferences about the circumstances of their death. Encourage patients to discuss these issues with their family. Acknowledge how difficult such discussions can be Encourage patients to do important “last things,” such as completing a project as a legacy for their family Provide opportunities for spouses and children to express their concerns about their future without the patient. Provide them with opportunities to reminisce about their life together. Acknowledge such remembrances will have a bittersweet quality

Source: Davies et al. (1995), reference 19.

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Table 31–2 Dimensions of Family Functioning: Examples of the Range of Behaviors More Helpful Integrating the past Describe the painful experiences as they relate to present experience Describe positive and negative feelings concerning the past Incorporate learning from the past into subsequent experiences Reminisce about pleasurable experiences in the past Dealing with feelings Express a range of feelings including vulnerability, fear, and uncertainty Acknowledge paradoxical feelings Solving problems Identify problems as they occur Reach consensus about a problem and possible courses of action Consider multiple options Open to suggestions Approach problems as a team rather than as individuals Utilizing resources Utilize a wide range of resources Open to accepting support Open to suggestions regarding resources Take the initiative in procuring additional resources Express satisfaction with results obtained Describe the involvement of many friends, acquaintances, and support persons Considering others Acknowledge multidimensional effects of situation on other family members Express concern for well-being of other family members Focus concern on patient’s well-being Appreciate individualized attention from health care professionals, but do not express strong need for such attention Direct concerns about how other family members are managing rather than with themselves Identify characteristic coping styles of family unit and of individual members Demonstrate warmth and caring toward other family members Consider present situation as potential opportunity for family’s growth and development Value contributions of all family members Describe a history of closeness among family members Fulfi lling roles Demonstrate flexibility in adapting to role changes Share extra responsibilities willingly Adjust priorities to incorporate extra demands of patient care and express satisfaction with this decision

Less Helpful Describe past experiences repeatedly Dwell on painful feeling associated with past experiences Do not integrate learning from the past to the current situation Focus on trying to “fi x” the past to create happy memories which are absent from their family life Express predominantly negative feelings, such as anger, hurt, bitterness, and fear Acknowledge little uncertainty or few paradoxical feelings Focus more on fault fi nding than on finding solutions Dwell on the emotions associated with the problem Unable to clearly communicate needs and expectations Feel powerless about influencing the care they are receiving Display exaggerated response to unexpected events Withhold or inaccurately share information with other family members Utilize few resources Reluctant to seek help or accept offers of help Receive help mostly from formal sources rather than from informal support networks Express dissatisfaction with help received Describe fewer friends and acquaintances who offer help

Focus concern on own emotional needs Fail to acknowledge or minimize extra tasks taken on by others Display inordinate need for individualized attention

Describe own characteristic coping styles rather than the characteristic way the family as a unit coped Allow one member to dominate group interaction Lack comfort with expressing true feelings in the family group Feign group consensus where none exists Describe few family interactions prior to illness Demonstrate rigidity in adapting to role changes and responsibilities Demonstrate less sharing of responsibilities created by extra demands of patient care Refer to caregiving as a duty or obligation Criticize or mistrust caregiving provided by others

Tolerating differences Allow differing opinions and beliefs within the family Tolerate different views from people outside the family Willing to examine own belief and value systems Source: Davies, et al. (1994), reference 49. Reprinted with permission.

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Display intolerance for differing opinions or approaches of caregiving Demonstrate critical views of friends who fail to respond as expected Adhere rigidly to belief and value systems

Table 31–3 Family Functioning: Guidelines for Interventions in Palliative Care Assessing family functioning

Solving problems

Use dimensions of family functioning to assess families. For example: Do members focus their concern on the patient’s well-being and recognize the effect of the situation on other family members, or do family members focus their concerns on their own individual needs and minimize how others might be affected? Putting your assessment of all the dimensions together will help you determine to what degree you are dealing with a more cohesive family unit or a more loosely coupled group of individuals, and hence what approaches are most appropriate.

Use your assessment of family functioning to guide your approaches. For example, in families where there is little consensus about the problems, rigidity in beliefs, and inflexibility in roles and relationships, the common rule of thumb—offering families various options so they may choose those that suit them best—tends to be less successful. For these families, carefully consider which resource provides the best possible fit for that particular family. Offer resources slowly, perhaps one at a time. Focus considerable attention on the degree of disruption associated with the introduction of the resource, and prepare the family for the change that ensues. Otherwise, the family may reject the resource as unsuitable and perceive the experience as yet another example of failure of the health care system to meet their needs.

Be prepared to collect information over time and from different family members. Some family members may not be willing to reveal their true feelings until they have developed trust. Others may be reluctant to share differing viewpoints in the presence of one another. In some families, certain individuals take on the role of spokesperson for the family. Assessing whether everyone in the family shares the viewpoints of the spokesperson, or whether different family members have divergent opinions but are reluctant to share them, is a critical part of the assessment. Listen to the family’s story and use clinical judgment to determine where intervention is required. Part of understanding a family is listening to their story. In some families, the stories tend to be repeated and the feelings associated with them resurface. Talking about the past is a way of being for some families. It is important that the nurse determine whether family members are repeatedly telling their story because they want to be better understood or because they want help to change the way their family deals with the situation. Most often the stories are retold simply because family members want the nurse to understand them and their situation better, not because they are looking for help to change the way their family functions.

Be aware of the limitations of family conferences and be prepared to follow up. Family conferences work well for more cohesive family units. However, where more disparity exists among the members, they may not follow through with the decisions made, even though consensus was apparently achieved. Though not voicing their disagreement, some family members may not be committed to the solution put forward and may disregard the agreed-upon plan. The nurse needs to follow up to ensure that any trouble spots are addressed. Be prepared to repeat information. In less-cohesive families, do not assume that information will be accurately and openly shared with other family members. You may have to repeat information several times to different family members and repeat answers to the same questions from various family members. Evaluate the appropriateness of support groups. Support groups can be a valuable resource. They help by providing people with the opportunity to hear the perspectives of others in similar situations. However, some family members need more individualized attention than a support group provides. They do not benefit from hearing how others have experienced the situation and dealt with the problems. They need one-to-one interaction focused on themselves with someone with whom they have developed trust. Adjust care to the level of family functioning. Some families are more overwhelmed by the palliative care experience than others. Understanding family functioning can help nurses appreciate that expectations for some families to “pull together” to cope with the stress of palliative care may be unrealistic. Nurses need to adjust their care according to the family’s way of functioning and be prepared for the fact that working with some families is more demanding and the outcomes achieved are less optimal.

Source: Davies et al. (1995), reference 19.

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mutual decision-making, considering each member’s point of view and feelings. Each family member was permitted to voice both positive and negative opinions in the process of making decisions. They agreed on the characteristics of their family and allowed individual variation within the family. They allocated household and patient care responsibilities in a flexible way. These families were often amenable to outside intervention and were comfortable in seeking and using external resources. Such families were often appealing to palliative care nurses and other personnel, because they openly discussed their situation, shared their concerns, and accepted help willingly. Other families were more challenging for palliative care professionals. These were families who hung on to negative past experiences and continued to dwell on the painful feelings associated with past events. They appeared to avoid the feelings of turmoil and ambivalence, shielding themselves from the pain, often indicating that they did not usually express their feelings. These families approached problems by focusing more on why the problem occurred and who was at fault, rather than generating potential solutions. They often were unable to communicate their needs or expectations to each other or to health care professionals, and were angry when their wishes were not fulfilled. They expressed discrepant views only in individual interviews, not when all members were present, and tended not to tolerate differences. Varying approaches by health care workers were not generally well tolerated, either. These families did not adapt easily to new roles, nor did they welcome outside assistance. Such families showed little concern for others. They used few resources, because family members were often unable or reluctant to seek help from others. Such families often presented a challenge for nursing care. Nurses must realize that expecting such families to “pull together” to cope with the stresses of palliative care is unrealistic. It is essential not to judge these families, but rather to appreciate that the family is coping as best it can under very difficult circumstances. These families need support and affirmation of their existing coping strategies, not judgmental criticisms. Palliative care clinicians are encouraged to complete assessments of level of family system functioning early in their encounters with families.46,47 Th is is the best time to begin to develop an understanding of the family as a whole, as a basis for the services to be offered. In fact, the value of focusing on patterns of family functioning has been demonstrated by a clinical approach that screens for families, rather than individuals, at high risk.48 Assessment of family functioning provides a basis for effective interactions to ensure a family-focused approach in palliative care. The eight dimensions of family functioning provide a guideline for assessment. Table 31–2 summarizes these dimensions and gives examples of the range of behaviors evident in each dimension. The table summarizes those behaviors that on one end of the continuum are more helpful, and on the other end are less helpful to families facing the transition of fading away.

Understanding the concept of family functioning enhances the nurse’s ability to assess the unique characteristics of each family. An assessment of family functioning enables the nurse to interact appropriately with the family and help them solve problems more effectively (Table 31–3). For example, in families where communication is open and shared among all members, the nurse can be confident that communication with one family member will be accurately passed on to other members. In families where communication is not as open, the nurse must take extra time to share the information with all members. Or, in families who dwell on their negative past experiences with the health care system, nurses must realize that establishing trust is likely to require extra effort and time. Families who are open to outside intervention are more likely to benefit from resource referrals; other families may need more encouragement and time to open their doors to external assistance. Nurses, and all palliative care providers, must remember that each family is unique and comes with its own life story and circumstances; listening to the story is central to understanding the family. There may be threads of commonality, but there will not be duplicate experiences. Nurses must assist family members to recognize the essential role they are playing in the experience, and to acknowledge their contributions. Most importantly, nurses must realize that each family is doing the best it can. Nurses must sensitively, creatively, and patiently support families as they encounter one of the greatest challenges families must face—the transition of fading away.

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Supporting Families in Palliative Care 10. Jo S, Brazil K, Lohfield L, Willison K. Caregiving at the end of life: Perspectives from spousal caregivers and care recipients. Pall Support Care 2007;5:11–17. 11. Proot IM, Abu-Saad HH, Crebolder HF, Goldsteen M, Luker KA, Widdershoven GA. Vulnerability of family caregivers in terminal palliative care at home: Balancing between burden and capacity. Scand J Caring 2003;17:113–121. 12. Strang V, Koop P, Peden J. The experience of respite during home-based family caregiving for persons with advanced cancer. J Palliat Care 2003;18:97–104. 13. Benzein EG, Saveman B. Health-promoting conversations about hope and suffering with couples in palliative care. Int J Palliat Nurse 2008;14:439–445. 14. Cantor J, Blustein J, Carlson MJ, Gould D. Next-of-kin perceptions in physician responsiveness to symptoms of hospitalized patients near death. J Palliat Med 2003;6:531–539. 15. Rhodes RL, Mitchell SL, Miller SC, Connor SR, Teno JM. Bereaved family members’ evaluation of hospice care: What factors influence overall satisfaction with care? J Pain Sympt Manage 2008;35:365–371. 16. Baker R, Wu AW, Teno JM, et al. Family satisfaction with endof-life care in seriously ill hospitalized patients: Findings of the SUPPORT program. J Am Geriatr Soc 2000;48:S61–S69. 17. Albinsson L, Strang P. Differences in supporting families of dementia patients and cancer patients: A palliative perspective. Palliat Med 2003;17:359–367. 18. Caron CD, Griffith J, Arcand M. End-of-life decision making in dementia: The perspective of family caregivers. Dementia 2005;4:113–136. 19. Davies B, Chekryn Reimer J, Brown P, Martens N. Fading Away: The Experience of Transition in Families with Terminal Illness. Amityville, NY: Baywood, 1995. 20. Bridges W. Transitions: Making Sense of Life’s Changes. Reading, MA: Addison-Wesley, 1980. 21. Sherman DW. Reciprocal suffering: The need to improve family caregivers’ quality of life through palliative care. J Palliat Care 1998;1:357–366. 22. Koop P, Strang V. The bereavement experience following home-based family caregiving for persons with advanced cancer. Clin Nurs Res 2003;12:127–144. 23. Perreault A, Fothergill-Bourbonnais F, Fiset V. The experience of family members caring for a dying loved one. Int J Palliat Nurs 2004;10:133–143. 24. Skilbeck JK, Payne SA, Ingleton MC, Nolan M, Carey I, Hanson A. An exploration of family carers’ experience of respite services in one specialist palliative care unit. Pall Med 2005;19:610–618. 25. Carr D. A “good death” for whom? Quality of spouse’s death and psychological distress among older widowed persons. J Health Social Behav 2003;44:215–232. 26. Teno JM, Clarridge BR, Casey V, et al. Family perspectives on end-of-life care at the last place of death. JAMA 2004;291:88–93. 27. Tschann JM, Kaufman SR, Micco GP. Family involvement in end-of-life hospital care. J Am Geriatr Soc 2003;51:835–840. 28. Brazil K, Howell D, Bedard M, Krueger P, Heidebrecht C. Preferences for place of care and place of death among inforaml caregivers of the terminally ill. Pall Med 2005;19:492–499. 29. Beaver K, Luker K, Woods S. Primary care services received curing terminal illness. Int J Palliat Nurs 2000;6:220–227.

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30. Thomas K. Out-of-hours palliative care: Bridging the gap. Eur J Palliat Care 2000;7:22–25. 31. Addington-Hall J, Karlsen S. Do home deaths increase distress in bereavement? Palliat Med 2000;14:161–162. 32. Aranda SK, Hayman-White K. Home caregivers of the person with advanced cancer: An Australian perspective. Cancer Nurs 2001;24:300–307. 33. Stajduhar KI. Examining the perspectives of family members involved in the delivery of palliative care at home. J Palliat Care 2003;19:27–35. 34. Stajduhar KI, Davies B. Variations in and factors influencing family members’ decisions for palliative home care. Palliat Med 2005;19:21–32. 35. Ellershaw J, Foster A, Murphy D, Shea T, Overill S. Developing an integrated care pathway for the dying patient. Eur J Palliat Care 1997;4:203–207. 36. Pooler J, McCrory F, Steadman Y, Westwell H, Peers S. Dying at home: A care pathway for the last days of life in a community setting. Int J Palliat Nurs 2003;9:258–264. 37. Doyle D. Palliative medicine in the home: An overview. In: Doyle D, Hanks G, MacDonald N, eds. Oxford Textbook of Palliative Care (2nd ed). Oxford: Oxford University Press; 2004:1097–1114. 38. Stajduhar K, Davies B. Death at home: Challenges for families and directions for the future. J Palliat Care 1996;14:8–14. 39. Wagner, D. Caring across the miles: Findings of a survey of long-distance caregivers. Final Report for the National Council on the Aging. Washington, D.C.: National Council on the Aging, 1997. 40. National Council on Aging. Nearly 7 million long-distance caregivers make work and personal sacrifices. Washington, D.C.: Author. 1997. Retrieved December 5, 2008, from https:// www.ncoa.org/content.cfm?sectionID=105&detail=49 41. National Alliance for Caregiving & AARP. Caregiving in the U.S. 2004. Retrieved December 5, 2008, from http://www.caregiving.org/data/04finalreport.pdf 42. Koerin B, Harrigan M. P.S. I love you: Long distance caregiving. J Social Work 2002;40:63–81. 43. Torke AM, Garas NS, Sexson W, Branch WT Jr. Medical care at the end of life: Views of African American patients in an urban hospital. J Pall Med, 2005;8:593–602. 44. Diver F, Molassiotis A, Weeks L. The palliative care needs of ethnic minority patients attending a day-care centre: A qualitative study. Int J Pall Nurs, 2003;9:389–396. 45. Davies B. Environmental factors affecting sibling bereavement. In: Davies B. Shadows in the Sun: Experiences of Sibling Bereavement in Childhood. Philadelphia: Brunner/Mazel; 1999:123–148. 46. Jassak P. Families: An essential element in the care of the patient with cancer. Oncol Nurs Forum 1992;19:871–986. 47. Gulla J. Family assessment and its relation to hospice care. Am J Hospice Palliat Care 1992 (July/August):30–34. 48. Kissane DW, McKenzie M, McKenzie DP, Forbes A, O’Neill I, Block S. Psychosocial morbidity associated with patterns of family functioning in palliative care: Baseline data from the Family Focused Grief Therapy controlled trial. Palliat Med 2003;17:527–537. 49. Davies B, Reimer J, Martens N. Family functioning and its implications for palliative care. J Palliat Care 1994;10:35–36.


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Patricia Berry and Julie Griffie

Planning for the Actual Death My “little sister’s” pancreatic cancer had weighed on my sister and her family for the last two years. Her life partner never communicated well with our family, so she has lived in relative isolation from us for the last 25 years. Now, as she is very close to death, there are problems with this person and the hospice staff, as he can be volatile and threatening. Consequently, they established a contract with him to assure everyone’s safety. So I was apprehensive over what I would encounter on my first visit. I hadn’t seen her since they had struggled with her physicians over the hospice decision. I found her gently confused, such that I was her brother, but not sure which one. I was able to speak from my heart and tell her how much I loved her. Later the nurse took me aside to talk privately and she told me what they were doing for my sister, the goals for her care, and most importantly assuring me she was comfortable and treated with dignity. I came away knowing that my sister would be okay. The relationship between our family, my sister, and her partner suddenly seemed to be a non-issue. We will probably continue to have issues in the last days of her life, and probably after her death, but are all finally agreeing on the important things, and the hospice staff is giving all of us an opportunity to finally say and do some very long-overdue things.—“The older brother”

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Key Points The care of patients and families near to death and afterward is a important nursing function—arguably one of the most important. There are often no dress rehearsals; nurses and other health care professionals often only have one chance to “get it right.” Assessment and aggressive management of symptoms remains a priority, especially as death approaches. As the dying person nears death, the goals of care often change with patient and family needs, desires, and perspectives, providing a different experience for everyone. Care of the body after death, including honoring rituals and individual requests, can clearly communicate to the family that the person who died was indeed important and valued.

Issues and needs at the time of death are exceedingly important and, at the same time, exceedingly personal. Although the physiology of dying may be the same for most expected deaths, the psychological, spiritual, cultural, and family issues are as unique and varied as the patients and families themselves. As death nears, the goals of care must be discussed and appropriately redefined. Some treatments may be discontinued, and symptoms may intensify, subside, or even appear anew. Physiological changes as death approaches must also be defined, explained, and interpreted to the patient whenever possible, as well as to the patient’s family, close others, and caregivers. The nurse occupies a key position in assisting patients’ family members at the time of death by supporting or suggesting death rituals, caring for the body after death, and facilitating early grief work. Most of the focus on death and dying in the past has been on dying in general, making the need for a chapter focused specifically on the actual death even more important. Terminally ill persons are cared for in a variety of settings, including home settings with hospice care or traditional home care, hospice residential facilities, nursing homes, assisted living facilities, hospitals, intensive care units, prisons, and group homes. Deaths in intensive care settings may present special challenges, such as restrictive visiting hours and lack of space and less privacy for families—shortcomings that can be addressed by thoughtful and creative nursing care. Likewise, death in a nursing home setting may also offer unique challenges. Regardless of the setting, anticipating and managing pain and symptoms can minimize distress and maximize quality of life. Families can be supported in a 629

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way that optimizes use of valuable time, and lessens distress during the bereavement period. Like it or not, health professionals only have one chance to “get it right” when caring for dying persons and their families as death nears. In other words, there is no dress rehearsal for the time surrounding death; extensive planning ensures the least stressful and best possible outcome for all involved. The patient’s family is especially important as death nears. Family members may become full- or part-time caregivers; daughters and sons may fi nd themselves in a position to “parent” their parents; and family issues, long forgotten or ignored, may surface. Although “family” is often thought of in traditional terms, a family may take on several forms and configurations. For purposes of this chapter, the definition of family recognizes that many patients have nontraditional families and may be cared for by a large extended entity, such as a church community, a group of supportive friends, or the staff of a health care facility. Family is defined broadly to include not only persons bound by biology or legal ties, but also those whom the patient defines or who define themselves as “close others” or who function for the patient in as a family member would, including nurturance, intimacy, and economic, social, and psychological support in times of need; support in illness (including dealing with those outside the family); and companionship. The occurrence of symptoms at end-of-life is temporal in nature; that is, there is a constellation of symptoms common throughout the course of end-stage disease, and symptoms that appear during the period immediately preceding death, most often 2–3 days prior. As death nears, symptoms can escalate and new ones appear. While there is much known about the assessment and management of symptoms as death nears, most research demonstrates that many people experience a death with symptoms not well controlled. It is estimated that up to 52 of patients have refractory symptoms at the very end of life that at times require palliative sedation.3 Within a few days of death, many patients experience a higher frequency of noisy and moist breathing, urinary incontinence and retention, restlessness, agitation, delirium, and nausea and vomiting.4–6 Symptoms that occur, but with less frequency, include sweating and myoclonus, with mycolnus sometimes occurring as a reversible toxic effect of morphine.7–9 In most studies, symptoms requiring maximum diligence in assessment, prevention, and aggressive treatment during the final day or two before death are respiratory tract secretions (with a prevalence of 23–92), pain, dyspnea, and agitated delirium (with a prevalence of 80–90).10 In most studies, symptoms requiring maximum diligence in assessment, prevention, and aggressive treatment during the final day or two before death were respiratory tract secretions, pain, dyspnea, restlessness, and agitation.3,10,11 For some patients, the pathway to death is characterized by progressive sleepiness leading to coma and death. For others, the pathway to death is marked by increasing symptoms, including restlessness, confusion, hallucinations, sometimes seizure activity, and then coma and death.11 Some authors have emphasized that persons with cognitive impairment

require specific attention to symptoms, especially as death nears.10 In any case, the nurse plays a key role in anticipating symptoms and educating family members and other caregivers about the assessment, treatment, and continual evaluation of these symptoms. Regardless of individual patient and family needs, attitudes, and “unfinished business,” the nurse’s professional approach and demeanor at the time near death is crucial and worthy of close attention. Patients experience total and profound dependency at this stage of their illness. Families are often called upon to assume total caregiving duties, often disrupting their own responsibilities for home, children, and career. Although there may be similarities, patients and families experience this time through the unique lens of their own perspective, and form their own unique meaning. Some authors suggest theories and guidelines as the bases for establishing and maintaining meaningful, helpful, and therapeutic relationships with patients or clients and their families. One example is Carl Rogers’ theory of helping relationships, in which he proposed that the characteristics of a helping relationship are empathy, unconditional positive regard, and genuineness.12 These characteristics, defined later as part of the nurse’s approach to patients and families, are essential in facilitating care at the end of life. To this may be added “attention to detail,” because this additional characteristic is essential for quality palliative care.13,14 Readers are urged to consider the following characteristics in the context of their own practices, as a basis for facilitating and providing supportive relationships: • Empathy: the ability to put oneself in the other person’s place, trying to understand the patient or client from his or her own frame of reference; it also requires the deliberate setting aside of one’s own frame of reference and bias. • Unconditional positive regard: a warm feeling toward others, with a nonjudgmental acceptance of all they reveal themselves to be; the ability to convey a sense of respect and esteem at a time and place in which it is particularly important to do so. • Genuineness: the ability to convey trustworthiness and openness that is real rather than a professional facade; also the ability to admit that one has limitations, makes mistakes, and does not have all the answers. • Attention to detail: the learned and practiced ability to think critically about a situation and not make assumptions. The nurse, for example, discusses challenging patient and family concerns with colleagues and other members of the interdisciplinary team. The nurse considers every “what if” before making a decision and, in particular, before making any judgment. Finally, the nurse is constantly aware of how his or her actions, attitudes, and words may be interpreted—or misinterpreted—by others.13 The events and interactions—positive as well as negative—at the bedside of a dying person set the tone for the patient’s care and form lasting memories for family members. The time of

Planning for the Actual Death death and the care received by both the individual who has died, and the family members who are present, are predominant aspects of the survivors’ memories of this momentous event. Approaching patients and families with a genuine openness characterized by empathy and positive regard eases the way in making this difficult time meaningful, individualized, and deeply profound. This chapter discusses some key issues surrounding the death itself, including advance planning, the changing focus of care as death nears, common signs and symptoms of nearing death and their management, and care of the patient and family at time of death. It concludes with two case examples illustrating the chapter’s content.

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Advance Planning: Evolving Choices and Goals of Care Health care choices related to wellness are generally viewed as clearcut or easy. We have an infection, we seek treatment, and the problem resolves. Throughout most of the lifespan, medical treatment choices are obvious. As wellness moves along the health care continuum to illness, choices become less clear and consequences of choices have a significantly greater impact. Many end-of-life illnesses manifest with well-known and well-documented natural courses. Providing the patient and family with information on the natural course of the disease at appropriate intervals is a critical function of health care providers such as nurses. Providing an opening for discussion, such as, “Would you like to talk about the future?” “Do you have any concerns that I can help you address?” or “It seems you are not as active as you were before,” may allow a much-needed discussion of fears and concerns about impending death. Family members may request information that patients do not wish to know at certain points in time. With the patient’s permission, discussions with the family may occur in the patient’s absence. Family members may also need coaching to initiate end-of-life discussions with the patient. End-of-life goal setting is greatly enhanced when the patient is aware of the support of family. End-of-life care issues should always be discussed with patients and family members. The patient who is capable of participating in and making decisions is always the acknowledged decision-maker. The involvement of family ensures maximal consensus for patient support as decisions are actually implemented. Decisions for patients who lack decisionmaking capacity should be made by a consensus approach, using family conference methodology. If documents such as a durable power of attorney for health care or a living will are available, they can be used as a guide for examining wishes that influence decision-making and goal-setting. The decision-maker, usually the person named as health care power of attorney (HCPOA), or the patient’s primary family members, should be clearly identified. This approach may also be used with patients who are able to make their own decisions.

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To facilitate decision-making, a family conference is initiated that involves the decision makers (decisional patient, family members, and the HCPOA), the patient’s phyisican or provider, nurse, chaplain, and social worker. A history of how the patient’s health care status evolved from diagnosis to the present is reviewed. The family is presented with the natural course of the disease. Choices on how care may proceed in the future are reviewed. Guidance or support for those choices is provided based on existing data and clinical experience with the particular disease in relation to the current status of the patient. If no consensus for the needed decisions occurs, decision-making is postponed. Third-party support by a trusted individual or consultant may then be enlisted. Personal fundamental values of the patient, family, and physician should be recognized and protected throughout this process.15 Decisions by patients and families cross the spectrum of care range from continuing treatment for the actual disease, such as undergoing chemotherapy or renal dialysis or utilization of medications, to initiating cardiopulmonary resuscitation (CPR). The health care provider may work with the patient and family, making care decisions for specific treatments and timing treatment discontinuance within a clear and logical framework. A goal-setting discussion may determine a patient’s personal framework for care, such as • Treatment and enrollment in any clinical studies for which I am eligible. • Treatment as long as statistically there is a greater than 50 chance of response. • Full treatment as long as I am ambulatory and able to come to the clinic or office. • Treatment only of “fi xable” conditions such as infections or blood glucose levels. • Treatment only for controlling symptomatic aspects of disease. Once a goal framework has been established with the patient, the appropriateness of interventions such as CPR, renal dialysis, or intravenous antibiotics is clear. For instance, if the patient states a desire for renal dialysis as long as transportation to the clinic is possible without the use of an ambulance, the endpoint of dialysis treatment is quite clear. At this point, the futility of CPR would also be apparent. Allowing a patient to determine when the treatment is a burden that is unjustified by his or her value system, and communicating this determination to family and caregivers, is perhaps the most pivotal point in management of the patient’s care. Table 32–1 suggests a format for an effective and comprehensive family conference.

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Changing the Focus of Care as Death Nears Vital Signs As nurses, we derive a good deal of security in performing the ritual of measurement of vital signs, one of the hallmarks of

Table 32–1 Family Conference I. Why: Clarify goals in your own mind. II. Where: Provide comfort, privacy, circular seating. III. Who: Include legal decision maker/health care power of attorney; family members; social support; key health care professionals, patient if capable to participate. IV. How: A. Introduction 1. Introduce self and others. 2. Review meeting goals: State meeting goals and specific decisions. 3. Establish ground rules: Each person will have a chance to ask questions and express views; no interruptions; identify legal decision-maker, and describe importance of supportive decision-making. 4. If new to patient/family, spend some time getting to know him or her as a person. B. Determine what the patient/family knows. C. Review medical status 1. Review current status, plan, and prognosis. 2. Ask each family member in turn for any questions about current status, plan, and prognosis. 3. Defer discussion of decision until the next step. 4. Respond to emotions. D. Family discussion with decisional patient 1. Ask patient, “What decision(s) are you considering?” 2. Ask each family member, “Do you have questions or concerns about the treatment plan? How can you support the patient?” E. Family discussion with nondecisional patient 1. Ask each family member in turn, “What do you believe the patient would choose if he (or she) could speak for himself (or herself)?” 2. Ask each family member, “What do you think should be done?” 3. Leave room to let family discuss alone. 4. If there is consensus, go to V; if no consensus, go to F. F. When there is no consensus: 1. Restate goal: “What would the patient say if he or she could speak?” 2. Use time as ally: Schedule a follow-up conference the next day. 3. Try further discussion: “What values is your decision based on? How will the decision affect you and other family members?” 4. Identify legal decision-maker. 5. Identify resources: minister/priest; other physicians; ethics committee. V. Wrap-up 1. Summarize consensus, decisions, and plan. 2. Caution against unexpected outcomes. 3. Identify family spokesperson for ongoing communication. 4. Document in the chart who was present, what decisions were made, follow-up plan. 5. Approach discontinuation of treatment as an interdisciplinary team, not just as a nursing function. 6. Continuity: Maintain contact with family and medical team; schedule follow-up meetings as needed. VI. Family dynamics and decisions 1. Family structure: Respect the family hierarchy whenever possible. 2. Established patterns of family interaction will continue. 3. Unresolved confl icts between family members may be evident. 4. Past problems with authority figures, doctors, and hospitals affect the process; ask specifically about bad experiences in the past. 5. Family grieving and decision-making may include • Denial: False hopes. • Guilt: Fear of letting go. • Depression: Passivity and inability to decide; or anger and irritability. Source: Adapted from Ambuael & Weissman (2005), reference 38. Copyright ©2005, Medical College of Wisconsin, Inc.

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Planning for the Actual Death nursing care. When death is approaching, we need to question the rationale for measuring vital signs. Are interventions going to change if it is discovered that the patient has experienced a drop in blood pressure? If the plan of care no longer involves intervening in changes in blood pressure and pulse rate, the measurements should cease. The time spent taking vital signs can then be channeled to assessment of patient comfort and provision of family support. Changes in respiratory rate are visually noted and do not require routine monitoring of rates, unless symptom management issues develop that could be more accurately assessed by measurement of vital signs. The measurement of body temperature using a noninvasive route should continue on a regular basis until death, allowing for the detection and management of fever, a frequent symptom that can cause distress and may require management. Fever often suggests infection. As death approaches, goal-setting should include a discussion of the nontreatment of infection. Indications for treatment of infection are based on the degree of distress and patient discomfort.16 Pharmacological management of fever includes antipyretics, including acetaminophen, and nonsteroidal antiinflammatory drugs. In some cases, treatment of an infection with an anitbiotic may increase patient comfort. Ice packs, alcohol baths, and cooling blankets should be used cautiously, because they often cause more distress than the fever itself.16 Fever may also suggest dehydration. As with the management of fever, interventions are guided by the degree of distress and patient discomfort. The appropriateness of beginning artificial hydration for the treatment of fever is based on individual patient assessment.

Cardiopulmonary Resuscitation Patients and family members may need to discuss the issue of the futility of CPR when death is expected from a terminal illness. Developed in the 1960s as a method of restarting the heart in the event of sudden, unexpected clinical death, CPR was originally intended for circumstances in which death was unexpected or accidental. It is not indicated in certain situations, such as cases of terminal irreversible illness where death is not unexpected; resuscitation in these circumstances may represent an active violation of a person’s right to die with dignity. Over the years, predictors of the success of CPR have become apparent, along with the predictors of the burden of CPR. In general, a poor outcome of CPR is predicted in patients with advanced terminal illnesses, patients with dementia, and patients with poor functional status who depend on others for meeting their basic care needs. Poor outcomes or physical problems resulting from CPR include fractured ribs, punctured lung, brain damage if anoxia has occurred for too long, and permanent unconsciousness or persistent vegetative state.17–19 Most importantly, the use of CPR negates the possibility of a peaceful death. This is considered the gravest of poor outcomes.

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Medically-administered Fluids The issue of medically administered or “artificial” hydration is emotional for many patients and families because of the role that giving and consuming fluids plays in our culture. When patients are not able to take fluids, concern surfaces among caregivers. A decision must be reached regarding the appropriate use of fluids within the context of the patient’s framework of goals. Beginning artificial hydration is a relatively easy task, but the decision to stop is generally much more problematic given its emotional implications. Ethical, moral, and most religious viewpoints state that there is no difference between withholding and withdrawing a treatment such as artificial hydration. However, the emotional response attached to withdrawing a treatment adds a world of difference to the decision to suspend. It is therefore much less burdensome to not begin treatment, if this decision is acceptable in light of the specific patient circumstances.20 Most patients and families are aware that, without fluids, death will occur quickly. The literature suggests that fluids should not be routinely administered to dying patients, nor automatically withheld from them. Instead, the decision should be based on careful, individual assessment. Zerwekh 21 suggested consideration of the following questions when the choice to initiate or continue hydration is evaluated: • Is the patient’s well-being enhanced by the overall effect of hydration? • Which current symptoms are being relieved by artificial hydration? • Are other end-of-life symptoms being aggravated by the fluids? • Does hydration improve the patient’s level of consciousness? If so, is this within the patient’s goals and wishes for end-of-life care? • Does hydration appear to prolong the patient’s survival? If so, is this within the patient’s goals and wishes for end-of-life care? • What is the effect of the infusion technology on the patient’s well-being, mobility, and ability to interact and be with family? • What is the burden of the infusion technology on the family in terms of caregiver stress, finance? Is it justified by benefit to the patient? Research suggests that, although some dying patients may actually benefit from dehydration, others may experience increased discomfort such as confusion, agitated delirium, or opioid toxicity that can be corrected or prevented by hydration.22 In any case, the uniqueness of the individual situation, the goals of care, the benefits and burdens of the proposed treatment, and the comfort of the patient must always be considered.23 Terminal dehydration refers to the process in which the dying patient’s condition naturally results in a decrease in fluid intake. A gradual withdrawal from activities of daily living may occur as symptoms such as dysphagia, nausea,

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and fatigue become more obvious. Families commonly ask whether the patient will be thirsty as fluid intake decreases. The arguments are complex, but several studies have demonstrated that, although patients reported thirst, there was no correlation between thirst and hydration, resulting in the assumption that artificial hydration to relieve symptoms may be futile.22 Medically, hydration has the potential to result in fluid accumulation, resulting in distressful symptoms such as edema, ascites, nausea and vomiting, and pulmonary congestion. Does medically adminstered hydration prolong life? There is no evidence that rehydration actually prolongs life.22 Health care providers need to assist patients and family members to refocus on the natural course of the disease and the notion that the patient’s death will be caused by the disease, not by dehydration, which is a natural occurrence in advanced illness and dying. Nurses may then assist families in dealing with symptoms caused by dehydration. Dry mouth, a consistently reported distressing symptom of dehydration, can be relieved with sips of beverages, ice chips, or hard candies. Another simple comfort measure for dry mouth is spraying normal saline into the mouth with a spray bottle or atomizer. (Normal saline is made by mixing one teaspoon of table salt in a quart of water.) Meticulous mouth care must be administered to keep the patient’s mouth clean. Family members can be instructed to anticipate this need. The nurse can facilitate this care by ensuring that the necessary provisions are on hand to assist the patient.

Medications Medications unrelated to the terminal diagnosis are generally continued as long as their administration is not burdensome. When swallowing pills becomes too difficult, the medication may be offered in a liquid or other form if available, considering patient and family comfort. Continuing medications, however, may be seen by some patients and families as a way of normalizing daily activities and therefore should be supported. Considerable tact, kindness, and knowledge of the patient and family are needed in assisting them to make decisions about discontinuing medications. Medications that do not contribute to daily comfort should be evaluated on an individual basis for possible discontinuance. Medications such as antihypertensives, replacement hormones, vitamin supplements, iron preparations, hypoglycemics, long-term antibiotics, antiarrhythmics, and laxatives, unless they are essential to patient comfort, can and should be discontinued unless doing so would cause symptoms or discomfort. Accordingly, special consderation should be given to the use of diuretics with patients with end-stage heart disease and corticosteroids in patients with neuropathic pain or for the treatment of increased intracranial pressure. The control or prevention of distressing symptoms should be the guiding principle in the use of medications, especially in the final days of life. Resumption of the drug at any point is always an option that should be offered to the patient and family if the

need becomes apparent. Customarily, the only drugs necessary in the final days of life are analgesics, anticonvulsants, antiemetics, antipyretics, anti-secretories, and sedatives.24

Implantable Cardioverter Defibrillator Implantable cardioverter defibrillators (ICDs) are used to prevent cardiac arrest due to ventricular tachycardia or ventricular fibrillation. Patients with ICDs who are dying of another terminal condition or are withdrawn from anti-arrythmic medications may choose to have the defibrillator deactivated, or turned off, so that there will be no interference from the device at the time of death. Patients with ICDs are instructed to carry a wallet identification card at all times that provides the model and serial number of the implanted device. The identification card will also have the name of the physician to contact for assistance. Deactivating the ICD is a simple, noninvasive procedure and usually overseen by an ICD specialist. The device is tested after it is turned off to ensure that it is no longer operational, and the test result is placed in the patient record. Patients who are at peace with their impending death find this procedure important to provide assurance that death indeed will be quiet and easy, when it does occur.25

Renal Dialysis Renal dialysis is a life-sustaining treatment, and as death approaches it is important to recognize and agree on its limitations. Discontinuation of dialysis should be considered in the following cases: • Patients with acute, concurrent illness, who, if they survive, will be burdened with a great deal of disability as defined by the patient and family. • Patients with progressive and untreatable disease or disability. • Patients with dementia or severe neurological deficit. There is general agreement that dialysis should not be used to prolong the dying process.26 The time between discontinuing dialysis and death varies widely, from a matter of hours or days (for patients with acute illnesses, such as those described earlier) to days, or a week or longer if some residual renal function remains.26,27 Opening a discussion about the burden of treatment, however, is a delicate task. There may be competing opinions among the patient, family, and even staff about the tolerability or intolerability of continuing treatment. The nurse who sees the patient and family on a regular basis may be the most logical person to recognize the discrete changes in status. Gently validating these observations may open a much-needed discussion regarding the goals of care. The discussions and decisions surrounding discontinuation or modification of treatment are never easy. Phrases such as, “There is nothing more that can be done” or “We have tried everything” have no place in end-of-life discussions with patients and families. Always reassure the patient and

Planning for the Actual Death family members—and be prepared to follow through—that you will stand by them and do all you can to provide help and comfort. This is essential to ensure that palliative care is not interpreted as abandonment.

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Common Signs and Symptoms of Imminent Death and Their Management There usually are predictable sets of processes that occur during the final stages of a terminal illness due to gradual hypoxia, respiratory acidosis, metabolic consequences of renal failure, and the signs and symptoms of hypoxic brain function.3,11,28 These processes account for the signs and symptoms of imminent death and can assist the nurse in helping the family plan for the actual death. The following signs and symptoms provide cues that death is only days away 2,3,11,28,29: • Profound weakness (patient is usually bedbound and requires assistance with all or most care). • Gaunt and pale physical appearance (most common in persons with cancer if corticosteroids have not been used as treatment). • Drowsiness and/or a reduction in awareness, insight, and perception (often with extended periods of drowsiness, extreme difficulty in concentrating, severely limited attention span, inability to cooperate with caregivers, disorientation to time and place, or semicomatose state). • Increasing lack of interest in food and fluid with diminished intake (only able to take sips of fluids). • Increasing difficulty in swallowing oral medications. During the final days, these signs and symptoms become more pronounced, and, as oxygen concentrations drop, new symptoms also appear. Measurement of oxygen concentration in the dying person is not advocated, because it adds discomfort and does not alter the course of care. However, knowledge of the signs and symptoms associated with decreasing oxygen concentrations can assist the nurse in guiding the family as death nears.28 As oxygen saturation drops below 80, signs and symptoms related to hypoxia appear. As the dying process proceeds, special issues related to normalizing the dying process for the family, symptom control, and patient and family support present themselves. Table 32–2 summarizes the physiological process of dying and suggests interventions for both patients and families. As the imminently dying person takes in less fluid, thirdspaced fluids, clinically manifested as peripheral edema, acites, or pleural eff usions, may be reabsorbed. Breathing may become easier, and there may be less discomfort from tissue distention. Accordingly, as the person experiences dehydration, swelling is often reduced around tumor masses. Patients may experience transient improvements in comfort, including increased mental status and decreased pain. The family

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needs a careful and compassionate explanation regarding these temporary improvements and encouragement to make the most of this short but potentially meaningful time. There are multiple patient and family educational tools available to assist families in interpreting the signs and symptoms of approaching death (Figure 32–1). However, as with all aspects of palliative care, consideration of the individual perspective and associated relationships of the patient or family member, the underlying disease course trajectory, anticipated symptoms, and the setting of care is essential for optimal care at all stages of illness, but especially during the final days and hours.30

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Care at the Time of Death, Death Rituals, and Facilitating Early Grieving At the time of death, the nurse has a unique opportunity to provide information helpful in making decisions about organ and body donation and autopsy. In addition, the nurse can support the family’s choice of death rituals, gently care for the body, assist in funeral planning, and facilitate the early process of grieving. Family members’ needs around the time of death change, just as the goals of care change. During this important time, plans are reviewed and perhaps refined. Special issues affecting the time of death, such as cultural influences, decisions regarding organ or body donation, and the need for autopsy, are also reviewed. Under U.S. federal law, if death occurs in a hospital setting, staff must approach the family decision-maker regarding the possibility of organ donation.31 Although approaching family at this time may seem onerous, the opportunity to assist another is often comforting. Some hospital-based palliative care programs include information about organ donation in their admission or bereavement information. Readers are urged to review their own organizations’ policies and procedures. In any case, it is important to clarify specifically with family members what their desires and needs are at the time of death. Do they wish to be present? Do they know of others who wish to now say a fi nal goodbye? Have they said everything they wish to say to the person who is dying? Do they have any regrets? Are they concerned about anything? Do they wish something could be different? Every person in a family has different and unique needs that, unless explored, can go unmet. Family members recall the time before the death and immediately afterward with great acuity and detail. As mentioned earlier, there is no chance for a dress rehearsal—we only have the one chance to “get it right” and make the experience an individualized and memorable one. Although an expected death can be anticipated with some degree of certainty, the exact time of death is often not predictable. Death often occurs when no health care professionals are present. Frequently, dying people seem to determine the time of their own death—for example, waiting for someone to

Table 32–2 Symptoms in the Normal Progression of Dying and Suggested Interventions Symptoms

Suggested Interventions

Early stage sensation/perception • Impairment in the ability to grasp ideas and reason; periods of alertness along with periods of disorientation and restlessness are also noted.

• Interpret the signs and symptoms to the patient (when appropriate) and family as part of the normal dying process; for example, assure them the patient’s “seeing” and even talking to persons who have died is normal and often expected. • Urge family members to look for metaphors for death in speech and conversation (e.g., talk of a long journey, needing maps or tickets, or in preparing for a trip in other ways) and using these metaphors as a departure point for conversation with the patient. • Urge family to take advantage of the patient’s periods of lucidity to talk with patient and ensure nothing is left unsaid. • Encourage family members to touch and speak slowly and gently to the patient without being patronizing. • Maximize safety; for example, use bedrails and schedule people to sit with the patient. • Keep sensory stimulation to a minimum, including light, sounds, and visual stimulation; reading to a patient who has enjoyed reading in the past may provide comfort. • Urge the family to be mindful of what they say “over” the patient, because hearing remains present; also continue to urge family to say what they wish not to be left unsaid.

• Some loss of visual acuity.

• Increased sensitivity to bright lights while other senses, except hearing, are dulled. Cardiorespiratory • Increased pulse and respiratory rate. • Agonal respirations or sounds of gasping for air without apparent discomfort. • Apnea, periodic, or Cheyne-Stokes respirations. • Inability to cough or clear secretions efficiently, resulting in gurgling or congested breathing (sometimes referred to as the “death rattle”).

Renal/Urinary • Decreasing urinary output, sometimes urinary incontinence or retention. Musculoskeletal • Gradual loss of the ability to move, beginning with the legs, then progressing. Late stage sensation/perception • Unconsciousness. • Eyes remain half open, blink reflex is absent; sense of hearing remains intact and may slowly decrease.

• Normalize the observed changes by interpreting the signs and symptoms as part of the normal dying process and ensuring the patient’s comfort. • Assess and treat respiratory distress as appropriate. • Assess use and need for parenteral fluids, tube feedings, or hydration. (It is generally appropriate to either discontinue or greatly decrease these at this point in time.) • Reposition the patient in a side-lying position with the head of the bed elevated. • Suctioning is rarely needed, but when appropriate, suction should be gentle and only at the level of the mouth, throat, and nasal pharynx. • Administer anticholinergic drugs (transdermal scopolamine, hyoscyamine) as appropriate, recognizing and discussing with the family that they will not decrease already existing secretions. • Insert catheter and/or use absorbent padding. • Carefully assess for urinary retention, because restlessness can be a related symptom. • Reposition every few hours as appropriate. • Anticipate needs such as sips of fluids, oral care, changing of bed pads and linens, and so on. • Interpret the patient’s unconsciousness to the family as part of the normal dying process. • Provide for total care, including incontinence of urine and stool. • Encourage family members to speak slowly and gently to the patient, with the assurance that hearing remains intact. (continued)

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Table 32–2 Symptoms in the Normal Progression of Dying and Suggested Interventions (continued) Symptoms Cardiorespiratory • Heart rate may double, strength of contractions decrease; rhythm becomes irregular. • Patient feels cool to the touch and becomes diaphoretic. • Cyanosis is noted in the tip of the nose, nail beds, and knees; extremities may become mottled (progressive mottling indicates death within a few days); absence of a palpable radial pulse may indicate death within hours. Renal/Urinary • A precipitous drop in urinary output.

Suggested Interventions • Interpret these changes to family members as part of the normal dying process. • Frequent linen changes and sponge baths may enhance comfort.

• Interpret to the family the drop in urinary output as a normal sign that death is near. • Carefully assess for urinary retention; restlessness can be a related symptom.

arrive, for a date or event to pass, or even for family members to leave—even if the leave-taking is brief. For this reason, it is crucial to ask family members who wish to be present at the time of death whether they have thought about the possibility they will not be there. This opens an essential discussion regarding the time of death and its unpredictability. Gently reminding family members of that possibility can assist them in preparing for any eventuality.

Determining That Death Has Occurred Death often occurs when health professionals are not present at the bedside or in the home. Regardless of the site of death, a plan must be in place for who will be contacted, how the death pronouncement will be handled, and how the body will be removed. This is especially important for deaths that occur outside a health care institution. Death pronouncement procedures vary from state to state, and sometimes from county to county within a state. In some states, nurses can pronounce death; in others, they cannot. In inpatient settings, the organization’s policy and procedures are followed. In hospice home care, generally the nurse makes a home visit, assesses the lack of vital signs, contacts the physician, who verbally agrees to sign the death certificate, and then contacts the funeral home or mortuary. Local customs, the ability of a health care agency to ensure the safety of a nurse during the home visit, and provision for “do-not-resuscitate” orders outside a hospital setting, among other factors, account for wide variability in the practices and procedures surrounding pronouncement of death in the home. Although practices vary widely, the police or coroner may need to be called if the circumstances of the death were unusual, were associated with trauma (regardless of the cause of the death), or occurred within 24 hours of a hospital admission. The practice of actual death pronouncement varies widely and is not often taught in medical school or residencies. The

customary procedure is to first identify the patient, then note the following 32: • General appearance of the body. • Lack of reaction to verbal or tactile stimuli. • Lack of pupillary light reflex (pupils will be fi xed and dilated). • Absent breathing and lung sounds. • Absent carotid and apical pulses (in some situations, listening for an apical pulse for a full minute is advisable). Documentation of the death is equally important and should be thorough and clear. The following guidelines are suggested:32 • Patient’s name and time of call. • Who was present at the time of death and at the time of the pronouncement. • Detailed findings of the physical examination. • Date and time of death pronouncement (either pronouncement by the nurse, or the time at which the physician either assessed the patient or was notified). • Who else was notified and when—for example, additional family members, attending physician, or other staff members. • Whether the coroner was notified, rationale, and outcome, if known. • Special plans for disposition and outcome (e.g., organ or body donation, autopsy, special care related to cultural or religious traditions).

Care of the Body After Death Regardless of the site of death, care of the body is an important nursing function. In gently caring for the body, the nurse can continue to communicate care and concern for the patient and family members, and model behaviors that may be helpful as the family members continue their important grief work.

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(continued)

Figure 32–1. Sample handout for families responsible for end-of-life care. Source: Courtesy of Hospice Care of Boulder and Broomfield Counties, Colorado, June 2004.

Caring for the body after death also calls for an understanding of the physiological changes that occur. By understanding these changes, the nurse can interpret and dispel any myths and explain these changes to the family members, thereby assisting

the family in making their own personal decisions about the time immediately following death and funeral plans. A classic article regarding postmortem care emphasized that, although postmortem care may be a ritualized nursing

Planning for the Actual Death

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Figure 32–1. (continued)

procedure, the scientific rationale for the procedure rests on the basics of the physiological changes that occur after death.33 These changes occur at a regular rate depending on the temperature of the body at the time of death, the size of the body,

the extent of infection (if any), and the temperature of the air. The three important physiological changes—rigor mortis, algor mortis, and postmortem decomposition—are discussed along with the relevant nursing implications in Table 32–3.

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Table 32–3 Normal Postmortem Physiological Changes and Their Implications for Nursing Change

Underlying Mechanisms

Nursing Implications

Rigor mortis

Approximately 2 to 4 hours after death, adenosine phosphate (ATP) ceases to be synthesized due to the depletion of glycogen stores. ATP is necessary for muscle fiber relaxation, so the lack of ATP results in an exaggerated contraction of the muscle fibers that eventually immobilizes the joints. Rigor begins in the involuntary muscles (heart, gastrointestinal tract, bladder, arteries) and progresses to the muscles of the head and neck, trunk and lower limbs. After approximately 96 hours, however, muscle chemical activity totally ceases, and rigor passes. Persons with large muscle mass (e.g., body builders) are prone to more pronounced rigor mortis. Conversely, frail elderly persons and persons who have been bed bound for long periods are less subject to rigor mortis.37

The guiding principle is to understand rigor mortis is a natural and temporary post-mortem change and immediate positioning of the deceased does not impact the appearance of the body long term. After death position the person in a relaxed and peaceful manner as is possible. For example, close the eyes, prop the jaw closed and fold the hands. If rigor mortis does occur, it can often be “massaged out” by the funeral director.37 Finally, by understanding this physiology, the nurse can also reassure the family about the myth that due to rigor mortis, muscles can suddenly contract and the body can appear to move.

Algor mortis

After the circulation ceases and the hypothalamus stops functioning, internal body temperature drops by approximately 1° C or 1.8° F per hour until it reaches room temperature. As the body cools, skin loses its natural elasticity. If a high fever was present at death, the changes in body temperature are more pronounced and the person may appear to “sweat” after death. Body cooling may also take several more hours.37

The nurse can prepare family members for the coolness of the skin to touch or the increased moisture by explaining the changes that happen after death. The nurse may also suggest kissing the person on their hair instead of their skin. The skin, due to loss of elasticity, becomes fragile and easily torn. If dressings are to be applied, it is best to apply them with either a circular bandage or paper tape. Handle the body gently as well, being sure to not place traction on the skin.

Postmortem decomposition or “liver mortis”

Discoloration and softening of the body are caused largely by the breakdown of red blood cells and the resultant release of hemoglobin that stains the vessel walls and surrounding tissue. This staining appears as a mottling, bruising, or both in the dependent parts of the body as well as parts of the body where the skin has been punctured (e.g., intravenous or chest tube sites).37 Often this discoloration becomes extensive in a very short time. The remainder of the body has a gray hue. In cardiac-related deaths, the face often appears purple in color regardless of the positioning at or after death.37

As the body is handled (e.g., while bathing and dressing), the nurse informs the family member about this normal change that occurs after death. Prop the body up with pillows under the head & shoulders or raise the head of the bed approx 30°. Remove heavy blankets & clothing & cover the deceased with a light blanket of sheet.37

Care of and respect for the body after death by nursing staff should clearly communicate to the family that the person who died was indeed important and valued. Often, caring for the body after death provides the needed link between family members and the reality of the death, recognizing that everyone present at the time of death and soon after will have a different experience and a different sense of loss. Many institutions no longer require nursing staff to care for patients after death or perform postmortem care. Further, there are few resources related to postmortem care, and those available are largely found in the British nursing literature and do not reflect a thorough knowledge of post-mortem changes.34–36

A kind, gentle approach and meticulous attention to detail grounded in knowledge of the physiology of dying and death is imperative. Rituals that family members and others present find comforting should be encouraged. Rituals are practices within a social context that facilitate and provide ways to understand and cope with the contradictory and complex nature of human existence. They provide a means to express and contain strong emotions, ease feelings of anxiety and impotence, and provide structure in times of chaos and disorder. Rituals can take many forms—a brief service at the time of death, a special preparation of the body, as in the Orthodox Jewish

Planning for the Actual Death tradition, or an Irish wake, where, after paying respect to the person who has died, family and friends gather to share stories, food, and drink. Of utmost importance, however, is to ensure that family members see the ritual as comforting and meaningful. It is the family’s needs and desires that direct this activity—not the nurse’s. There are, again, no rules that govern the appropriateness of rituals; rituals are comforting and serve to begin the process of healing and acceptance. To facilitate the grieving process, it is often helpful to create a pleasant, peaceful, and comfortable environment for family members who wish to spend time with the body, according to their desires and cultural or religious traditions. The nurse should consider engaging family members in after-death care and ritual by inviting them to either comb the hair or wash the person’s hands and face, or more, if they are comfortable. Parents can be encouraged to hold and cuddle their baby or child. Including siblings or other involved children in rituals, traditions, and other end-of-life care activities according to their developmental level is also essential. During this time, family members should be invited to talk about their family member who has died, and encouraged to reminisce—valuable rituals that can help them begin to work through their grief.35 The family should be encouraged to touch, hold, and kiss the person’s body, as they feel comfortable. Parents may wish to clip and save a lock of hair as a keepsake. The nurse may offer to dress the person’s body in something other than a hospital gown or other nightclothes. Babies may be wrapped snugly in a blanket. Many families choose to dress the body in a favorite article of clothing before removal by the funeral home. It should be noted that, at times, when a body is being turned, air escapes from the lungs, producing a “sighing” sound. Informing family members of this possibility is wise. Again, modeling gentle and careful handling of the body can communicate care and concern on the part of the nurse and facilitate grieving and the creation of positive and long-lasting memories. Postmortem care also includes, unless an autopsy or the coroner is involved, removal of any tubes, drains, and other devices. In home care settings, these can be placed in a plastic bag and given to the funeral home for disposal as medical waste or simply double-bagged and placed in the family’s regular trash. Placing a waterproof pad, diaper, or adult incontinence brief on the patient often prevents soiling and odor as the patient’s body is moved and the rectal and urinary bladder sphincters relax. Packing of the rectum and vagina is considered unnecessary, because not allowing these areas to drain increases the rate of bacterial proliferation that naturally occurs.37 Occasionally families, especially in the home care setting, wish to keep the person’s body at home, perhaps to wait for another family member to come from a distance and to ensure that everyone has adequate time with the deceased. If the family wishes the body to be embalmed, this is best done within 12 hours. If embalming is not desired, the body can remain in the home for approximately 24 hours before further decomposition and odor production occur. The nurse should suggest to the family that they adjust the temperature in the immediate area to a comfortable but cooler level and

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remove heavy blankets or coverings 37 Be sure, however, to inform the funeral director that the family has chosen to keep the body at home a little longer. Finally, funeral directors are a reliable source of information regarding postdeath changes, local customs, and cultural issues. The care of patients and families near the time of death and afterward is an important nursing function—arguably one of the most important. As the following case studies are reviewed, consider how the nurse interceded in a positive manner, mindful of the changing tempo of care and the changing patient and family needs, desires, and perspectives.

o= CASE STUDY Harold, An 88-Year-Old Gentleman with Pneumonia Harold is an 88-year-old retired farmer who lived with his wife of 68 years in their rural home. They have two adult sons. The youngest son recently retired from farming, and is married and lives close by. The oldest son is developmentally disabled and lives with Harold and his wife. Harold has a history of multiple chronic illnesses: diabetes, cardiovascular disease, arthritis, and minimal kidney function. Ten years ago, a pacemaker was placed. After acquiring winter colds that developed into pneumonia, both he and his wife were admitted to the hospital for treatment. They were placed together in a semiprivate room, and began IV antibiotic treatment. Goals and framework of care: Their family physician hoped to that 2–3 days of IV antibiotics and fluids would assist both Harold and his wife in getting through what was hoped was a treatable pneumonia. “Let’s start treatment and see. Hopefully we’ll have them both home in 3–4 days.” Initially, having the husband and wife in the same room was believed a good idea. Within 24 hours of the admission, the staff soon realized that Harold was sicker and weaker than his wife. Because his wife was in the same room, he would ask her to get out of bed to help him with personal care, and would not allow the nursing staff to assist him. The nursing staff decided to separate the Harold and his wife, which was upsetting to both of them. By the end of the second day, it was obvious that Harold was not responding as hoped to the IV antibiotics and was developing respiratory distress and markedly increased anxiety. Because of the concern about Harold’s changing respiratory status, he was moved to the intensive care unit. Goals and framework of care: Watchful waiting continued. Support efforts for Harold’ wife and family were facilitated. Could she visit in the ICU when she might still be contagious to others? Arrangements were made for other family members to visit and report to her, and she was allowed to visit once a day, when appropriate precautions for all could be maintained.

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By the third day, it was obvious that Harold’s wife was recovering. She was placed on oral antibiotics and arrangements were made for her to move to the in-hospital rehabilitation unit so that she could remain close by. Harold’s condition remained unstable and intubation was discussed with his wife and sons. Harold had never discussed with his family his wishes for such intervention, and they were unsure of what he would desire. Harold declined discussion about the topic, saying he was too anxious. The physician handling his care had known Harold for many years, and the physician’s father and Harold had been friends since childhood. Their families had neighboring farm land and shared membership in a local church. The physician recognized that their long-term ties, at times, clouded the difficult treatment decisions for his friend. Before a consensus decision with the family “not to intubate” could be reached, Harold’s condition further deteriorated, and he was intubated emergently. Goals and framework of care: With saddened emotions, Harold’s family suddenly was faced with trying to decide, “What would Harold want if he could speak and tell us?” It was agreed to allow Harold to ‘rest’ for 24 hours on the ventilator, and then come together. The family gathered and wanted to talk privately. Nursing staff assisted the family by contacting their minister, who arrived shortly. The family did not want other staff to join them. When the nurse brought the minister to the family, she asked Harold’s wife to tell her sons the stories about how they had met, his recollection of their early marriage, and some of his most pleasant memories. “Maybe it will make things clearer for all of you to think about what Harold could tell you if he were able to.” She quietly left the room, as the reminiscing began. Shortly after the meeting ended, Harold’s wife came to the nurse and asked to have the physician called. The family message was . . . “one more day. If he’s not better tomorrow, we’d like you to remove the ventilator.” The family gathered the next morning with their minister. Harold’s youngest son stayed with him as the ventilator was removed. Harold died peacefully an hour later, with the entire family at his side. Critical Points • Death can suddenly become an expectation of a hospital admission for a perceived treatable process. Nurses who note a patient’s downhill trajectory early can begin sharing objective observations to the family that will help prepare them if the trajectory does not change. • Elderly patients with multiple chronic illnesses are frequently overlooked for discussions with their physicians about end-of-life goals. • When advance directives are completed, both primary and secondary decision-makers should be made aware of the patient’s wishes, especially in elderly patients with multiple chronic illnesses.

• Life-extending procedures such as pacemaker placement should be looked upon as an opportunity to open conversations with patient and health care providers about goals for end-of-life care. o]

o= CASE STUDY Elaine G, A 28-Year-Old Woman with Breast Cancer Elaine was breast feeding her first child, who was 8 months old, when she noted a mass in her breast. She immediately saw her physician, who was not certain of the mass’s relationship to lactation but ordered an ultrasound of the breast to be “on the safe side.” The ultrasound was completed and was soon followed by a mammogram, biopsy, and diagnosis of Stage II breast cancer with one positive lymph node. Elaine underwent a staging workup, surgery, and started chemotherapy within 3 weeks of noticing the breast lump. It was difficult for her to see past the positive lymph node; all discussions seemed to come back to it, and the meaning of one positive node. Her anxiety was apparent during her interactions with care providers. Program staff worked to provide extra time for her, and strong emotional support. Family and friends were present and expressed the desire to be ready to help at any time. Goals and framework of care: Despite Elaine’s positive lymph node, the cancer was still considered ‘early’ and very treatable. Elaine successfully completed chemotherapy and radiation therapy and was set up for routine surveillance. She was encouraged to use the program’s psychosocial resources to help her with any questions, and particularly when her fears of recurrence and a dismal future seemed to immobilize her. Elaine openly talked of what would happen if her cancer did reoccur. Who would assist her husband in raising her child? What would be important for her to leave her child? She was encouraged to think these things through, so she could have the appropriate discussions with her husband and then move forward as best she could. Slowly, she was able to do this. Elaine focused on regaining her past lifestyle. She returned to community work on a part time basis, and often talked of the value of her work in helping others. She had a great sense of ‘giving back.’ Life seemed to settle for her, until one day when she called reporting a sudden onset of back pain. Bone scan and CT showed bone and early lung metastasis. Elaine and her husband received imaging results together in the clinic, and then opted to return the next day to speak with the medical oncologist. Goals and framework of care: Together with her medical oncologist, Elaine and her husband mapped out a plan for initial treatment. Although she was not eligible for clinical trials, she was interested in looking for

Planning for the Actual Death any opportunity that would give her the best chance of quality time. She clearly stated her goal “to receive treatment that would buy as many days of ‘quality time’ that were available, defining quality time as being present, participating, and enjoying her son’s daily life.” Her goal had been well thought out. Elaine started on chemotherapy. She responded well for 9 months, and had an “almost normal” life. When the secondline chemotherapy failed to control her disease, she agreed to the third-line chemotherapy. Although she tolerated the third line well, her disease progressed in spite of the treatment. Scans and lab work were not necessary to tell the staff that her liver function was rapidly declining. Ascites from her new liver metastasis complicated her comfort level and functional status. She agreed to hospitalization for symptomatic evaluation. Goals and framework of care: During her admission to the hospital, Elaine was offered a fourth-line chemotherapy regimen. After a quick discussion with her husband, she refused. She asked only that a plan for management of her discomfort be addressed, and that hospice arranged for her. Elaine said her good-byes to the staff. She was discharged with a home hospice program, stating she simply wanted to have the freedom to have her son with her to hug and cuddle without any restrictions or expectations. She died at home, surrounded by prepared, loving and caring family and friends, 48 hours later. Critical Points • Patients will often process their disease trajectory with minimal help other than the supportive, listening ears of their care providers. • Patient fears are based in their reality and we as care providers must not minimize or dismiss them. • Patients who set clearly defined goals and are given the opportunity to share them with their care providers are generally observed to have a higher quality death experience for themselves, their family members, and the staff who care for them. o]

o]

Summary Assisting and walking alongside dying patients and their families, especially near and after death, is an honor and privilege. Nowhere else in the practice of nursing are we invited to be companions on such a remarkable journey as that of a dying patient and his or her family. Likewise, nowhere else in the practice of nursing are our words, actions, and guidance more remembered and cherished. Caring for dying

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patients and families is indeed the essence of nursing. Take this responsibility seriously, understanding that although it may be stressful and difficult at times, it comes with personal and professional satisfaction beyond measure. Listen to your patients and their families. They are the guides to this remarkable and momentous journey. Listen to them with a positive regard, empathy, and genuineness, and approach their care with an acute attention to every detail. They—in fact, all of us—are counting on you.

REFERENCES 1. SUPPORT Study Principal Investigators. A controlled trial to improve care for seriously ill hospitalized patients: A Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). JAMA 1995;274:1591–1598. 2. Ellershaw J, Ward C. Care of the dying patient: The last hours or days of life. BMJ 2003;326:30–34. 3. Fürst CJ, Doyle D. The terminal phase. In: Doyle D, Hanks G, Cherny NI, Calman K, eds. Oxford Textbook of Palliative Medicine (3rd ed). Oxford: Oxford University Press; 2005:1119–1133. 4. Wildiers H, Menten J. Death rattle: Prevalence, prevention and treatment. J Pain Symptom Manage 2002;23:310–317. 5. Klinkenberg M, Willems DL, van der Wal G, Deeg DJ. Symptom burden in the last week of life. J Pain Symptom Manage 2004;27:5–13. 6. Potter J, Hami F, Bryan T, Quigley C. Symptoms in 400 patients referred to palliative care services: Prevalence and patterns. Palliat Med 2003;17(4):310–4. 7. McNicol E, Horowicz-Mehler N, Fisk RA, et al. Management of opioid side effects in cancer-related and chronic noncancer pain: A systematic review. Pain 2003;4(5):231–56. 8. Glare P, Walsh D Sheehan D. The adverse effects of morphine: a propsective survey of common symptoms during repeated dosing for chronic pain. Am J Hosp Palliat Care 2006;23(3):229–35. 9. Ventafridda V, Ripamonti C, De Conno F, Tamburini M, Cassileth BR. Symptom prevalence and control during cancer patients’ last days of life. J Palliat Care 1990;6:7–11. 10. Hall P, Schroder C, Weaver L. The last 48 hours of life in long-term care: A focused chart audit. J Am Geriatr Soc 2002;50:501–506. 11. Ferris F. Last hours of living. Clin Ger Med 2004; 20:641–67. 12. Rogers C. On Becoming a Person: A Therapist’s View of Psychology. Boston: Houghton Mifflin, 1961. 13. Twycross R. Symptom Management in Advanced Cancer (2nd ed). Oxan, UK: Radcliffe Medical Press, 1997. 14. Du Boulay S. Cicely Saunders: Founder of the Modern Hospice Movement. London: Hodder and Stoughton, 1984. 15. Karlawish HT, Quill T, Meier D (for the ACP-ASIM End of Life Care Consensus Panel). A consensus-based approach to providing palliative care to patients who lack decision making capacity. Ann Intern Med 1999;130:835–840. 16. Osenga K, Cleary JF. Fever and sweats. In: Berger AM, Shuster JL, Von Roenn JH. Principles and Practice of Palliative Care and Supportive Oncology (3rd ed). New York: Lippincott Williams & Wilkins; 2007:105–116.

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17. Peberdy MA, Kaye W, Ornato JP, et al. Cardiopulmonary resuscitation of adults in the hospital: A report of 14,720 cardiac arrests from the National Registry of Cardiopulmonary Resuscitation. Resuscitation 2003;58 297–308. 18. Ebell MH, Becker LA, Barry HC, Hagen M. Survival after inhospital cardiopulmonary resuscitation: A meta-analysis. J Gen Int Med 1998;13(12):805–16. 19. Reisfield GM, Wallace SK, Munsell MF, Webb FJ, Alvarez ER, Wilson GR. Survival in cancer patients undergoing in-hospital cardiopulmonary resuscitation: a meta-analysis. Resuscitation 2006;71:152–160. 20. Dunn H. Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care and the Patient with a Life-Threatening Illness (4th ed). Herndon, VA: A & A Publishers, 2001. 21. Zerwekh J. Do dying patients really need IV fluids? Am J Nurs 1997;97:26–31. 22. Bavin L. Artifical rehydration in the last days of life: Is it beneficial? Int J Palliat Nurs 2007;13(9):445–9. 23. Hospice and Palliative Nurses Association. HPNA Position Statement: Withholding and/or Withdrawing Life Sustaining Therapies. Pittsburgh: Hospice and Palliative Nurses Association, 2008. 24. Working Party on Clinical Guidelines in Palliative Care. Changing Gear—Guidelines for Managing the Last Days of Life. London: National Council for Hospice and Specialist Palliative Care Services, 2006. 25. Harrington MD, Luebke DL, Lewis WR, Aulisio MP, Johnson NJ. Fast Fact and Concept #112: Implantable Defibrillator (ICD) at End of Life. 2004. Available at: http://www.eperc.mcw.edu/ FastFactPDF/Concept20112.pdf (accessed January 5, 2009). 26. Davison, SN, Rosielle DA. Fast Fact and Concept #207: Withdrawal of Dialysis: Decision-Making. 2008. Available at http://www.eperc.mcw.edu/FastFactPDF/Concept20207.pdf (accessed January 5, 2009). 27. Davison, SN, Rosielle DA. Fast Facts and Concepts #208: Clinical Care Following Withdrawal of Dialysis. 2008. Available

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at http://www.eperc.mcw.edu/FastFactPDF/Concept20208. pdf (accessed January 5, 2009). Kelly C, Yetman L. At the end of life. Can Nurse 1987;83: 33–34. Quill TE, Hollaway RG, Shah MS, Caprio TV, Storey P. Primer of Pallaitive Care (4th ed). Glenview, IL: American Academy of Hospice and Palliative Medicine, 2007. Kehl KA, Kirchoff KT, Finster MP, Cleary JF. Materials to prepare hsopice families for dying in the home. J Palliat Med 2008;11(7):969–972. Department of Health and Human Services, Health Care Financing Administration. Medicare and Medicaid Programs; Hospital Conditions of Participation; Identification of Potential Organ, Tissue, and Eye Donors and Transplant Hospitals’ Provision of Transplant-Related Data. Final rule. 63 Federal Register 119 (1998) (codified at 42 CFR §482.45). Weissman DE, Heidenreich CA. Fast Fact and Concept #004: Death Pronouncement (2nd ed). 2005. Available at http://www. eperc.mcw.edu/FastFactPDF/Concept20004.PDF (accessed January 5, 2009). Pennington EA. Postmortem care: More than ritual. Am J Nurs 1978;75:846–847. Beattie S. Hands-on-help: Post-mortem care. RN 2006;69(10):24ac1–4. Higgins D. Clinical practical programs: Carrying out last offices, Part 1—Preparing for the procedure. Nurs Times 2008;104(37):20–1. Higgins D. Clinical practical programs: Carrying out last offices, Part 2—Preparation of the body. Nurs Times. 2008;104(38):24–5. Starks, J. Licensed Funeral Director, Starks Funeral Parlor, Salt Lake City, UT, personal communication, January, 2009. Ambuel B, Weissman D. Fast Fact and Concept #016: Conducting a Family Conference (2nd ed). 2005. Available at http://www.eperc.mcw.edu/FastFactPDF/Concept20016. PDF (accessed January 5, 2009).

IV Spiritual Care

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Elizabeth Johnston Taylor

Spiritual Assessment Everything we do affects the patient’s spirit! Approaching a patient with empathy, caring, an open mind, making good eye contact, touch, active listening, all the things a nurse does. If you skip or shortchange any of these things, you are not only shortchanging the patient, you are cheating yourself out of enjoying the art of nursing. Always, always, always listen. People love to share and communicate their stories Just be patient and willing to listen. The information learned is invaluable!—Registered nurses responding to a survey about providing spiritual care

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Key Points Spiritual assessment precedes effective spiritual caregiving. Because palliative care patients and their family members use spiritual coping strategies, and spiritual well-being can buffer the distress of dying, spiritual care is integral to palliative care. Numerous typologies identifying the dimensions of spirituality exist and provide guidance for what to address in a spiritual assessment. A two-tiered approach to spiritual assessment allows the nurse to first conduct a superficial assessment to screen for spiritual problems or needs. If needed, a more comprehensive spiritual assessment should be conducted by a competent professional, typically a chaplain. Most experts recommending a spiritual screening question agree that it is first important to assess how important or relevant spirituality is to the patient. Other salient spiritual screening questions include: “How does your spirituality help you to live with your illness?” and “What can I/we do to support your spiritual beliefs and practices?” Spiritual assessment strategies include spiritual histories, life stories, pictorial depictions of spiritual experience, as well as the traditional verbal probing. Although spirituality should be assessed near the time of admission to palliative care service, the process of assessment should be ongoing. Spiritual assessment data should be documented to at least some extent.

To solve any problem, one must first assess what the problem is. Consequently, the nursing process dictates that the nurse begin care with an assessment of the patient’s health needs. Although palliative nurses are accustomed to assessing patients’ pain experiences, hydration status, and so forth, they less frequently participate in assessing patients’ and family members’ spirituality. Because spirituality is an inherent and integrating, and often extremely valued, dimension for those who receive palliative nursing care, it is essential that palliative care nurses know to some degree how to conduct a spiritual assessment. This chapter reviews models for spiritual assessment, presents general guidelines on how to conduct a spiritual assessment, and discusses what the nurse ought to do with data from a spiritual assessment. These topics are prefaced by arguments supporting the need for spiritual assessments, descriptions of what spirituality “looks like” among the terminally ill, and risk factors for those who are likely to experience spiritual distress. But first, a description of spirituality is in order.

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What Is Spirituality? Numerous recent analyses of the concept of spirituality have identified key aspects of this ethereal and intangible phenomenon.1 Conceptualizations of spirituality often include the following as aspects of spirituality: the need for purpose and meaning, forgiveness, love and relatedness, hope, creativity, and religious faith and its expression. A well-accepted definition for spirituality authored by Reed2 proposed that spirituality involves meaning-making through intrapersonal, interpersonal, and transpersonal connection. A more recent definition that incorporates themes found in nursing literature is Narayanasamy’s3 description of spirituality as “the essense of our being and it gives meaning and purpose to our existence” (p. 140). Narayanasamy accepts that spirituality is 647

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a “guiding force,” an “inner source of power,” and “source of wisdom”: “It drives us to search for meaning and purpose, and establish positive and trusting relationships with others. There is a mysterious nature to our spirituality and it gives peace and tranquility through our relationship with ‘something other’ or things we value as supreme” (p. 140). Usually, spirituality is differentiated from religion—the organized, codified, and often institutionalized beliefs and practices that express one’s spirituality.1 Or to use Narayansamy’s3 metaphor: “Spirituality is more of a journey and religion may be the transport to help us in our journey” (p. 141). Definitions of spirituality typically include transcendence—that is, spirituality explains persons’ needs to transcend the self, often manifested in a recognition of an Ultimate Other, Sacred Source, Higher Power, divinity, or God. Although these definitions allow for an open interpretation of what a person considers to be sacred or Transcendent, some have argued that such a definition for spirituality is inappropriate for atheistics, humanists, and those who do not accept a spiritual reality.4 Indeed, a pluralistic definition of spirituality (however “elastic” and vague it is) is necessary for ethical practice, and hence a spiritual assessment process that is sensitive to the myriad of world views is essential—if it is even appropriate for those who reject a spiritual reality.5 The spiritual assessment methods introduced in this chapter are all influenced inherently by some conceptualization of spirituality. Some, however, have questioned whether spiritual assessment is possible, given the broad, encompassing definition typically espoused by nurses.5,6 Bash contended that spirituality is an “elastic” term that cannot be universally defined. Because a patient’s definition of spirituality may differ from the nurse’s assumptions about it, Bash argued that widely applicable tools for spiritual assessment are impossible to design. It is important to note, therefore, that the literature and methods for spiritual assessment presented in this chapter are primarily from the United States and United Kingdom, influenced most by Western Judeo-Christian traditions and peoples. Hence, they are most applicable to these people.

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Why is it Important for a Palliative Care Nurse to Conduct a Spiritual Assessment? Spiritual awareness increases as one faces an imminent death.8–12 Although some may experience spiritual distress or “soul pain,” others may have a spiritual transformation or experience spiritual growth and health.13 There is mounting empirical evidence to suggest that persons with terminal illnesses consider spirituality to be one of the most important contributors to quality of life.14,15 For example, Taylor16 observed that spiritual well-being functioned to protect terminal cancer patients against end-of-life despair. The author found spiritual well-being to have moderately strong inverse relationships with the desire for a hastened death, hopelessness, and suicidal ideations. Religious beliefs and practices

(e.g., prayer, beliefs that explain suffering or death) are also known to be valued and frequently used as helpful coping strategies among those who suffer and die from physical illness.15–19 Family caregivers of seriously ill patients also find comfort and strength from their spirituality that assists them in coping.18–23 Over a decade ago, a national telephone survey of 1200 adults also confirmed that Americans project that their spiritual beliefs (e.g., beliefs in an afterlife, beliefs about life belonging to God, and being “born again”) will be important sources of comfort when they are dying.24 The above themes from research imply that attention to the spirituality of terminally ill patients and their caregivers is of utmost importance. That is, if patients’ spiritual resources assist them in coping, and if imminent death precipitates heightened spiritual awareness and concerns, and if patients view their spiritual health as most important to their quality of life, then spiritual assessment that initiates a process promoting spiritual health is vital to effective palliative care.9,10 Underscoring these theoretical reasons for spiritual assessment is a very pragmatic one: the mandate of the Joint Commission to conduct a spiritual assessment for clients entering an approved facility.25 Until recently, the Joint Commission mandated that a spiritual assessment should, at least, “determine the patients denomination, beliefs, and what spiritual practices are important.” Now they stipulate that the institution define the scope and process of the assessment, and who completes it. But why should palliative care nurses be conducting spiritual assessments? Hunt and colleagues26 accepted that although chaplains are the spiritual care experts, all members of a hospice team participate in spiritual caregiving. In surveying hospice team members, Millison and Dudley27 found nurses are often the ones responsible for completing spiritual assessments. Other authors imply that nurses are pivotal in the process of spiritual assessment.1,28–30 Considering nurses’ frontline position, coordination role, and intimacy with the concerns of patients, the holistic perspective on care, and even their lack of religious cloaking, nurses can be the ideal professionals for completing an initial spiritual assessment if they have some preparation for doing so. However, nurses must recognize that they are not specialists in spiritual assessment and caregiving; they are generalists. Most oncology and hospice nurses perceive that they do not receive adequate training in spiritual assessment and care.31,32 In fact, it is this lack of training, accompanied by role confusion, lack of time, and other factors that nurses often cite as barriers to completing spiritual assessments.33,34 A study of 71 British hospital nurses, nearly half of whom failed to document patient spirituality, reported that they were noncompliant mostly because they did not think the spiritual assessment was necessary or thought the assessment question was intrusive.30 Only 23 of the 30 noncompliant nurses identified lack of time as an obstacle. Three-quarters of these nurses agreed that knowing what the spiritual assessment data would be used for and receiving more education about how to assess and care for spiritual distress would improve

Spiritual Assessment their performance. When a nurse’s assessment indicates need for further sensitive assessment and specialized care, a referral to a specialist (e.g., chaplain, clergy, patient’s spiritual director) is in order.

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How Does Spirituality Manifest Itself? To understand how to assess spirituality, the palliative care nurse must know what to look for. What subjective and objective observations would indicate spiritual disease or health? To approach an answer, it is helpful to consider two research studies exploring qualitatively what are clients’ perceptions of spiritual need. Hermann35 interviewed 19 hospice patients to determine what specifically their spiritual needs were. The 29 resulting spiritual needs were categorized under the following themes: need for involvement and control, need for companionship, need to finish business, need to experience nature, need for a positive outlook, as well as need for religion. Taylor20 interviewed 28 cancer patients and family caregivers, some for whom death was imminent, and identified eight categories of spiritual need. These spiritual needs included the need to: • Relate to God or an Ultimate Other (e.g., the need to believe God will or has healed, the need to remember God’s providence, the need to remember that “there is Someone out there looking out for me”) • Have gratitude and optimism (e.g., the need to keep a positive outlook, to count one’s blessings, or just enjoy life) • Love others (e.g., to forgive or “get right” with others, to return others’ kindnesses, to make the world a better place, to protect family members from witnessing the suffering from cancer) • Receive love from others (e.g., the need to feel valued and appreciated by family, to know others are praying for you, or just being with others considered to be family) • Review spiritual beliefs (e.g., wondering if religious beliefs are correct, thinking about the unfairness of personal circumstances, or asking “why?” questions) • Create meaning, find purpose for cancer and for life (e.g., the need to “get past” asking “why me?” and becoming aware of positive outcomes from illness, lessening the frustration of not being able to do meaningful work, or sensing that there is a reason for being alive) • Sustain religious experience (e.g., reading spiritnurturing material, having quiet time to reflect, or receiving a sacrament from a religious leader) • Prepare for death (e.g., balancing thoughts about dying with hoping for health, cognitively creating a purpose for death, or making sure personal business is in order).

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Dudley and colleagues36 found hospice spiritual assessment forms often include more specific spiritual problems, such as fear of death or abandonment, spiritual emptiness, unresolved grief, unresolved past experiences, confusion or doubts about beliefs, and the need for reconciliation, comfort, or peace. Although the terminology “spiritual need” may suggest a problem, spiritual needs can also be of a positive nature. For example, patients can have a need to express their joy about sensing closeness to others, or have a need to pursue activities that allow expression of creative impulses (e.g., artwork, music making, writing). Although the following models for conducting a spiritual assessment will provide more understanding of how spirituality manifests, the reader is referred to Galek and colleagues,37 Taylor,1 Highfield and Cason’s38 seminal article for further concrete indicators of spiritual need.

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Spiritual Assessment Models Health-care professionals from multiple disciplines offer models for spiritual assessment. The most useful models from chaplaincy, medicine, social work, and nursing will be presented here. Although some assessment models have been published during the past few years, many were developed in the 1990s, when the research about spiritual care began to proliferate. Although some were developed by clinicians caring for the terminally ill, others—easily adapted or used with those at the end of life—were developed for general use for those with an illness. Many advocate a two-tiered approach to spiritual assessment.1,7,26,39 That is, a brief assessment for screening purposes is conducted when a patient enters a health care institution for palliative care. If the screening assessment generates an impression that there are spiritual needs, then spiritual care can only be planned if further information is collected. The second tier of assessment allows for focused, in-depth assessment. Some chaplains further distinguish a spiritual assessment from a spiritual history, an indepth review of one’s spiritual journey through life (best done by a trained chaplain or spiritual care expert). After reviewing recommended spiritual screening questions, more comprehensive models or approaches to spiritual assessment will be presented.

Screening To appreciate the spiritual plurality within society, that some persons may not experience a spiritual reality, Pesut and colleagues5 suggest that an initial screening must therefore assess for this basic orientation. Others assume spirituality is universal and posit that a spiritual screening should check for the significance of the beliefs and practices to the present illness circumstances and ascertain how the patient may want spiritual support from the health care team. Various clinical

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authors profer single questions for broaching the topic of spirituality with a patient. For example: • How important is spirituality or religion to you?40 Kub and colleagues,41 in their research with 114 terminally ill persons, found that a single question about the importance of religion to be more discriminating than a question about frequency of attendance at religious services—a question that has often been the sole “spiritual assessment” in some institutions. • What do you rely on in times of illness?42 • Are you at peace? This question was found to correlate highly with spiritual and emotional well-being in large a study of terminally ill patients.43 Two other screening approaches that are very concise have been proposed by physicians Lo and colleagues,44 who suggested the following questions for use in palliative care settings: • Is faith/religion/spirituality important to you in this illness? Has faith been important to you at other times in your life? • Do you have someone to talk to about religious matters? Would you like to explore religious matters with someone? Striving to have an even more streamlined spiritual assessment, Matthews and colleagues’45 proposed initial spiritual assessments could be limited to asking “Is your religion (or faith) helpful to you in handling your illness?” and “What can I do to support your faith or religious commitment?” Several clinicians have devised mnemonic tools for use in spiritual assessment (see Table 33–1).46–50 Although some of these are fairly comprehensive, some of them are designed so as to collect superficial information—to screen. The most widely cited tool is Pulchaski’s46 FICA tool. FICA prompts the clinician to assess to what faith and beliefs the patient has (F), how important or influential this faith is (I), what faith community or spiritual support group they participate in (C), and how the client would like the health/hospice care team to address their spiritual needs (A). This mnemonic is easy to recall, and provides a bit more information than would the single screening items above. Hodge51 essentially proposed the same content for his brief assessment, arguing that it well meets The Joint Commission requirement. Hodge’s assessment questions include: • “I was wondering if spirituality or religion is important to you? • Are there certain spiritual beliefs and practices that you find particularly helpful in dealing with problems? • I was wondering if you attend a church or some other type of spiritual community? • Are there any spiritual needs or concerns I can help you with?” (p. 319) The non-intrusive tone with which these questions are worded is exemplarary.

A German medical researcher, using basically the same content (i.e., Would you describe yourself—in the broadest sense of the term—as a believing/spiritual/religious person? What is the place of spirituality in your life? How integrated are you in a spiritual community? What role would you like to assign to your health care team with regard to spirituality?), found that these questions were helpful for both patients and physicians.52 Anandarajah and Hight47 developed a simpler mnemonic for remembering aspects of a spiritual assessment: HOPE. “H” reminds the clinician to assess for sources of hope, strength, comfort, meaning, peace, love, and connection. “O” refers to the patient’s organized religion, while “P” stands for personal spirituality and practices. “E” prompts the clinician to assess for spirituality effects on medical care and end-oflife decisions. Although the mnemonic may be stretched, the parsimony of the assessment strategy is appreciated. LaRocca-Pitts53 offered another mnemonic, FACT, for a spiritual screening, advocating that a tool that incorporates a response to an assessment is needed. FACT reminds the clinician to assess for: F (faith)—or spiritual beliefs; A (availability/accessibility/applicability)—or how well spiritual support can be accessed; C (coping/comfort)—or how faith functions to help comfort and cope; and T (treatment)—what spiritual care is needed given FAC. Table 33–2 provides a prototype for a spiritual screening tool. This tool can be adapted to meet the unique needs of any palliative care context. It can be completed by either the patient or with the assistance of a nurse. Because it is unknown how well family can serve as proxies for measurements of spiritual health, and because responses may be easily swayed by social desireability, it is best to not have family complete such a tool. Such a tool can be inserted in the patient chart and guide ongoing spiritual assessment and care. This tool is purposefully concise to accommodate the palliative care patient who is often weak and suffering from symptom distress.

Comprehensive Models If the screening assessment, or subsequent observation, provides preliminary evidence that a spiritual need exists that might benefit from spiritual care from a member of the palliative care team, then a more comprehensive assessment is in order. Depending on the situation, a more indepth assessment regarding the specific spiritual need or a grand tour assessment that covers multiple aspects of the patient’s spirituality, will provide the evidence upon which to plan appropriate spiritual care.1 For example, if a nurse observes a terminally ill patient’s spouse crying and stating, “Why does God have to take my sweetheart?,” then the nurse would want to understand further what factors are contributing to or may relieve this spiritual pain. To focus the assessment on the pertinent topic, the nurse would then ask questions that explore the spouse’s “why” questions, beliefs about misfortune, perceptions of God, and spiritual coping strategies. When should clinicians probe more deeply? Hodge51 suggested four criteria for determining whether to move on to

Table 33–1 Mnemonics to Guide a Spiritual Assessment Author/s

Components (Mnemonic)

Illustrative Questions

Maugens48

• S (spiritual belief system) • P (personal spirituality) • I (integration with a spiritual community) • R (ritualized practices and restrictions) • I (implications for medical care) • T (terminal events planning)

Anandarajah & Hight47

• H (sources of hope) • O (organized religion) • P (personal spirituality or spiritual practices) • E (effects on medical care and/or end-of-life issues)

Puchalski46

• F (faith) • I (import or Influence) • C (community) • A (address)

LaRocca-Pitts53

• F (faith) • A (availability/accessibility/ applicability) • C (coping/comfort) • T (treatment)

Skalla & McCoy49

• M (moral authority) • V (vocational) • A (aesthetic) • S (social) • T TRANSENDENT

McEvoy (pediatric context)50

• B (belief system) • E (ethics or values) • L (lifestyle) • I (involvement in spiritual community) • E EDUCATION • F (near future events of spiritual significance for which to prepare the child)

• What is your formal religious affi liation? • Describe the beliefs and practices of your religion or spiritual system that you personally accept. What is the importance of your spirituality/religion in daily life? • Do you belong to any spiritual or religious group or community? What importance does this group have to you? Does or could this group provide help in dealing with health issues? • Are there specific elements of medical care that you forbid on the basis of religious/spiritual grounds? • What aspects of your religion/spirituality would you like me to keep in mind as I care for you? Are there any barriers to our relationship based on religious or spiritual issues? • As we plan for your care near the end of life, how does your faith impact on your decisions? • What or who is it that gives you hope? • Are you a part of an organized faith group? What does this group do for you as a person? • What personal spiritual practices, like prayer or meditation, help you? • Do you have any beliefs that may affect how the healthcare team cares for you? • Do you have a faith belief? What is it that gives your life meaning? • What importance does your faith have In your life? How does your faith belief influence your life? • Are you a member of a faith community? How does this support you? • How would you like for me to integrate or address these issues in your care? • What spiritual beliefs are important to you now? • Are you able to find the spiritual nurture that you would like now? • How comforting/helpful are your spiritual beliefs at this time? • How can I/we provide spiritual support? • What guides you to decide what is right or wrong for you? • What mission or role do you fell passionate about? • How are you able to express your creativity? How do you deal with boredom? • What people or faith community do you sense you belong with most? • Is there an Ultimate Other (an entity that is sacred, for example)? If so, how do you relate to It? • What religious or spiritual beliefs, if any, do members of your family have? • What standards/values/rules for life does your family think important? • What spiritual habits or activities does your family commit to becausee of spiritual beliefs? (e.g. Any sacred times to observe or diet you keep?) • How connected to a faith community are you? Would you like us to help you reconnect with this group now? • Are you receiving any form of religious education? How can we help you keep up with it? • Are there any upcoming religious ceremonies that you are getty ready for?

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Table 33–2 Self (or Nurse-Assisted) Spiritual Screening Assessment for Palliative Care Patients Dear , Your palliative care team wants to make sure you receive the physical, emotional, and spiritual care and comfort you need. Typically, persons receiving palliative care find themselves becoming more aware of their spirituality. Th is form will allow us to understand what are your spiritual care and comfort needs. Directions: Place an “X” on the lines to show the answer that comes closest to describing your experience. 1. How important is spirituality and/or religion to you now? / / Not at all important Very important 2. Recently, my spirits have been . . . / / Awful--. . . . low. . . . okay. . . . good. . . . great-What can a nurse do that would help to nurture or boost your spirits? (check all that apply) — spend quiet time with you — have prayer with you — help you meditate — allow time and space for your private prayer or meditation — let you know nurse(s) are praying privately for you — read spiritually helpful literature to you — bring art or music to you that nurtures your spirit — bring you literature that you feel is spiritually helpful — help you to stay connected to your spiritual community — help you to observe religious practices — listen to your thoughts about certain spiritual matters — help you to remember how you have grown from previous difficult life experiences — help you to tell your life story — help you to face painful questions, doubts, or suffering — just be with you, not necessarily talking with you — just show a genuine and personal interest in you Please list anything else the nurses can do to support you spiritually: I would also like help in boosting my spirits from: — my friends and family — other health care professionals—please specify who: — a chaplain at this institution — my faith community—please identify tradition and congregation or group: — my own clergy or spiritual mentor—please provide name and any contact information: Is there anything else about your spiritual beliefs or practices that the palliative care team should know about? (e.g., diet or lifestyle proscribed by your religion? beliefs guiding your preparation for death?) Please write here (or on the back side) or tell your nurse.

a more comprehensive assessment. First, consider patient autonomy. The patient must give informed consent. A comprehensive assessment may drill into inner depths the patient does not wish to expose to a clinician. Second, consider the competency of the clincian with regard to discussing spiritual matters. Is the clinician culturally sensitve and aware of how a personal worldview might conflict with the patient’s? Might the clinician suffer from religious counter transference and inappropriately relate to the patient from personal biases? Third, consider if the spiritual issue identified is relevant to the present health care situation. If not, it may not be in nurses’ purview. For patients at the end of life, however, many past and diverse spiritual struggles can resurface; although they may

seem tangential to present health caregiving, they may benefit from spiritual expertise which aids them to address these issues before death. Finally, consider the importance of spirituality to the patient. The extreme illustration of this would be if a patient states spirituality is personally irrelevant, then a comprehensive spiritual assessment would be inappropriate. Although a comprehensive spiritual assessment may well be beneficial to many patients at the end of life, it is likely that few palliative care nurses are competent or able to conduct such an assessment.5 The screening models presented thus far are most relevant for palliative care nurses. By reviewing more comprehensive models, however, nurses can extend their knowledge and gain appreciation for the territory that spiritual care

Spiritual Assessment experts may travel with patients. Nurses are in a pivotal position to refer patients to chaplains or other spiritual care specialists who can conduct a comprehensive assessment. In a groundbreaking and still cited article, Stoll54 suggested four areas for spiritual assessment: • • • •

The patient’s concept or God or deity Sources of hope and strength Religious practices The relationship between spiritual beliefs and health.

These areas continue to be included in more contemporary assessments. A quarter of a century later, British nurse Narayanasamy3 synthesizes the categories of spiritual need found in the nursing literature and recommends a spiritual assessment guide that includes questions or observations that address patient meaning and purpose, sources of strength and hope, love and relatedness, self-esteem, fear and anxiety, anger, and relation between spiritual beliefs and health. Likewise, family physician T.A. Maugens48 offers the mnemonic SPIRIT for remembering six components to cover during a spiritual assessment. “Spiritual belief system” refers to religious affi liation and theology. “Personal spirituality” refers to the spiritual views shaped by life experiences that are unique to the individual and not necessarily related to one’s religion. “Integration and involvement with a spiritual community” reminds the clinician to assess for a patient’s membership and role in a religious organization or other group that provides spiritual support. “Ritualized practices and restrictions” are the behaviors and lifestyle activities that influence one’s health. “Implications for medical care” reminds the nurse to assess how spiritual beliefs and practices influence the patient’s desire and participation in health care. “Terminal events planning” reminds the clinician to assess end-of-life concerns. These components of a spiritual assessment are most appropriate for use in palliative care settings; the mnemonic may be helpful for remembering them. Fitchett,55 a chaplain developed the “7-by-7” model for spiritual assessment with a multidisciplinary group of health professionals. In addition to reviewing seven dimensions of a person (medical, psychological, psychosocial, family system, ethnic and cultural, societal issues, and spiritual dimensions), Fitchett advances seven spiritual dimensions to include in an assessment: • beliefs and meaning (i.e., mission, purpose, religious and nonreligious meaning in life); • vocation and consequences (what persons believe they should do, what their calling is); • experience (of the divine or demonic) and emotion (the tone emerging from one’s spiritual experience); • courage and growth (the ability to encounter doubt and inner change); • ritual and practice (activities that make life meaningful); • community (involvement in any formal or informal community that shares spiritual beliefs and practices); and

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• authority and guidance (exploring where or with whom one places trusts, seeks guidance). Skalla and McCoy49 proposed the “Mor-VAST” model for guiding spiritual assessments with cancer patients. This model suggests the clinician query patients regarding their: • Moral authority (e.g., “Where does your sense of what to do come from?”) • Vocation (e.g., What gives your life purpose? What work is important to you?) • Aesthetic (e.g., What brings beauty or pleasure to your life now?) • Social (e.g., Do you belong to a community that nourishes you spiritually?) • Transcendent (e.g., Who or what controls what happens in life? Who/what supports you when you are ill?) The authors of this model (a nurse and a chaplain) remind the user that the questions are a guide, and not prescriptive; they can be threaded into the natural course of a conversation.49 The Royal Free Interview Schedule developed in the United Kingdom by King, Speck, and Thomas56 is a 21 ⁄2page self-report questionnaire. The tool showed acceptable reliability and various forms of validity when it was tested among 297 persons, who were primarily hospital employees and church members. Questionnaire items assess both spiritual and religious “understanding in life” (1 item), religious/spiritual beliefs (8 items), religious/spiritual practices (3 items), and “intense” spiritual or “near death” experiences (6 items). Response options for items include Likert scales, categorical options, and space for answering open-ended questions. Other paper and pencil type questionnaires for measuring spirituality for research purposes abound. Although discussion of such questionnaires is beyond the scope of this chapter, it is possible that some of them could be used for clinical assessments. For example, the often used FACIT-Sp is a short, valid instrument that assesses both religious and existential/spiritual well-being in persons with cancer.57 Other brief tools that measure daily spiritual experience and religious commitment can be found in a compendium of instruments measuring spirituality and religiosity in healthcare settings.58

9= Case Study Mr. S, Entering Hospice Service with Parkinson’s Disease Mr. S, is a 76-year-old Protestant gentleman who was diagnosed about 13 years ago with Parkinson’s disease. Until 8 months ago, he lived alone. When he realized he could no longer safely live alone, he moved to an assisted living facility. Now his condition has deteriorated further, requiring his admission to a skilled nursing facility. This facility has obtained hospice services for Mr. S. He is receiving anti-parkinsonian and anti-depressive medications.

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Mr. S is divorced from his third wife and estranged from his only son and a stepson. The son lives 7 hours away (by car), and usually reenters Mr. S’s life when he needs financial assistance. The only family that appears to show interest in supporting Mr. S is a niece and her husband, who live 2 hours away. Since Mr. S’s divorce 10 years ago, he has been befriended by a middle-aged woman, Sally, who has entered several business ventures with Mr. S’s money. The following are excerpts from conversations the author had with Mr. S: “My dad was a doctor. He practiced until he was 91! He was very respected and well-known. He loved to yacht; he won the Trans-Pac race one year. I was a teen then, and could only travel with him if I was the crew’s cook. So my mom taught me to peel potatoes . . . .! I wanted to be a doctor. I just couldn’t get the grades, got kicked out of college . . . never could have gotten into med school. So I sold cookware instead. But they said I could sell snow in Alaska—I was good at selling . . . . I was born and raised in the church. Went to Christian schools all the way through college. I was an elder at my little church before I moved down here. I’ve got the church even in my will . . . . I know Sally is using me, but I love her. I would marry her if I could. [She was married.] My head says one thing, but my heart says another . . . . I remember once making love to a woman and her reaction was, ‘Oh my God!’ I guess that was a spiritual experience I helped her have! There’s not much for me to do here. Just a bunch of old people around here. Sometimes I wonder, ‘Why? Why keep going?’. . . . I don’t have anymore money to give . . . . My body doesn’t work anymore . . . . [During a phonecall when Mr. S related he felt anxious:] I’m having a hard time . . . really worried about how its all going to end. How will it? . . . [When asked, “How at peace do you feel inside?”:] Not at all. [When asked, “Is there anything you can think of that would bring comfort to you now?”:] No, nothing.”

o] Assessment (using FICA): F (faith)—verbalized about some indicators of adherence to a faith tradition; inward (or intrinsic) faith is fundamentally challenged as he faces his end; his faith appears to lean toward an extrensic faith (e.g., attendance at services, donating money). I (importance)—states it is important. C (community)—until institutionalized, was a leader in a local Seventh-day Adventist congregation; desires to continue to attend. A (address)—readily responds positively to query regarding having local pastor visit him; also accepts offer of loaned spiritual viewing materials (e.g., videos of dramatized Gospels) and musical CDs. When asked

how the staff can spiritually support, he states, “No, they don’t need to butt into this part of my life.” Assessment (using Mor-VAST): Moral authority—He states the Bible is the guide for what is right or wrong. He admits struggling about how to morally relate to Sally and yearns to reconnect with his sons. Vocational—He excelled as a salesman during mid-adult years. More recently, his business ventures have failed. During his youth, he aspired to be a physician, yet failed to attain that goal. His life seems to have been lived in the shadow of his fathers, perhaps challenging his sense of worth. His financial failure also seems to challenge his sense of success and purposefulness. Aesthetic—Loves “cars, motorcycles, and beautiful women!” His disease now prevents his ability to enjoy these interests, as he can no longer drive or attract women for a date. He does enjoy eating and listening to jazz. Social—until institutionalized, was a leader in a local Seventh-day Adventist congregation; desires to continue to attend as he enjoys the opportunity to see old friends and meet people there. Transcendent—says he prays before each meal and at bedtime, and then at times when he is very distressed, but reports that “sometimes it feels like the prayers don’t go anywhere.” Never describes a time in his life when there was an affective experience of God; rather, his descriptions of religious experience seem cerebral and proscribed. He does describe several times in his life when he believes his life was spared, and interprets these events as showing God intervening in his life. Note: Comparing the two assessments above reveals that different data were generated. Other assessment approaches could be taken. Each would offer yet other emphases or angles for making sense of assessment data. It should be remembered, therefore, that each approach to spiritual assessment is one lens and may fail to address other important areas of spirituality (e.g., spiritually comforting practices are and preparation for death are omitted from the above FICA and Mor-VAST approaches).

Summary of Spiritual Assessment Models The above summaries of various models for spiritual assessment identify spiritual dimensions that may be included in a spiritual assessment. Many of the dimensions identified in one model are observed (often using different language) in other models. Except for Hodge’s40 diagramatic methods, these assessment approaches generally require the professional to make observations while asking questions and listening for the patient’s response. The vast majority of questions recommended for use in following such a model are open-ended. Several of the questions—indeed, the dimensions of spirituality—identified in this literature use “God language” or assume a

Spiritual Assessment patient will have belief in some transcendent divinity. All these models are developed by professionals who are influenced predominantly by Western, Judeo-Christian ways of thinking.

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General Observations and Suggestions for Conducting a Spiritual Assessment What Approach to Use Whereas researchers often assess individuals’ spirituality quantitatively with “paper and pencil” questionnaires, health care professionals generally assess spirituality using qualitative methods (e.g., participant observations, semistructured interviews). However, it is possible to use questionnaires during the clinical spiritual-assessment process.1,28 This approach to conducting a spiritual assessment allows for identification, and possibly, measurement, of how one believes, belongs, and behaves. This type of tool, however, should not “stand alone” in the process of spiritual assessment; rather, it can be the springboard for a more thorough assessment and deeper encounter with a patient, as appropriate. A quantitative tool should never replace human contact, instead, it should facilitate it. Although a quantitative spiritual self-assessment form provides an opportunity for health care teams to glean substantial information when screening for spiritual beliefs and practices, without spending any professional’s time, it also is limited by its mechanistic, rigid, and nonindividualized nature.59 A group of nurse educators29 developed an approach to spiritual assessment for their undergraduate students that provides checklists of indicators of spiritual integrity and distress, as well as open questions to prompt further assessment. One checklist on the tool prompts the student to look for objects in the environment and non-verbal indicators that might reveal information about a patient’s spiritual health. Another checklist allows the student to tick off positive or negative indications about spiritual health that a patient has expressed verbally or demontrated (e.g., appreciation for nature, requests for special diet or clergy, loneliness). Although designed for students, this quasi-quantitative, semi-structured format may provide nurses in palliative care settings an appropriate “crutch” when completing a spiritual assessment is a new or challenging task. (Note: Th is tool also includes items to tick off for spiritual diagnosis and plans for spiritual care.) An example of a tool that can be completed by either the nurse or patient is offered in Table 33–2. Other approaches to spiritual assessment have been described in addition to the interview and questionnaire techniques. LeFavi and Wessels60 described how life reviews can become, in essence, spiritual assessments. Life reviews are especially valuable for persons who are dying, as they allow patients to make sense of and reconcile their life story.61 By doing a life review with a terminally ill patient, the nurse can assess many dimensions of spirituality (e.g., world views, commitments, missions, values) in a natural, noncontrived manner.

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Life reviews can be prompted by questions about the significant events, people, and challenges during the lifespan. A life review can also occur when inquiring about personal objects, pictures, or other memorabilia the patient wants to share. Hodge40 identified several creative approaches to collecting information about client spirituality. As a social worker, Hodge is well aware that some patients are not verbal or are not comfortable expressing their spirituality in words. Thus, he explained more visual ways for a patient to describe their spiritual experiences. These methods for assessments include: • Spiritual lifemaps, or a pictoral depiction of where the patient has been spiritually, where the patient is presently, and where the patient expects to go. It can be a simple pencil drawing on a large piece of paper; words and illustrations can be used to convey the spiritual story—the spiritual highs and lows, blessings and burdens, and so forth. • Spiritual genogram, like a standard genogram, depicts the issues and influences over one to three generations. Sources of spiritual influence from certain relationships (including those external to the family) can be drawn. Words that identify key spiritual beliefs and practices that were transmitted via relationships, and significant spiritual events that contribute to the patient’s spiritual life can noted around this spiritual family tree. • Spiritual ecomaps, rather than focusing on past spiritual influences, directs the patient to consider present spiritual experience. In particular, the patient can diagram (with self portrayed in the center) the relationship with God or transcendent other/value, rituals, faith community, and encounters with other spiritual entities. • Spiritual ecograms allow the patient to diagram present perspectives on both family and spiritual relationships; it is a fusion of the spiritual genogram and ecomap.40 • Other strategies include having clients draw a spiritual timeline that includes significant books, experiences, events, and so forth. Another unusual approach involves sentence completion. For example, a client may fi ll in the blank of sentences like “My relation to God . . . ” or “What I would really like to be . . . ” or “When I feel overwhelmed. . . . ” Having verbally oriented assessment strategies as well as these nonverbal methods provides clinicians with a “toolbox” for assessing spirituality, allowing the clinician to choose an approach that fits the patient personality, circumstances, and purpose for assessment.

When to Assess Typically, palliative care settings has at least one question about spirituality in their admission questions. Many hospices have spiritual carers who complete an assessment

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sometime after admission.62 However, most experts agree that spiritual assessment should also be an ongoing process.1,63,64 The nurse does not complete a spiritual assessment simply by asking some questions about religion or spirituality during an intake interview. Instead, spiritual assessment should be ongoing throughout the nurse–patient relationship. A nurse tuned to know how spiritual health is manifested will be able to see and hear patient spirituality as it is embedded in and suff uses the everyday encounter.65 Stoll,54 recognizing the significance of timing when asking patients questions about spirituality, suggested that spiritual assessment be separated from a sexual assessment because both topics are so sensitive and intimate. However, both spiritual and sexual assessment should occur during the general assessment for the purposes of screening for problems. Several authors remind their readers that spiritual assessments can only be effectively completed if the health-care professional has first established trust and rapport with the patient.7,54,62

Gaining Entrée Spiritual needs are complex and often difficult to acknowledge, and more so, to describe with words. Furthermore, the patient may not yet feel comfortable divulging such intimate information to a nurse with whom rapport has not been established. Indeed, some patients may not want to share such inner, heart-touching experience. Two studies provide evidence regarding what patients are looking for in a clinician if they are going to talk openly about their spirituality.66,67 Survey responses from cancer patients and family caregivers (n = 224) about what requisites they would want in a nurse who provided spiritual care revealed that relationship (i.e., “show me kindness and respect” and “get to know me first”) were ranked highest, with a nurse’s training in spiritual care or sharing similar beliefs as the patient being less important.68 Likewise, a small qualitative study of chronically and terminally ill patients observed that these informants viewed relational characteristics (e.g., caring, honor and respect, rapport/ trust) as prerequisites for discussing spirituality with a physician.69 Ellis and Campbell’s study identified other factors that patients perceive facilitate spiritual assessment by a physician: a condusive setting, sharing life priorities or values, perceived receptivity of physician to spiritual questions, and sensing that spiritual health was considered by the physician to be integral to health.69 Because spirituality and religiosity are sensitive and personal topics (as are most other topics nurses assess), it is polite for a nurse to preface a spiritual assessment with an acknowledgment of the sensitivity of the questions and an explanation for why such an assessment is necessary.1,48 For example, Maugens48 suggested this preface: Many people have strong spiritual or religious beliefs that shape their lives, including their health and experiences with illness. If you are comfortable talking about this topic, would you please share any of your beliefs and practices that you might want me to know as your physician (p. 12).

Such a preface undoubtedly will help both the patient and the clinician to feel at ease during the assessment.

Assessing Nonverbal Indicators of Spirituality Although this discussion of spiritual assessment has thus far focused on how to frame a verbal question and allow a patient to verbalize a response, the nurse must remember that most communication occurs nonverbally. Hence, the nurse must assess the nonverbal communication and the environment of the patient29,70 Does the patient appear agitated or angry? What does the body language convey? What is the speed and tone of voice?65 Assessment of the patient’s environment can provide clues about spiritual state.1,29,70 Are there religious objects on the bedside table? Are there religious paintings or crucifi xes on the walls? Get-well cards or books with spiritual themes? Are there indicators that the patient has many friends and family providing love and a sense of community? Are the curtains closed and the bedspread pulled over the face? Many of the factors a palliative care nurse usually assesses will provide data for a spiritual assessment as well as the psychosocial assessment.

Language: Religious or Spiritual Words? One barrier to spiritual assessment is the nurse’s fear of offending a nonreligious patient by using religious language. However, when one remembers the nonreligious nature of spirituality, this barrier disappears. Patient spirituality can be discussed without God language or reference to religion. Also, using the terms “need” or “distress” immediately after “spiritual” could be denograting for a patient. Especially with spirituality, patients may be upset when they hear others consider them to be with need. Nurses can easily avoid such jargon.63 To know what language will not be offensive during a spiritual assessment, the nurse must remember two guidelines. First, the nurse can begin the assessment with questions that are general and unrelated to religious assumptions. For example, “What is giving you the strength to cope with your illness now?” or “What spiritual beliefs and practices are important to you as you cope with your illness?” Second, the nurse must listen for the language of the patient, and use the patient’s language when formulating more specific follow-up questions. If a patient responds to a question with “My faith and prayers help me,” then the nurse knows “faith” and “prayer” are words that will not offend this patient. If a patient states that the “Great Spirit guides,” then the sensitive nurse will not respond with, “Tell me how Jesus is your guide.”

Asking Questions Because asking a patient questions is an integral part of most spiritual assessments, it is good to remember some of the basics of formulating good questions. Asking close-ended questions that allow for short factual or yes/no responses is helpful when a nurse truly has no time or ability for further

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Table 33–3 A Collection of Nonreligious Questions to Broach Topic of Spirituality with Palliative Care Patients You’ve gone through so much lately. Where do you get your inner strength and courage to keep going? What is helping you to cope? What comforts are most satisfying for you now? As you think about your future, what worries you most? Some people seem more to live while they are dying, while others seem to die while they are living. Which way is it for you? What makes it that way? What kind of person do you see yourself as? (Note: Chaplains suggest that how one views self parallels how one views their Creator or God.) What do you see as the purpose for your life now, given your body isn’t allowing you to do all you used to do? What hopes and dreams do you have for your future? For your family? What legacy would you like to leave? How can we make sure that that happens? As I’ve gotten to know you, I’ve noticed you speak often of (spiritual theme [e.g., betrayal, yearning for love]). How do you think this theme has influenced your life, or will influence your future? How happy with your life’s theme are you? Tell me about times during your life where faced a huge challenge. What got you through? Is that resource still available to you now?

assessment. Otherwise, to appreciate the uniqueness and complexity of an individual’s spirituality, the nurse must focus on asking open-ended questions. The best open-ended questions begin with how, what, when, who, or phrases like “Tell me about . . . ” Generally, questions beginning with “why” are not helpful; they are often mixed with a sense of threat or challenge (e.g., “Why do you believe that?”).65 A few questions you may want to memorize while you are honing your spiritual assessment skill are presented in Table 33–3.

remember that spiritual assessment is a process that develops as the nurse gains the trust of a patient. The nurse can accomplish the assessment during “clinical chatterings.”45 Furthermore, data for a spiritual assessment can be simultaneously collected with other assessments or during interventions (e.g., while bathing or completing bedtime care). And finally, it can be argued that nurses do not have time to not conduct a spiritual assessment, considering the fundamental and powerful nature of spirituality.

Listening to the Answers

Overcoming Personal Barriers

Although it is easy to focus on and to worry about what to say during an assessment, the palliative care nurse must remember the importance of listening to the patient’s responses. Discussion of active listening is beyond the scope of this chapter, yet a few comments are in order. Remember that silence is appropriate when listening to a patient’s spiritual and sacred story; silence has a work. Remain neutral, nonjudgmental. View the patient as a fellow sojourner on the journey of life. Recognize that you are not the authority or savior for the patient expressing spiritual pain. Rather you are a companion, or a supporter if so privileged. Listen for more than words; listen for metaphors, listen for a spiritual theme that keeps reemerging throughout life stories, listen for where the patient places energy, listen for emotion in addition to cognitions.65 The nurse will do well to listen to his or her own inner response. This response will mirror the feelings of the patient.

Nurses can encounter personal barriers to conducting a spiritual assessment. These barriers can include feelings of embarrassment or insecurity about the topic, or can result from projection of unresolved and painful personal spiritual doubts or struggles. Every nurse has a personal philosophy or world view that influences his or her spiritual beliefs. These beliefs can color or blind the nurse’s assessment techniques and interpretation. Hence, an accurate and sensitive spiritual assessment presumably correlates with the degree of the nurse’s spiritual self-awareness. Put another way, your ability to hear your own spiritual story is directly related to your ability to hear a patient’s spiritual story.65 Nurses can increase their comfort with the topic and their awareness of their spiritual self if they ask themselves variations of the questions they anticipate asking patients. For example, “What gives my life meaning and purpose?” “How do my spiritual beliefs influence the way I relate to my own death?” “How do I love myself and forgive myself?” Recognizing how one’s spiritual beliefs motivate one’s vocation as a nurse is also extremely helpful.

Overcoming the Time Barrier Health-care professionals may believe that they do not have enough time to conduct a spiritual assessment. Indeed, Maugens45 observed that completing his spiritual history with patients took about 10 to 15 minutes. Although this is much less time than Maugen and his colleagues expected it to take, it is still a considerable amount of time in today’s health-care context. One response to this time barrier is to

Concluding Cautions Although the presented models and evidence supporting spiritual assessment imply that it is an unproblematic and simple process, it would be naïve to leave this impression.

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Several experts suggest potential problems associated with spiritual assessment. These include: • The process of taking spiritual assessment data to make a spiritual diagnosis pathologizes what may be a normal process of spiritual growth.59 Assessment tools often assume that spiritual well-being correlates with feeling good; spiritual health and suffering cannot coexist.5 (A more appropriate way to evaluate spirituality may be to ask how harmful one’s spirituality is to self and others.) • A “tick box” approach to spiritual assessment could freeze patient spirituality to the time when the assessment was completed; spiritual assessment would be considered complete and fail to continue in an ongoing manner.59 • A fairly prescribed assessment tool could have the unintended outcome of disempowering a patient. That is, the clinician controls (overpowers) the agenda by determining what spiritual matters are discussed.61 A tool used for assessment could end up limiting and controlling patient expression.10 • A spiritual assessment to some degree will reflect the assumptions influencing the clinician (a major one being that spirituality is universal). Thus, a spiritual worldview will be imposed to some degree on a vulnerable patient. An ethical spiritual assessment would be non-alienating, non-discriminating, engage and respect the patient.64,71 Thus, a spiritual assessment tool—if a tool is needed—should be able to generate helpful data for guiding patient care, encourage patient participation, be flexible, easy to use, take little clinician time, be non-intrusive, allow for a patient’s unique story to be understood to some degree, and be simple and clear.71 A tall ask? Perhaps. But important to strive toward.

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Assessing Special Populations Assessing Impaired Patients Although verbal conversation is integral to a typical spiritual assessment, some terminally ill patients may not be able to speak, hear, or understand a verbal assessment. Patients who are unable to communicate verbally may feel unheard. In such situations, the nurse again must remember alternative sources of information. The nurse can consult with the family members and observe the patient’s environment and nonverbal communications. For example, Telos72 proposed that for some patients, terminal restlessness was a manifestation of spiritual distress. Ruling out other causes, and relying on previous spiritual assessment opportunities that have revealed unresolved spiritual issues, supports the palliative care team to draw this conclusion. (Hence, the importance of proactively conducting spiritual assessments for those with terminal illness.)72

Alternative methods for “conversing” can also be used. For patients who can write, paper-and-pencil questionnaires can be very helpful. Always be patient and be unafraid of the tears that can follow. Questions that demonstrate concern for their innermost well-being may release their floodgates for tears. For persons with dementia or other cognitive impairments, it is helpful to recognize that communication can still occur on an emotional or physical level if not intellectually. Their disjointed stories will still offer you a window to their world. Even if you cannot sew the pieces together, trying will help you to remain curious and engaged.65

Assessing Children Several strategies can be employed to assess the spirituality of children. The clinician must remember, however, that building trust and rapport with children is essential to completing a helpful spiritual assessment. Children are especially capable of ascertaining an adult’s degree of authenticity. Children also are less likely to be offended by a question about religion. If a nurse creates a comfortable and nonjudgmental atmosphere in which a child can discuss spiritual topics, then the child will talk. Never underestimate the profoundness of a child’s spiritual experience, especially a dying child’s. In addition to asking assessment questions verbally, the nurse can use play interviews, picture drawings, observations, and informal interviews.73,74 The nurse may need to be more creative in formulating questions if the child’s vocabulary is limited. For example, instead of asking the child about helpful religious rituals, the nurse may need to ask questions about what they do to get ready to sleep or what they do on weekends. When asking, “Does your mommy pray with you before you go to sleep?” or “What do you do on Sunday or Sabbath mornings?” the nurse can learn whether prayer or religious service attendance are a part of this child’s life. An assessment question that Sexson’s74 colleague Patricia Fosarelli found to be particularly helpful with 6- to 18-yearolds was: “If you could get God to answer one question, what one question would you ask God?” Understanding the family’s spirituality is pivotal to understanding the child’s. Structured interviews or unstructured conversations with parents and even older siblings will inform the health care team about the child’s spirituality.74,75 Barnes and colleagues76 suggested the following questions as guides for assessing how a family’s spirituality affects illness experience: • How does the family understand life’s purpose and meaning? • How do they explain illness and suffering? • How do they view the person in the context of the body, mind, soul, spirit, and so forth? • How is the specific illness of the child explained? • What treatments are necessary for the child? • Who is the qualified person to address these various treatments for the various parts of the child’s healing? • What is the outcome measurement that the family is using to measure successful treatment (good death)?

Spiritual Assessment While assessing children, it is vital to consider their stage of cognitive and faith development.73,74 Questions must be framed in age-appropriate language (a 4-year-old will likely not understand what “spiritual belief” means!). Toddlers and preschoolers talk about their spirituality in very concrete terms, with an egocentric manner. School-aged and adolescent children should be addressed straightforwardly about how they see their illness. Inquiring about the cause of their illness is especially important, as many children view their illness and impending death as punishment.73

Assessing Diverse Spiritualities Spiritual assessment methods must be flexible enough to obtain valid data from persons with diverse spiritual and religious backgrounds. Although the questions and assumptions presented in this chapter will be helpful for assessing most patients living in Western, Euro-American cultures, they may not be for some patients who do not share these presuppositions. For example, some may believe it is wrong to discuss their inner spiritual turmoil as they face death and will refuse to fully engage in the process of spiritual assessment. (Whereas some Buddhists and Hindus may believe they must be in a peaceful state to be reincarnated to a better state, AfricanAmerican Christians may think it is sinful to express doubts or anger towards God.) Framing spiritual assessment in a positive tone may overcome this type of barrier (e.g., “Tell me about how you are at peace now.”) Others may assume they are void of spirituality and therefore decline any questions regarding their “spirituality.” This barrier to assessment can be overcome with questions that are void of such language (e.g., “What gives your life meaning?” or “How is your courage?”). For patients who are religious, it is important to remember that no two members of a religious community or family are exactly alike. For example, one orthodoxly religious person may believe he should never consume any mind-altering drugs, such as morphine, while a less conservative member of the same denomination may understand that such drugs are a gracious Godly gift. Although having a cursory understanding of the world’s major religious traditions provides nurses with some framework for inquiry, remaining open to the variation of religious experience and expression is essential.

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The Next Step: What To Do with a Spiritual Assessment Making Sense of Information from a Spiritual Assessment Even a spiritual screening can generate a lot of information. This information must be processed to identify what, if any, spiritual need exists and plan spiritual care. Several points can be considered while processing the data. These include: • What patients tell you at first reflects not how well you have asked a good question; rather it shows how safe and respected the patient feels with you.

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• Consider what incongruities exist. Do the affect, behavior, and communication (ABCs) line up? • Consider the level of concreteness or abstractness in the patient’s talk about spiritual matters. Healthy spirituality straddles between these opposites. • Consider how defensive or threatened the patient is by talk about spirituality. Did the patient change the topic? Give superficial answers? Become competitive? Intellectual feelings? • Keep in mind that crisies (e.g., illness) expose the gaps in a patient’s spiritual development. Did significant events earlier in life in effect stunt the patient’s spiritual growth? • Remember that religion offers a lens for interpreting life. Likewise, when patients tell meaningful stories, legends, or passages from their holy scripture, they are telling you about themselves. • Reflect on how helpful versus harmful are a patient’s spiritual beliefs and practices. Do they create inner anxiety? Do they limit the patient from using other helpful coping strategies?65 Although an in-depth analysis is beyond the scope of most palliative care nurses, having an awareness of these various ways to evaluate what a patient says will help the nurse to begin to make sense of the data.

Documentation Although assessments of physiological phenomenon are readily documented in patient charts, assessments and diagnoses of spiritual problems are less frequently documented. However, for many reasons, spiritual assessments and care should be documented to at least some degree. These reasons include: (1) to facilitate the continuity of patient care among palliative care team members and (2) to document for the monitoring purposes of accrediting bodies, researchers, quality improvement teams, and so forth. Power59 recognized that the data collected during spiritual assessments is often very private, sensitive material; to document such may breach confidentiality and thus pose an ethical dilemma. As with other sensitive charted information, nurses must treat spiritual assessment data with much respect and observe applicable privacy codes. Formats for documenting spiritual assessments and diagnoses can vary. Some institutions encourage staff to use SOAP (Subjective, Objective, Assessment, Plan) or similar formatting in progress notes shared by the multidisciplinary team. Others have developed quick and easy checklists for documenting spiritual and religious issues. Perhaps an assessment format that allows for both rapid documentation and optional narrative data is best. However, merely documenting one’s religious affiliation and whether one desires a referral to a spiritual care specialist certainly does not adequately indicate a patient’s spiritual status and need. A summary of assessment forms created by professionals at hospices is reported by Dudley, Smith, and Millison.36

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These researchers synthesized the spiritual assessment forms from 53 hospices, fi nding questions about religious affi liation and rituals, religious problems or barriers, and questions about spiritual (nonreligious) topics, that is, questions void of overtly religious language. Although Dudley and colleagues summarize the content of these forms, they do not review the format for documentation on these forms.

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13.

14.

15. 16.

Summary 17.

Spirituality is an elemental and pervading dimension for persons, especially those for whom death is imminent. Spiritual assessment is essential to effective and sensitive spiritual care. Indeed, spiritual assessment is the beginning of spiritual care. While the nurse questions a patient about spirituality, the nurse is simultaneously assisting the patient to reflect on the innermost and most important aspects of being human. The nurse is also indicating to the patient that grappling with spiritual issues is normal and valuable. The nurse also provides spiritual care during an assessment by being present and witnessing what is sacred for the patient.

18.

19.

20. 21. 22.

REFERENCES 1. Taylor EJ. Spiritual Care: Nursing Theory, Research, and Practice. Upper Saddle River, NJ: Prentice Hall, 2002. 2. Reed PG. An emerging paradigm for the investigation of spirituality in nursing. Res Nurs Health 1992;15:349–357. 3. Narayansamy A. The puzzle of spirituality for nursing: A guide to practical assessment. Br J Nurs 2004;13(19):1140–1144. 4. Paley J. Spirituality and secularization: nursing and the sociology of religion. J Clin Nurs 2008;17:175–186. 5. Pesut B, Fowler M, Reimer-Kirkham S, Taylor EJ, Sawatzky R. Particularizing spirituality in points of tension Nurs Inquiry (in press). 6. Bash A. Spirituality: The emperor’s new clothes? J Clin Nurs 2004;13:11–16. 7. McSherry W, Ross L. Dilemmas of spiritual assessment: Considerations for nursing practice. J Adv Nurs 2002;38:479–488. 8. Williams AL. Perspectives on spirituality at the end of life: A meta-summary. Palliat Support Care 2006;4:407–417. 9. Brown AE, Whitney SN, Duff y JD. The physician’s role in the assessment and treatment of spiritual distress at the end of life. Palliat Support Care 2006;4:81–86. 10. Byrne M. Spirituality in palliative care: What language do we need? Learning from pastoral care. Int J Palliat Nurs 2007;13(3):118–121. 11. Chio CC, Shih FJ, Chiou JF, Lin HW, Hsiao FH, Chen YT. The lived experiences of spiritual suffering and the healing process among Taiwanese patients with terminal cancer. J Clin Nurs 2008;17:735–743. 12. Tamura K, Ichihara K, Maetake E, Takayama K, Tanisawa K, Ikenaga M. Development of a spiritual pain assessment sheet for terminal cancer patients: Targeting terminal cancer patients

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admitted to palliative care units in Japan. Palliat Support Care 2006;4:179–188. McGrath P. Spiritual pain: A comparison of findings from survivors and hospice patients. Am J Hosp Palliat Care 2003;20(1):23–33. Taylor EJ. Spiritual quality of life. In: King CR, Hinds PS, eds. Quality of Life: From Nursing and Patient Perspectives (3rd ed). Sudbury, MA: Jones and Bartlett, in press. Taylor EJ. Spiritual complementary therapies in cancer care. Sem Oncol Nurs 2005;21(3):159–163. Taylor EJ. Spiritual responses to cancer (Chapter 73). In: Yarbro CH, Wujcik D, Gobel BH, eds. Cancer Nursing: Principles and Practice (7th ed). Sudbury, MA: Jones & Bartlett (in press). Tatsumura Y, Maskarinec G, Shumay DM, Kakai H. Religious and spiritual resources, CAM, and conventional treatment in the lives of cancer patients. Altern Ther Health Med 2003;9:64–71. Nolan MT, Hodgin MB, Olsen SJ, et al. Spiritual issues of family members in a pancreatic cancer chat room. Oncol Nurs Forum 2006;33:239–244. Steele RG, Fitch MI: Coping strategies of family caregivers of home hospice patients with cancer. Oncol Nurs Forum 1996;23:955–960. Taylor EJ. Spiritual needs of cancer patients and family caregivers. Cancer Nurs 2003;26:260–266. Taylor EJ. Prevalence of spiritual needs among cancer patients and family caregivers. Oncol Nurs Forum 2006;33(4):729–735. Steele RG, Fitch MI. Coping strategies of family caregivers of home hospice patients with cancer. Oncol Nurs Forum 1996;23:955–960. Nolan MT, Hodgin MB, Olsen SJ, et al. Spiritual issues of family members in a pancreatic cancer chat room. Oncol Nurs Forum 2006;33:239–244. Spiritual Beliefs and the Dying Process: Key Findings. New York: Nathan Cummings Foundation and Fetzer Institute, October 1997. The Joint Commission. Spiritual assessment. Available at http://www.jointcommission.org/AccreditationPrograms/ HomeCare/Standards/09_FAQs/PC/Spiritual_Assessment. htm (accessed December 31, 2008). Hunt J, Cobb M, Keeley VL, Ahmedzai SH. The quality of spiritual care—developing a standard. Int J Palliat Nurs 2003;9:208–215. Millison M, Dudley JR. Providing spiritual support: A job for all hospice professionals. Hospice J 1992;8:49–65. O’Brien ME. Spirituality in Nursing: Standing on Holy Ground (2nd ed). Sudbury, MA: Jones and Bartlett, 2003. Hoffert D, Henshaw C, Mvududu N. Enhancing the ability of nursing students to perform a spiritual assessment. Nurse Educator 2007;32(2):66–72. Swift C, Calcutawalla S, Elliot R. Nursing attitudes towards recording of religious and spiritual data. Br J Nurs 2007;16:1279–1282. Taylor EJ, Highfield MF, Amenta MO. Predictors of oncology and hospice nurses’ spiritual care perspectives and practices. Appl Nurs Res 1999;12:30–37. Highfield MEF, Taylor EJ, Amenta MO. Preparation to care: The spiritual care education of oncology and hospice nurses. J Hosp Palliat Nurs 2000;2:53–63. Kuuppelomaki M. Spiritual support for families of patients with cancer: A pilot study of nursing staff assessments. Cancer Nurs 2002;25:209–218.

Spiritual Assessment 34. Kristeller JL, Zumbrun CS, Schilling RF. “I would if I could”: How oncology nurses address spiritual distress in cancer patients. Psycho-Oncol 1999;8:451–458. 35. Hermann CP. Spiritual needs of dying patients: A qualitative study. Oncol Nurs Forum 2001;28:67–72. 36. Dudley JR, Smith C, Millison MB. Unfi nished business: Assessing the spiritual needs of hospice clients. Am J Hospice Palliat Care 1995;12:30–37. 37. Galek K, Flannelly KJ, Vane A, Galek RM. Assessing a patient’s spiritual needs: A comprehensive instrument. Holist Nurs Pract 2005;19(2):62–69. 38. Highfield MF, Cason C. Spiritual needs of patients: Are they recognized? Cancer Nurs 1983;6:187–192. 39. Massey K, Fitchett G, Roberts P. Assessment and diagnosis in spiritual care. In: Mauk KL, Schmidt NK, eds. Spiritual Care in Nursing Practice. Philadelphia, PA: Lippincott Williams & Wilkins, 2004. 40. Hodge D. Developing a spiritual assessment toolbox: A discussion of the strengths and limitations of five different assessment methods. Health Social Work 2005;10:314–323. 41. Kub JE, Nolan MT, Hughes MT, et al. Religious importance and practices of patients with a life-threatening illness: Implications for screening protocols. Appl Nurs Res 2003;16:196–200. 42. Lawrence RT, Smith DW. Principles to make a spiritual assessment work in your practice. J Fam Pract 2004;53:625–631. 43. Steinhauser KE, Voils CI, Clipp EC, Bosworth HB, Christakis NA, Tulsky JA. “Are you at peace?”: One item to probe spiritual concerns at the end of life. Arch Intern Med 2006;166(1):101–105. 44. Lo B, Quill T, Tulsky J. Discussing palliative care with patients. Ann Intern Med 1999;130:744–749. 45. Matthews DA, McCullough ME, Larson DB, Koenig HG, Swyers JP, Milano MG. Religious commitment and health status: A review of the research and implications for family medicine. Arch Fam Med 1998;7:118–124. 46. Puchalski, C, Romer, AL. Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 2000;3:129–138. 47. Anandarajah G, Hight E. Spirituality and medical practice: Using the HOPE questions as a practical tool for spiritual assessment. Am Fam Physician 2001;63:81–89. 48. Maugens TA. The SPIRITual history. Arch Fam Med 1996;5:11–16. 49. Skalla KA, McCoy JP. Spiritual assessment of patients with cancer: The moral authority, vocational, aesthetic, social, and transcendent model. Oncol Nurs Forum 2006;33:745–751. 50. McEvoy M. An added dimension to the pediatric health maintenance visit: The spiritual history. J Ped Health Care 2000;14:216–220. 51. Hodge D. A template for spiritual assessment: A review of the JCAHO requirements and guidelines for implementation. Social Work 2006;51:317–326. 52. Frick E, Riedner C, Fegg MJ, Hauf S, Borasio GD. A clinical interview assessing cancer patients’ spiritual needs and preferences. Eur J Cancer Care (Engl) 2006;15:238–243. 53. LaRocca-Pitts M. A spiritual history tool: FACT. Available at http://www.professionalchaplains.org/uploadedFiles/pdf/ FACT20spiritual (accessed December 29, 2008, from Association of Professional Chaplains’ website.) 54. Stoll RI. Guidelines for spiritual assessment. Am J Nurs 1979;79:1574–1577.

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55. Fitchett G. Assessing Spiritual Needs: A Guide for Caregivers. Minneapolis, MN: Fortress Press, 1993. 56. King M, Speck P, Thomas A. The royal free interview for spiritual and religious beliefs: development and validation of a selfreport version. Psychol Med 2001;31:1015–1023. 57. Peterman A, Fitchett, G, Brady MJ, Hernandez L, Cella D. Measuring spiritual well-being in people with cancer: The Functional Assessment of Chronic Illness Therapy-Spiritual WellBeing Scale (FACIT-Sp). Ann Behav Med 2002;24(1):49–58. 58. Fetzer Institute. Multidimensional measurement of religiousness/spirituality for use in health research: A report of the Fetzer Institute/National Institute on Aging Working Group. Kalamazoo, MI: Fetzer, 1999. 59. Power J. Spiritual assessment: Developing an assessment tool. Nurs Older People 2006;18(2):16–18. 60. LeFavi RG, Wessels MH. Life review in pastoral care counseling: Background and efficacy for the terminally Ill. J Pastoral Care Council 2003;57:281–292. 61. Pronk K. Role of the doctor in relieving spiritual distress at the end of life. Am J Hospice Palliat Med 2005;22:419–425. 62. O’Connor TS, O’Niell K, Van Staalduinen G, Meakes E, Penner C, Davis K. Not well known, used little and needed: Canadian chaplains’ experiences of published spiritual assessment tools. J Pastoral Care Counsel 2005;59(1–2):97–107. 63. Taylor EJ. Nurses caring for the spirit: Patients with cancer and family caregiver expectations. Oncol Nurs Forum 2003;30:585–590. 64. Rumbold BD. A review of spiritual assessment in health care practice. Med J Austr 2007;186(10):S60–S62. 65. Taylor EJ. What do I say? Talking with patients about spirituality. Philadelphia, PA: Templeton Press, 2007. 66. Taylor, EJ, Mamier I. Spiritual Care Nursing: What Cancer Patients and Family Caregivers Want. J Adv Nurs 2005;49(3):260–267. 67. Kvale K. Do cancer patients always want to talk about difficult emotions? A qualitative study of cancer inpatients communication needs. Eur J Oncol Nurs 2007;11(4):320–327. 68. Taylor EJ. Client perspectives about nurse requisites for spiritual caregiving. App Nurs Res 2007;20(1):44–46. 69. Ellis MR, Campbell JD. Patients’ views about discussing spiritual issues with primary care physicians. South Med J 2004;97:1158–1164. 70. Carson VB. Spirituality: Identifying and meeting spiritual needs. In: Carson VB, Koenig HG, eds. Spiritual dimensions of nursing practice (rev ed). West Conshohocken, PA: Templeton Foundation Press, 2008. 71. Timmins F, Kelly J. Spiritual assessment in intensive and cardiac care nursing. Nurs Crit Care 2008;13(3):124–131. 72. Telos N. Proactive: Spiritual care for terminal restlessness. Palliat Support Care 2005;3:245–246. 73. Hart D, Schneider D. Spiritual care for children with cancer. Semin Oncol Nurs 1997;13:263–270. 74. Sexson SB. Religious and spiritual assessment of the child and adolescent. Child Adolesc Psychiatr Clin N Am 2004;13:35–47. 75. Heilferty CM. Spiritual development and the dying child: The pediatric nurse practitioner’s role. J Pediatr Health Care 2004;18:271–275. 76. Barnes LP, Plotnikoff GA, Fox K, Pendleton S. Spirituality, religion, and pediatrics: Intersecting worlds of healing. Pediatrics 2000;104:899–908.


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Rev. Pamela Baird

Spiritual Care Interventions

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Key Points Recognizing and addressing patients’ spiritual needs is fundamental to palliative care. Spiritual care addresses issues of religion, existential suffering and humanity. Nurses provide spiritual care through deep listening, presence, bearing witness and compassion.

Spiritual care is, perhaps, the most mysterious and often misunderstood part of palliative care. There is much discussion about what constitutes good spiritual care, and to date there is no agreed upon defi nition of terms. The misunderstanding is caused, in part, by this lack of agreement. It is important to establish clear defi nitions to demystify spiritual care. For the purposes of this chapter the terms are defi ned as follows: • Spirituality: Our relationship with ourselves, others, nature, and the transcendent.1 • Religion: An organization that has a set of rites, rules, practices, values, and beliefs that prescribe how individuals should live their lives and respond to God.2 • Spiritual Care: Allowing our humanity to touch another’s by providing presence, deep listening, and compassion.3 • Compassion: The ability to be empathetically present to another while he or she is suffering and is trying to find meaning.4,5 • Existential: Relating to human existence and experience.6 Although the literature is trending toward defining them separately, some use the terms “spiritual” and “religious” interchangeably, implying they are the same. It is sometimes assumed that spiritual care is only about a person’s religious traditions and beliefs. Using the definitions above, not everyone would describe him- or herself as religious, but everyone is spiritual.7 In fact, these definitions can determine the care given to patients. If a person does not identify as “religious” and the spiritual care offered is only about religious issues, then the person is denied this care, which could, in fact, provide compassion, peace, and comfort in the midst of the fear, pain, and chaos of illness. There is much spiritual care that can be given to support a person’s relationship with himor herself, others, nature, and the transcendent even when religion is not a factor. 663

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9= Case Study A 45-Year-Old Man Dying of Colon Cancer A 45-year-old man and hospice patient was dying alone in his apartment after he had alienated his ex-wife and three grown children. His entire adult life had been consumed by alcohol and gambling. Although he was receiving care from the hospice team, he had refused a chaplain because he said he was an atheist and did not want or need one. He had agreed to check into a skilled nursing facility with hospice care when he could no longer take care of himself at home. The day came. It was a day of many deaths and emergencies, and the hospice agency and the patient’s nurse, social worker, and home health aide were all otherwise unavailable. The chaplain was sent to the patient’s home to prepare him, to gather his things, and to wait for the ambulance to arrive for transport. She sat with him, at home, for a couple of hours—listening, talking. When he was moved to the nursing home, she followed and made sure that he was introduced to the facility and the staff and that he felt as comfortable as possible in his new surroundings. When he was finally settled, the chaplain told him she was going to leave. That is when he asked, “What is it you do again?” She told him, “I’m the chaplain.” He replied, “I’m an atheist. I don’t believe in God.” The chaplain said to him, “It doesn’t matter to me if you believe in God or not. That’s not why I’m here. I’m here to offer support.” He took her hand, looked into her eyes and said, “You’ve done that.” He died the next day. o]

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What is Spiritual Care? Spiritual care is simply meeting the other person, human to human, providing compassionate presence, and being available for whatever comes up. In the aforementioned case study, not only was it unnecessary to talk about God, or seemingly spiritual or religious things, it would have been inappropriate and perhaps harmful to this patient, risking further alienation from yet another person. The spiritual interchange took place just by being with the person, understanding where he was—emotionally and spiritually—and taking care of what was important to him.8 At other times, with other people, spiritual care might include saying prayers, reading from Holy Texts, or talking about God and the mysteries of the universe. It is not for us to decide what the spiritual care looks like. On some level, what we do to provide spiritual care is less important than who we bring to the room. Good spiritual care requires that the person who walks into the room put aside his/her own expectations and agenda and, instead, focus on the patient— doing whatever is needed, at the time, for the person receiving the care.

Table 34–1 The Essential Elements of Spiritual Care Spiritual care encompasses: • • • • • • • • • •

Authenticity Kindness Compassion Respect Dignity Humanity Vulnerability Service Honesty Empathy

At its core, spiritual care is about being honest, being authentically human, and allowing our own humanity to touch the humanity of another9 (Table 34–1). In the course of offering spiritual care, God and religious beliefs and ideas may emerge, but they do not have to. Religion is one way, one very important and significant way, that we express our spirituality. But religion is not a prerequisite. Spirituality can be expressed in a million ways: sitting quietly by the side of the road, taking food to a friend, watching a toddler learn to walk, working in the garden, praying, or crying with a man whose wife just died. Rachel Naomi Remen speaks to the essence of spiritual care when she writes about the difference between “helping” and “serving.” When we “help” someone, we assume they are broken and need fi xing—they are weak, we are stronger, and we have the answers. But when we go to the bedside not to help or fi x, but to serve, we allow our humanness, our wholeness, our brokenness, our compassion, and our vulnerability to be present and forefront. When we “help” or “fi x” patients, they are in our debt. Service requires no payment. Service is mutually beneficial. When we serve, we create a space where healing can occur, both for the served and the server.10

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“I’m only the nurse. What do I know about providing spiritual care?” Spiritual care is in the purview of everyone: the medical staff, the palliative care team, and the patient’s family and friends.11 Given the mystery and misunderstanding surrounding spiritual care, it is understandable that many people feel unqualified and uncomfortable to provide spiritual interventions. Many feel that because they, themselves, are not religious, they could not possibly be of spiritual support to anyone. Others, although defi ning themselves as religious, do not feel comfortable to pray out loud or with someone else, or they think they do not know the Bible or the Quran, or any of the holy books, well enough. Here again, the religious

Spiritual Care Interventions

Table 34–2 Questions Requiring Chaplain Referral • • • • • •

What have I done to deserve this? I pray but I’m still sick. I used to believe in God, but now I’m not so sure. How will my family get along without me? What did my life mean? I’m scared.

Table 34–3 Spiritual Interventions • Compassionate presence and listening deeply • Bearing witness • Compassion at work

interventions are only a part of spiritual care, and they are often best handled by the chaplain or professional spiritual caregiver. If patients are asking questions about God, expressing concerns, or ruminating over existential issues, then an appropriate intervention would be to make a referral to the chaplain (Table 34–2).12 Chaplains are trained to address spiritual and existential concerns, both the religious and non-religious. However, a chaplain referral is not the only spiritual intervention that can, or should, be made. Because nurses are at the bedside 24/7 and, generally, are the medical professionals who spend the most time with patients and their families, it is important for nurses to know how to provide spiritual care and to do it well. It does not require a special degree, but it does take awareness of oneself, and the other, and it takes effort and a strong commitment. As stated earlier, at its core spiritual care is about being human and allowing our humanity to touch the humanity of another. Our humanity is expressed, in part, by providing presence, deep listening, bearing witness, and putting our compassion into action.13 This is the foundation of spiritual care (Table 34–3).14

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Compassionate Presence and Deep Listening It is not possible for the medical community to promise that a patient will never experience pain or suffering or to guarantee a calm and peaceful death. But it is possible to promise to accompany the patient for the journey. This does not mean that an individual nurse should promise to always be at the patient’s side, but it does mean the medical team can assure the patient it will do everything possible to alleviate pain and suffering and that the patient and family will not be abandoned.15

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Being present has been described by Gardner in two ways: “physical and psychological, ‘being there’ and ‘being with.’ ”16 Physical presence refers to being in touchable proximity to another. Psychological presence entails work and effort on the part of the caregiver. Kindness, deep listening, and empathy are required for psychological or compassionate presence.17 Providing compassionate presence is more than just showing up or walking into a room. There is a quality to the presence that gives the message, “There is no where else I would rather be at this moment than here with you.” It is not just about being physically in the room with another, but being present in that room—body, mind, and spirit. It is about “exhibiting empathy and focused attention.”18–21 Presence does not take any more time than just showing up, but it does take a lot more effort, energy, and intention, and it makes an enormous difference to the person who is the recipient. A nurse can go into a patient’s room, walk directly to the IV pole, hang the medication, turn, and walk out. Or, that same nurse can go into the patient’s room, walk over to the patient, make eye contact, smile, gently touch the patient’s hand, walk to the IV pole, hang the medication, look directly into the patient’s eyes once again, smile, turn, and walk out the door. Human beings have a need to be seen and heard. “When dying patients are seen, and know that they are seen, as being worthy of honour and esteem by those who care for them, dignity is more likely to be maintained.”22 Spiritual care is about preserving dignity and truly seeing the other person. It is also about hearing the spirit of the message. It is not enough just to see the body or to hear the words. Spiritual care is about connecting to the heart and mind and soul because that connection says, “I see you. I hear your concerns. You matter. You are important. You are not alone. I care.” A woman and her family were going though hard times. There were children to feed, a mortgage, and all the usual expenses that go along with supporting a family of six. The woman and her husband owned a business that had been floundering for 4 years, and they were close to losing everything. They had $2.48 in the bank, creditors calling, and no guarantee of when the next money would arrive. The woman was in her minister’s office, embarrassed, telling her story, crying, and feeling terrified by life. As she was pouring her heart out, someone walked by the minister’s door, caught the attention of the cleric, and the pastor immediately stood up and waved and said, “Oh, hello!” and began talking to the passerby. The woman never again shared anything of importance or consequence with her minister. To deeply listen means hearing what is being said and what is not being said and trying to understand the emotions and feelings behind the words. It means to “tune in” to another person so that we understand who that person really is on a deep, authentic level.23 Listening deeply also requires the ability to hold the pain and suffering of another. When someone trusts us enough to be vulnerable in our presence and then goes even further, explaining the circumstances of the pain and suffering, he/she has offered us a gift. It is our

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responsibility to embrace and protect that gift and treat it with the utmost respect, care, and deference. The minister dismissed the woman’s pain and trivialized her suffering by allowing herself to be distracted when being present was so crucial. It could have been a time of healing. Although the minister could not change the woman’s circumstances, she had the opportunity to be truly present, thereby offering a human connection to the woman who was in such despair. The minister missed the moment and ensured that she would never again be given the chance to connect with her parishioner in such an intimate way. Talking, listening, and telling our stories are all part of the human experience. In a study conducted by Mako, Galek, and Poppito to investigate spiritual pain, they found that patients were more likely to request someone to sit and talk and be with them than they were to ask for religious interventions. “Patients asked that the chaplain ‘stay with me as long as possible,’ and ‘stop by every now and then and talk to me.’ ”24 Listening deeply and being “psychologically” or compassionately present are spiritual interventions that anyone can learn. But it takes time, practice, effort, willingness, and intention to be truly available to another human being. For many receiving palliative care, they have been told that there is no cure for them. A cure may not be possible, but the opportunity for healing is. Healthcare professionals can be the conduit to healing simply by being present and listening deeply.

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Bearing Witness The term “bearing witness” may seem a foreign concept to some, but it is integral to spiritual care and a part of our experience as human beings. A friend is diagnosed with cancer, a coworker dies, an airplane crashes. These sad, life-changing events, and those that are happy and joyous as well, generally stimulate a response. That response is to tell the story of what happened. We feel the need to share our experiences, and we feel compelled to hear other people’s stories. To bear witness is to be present to the events and the emotions of another’s life and experience. We find strength and comfort in knowing that other human beings bear witness to the significant events of our lives—the good and the bad. It may seem that bearing witness is a passive event, such as just watching and observing. But, indeed, beneficially bearing witness takes focus and intention just like compassionate presence and deep listening. Bearing witness is not “fi xing,” “helping,” or imparting answers or platitudes. Platitudes are seldom healing and “answers” can function to alienate the one we seek to serve. People seek medical attention looking for answers. There are some things in medicine that have definitive answers and some that do not. In the spiritual/ existential realm there are very few, if any, absolutes. Two people asking the question, “Why did I get sick?” will most likely have two different answers, if they can find answers at all. Our spiritual/existential answers are our own, revealed

to us through years of living life through our own lens and experience. Nurses and healthcare providers might find it a relief to know that they do not have to have the answers to patients’ spiritual questions. Furthermore, offering an answer to another’s spiritual questions, or providing meaning, is not in the purview of healthcare professionals and generally is not helpful or beneficial.25 We cannot know the answers to others’ questions, so to assume we do and to assert those “answers” might be harmful to the patient or, at the very least, stop them from their own process of finding meaning. So what does it really mean to bear witness? Bearing witness means compassionate presence, deep listening, watching, observing—being with. “Your job is to offer not only compassion but also to accompany as best as you can those dying on their journey.”26 Bearing witness means to compassionately accompany another. Like presence and listening, bearing witness does not mean taking away the person’s pain or suffering. Bearing witness means being present to the pain and suffering. In fact, if our primary goal is to take away the suffering, then that itself can interfere with our ability to be present in the moment.27 Bearing witness is the ability to sit in the midst of whatever is happening. We often betray our own discomfort while listening to the stories of patients’ suffering when we jump up to get a tissue for their tears. We tell ourselves that the tissue is for the one who is crying, to make him/her more comfortable, when in fact it can say more about our own desire to step back and move away from the pain. The message we risk sending is, “Stop crying. I don’t want to hear anymore. I need you to stop crying now.” When someone is sharing an intense story, if we are truly present in the moment, then we can find ourselves almost not breathing, listening to, or attending to the other. When we move, we break the moment and it can stop the process, the story, and the tears. Something as simple as reaching over and touching a person while he/she is telling the emotion-fi lled story can stop the flow and interrupt the process. When these interruptions occur, there is a good chance that the story, which was so important to tell, might never again find the opportunity to be told. It takes time, experience, and thoughtful awareness to learn when to speak, or move, or get tissues. Bearing witness means being comfortable enough in our own pain and suffering that we can just sit quietly, be with another human being who is suffering, and not run. It also means being aware of our own grief and being in touch with that grief so that it does not spill over and leak out onto the patients and families we serve.

9= Case Study A 65-Year-Old Female Patient Dying in the Hospital From Breast Cancer A chaplain was asked to see Mrs. F because the hospital staff said she would probably be dying in the next few weeks and she had not, to anyone’s knowledge, talked with her grown daughter about her impending death. The chaplain was

Spiritual Care Interventions warned that Mrs. F, avoided talking about her prognosis and would probably be “resistant.” The chaplain later reported that she, herself, was struggling with some personal grief issues and found herself unusually anxious about going to see this patient. The chaplain made her way into the patient’s room, introduced herself, and felt her own anxiety level soar. There was not much of a conversation, as there was not room for the patient to “comply,” or be “resistant,” because the chaplain’s own anxiety caused her to talk faster and faster, fearful the patient’s grief would touch her own. The patient was polite and pleasant and, not surprisingly, did not want to talk at all, about anything. The chaplain’s grief fi lled the room. Because she had not dealt with her own grief before she saw the patient, not only was she unable to serve Mrs. F, but the chaplain may have done harm in allowing her own grief to be such a strong presence in the room. It is not easy for caregivers to manage both their own grief and the grief of their patients. But to ensure that professional caregivers are providing the best care for their patients and are caring for themselves as well, it is incumbent upon them to be aware of, work with, and reconcile their own grief.28 This will be addressed more fully later in the chapter. o]

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Compassion at Work Being present, listening deeply, and bearing witness require a commitment from the one who serves. After these interventions, the next step in providing good spiritual care is action based on compassion. Is there anything missing? Is there something more to be done? Deep listening can reveal a patient’s hopes, desires, and longing. Sometimes what is needed is very simple but it can make a huge difference in the quality of the patient’s life. For many, healthcare professionals and laypersons alike, being unsure of what to say can cause discomfort at the thought of spending any quality time with one who is dying. Empathy is vital to spiritual care. The capacity to put ourselves in the place of another is paramount. We can never know what another person is really feeling, but we can, in our own mind, imagine what it might be like for us to be in the patient’s situation. “How would I feel if I was the one who was dying?” “What would I want?” “What would I want someone to say . . . or not say?” “What would feel supportive?” To ask ourselves these kinds of questions is the first step in being attuned to the other person’s suffering and pain. Although we can only guess what a patient might or might not want to talk about, we can ask some open-ended, leading questions that will give the patient the opportunity to express his/her feelings if he/she chooses. If we ask a question or two and the patient seems reticent or reluctant to talk, then we can assume that either this is not a good time or it is not something he/she wants to talk about with us. It does not

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mean we never ask another question but that we take our cues from the patient, listening carefully for a time when he/she might be open and willing to talk. We often hear “Mrs. White just does not want to talk about it.” This may or may not be true. When we are experiencing pain and suffering, it is not uncommon for us to be very particular with whom we share our feelings and innermost thoughts. We want to make sure that the person we tell will have some understanding of what we are going through and will respect our feelings and care for them. So, although Mrs. White “does not want to talk about it” with just anyone, she might be willing, even eager, to talk if the right person walked into her room—a person who would listen deeply, be present, and bear witness to her deepest fears and concerns. This would likely also be a person who would know when to honor the silence and say nothing and then would know what to say at the appropriate time. How do we know what to say? This is something we can learn with time and experience. It is vital to be observant when we are with other people, listening to what they say, when they say it, and how the message is delivered. Watching to see what “works” and what “does not” can be a wonderful way for us to learn how to listen and communicate effectively, especially in sensitive circumstances. To learn this skill requires that we be acutely aware—aware of our own responses and the responses, verbally and non-verbally, of the ones we are observing. It is almost always appropriate to ask a person to tell us more about the story. “How did you feel when that happened?” “What happened next?” “Tell me more about that.” There are times when we are so touched or overwhelmed by a story that we honestly do not know what to say. It is an authentic response and it is not inappropriate to say, “I have no idea what to say at this moment.” Because it is genuine and honest, people usually respond well to a statement that bears such candor. It is certainly preferable to making a casual remark that runs the risk of trivializing the person’s feelings or the situation. Even when a person is open and wants to talk about his/ her experience and feelings, it can be difficult to know just how far to take the conversation. What questions are appropriate to ask? Questions that inquire about a person’s feelings or experience are generally welcomed (Table 34–4). If a

Table 34–4 Spiritual Care Questions Are you scared? What makes life worth living? Is there anything you haven’t done that you need to do? What do you hope for? What are you most afraid of? Is there anything worse than death? What are you most proud of in your life? Do you have regrets?

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question is asked that a patient does not want to talk about, then he/she usually finds a way to “talk around” the question without actually giving an answer. Listening carefully to what is “not” said is crucial. It can tell us that he/she, at this moment, does not want to go there. Sometimes talking and listening are not enough. What a patient has to say may reveal that he or she needs more: a chaplain referral, a phone call to a family member, prayer, a walk in the garden, or a feeling of urgency to leave the hospital and go home. Just as advocating for patients is a standard component of nursing care, it is also a vital element of spiritual care and is a spiritual care intervention.

9= CASE STUDY A 75-Year-Old Woman, Living With Her Husband, Dying at Home, on Hospice Whenever the chaplain visited, the patient’s husband took center stage and monopolized the conversation. He did not seem to be able to hear his wife’s concerns when she talked about feeling weaker and getting worse. He would respond with, “Just keep praying, dear. God answers prayer.” One day in October, the nurse called the chaplain to say, “We’ve got a problem. She’s worse. She’s crying but her husband just keeps telling her she’ll be fine . . . just pray.” The nurse suggested that when the chaplain arrived he would take the patient’s husband into the kitchen and leave the patient and chaplain to talk. When the woman and the chaplain were finally alone, it was apparent the woman was weaker . . . and afraid. After a few minutes, the patient said she needed to see her daughters. It was very obvious how important this was to her. The chaplain knew the daughters, who lived 500 miles away, were planning to come for Thanksgiving. When the chaplain reminded the patient of her daughters’ upcoming visit, the woman started to cry. “You’re not going to be here at Thanksgiving are you?” the chaplain asked. And the woman shook her head “no.” After clearing the plan with the patient, the chaplain called the husband back into the room and explained to him the conversation she and his wife had just had. She gently told him that what his wife needed most right now was for him to understand she didn’t have much longer, and she needed him to call their daughters and explain how important it was for them to come immediately. It was difficult for the husband to hear—but he did—and he called their daughters that night. They arrived the next day. They were able to make several trips to be with their mother and father in the next 4 weeks. The woman died a week before Thanksgiving. o] Presence, deep listening, and bearing witness were important and vital, but in this case more was needed. Sometimes just engaging in life review—telling the story of one’s life—is what brings a sense of peace, and there is nothing more to be done. In other cases, it is not enough to just be with, be present, and

listen. Sometimes, as with this patient, the situation calls for action, for doing something more. Patients often give us specific information when we engage them in conversation, but it is not the only way we discover who patients are and what is important to them. Sometimes the clues are more subtle. They can be as simple as noticing a rosary on the bed or pictures of grandchildren on the wall. Sometimes just being aware of who visits the patient can provide insight about his/her spirituality. Noticing that a rabbi visited the patient can be a perfect entrée to asking about a person’s spiritual/religious beliefs. “I noticed a rabbi came to see you this morning. It made me wonder if you’re Jewish, and if you are, if there is anything we can do here in the hospital to support you in your faith?” It is important to ask and not just assume that because a rabbi was in the room that the person is Jewish. But it does give the healthcare provider a place to start in an effort to determine what kind of spiritual care, if any, the person may want or need. One man had been hospitalized for the better part of a year, and it had been extremely difficult for him and his family. He was a bone marrow transplant patient, which meant he could not have plants or flowers in his room and could not go outside for much of that year he was in the hospital. Only after the “spiritual intervention” from his daughter did the staff discover that he was quite a gifted rose gardener. It was somewhat ironic because the hospital was known for its huge rose gardens. Unfortunately, not being allowed outside meant this patient was not able to enjoy them. However, his daughter had the idea of photographing the roses in his yard as well as some on the hospital grounds. She took beautiful, close-up pictures of individual roses in all stages of unfolding, had the prints enlarged, cut around each one of them, and taped those hundreds of roses all over the walls of his room. It was beautiful! It gave enjoyment to not only the patient and his family but to the medical staff as well. Moreover, it told something significant about the man and generated conversation with him, as a person, apart from his identity as a patient. It made him more than just another body in a bed, with no particular identity other than his diagnosis. He was the one in the hospital who loved to be outside and knew how to grow beautiful roses. It gave the staff another way to connect with him, besides just his illness. A week before Christmas, the chaplain was paged back to the hospital shortly after leaving for the night. A 35-year-old patient was about a week away from dying and her mother and father, who were at her bedside, requested the chaplain come pray with them. The patient, who for medical reasons could no longer speak, was not particularly interested in a prayer, but she did want to sing Christmas carols. She couldn’t make a sound to talk but was able to make a little noise when she tried to sing. The words were completely unintelligible, but some of the tune made itself known. The patient, her mother, and the chaplain sang for the better part of the evening, one carol after another, frequently joined by a nurse, phlebotomist, or other healthcare professionals as they entered the room to give care. Before leaving for the night, the chaplain

Spiritual Care Interventions rushed out to buy Christmas CDs, which the family played all night according to the parents’ report the next day. An elderly woman, dying at home with hospice care, told the hospice team that years before, she and her husband had raised English Setters. She spoke longingly about that time in their lives. The chaplain had a friend who had an English Setter. He and his dog, Sarah, were a part of the local hospital’s pet team. Sarah was very comfortable being with people who were sick in bed. With the patient and her husband’s consent, the chaplain made arrangements for Sarah to visit and lie beside the woman in her last days. The pleasure and the memories were apparent on the patient’s face as she hugged and petted Sarah. Some patients clearly verbalize what they need physically, mentally, emotionally, and spiritually and are eager to talk and share their feelings. Try as we might, others just do not express who they are, and what they need, quite so obviously. But when we do discover something that will provide comfort, or a way for a person to more fully express his/her spirituality, it is important to do whatever we can to make it available. The clues, and the outcomes, do not have to be dramatic. One patient told everyone who would listen about her favorite nurse. The reason the nurse was so special? Whenever she went into the room to provide care, she sang the patient a song. These signs are merely ways to start a conversation about what is meaningful in a person’s life. The nurse does not have to be the only one to provide spiritual interventions. The nurse may be the one to learn what is needed, but sometimes another member of the healthcare team might be better suited to make it happen. If a patient wants someone to come and pray, perhaps, the chaplain would be the best person to provide the intervention. If the patient’s goal is to complete a will or advance directive, then maybe the social worker would be best to call. Sometimes it takes more than one person to help the patient achieve his/her goal. The nurse discovered that the patient did not want further medical treatment and really just wanted to go home to die. The nurse offered spiritual intervention when she advocated for the patient by informing the physician and the medical team, who made it possible for the patient to leave the hospital and go home. Spiritual care means finding a way to make a connection, discovering any needs or desires that might improve quality of life, and then advocating and making arrangements for the fulfi llment of those needs and desires. The job of a spiritual caregiver is always to be open (absent an agenda), listen, observe, and, when in doubt, ask questions. Assuming anything, without asking, leaves open the possibility that we will get it wrong. We never can be certain what is inside someone else’s mind and heart. To ask is always best.29

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The Use of Rituals in Spiritual Care Often when we think of rituals we speak of religious traditions that have been practiced and passed down for hundreds

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or thousands of years. Some of the most obvious rituals are: Holy Communion; Anointing of the Sick; prayer; and Scripture reading, chanting, singing, or saying the rosary. But rituals do not have to be religious in nature and can be created spontaneously, in the moment, to meaningfully acknowledge a person, event, or circumstance in our lives. Angeles Arrien stated, “Ritual is recognizing a life change, and doing something to honor and support the change.”30 We engage in non-religious, yet spiritual, rituals everyday when we bake a birthday cake for a friend and sing “Happy Birthday,” read a bedtime story to our children each night, or even read the newspaper over a cup of coffee in the morning. When patients are receiving palliative care they have often been sick for a long time and sometimes forget who they were before the illness began. Many times, the disease becomes the descriptor by which they identify themselves. For patients to avoid losing their identity to the disease, it can be especially helpful to maintain as much normalcy as possible, particularly when they have been confined to the hospital for long periods of time. Birthday cakes, bedtime stories, and reading the morning paper with a cup of coffee are simple rituals that can remind us of what we held dear before the onset of the disease. In a cancer hospital where bone marrow transplants require patients to be hospitalized for weeks—even months—at a time, a group of patients created a ritual that served them well. Every evening after dinner they met in a lounge area and played cards. This ritual was the highlight of their hospital stay. They looked forward to an activity that under “normal” circumstances might seem ordinary and routine. But under these circumstances, this ritual afforded them the opportunity to not only get out of their rooms but allowed them to be with other people (people who had a good understanding of what they were going through) and to forget they had cancer for a while, to participate in an activity that felt “normal” again, to socially engage with other people . . . and the list goes on. The nursing staff was incredibly supportive, adjusting the schedules of what needed to be done so that these patients could be free in the evenings to participate in their nightly ritual. Nurses can be invaluable in suggesting, and supporting, “rituals” for patients. When professional caregivers are aware of their patients as unique individuals with distinct wants, needs, and desires, then caregivers can offer meaningful suggestions for rituals that might be supportive to the patient’s life and experience. Listening to music during unpleasant treatments might be soothing to a musician or a teenager who loves music. Getting a patient dressed early each morning, before breakfast, might be a practice that helps the person feel more able to take on the day. Sitting at the bedside to hear a patient’s stories could be important to a young mother who wants to talk about the time she spent with her children who visited earlier in the day. The list of rituals is endless. Although religious rituals are fewer in number, they can be equally important and beneficial. Caregivers cannot be expected to know all the religious rituals people practice, so

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it can be beneficial for the nurse, and others, to ask patients about any traditions or rituals that may be meaningful or important to them. Although the healthcare professional may not be involved with the rituals themselves, they can play a vital role in making sure the patient has some time alone, uninterrupted, so that the ritual will have the opportunity to be fully expressed and experienced. Rituals are a part of each of our lives. Nurses can be the conduit through which palliative care patients can find support and meaning by recognizing the importance of ritual and by facilitating their expression.

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Spiritual Care Near the Time of Death As death draws near, it is even more important that professional caregivers attend to patients and their families with kindness, authenticity, and deep awareness. This awareness hears what is being said, and not said, and sees the visual signs of want, need, desire, and distress. Even those families who cannot begin to entertain the possibility of death are aware, on some level, that life is changing. So it is a great kindness to be especially insightful and responsive to their wants, needs, desires, feelings, and fears. Patients may not be able, or willing, to ask for what they want, but if nurses and other healthcare professionals are attentive and perceptive, clues are frequently obvious and reveal what is needed. When providing spiritual care for those who are imminently dying, the three most important things to remember are: don’t wait; intently watch and listen; and trust your instincts. A grandmother, who was in relatively good health until 3 weeks prior, fell and broke a hip, was bedridden at home on hospice, and declining rapidly. Some days she was alert and oriented; other days, she was wildly confused. This particular morning began with her mind and memory cloudy. While sleeping, her breathing pattern changed and it caught the attention of her granddaughter. The elderly woman was being cared for around the clock by her three daughters and a granddaughter who also worked as a hospice chaplain. Becoming aware of the subtle changes, the granddaughter instinctively felt they should call the rest of the family to the bedside. They did just that, and within a couple of hours there were dozens of grandchildren, great-grandchildren, family members, and friends assembled in the old woman’s tiny house. When the family began to arrive the grandmother perked up and became much more alive and alert than she had been in weeks. This woman, who loved her family deeply but was never one to hug or kiss or show affection of any kind— and certainly had never been described as having a sense of humor—blossomed and came to life in front of her family. She was affectionate, chatty, warm, and funny, and her family saw a side of her no one there had witnessed, ever, in the grandmother’s 90 years. The day was fi lled with stories and great humor. She lived another 10 days. They were quiet days, and she was withdrawn and frequently confused. Although

the family never again experienced the joy, affection, and laughter of that Friday, the family continues to describe it as the best time they ever had with her, and they are exceedingly grateful for the gift. Had the granddaughter ignored the almost imperceptible signs of decline and neglected to call in the family, who knows if they would have ever had another opportunity to experience their loved one in such a significant way? It is easy to doubt and question ourselves, or dismiss signs and clues that are often barely visible and unclear. Good spiritual care, especially for the dying, requires caregivers to hone their skills in assessing these subtleties. Don’t wait; intently watch and listen; and trust your instincts. To not do these things risks missing the moment and the opportunity that, literally, might never come again for the one who is dying.

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Healthcare Professional Grief and Well-Being Everyday, healthcare professionals deal with their patients’ grief, but that does not make the caregivers immune to their own. The death of a loved one or friend is not the only kind of grief we experience. All people who are alive and aware experience grief, whether or not they have ever known someone who has died. When someone is disrespectful and rude to us, when we do not get the job we want, or when we are transferred to another part of the country, we experience grief. Grief can be the belief that we are not enough or that we failed, or the realization that life is changing and our hopes and dreams will never be realized.31 When a loved one dies or when we experience extreme disappointment and loss, the grief never completely goes away, but with time and effort, it is possible to come to terms with the loss, establish a new relationship with the deceased, or circumstance, and move on.28 Although time does have its own way of easing suffering, it is not the only thing required to heal our grief. Grief is not an event. Grief is not linear. It is a process and it takes not only time, but effort, energy, work, and intention. It is most often a sequence of “two steps forward, one step back.” Individual grief therapy or grief support groups can be useful tools in teaching us how to deal with our grief. It is also important for us to be patient and mercy for ourselves.32 There is no set time frame for grief. It takes as long as it takes. One man’s wife died and he felt it took about 3 years to reconcile the loss. Another woman died and her husband did not feel like he had moved forward at all, even after 5 years. Many hospices, which have served to educate our society on the importance of the grief process, give their employees only 3 days paid bereavement—and then only for very immediate family members. Very often the person has not been buried, or a service conducted, in those 3 days, and the shock of the death can delay active grieving for some time. Three days is not enough time to face the world after a painful loss and then be expected to act as though everything is just fine. Just being familiar with death and grief does not

Spiritual Care Interventions guarantee understanding, or ease, in dealing with the process. Healthcare professionals can have just as much difficulty as their patients—maybe more—given the frequency with which they come face to face with dying, death, and grief. It can be difficult to care for someone who is grieving when the caregiver is in the midst of his/her own grief journey. A caregiver’s grief can be triggered just by being in the presence of a patient who is also grieving. It is sometimes challenging for a busy caregiver to distinguish between the patient’s grief and his/her own. For the well-being of all concerned, it is essential for healthcare professionals to be aware of and deal with their own grief and loss. Nurses and others are better able to serve when they have acknowledged their own pain and have made the effort to work through their own grief process.31

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Nurses Providing Spiritual Care Deep listening, presence, bearing witness, and compassion at work are all simple ideas. Although simple, these interventions are not easy. To provide these interventions in a way that invites healing requires, from the caregiver, a willingness to learn, the ability to be without agenda, and the commitment to be ever vigilant and self-introspective. Nurses, who are called upon to provide these interventions, are at the forefront of patient care. They are asked, everyday, to deal with the medical, emotional, social, and spiritual crises and burdens of others’ lives. They are expected to ease suffering whenever, and wherever, possible. At best, nursing is difficult work. We seem to be asking almost superhuman acts from nurses, who want deeply to provide all that is asked of them. Fortunately, quality spiritual care does not require superhuman acts. It does require human kindness, compassion, and caring.

References 1. Halifax J. Project on Being with Dying Training for Health Care Professionals. Santa Fe, New Mexico, 2001. 2. Thoresen EC. Spirituality and health: Is there a relationship? J Health Psychol 1999;4(3):409–431. 3. Bryson KA. Spirituality, meaning, and transcendence. J Palliat Support Care 2004;2:321–328. 4. Bryson KA. Spirituality, meaning, and transcendence. J Palliat Support Care 2004;2:321–328. 5. Post SG. Unlimited love: Altruism, compassion and service. Philadelphia, PA: Templeton Foundation Press: 2003. 6. www.macmillandictionary.com/dictionary/american/existential (accessed October 6, 2009). 7. Wright MC. The essence of spiritual care: A phenomenological enquiry. J Palliat Med 2002;16:125–132.

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8. Chochinov HM, Cann BJ. Interventions to enhance the spiritual aspects of dying. J Palliat Med 2005;8(S-1):S-103–S-115. 9. Bryson KA. Spirituality, meaning, and transcendence. J Palliat Support Care 2004;2:321–328. 10. Remen RN. In the service of life. Noetic Sciences Review, Spring 1996;37:24–25. 11. Hanson LC, Dobbs D, Usher BM, Williams S, Rawlings J, Daaleman TP. Providers and types of spiritual care during serious illness. J Palliat Med 2008;11(6):907–914. 12. Strang S, Strang P. Questions posed to hospital chaplains by palliative care patients. J Palliat Med 2002;5(6):857–864. 13. Halifax J. Project on Being with Dying Training for Health Care Professionals. Santa Fe, New Mexico, 2001. 14. Halifax J. Project on Being with Dying Training for Health Care Professionals. Santa Fe, New Mexico, 2001. 15. Byock I. The meaning and value of death. J Palliat Med 2002;5(2):279–288. 16. Gardner D. Presence. In: Bulechek G, McCloskey J, eds. Nursing Interventions: Treatments for Nursing Diagnosis. Philadelphia, PA: Saunders; 1985:316–324. 17. Neff KD. Self-compassion: An alternative conceptualization of a healthy attitude toward oneself. Self Identity 2003;2:85–102. 18. McDonough-Means S, Kreitzer MJ, Bell I. Fostering a healing presence and investigating its mediators. J Altern Complement Med 2004;10(S1):S-25–S-41. 19. Christensen JF, Levinson W, Colligan JL, Dunn PM, Jones SR, Morgenstern A. A one-day communication workshop for internal medicine residents. J Med Educ 1987;62:687–690. 20. Frankel RM. Emotion and the physician–patient relationship. Motiv Emotion 1995;19:163–173. 21. Fossum B, Arborelius E, Theorell T. How do patients experience consultations at an orthopedic out-patient clinic? Eur J Public Health 1998;8:59–65. 22. Chochinov HM, Cann BJ. Interventions to enhance the spiritual aspects of dying. J Palliat Med 2005;8(S-1):S-103–S-115. 23. Slater V. What does “spiritual care” now mean to palliative care? Eur J Palliat Care 2007;14(1):32–34. 24. Mako C, Galek K, Poppito SR. Spiritual pain among patients with advanced cancer in palliative care. J Palliat Med 2006;9(5)1106–1113. 25. Sulmasy DP. Spiritual issues in the care of dying patients: “…it is okay between me and god.” JAMA 2006;296(11):1385–1392. 26. Halifax J. personal communication December 12, 2008. 27. Millspaugh D. Assessment and response to spiritual pain: Part II. J Palliat Med 2005;8(6):1110–1117. 28. Klaus D, Silverman PR, Nickman SL. Continuing Bonds: New Understandings of Grief. Philadelphia, PA: Taylor & Francis, 1996. 29. Pronk K. Role of the doctor in relieving spiritual distress at the end of life. Am J Hosp Palliat Med 2005;22(6):419–425. 30. Arrien A. The Four-fold Way. San Francisco, CA: Harper San Francisco, 1993. 31. Levine S, Levine O. The grief process. Boulder, CO: Sounds True: 1999. 32. Levine S, Levine O. The grief process. Boulder, CO: Sounds True: 1999.


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Tami Borneman and Katherine Brown-Saltzman

Meaning in Illness But there is something about cancer that helps people to change. It gives momentum for transformation—Cancer patient . . . Um I thought I was doing fine on [meds] otherwise until this happened but then I don’t know what to expect. What do I, run around laughing? I mean that’s what I asked my husband one night, I says is it supposed to show that you have a good attitude, are you supposed to walk around with a big smile on your face and say ‘Oh gee, I’ve been diagnosed with cancer but that’s okay.’ You know and I wonder sometimes am I gonnna go cuckoo about this or what?—Cancer patient In the driest whitest stretch Of pain’s infinite desert I lost my sanity And found this rose —Galal al-Din Rumi; Persia, 1207–1273 ◆ ◆

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Key Points Finding meaning in illness is an important issue when facing the end of life. The process of finding meaning in illness involves a journey through sometimes very difficult transitions. A terminal illness can greatly impact the patient–caregiver relationship. It is essential for nurses to experience their own journey regarding the dying process and bring with them a willingness to be transformed by it.

Is it possible to adequately articulate and give definition to meaning in illness? Or is meaning in illness better described and understood through using symbolism and metaphors such as the above poem? To try to define that which is enigmatic and bordering on the ineffable seems almost sacrilegious. The unique individual journey of finding meaning in illness experienced by each patient facing the end of life and their family caregiver would seem to be diminished by the very process that seeks to understand through the use of language. Is it that we seek to find meaning in illness or is it that we seek to find meaning in the life that is now left and in those relationships and things we value? Do we seek to find meaning in illness itself as an isolated event or that which is beyond the illness, such as how to live out this newly imposed way of life? Terminal illness often forces us to reappraise the meaning and purpose of our life. If we allow space in our lives for the process of meaning in illness to unfold, we then move from the superficial to the profound. Terminal illness also forces us at some point to look directly at death, yet we resist getting in touch with the feelings that arise. Everything in us seeks life. Everything in us hopes for life. Everything in us denies death. There is something very cold, very unmoving, and very disturbing about it all. Does the end of one’s human existence on Earth need to be the sole metaphor for death? Although end-of-life issues have progressed nearer to the forefront of health care, the dying patient is still the recipient of an impersonal, detached, and cure-focused system, thereby exacerbating an already catastrophic situation. As necessary as it is for nurses to use the nursing process, it is not enough. The patient’s illness odyssey beckons us to go beyond assessment, diagnosis, intervention, and evaluation to a place of vulnerability, not in an unprofessional manner but, rather, in a way that allows for a shared connectedness unique to 673

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each patient–nurse relationship. We need to be willing to use feelings appropriately as part of the therapeutic process. Separating ourselves from touching and feeling to protect ourselves only serves to make us more vulnerable, because we have then placed our emotions in isolation. Nurses can be a catalyst for helping the patient and family find meaning in the illness and, in the process, can help themselves define or redefine their own meaning in life, illness, and death.

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Meaning Defined Johnston-Taylor1 presents several definitions for meaning (Table 35–1). In the dictionary,2 one finds meaning defined simply as “something that is conveyed or signified” or as “an interpreted goal, intent, or end.” But it is the etymology of the word “mean” that helps nursing come to understand our potential for supporting patients in the process of finding

Table 35–1 Definitions of Meaning Meaning

[Search for] meaning

Personal search for meaning

“refers to sense, or coherence. . . . A search for meaning implies a search for coherence. ‘Purpose’ refers to intention, aim, function. . . . however, ‘purpose’ of life and ‘meaning’ of life are used interchangeably”37 “a structure which relates purposes to expectations so as to organise actions. . . . Meaning . . . makes sense of actions by providing reasons for it”39 “is an effort to understand the event: why it happened and what impact it has had . . . [and] attempts to answer the question(s), What is the significance of the event? . . . What caused the event to happen? . . . [and] What does my life mean now?”40 “is an attempt to restore the sense that one’s life orderly and purposeful”41 “the process by which a person seeks to interpret a life circumstance. The search involves questioning the personal significance of a life circumstance, in order to give the experience purpose and to place it in the context of a person’s total life pattern. The basis of the process is the interaction between meaning in and of life and involves the reworking and redefining of past meaning while looking for meaning in a current life curcumstance.”42

meaning in their lives, even as they face death. Mean comes from the Old English maenan, “to tell of.” One does not find meaning in a vacuum; it has everything to do with relationships, spirituality, and connectedness. While the process of finding meaning depends greatly on an inward journey, it also relies on the telling of that journey. The telling may use language, but it may also be conveyed by the eyes, through the hands, or just in the way the body is held. Frankl3 reminds us that the “will to meaning” is a basic drive for all of humanity and is unique to each individual. A life-threatening illness begs the question of meaning with a new urgency and necessity. Cassell4 tells us that “all events are assigned meaning,” which entails judging their significance and value. Meaning cannot be separated from the person’s past; it requires the thought of future and ultimately influences perception of that future (p. 67). Finding meaning is not a stagnant process; it changes as each day unfolds and the occurrences are interpreted. As one patient reflected upon his diagnosis, “Even though I have this I am still a whole person my thoughts are different, my ambitions are a little different because I want to spend as much time as I can with my grandkids.”5 Coming face to face with one’s mortality not only defines what is important but also the poignancy of the loss of much that has been meaningful. One’s spirituality is often the key to transcending those losses and finding ways to maintain those connections, whether it is the belief that one’s love, work, or creativity will remain after the physical separation or the belief that one’s spirit goes on to an afterlife or through reincarnation. Meaning in life concerns the individual’s realm of life on Earth. It has to do with one’s humanness, the temporal, and the composites of what one has done in life to give it meaning. Meaning of life has more to do with the existential. It is looking beyond one’s earthly physical existence to an eternal, secure, and indelible God or spiritual plane. The existential realm of life provides a sense of security whereby one can integrate experiences.6 Spirituality has been defined as a search for meaning.7,8 One of the Hebrew words for meaning is biynah (bee-naw), which is understanding, knowledge, meaning, and wisdom. It comes from the root word biyn (bene), which means to separate mentally or to distinguish.9 How is it that one can come to knowledge and understanding? Patients receiving palliative care often describe a sense of isolation and loneliness. They frequently have endless hours available, while at the same time experiencing a shortening of their life. It is here that nursing has a pivotal role as the listener, for when the ruminations of the dying are given voice, there is an opportunity for meaning. Important life themes are shared, and the unanswerable questions are at least asked. As the stranger develops intimacy and trust, meaning takes hold. Suffering creates one of the greatest challenges to uncovering meaning. For the dying patient, suffering comes in many packages: physical pain, unrelenting symptoms (nausea, pruritus, dyspnea, etc.), spiritual distress, dependency,

Meaning in Illness

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Table 35–2 Summary of Hypotheses and Theses from the Literature on Meaning Hypothesis/Thesis

Authors

The search for meaning is a basic human need. Meaning is necessary for human fulfi llment. Finding meaning fosters positive coping and increased hopefulness. One type of meaning-making activity in response to threatening events is to develop causal attributions. Meaning making can involve the search for a higher order. Making meaning often involves the use of social comparisons. Meaning can be derived through construing benefits from a negative experience. Meaning sometimes focuses on illness as challenge, enemy, or punishment. Pain and suffering often prompt a search for meaning. Uncontrolled pain or overwhelming suffering hinder the experience of meaning. One goal of care is to promote patients’ and caregivers’ search for and experiences of meaning.

Frankl 1959.3 Steeves and Kahn 1987.43 Ersek 1991;44 Steeves and Kahn 1987;43 Taylor 1983.41

multiple losses, and anticipatory grieving. Even the benefits of medical treatments given to provide hope or palliation can sometimes be outweighed by side effects (e.g., sedation and constipation from pain medication), inducing yet further suffering. The dictionary defi nes suffering in this way: “To feel pain or distress; sustain loss, injury, harm, or punishment.”2 But once again, it is the root word that moves us to a more primitive understanding—the Latin sufferer, which comprises sub, “below” and ferre, “to carry.” The weight and isolation of that suffering now becomes more real at the visceral level. Cassell 4 reminds us that pain itself does not foreordain suffering; it is, in fact, the meaning that is attributed to that pain that determines the suffering. In his clinical defi nition, “Suffering is a state of severe distress induced by the loss of the intactness of person, or by a threat that the person believes will result in the loss of his or her intactness” (p. 63). Suffering is an individual and private experience and will be greatly influenced by the personality and character of the person; for example, the patient who has needed control during times of wellness will fi nd the out-of-control experience of illness as suffering.4 In writing about cancer pain and its meaning, Ersek and Ferrell10 provide a summary of hypotheses and theses from the literature (Table 35–2). Although not always recognized, it is the duty of all who care for patients to alleviate suffering and not just treat the physical dimensions of the illness. This is no small task, as professionals must first be free from denial and the need to self-protect to see the suffering of another. Then, they must be able to attend to it without trying to fi x it or simplify it. The suffering needs to be witnessed; in the midst of suffering, presence and compassion become the balm and hope for its relief.

Gotay 1983;45 Haberman 1987;46 Steeves and Kahn 1987;43 Taylor 1983;41 Chrisman and Haberman 1977.47 Ersek 1991;44 Ferrell et al. 1993;48 Steeves and Kahn 1987.43 Ferrell et al. 1993;48 Taylor 1983;41 Ersek 1991;44 Haberman 1987.46 Ersek 1991;44 Haberman 1987;46 Taylor 1983.41 Barkwell 1991;49 Ersek 1991;44 Lipowski 1970.50 Frankl 1959;3 Steeves and Kahn 1987;43 Taylor 1983.41 Steeves and Kahn 1987.43 Ersek 1991;44 Ferrell et al. 1993;48 Steeves and Kahn 1987;43 Haberman 1988.51

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The Process of Finding Meaning in Illness From years of working with terminally ill patients and their families, the authors have found that the process of finding meaning in illness invokes many themes. The title given to each theme is an attempt to represent observed transitions that many terminally ill patients seem to experience. Not all patients experience the transitions in order, and not all transitions are experienced. However, we have observed that these transitions are experienced by the majority of patients. Issues faced by family caregivers and health-care professionals are discussed in later sections. The themes shared in this section are the imposed transition, loss and confusion, dark night of the soul, randomness and absence of God, brokenness, and reappraisal. In experiencing some or all of these transitions, one can perhaps find meaning in this difficult time of life.

The Imposed Transition Being told that you have a terminal illness can be like hearing the sound of prison doors slam shut. Life will never be the same. The sentence has been handed down, and there is no reversing the verdict. Terminal illness is a loss, and there is nothing we can do to change the prognosis even though we may be able to temporarily delay the final outcome. The essence of our being is shaken, and our souls are stricken with a panic unlike any other we have ever felt. For the first time, we are faced with an “existential awareness of nonbeing.”11 For a brief moment, the silence is deafening, as if suspended between two worlds, the known and the unknown. As one “regains consciousness,” so to speak, the

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pain and pandemonium of thoughts and emotions begin to storm the floodgates of our faith, our coping abilities, and our internal fortitude, while simultaneously the word “terminal” reverberates in our heads. There is no easy or quick transition into the acceptance of a terminal diagnosis. Facing the end of life provokes questions. The self-reflective questions include both the meaning of life and the meaning in life. Whether we embrace with greater fervor the people and things that collectively give us meaning in life or we view it all as now lost, the loss and pain are real. Nothing can be done to prevent the inevitable. There is a sense of separation or disconnectedness in that while I am the same person, I have also become permanently different from you. Unless you become like me, diagnosed with a terminal illness, we are in this sense separated. In a rhetorical sense, the meanings we gain in life from relationships and the material world serve to affirm us as participants in these meanings.11 When these meanings are threatened by a terminal diagnosis, we fear the loss of who we are as functioning productive human beings. The affirmations we received from our meanings in life are now at a standstill. A 65-year-old retired military man, although accepting of his prognosis, fought to delay the inevitable for as long as possible. As a military man, he was not afraid of dying. The relationship with one of his grown children was very good and he adored his grandchildren. They were the reason he was fighting the cancer. He felt that life was most enjoyable when he spent time with them. His concern about dying was that because the grandchildren were young, there would not be enough time with them for them to remember him after he died. “My grandkids are more important you know so cause they got to remember their grandpa. I want them to think about me, what grandparents did you know?”12 When we discussed ways that he might be able to leave them a legacy, he began to understand that he saw himself and his remaining time in limited ways. He feared losing what had come to define his life. Encouraging him to redefine his life in terms of meaning through leaving a legacy for his grandchildren gave him new insights and provided a practical way to spend the rest of his days. In addition to questioning meaning in life, those facing the end of life also question the meaning of life. A lifethreatening illness makes it difficult to maintain an illusion of immortality.13 What happens when we die? Is there really a God? Is it too late for reconciliation? For those believing in life after death, the questions may focus on uncertainty of eternal life, fear of what eternal life will be like, or the possibility of this being a test of faith. No matter what the belief system, the existential questions are asked. We reach out for a connection with God or something beyond one’s self to obtain some sense of security and stability. Then, in this ability to transcend the situation, ironically, we somehow feel a sense of groundedness. Frankl3 states, “It denotes the fact that being human always points, and is directed, to something or someone, other than oneself—be it a meaning to fulfi ll or another human being to encounter.” There is an incredibly

strong spiritual need to find meaning in this new senseless and chaotic world.

Loss and Confusion One cancer patient stated, “Our lives are like big run-on sentences and when cancer occurs, it’s like a period was placed at the end of the sentence. In reality, we all have a period at the end of the sentence, but we don’t really pay attention to it.”14 With a terminal diagnosis, life is changed forever, for however long that life may be. Each day life seems to change as one is forced to experience a new aspect of the loss. There is a sense of immortality that pervades our lust for life, and when we are made to look at our mortality, it is staggering. With all of the many losses, coupled with the fear of dying, one can be left feeling confused from the infinite possibilities of the unknown. The panorama of suffering seems to be limitless. The pain of loss is as great as the pleasure we derived from life.15 The pain is pure and somewhat holy. The confusion comes not only from one’s world having been turned upside down but also from those who love us and care about us. It is not intentional; nevertheless, its impact is greatly felt. In trying to bring encouragement or trying to help one find meaning, the loss and pain are sometimes minimized by comparing losses, attempting to save God’s reputation by denying the one hurting the freedom to be angry at God, or by immediately focusing on the time left to live. The hurting soul needs to feel the depth of the loss by whatever means it can. The pain from loss is relentless, like waves from a dark storm at sea crashing repeatedly against rocks on the shoreline. A 55-year-old woman with terminal lung cancer experienced further physical decline each day. She was supported by a husband who lovingly doted on her. She was one who loved life and loved her family. Many losses were experienced because of her comorbid conditions along with the cancer. The fact that her family wanted her to focus on life and not her disease or death added to these losses. Her husband informed us that they knew she was going to die but felt that her quality of life would be better if these issues were not discussed. The patient had many thoughts and feelings to sort through and wanted to talk, but no one was listening. Her loss was not just physical; it also was an imposed emotional loss caused by a loving family trying to do the right thing. Many times the patient ended up in tearful frustration. The communications with her family were different, constantly reminding her that nothing was the same and, in turn, reminded her of her losses and impending death.

Dark Night of the Soul The descent of darkness pervades every crack and crevice of one’s being. One now exists in the place of Nowhere surrounded by nothingness that is void of texture and contour. One’s signature is seemingly wiped away, taking with it the identification of a living soul.15 Job states, “And now my soul is poured out within me; days of affliction have seized me. At

Meaning in Illness night it pierces my bones within me, and my gnawing pains take no rest . . . My days are swifter than a weaver’s shuttle, and come to an end without hope.”16 “One enters the abyss of emptiness—with the perverse twist that one is not empty of the tortured feeling of emptiness.”17 This is pain’s infinite desert. Darkness looms as one thinks about the past, full of people and things that provided meaning in life, that will soon have to be given up. Darkness looms as one thinks about the future, because death precludes holding on to all that is loved and valued. Darkness consumes one’s mind and heart like fire consumes wood. It makes its way to the center with great fury, where it proceeds to take possession, leaving nothing but a smoldering heap of ashes and no hope of recovering any essence of life.18 A woman with fairly young children relapsed after several years free of colon cancer. She received several months of treatment with an experimental protocol. She suffered greatly, not only from the effects of the chemotherapy but also from the long periods of time not being able to “be there” for her children. When it became clear that the chemo was not working as expected, she became tortured by the thought of abandoning her children at a time when they so greatly needed a mother and the fact that she had gambled with the little time she had left and had lost. Now in her mind, her children had the double loss of months of quality time she could have had with them and her impending death. She became inconsolable because of this darkness. Time to intervene was very limited. Allowing her the room for suffering and being “present” to this suffering as a nurse was essential. In addition, moving back into her mothering role and providing for her children by helping to prepare them for her death became the pathway through the darkness and into meaning. Although one might try, there are no answers—theological or otherwise—to the “whys” that engulf one’s existence. Death moves from an “existential phenomenon to a personal reality.”19 All our presuppositions about life fall away and we are left emotionally naked. There is neither the physical, the emotional, nor the spiritual strength to help our own fragility. The world becomes too big for us and our inner worlds are overwhelming.15 The enigma of facing death strips order from one’s life, creating fragmentation and leaving one with the awareness that life is no longer tenable.

Randomness and the Absence of God The pronouncement of a terminal diagnosis provokes inner turmoil and ruminating thoughts from dawn to dusk. Even in one’s chaotic life, there was order. But order does not always prevail. A young athlete being recruited for a professional sport is suddenly killed in a tragic car accident. A mother of three small children is diagnosed with a chronic debilitating disease that will end in death. An earthquake levels a brand new home that a husband and wife had spent years saving for. A playful young toddler drowns in a pool. There seems to be no reason. It would be different if negligence were involved.

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For example, if the young athlete were speeding, or driving drunk, although the loss is still quite devastating, a “logical” reason could be assigned to it. But randomness leaves us with no “logical” explanation.17 The word “random” comes from the Middle English word radon, which is derived from the Old French word randon, meaning violence and speed. The word connotes an impetuous and haphazard movement, lacking careful choice, aim, or purpose.2 The feeling of vulnerability is overwhelming. In an effort to find shelter from this randomness, meaning and comfort is sought from God or from something beyond one’s self, but how do we know that God or something beyond ourselves is not the cause of our loss? Our trust is shaken. Can we reconcile God’s sovereignty with our loss?17 Can we stay connected to and continue to pull or gain strength and security from something beyond ourselves that may be the originator of our pain? There is a sense of abandonment by that which has been our stronghold in life. Yet to cut ourselves off from that stronghold out of anger would leave us in a state of total disconnection. A sense of connection is a vital emotion necessary for existence, no matter how short that existence may be. But facing death forbids us to keep our existential questions and desires at a distance. Rather, it seems to propel us into a deeper search for meaning as the questions continue to echo in our minds.

Brokenness Does one come to a place of acceptance within brokenness? Is acceptance even attainable? Sometimes. Sometimes not. Coming to a place of acceptance is an individual experience for each person. In a wonderful analogy of acceptance, Kearney20 states, “Acceptance is not something an individual can choose at will. It is not like some light switch that can at will be flicked on or off. Deep emotional acceptance is like the settling of a cloud of silt in a troubled pool. With time the silt rests on the bottom and the water is clear”(p. 98). Brokenness does, however, open the door to relinquishing the illusion of immortality. Brokenness allows the soul to cry and to shed tears of anguish. It elicits the existential question “why?” once again, only this time not to gain answers but to find meaning. A woman in her mid-60s, dying of lung cancer, shared how she came to a place of acceptance. When she was first diagnosed, the cancer was already well advanced. Her health rapidly declined, and she was more or less confined to bed or sitting. Out of her frustration, anger at God, sadness, and tears came the desire to paint again. It was her way of coping, but it became more than that. It brought her to a place of peace in her heart. She had gotten away from painting because of busyness and was now learning to be blessed by quietness. She was very good at creating cards with her own designs in watercolor, leaving the insides blank to be fi lled in by the giver. She would give these cards away to many people as her gesture of love and gratitude. If we go back to the poem at the beginning of this chapter, it wasn’t until “sanity” was lost that the rose was found.

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A gradual perception occurs, whereby we realize that the way out is by no longer struggling.20 When we come to the end of ourselves and the need to fight the inevitable that is death, we give space for meaning to unfold. It is not that we give up the desire but that we relinquish the need to emotionally turn the situation around and to have all our questions answered. Sittser,17 a minister who experienced a sudden loss of several immediate family members, states, “My experience taught me that loss reduces people to a state of almost total brokenness and vulnerability. I did not simply feel raw pain; I was raw pain” (p. 164). Pain and loss are still profound, but in the midst of these heavy emotions there begins to be a glimmer of light. Like the flame of a candle, the light may wax and wane. It is enough to begin to silhouette those people and things that still can provide meaning.

Reappraisal It is here where one begins to realize that something positive can come from even a terminal diagnosis and the losses it imposes. The good that is gained does not mitigate the pain of loss but, rather, fosters hope—hope that is not contingent on healing but on reconciliation, on creating memories with loved ones, on making the most of every day, on loving and being loved.21 It is a hope that transcends science and explanations and changes with the situation. It is not based on a particular outcome but, rather, focuses on the future, however long that may be. Despair undermines hope, but hope robs death of despair.22 A male patient in his late 30s, facing the end of life after battling leukemia and having gone through a bone marrow transplant, shared that he knew he was going to die. It took him a long time to be able to admit it to himself. The patient recalled recently visiting a young man who had basically given up and did not want his last dose of chemotherapy. He talked a while with this young man and encouraged him to “go for it.” He told him that there is nothing like watching the last drop of chemo go down the tube and into his body, and the sense of it finally being all over. The patient shared with the young man that when he received his own last dose of chemotherapy, he stayed up until three in the morning to watch the last drop go down the tube. Although the chemotherapy did not help him to the extent that he wanted, he wanted to encourage the young man to hope and not give up. Life was not yet over. He had tears in his eyes when he finished the story. Facing end of life with a terminal diagnosis will never be a happy event. It will always be tragic because it causes pain and loss to everyone involved. But at a time unique to each person facing death, a choice can be made as to whether one wants to become bitter and devalue the remaining time or value the time that is left as much as possible. An important choice to be made during this time is whether to forgive or to be unforgiving—toward oneself, others, God, or one’s stronghold of security in life. Being unforgiving breeds bitterness and superficiality. As we face the end

of life, we need both an existential connection and a connection with others. Being unforgiving separates us from those connections, and it is only through forgiveness that the breech is healed. Forgiveness neither condones another’s actions nor does it mean that this terminal diagnosis is fair. Rather, forgiveness is letting go of expectations that one somehow will be vindicated for the pain and loss. Whether by overt anger or by emotional withdrawal, in seeking to avoid vulnerability to further pain and loss, we only succeed in making ourselves more vulnerable. Now we have chosen a deeper separation that goes beyond facing the death of the physical body—that of the soul.17 Positive vulnerability through forgiveness provides a means of healing and, when possible, reconciliation with others. It always provides healing and reconciliation with one’s God or one’s stronghold of security. Forgiveness allows both physical and emotional energy to be used for creating and enjoying the time left for living. A 30-year-old woman was admitted to the hospital with advanced metastatic breast cancer. She was unknown to the hospital staff but had a good relationship with her oncologist. During the admissions assessment, the young woman could not give the name of anyone to contact in the event of an emergency. When pressed, she stated that she was alienated from her family and chose not to be in touch. She agreed that after her death her mother could be called, but not before. A social worker was summoned in the hope that something could be done to help with some unification. However, the social worker came out of the room devastated by the woman’s resolve. The chaplain also found no way to reconnect this woman’s family. The nursing staff experienced moral distress as they watched this woman die, all alone in the world. One of the authors worked with the staff to help them realize that they had become trusted and in a sense were her substitute family. One may not always be able to fix the pain of life’s fractures or bring people to a place of forgiveness, but it is important not to underestimate what is happening in the moment. Healing for this patient came through the relationship with her doctors and nurses, and she died not alone but cared for. There are many emotions and issues with which those facing death must contend. It is not an easy journey and the process is wearing; nevertheless, the rose can be found.

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Impact of the Terminal Illness on the Patient– Caregiver Relationship Each of us comes to new situations with our life’s experiences and the meanings we have gained from them. It is no different when being confronted with illness and the end of life. However, in this special episode of life, there are often no personal “reruns” from which to glean insight. Patient and family come together as novices, each helping the other through this unknown passage. Because different roles and relationships exist, the impending loss will create different meanings for each person involved.

Meaning in Illness Facing the loss of someone you love is extremely difficult. For the family caregiver, the process of finding meaning is influenced by the one facing death. One example experienced by one of the authors of this chapter involved a wife’s discussion with her terminally ill husband over several months regarding his outlook on life. As Christians, they knew where death would take them, but she was curious as to what that meant to him and how he was handling the unknown. She felt strong in her own faith but also felt like she was giving lip service to it at times. He described life as having even more meaning in that although he loved her very much and the life they had together, he could now “cherish” every moment of that time. He was sad knowing that he would eventually die from the cancer, but until that time came, he just wanted to enjoy life with her. She shared that while what he said seemed obvious when he said it, for some reason this time it really spoke to her soul and she felt peace. In another example, a woman helped her family create meaning for themselves from the picture she had painted of herself sitting on the beach as a little girl next to a little boy. She explained that the little boy had his arm around her as they stared out at the sea. Each time the waves covered the surface of the beach and then retreated, the sea would carry with it bits and pieces of her fears and disease. The birds circling overhead would then swoop down to pick up and carry off any pieces not taken by the sea. The little boy’s arm around her signified all the loving support she had received from others. When the time would come for her to die, she would be ready because she had been able to let go of life as she knew it. She had let the waves slowly carry that which was of life out to sea and yet had learned to hold on to the meaning that that life had represented. In doing so, she enabled her family to hold on to the meaning of their relationship with her and enabled them to remain symbolically connected after her death. A final, poignant story offers a different perspective. A 60-year-old woman with stage IV ovarian cancer was very angry at her husband and perplexed at God. She had troubles finding any positive meaning in anything in life. She was upset that her life would be cut short, and she would not live to see her grandchildren grow. She blamed her husband for not wanting to have children after the surgeon told her that never having children increased the risk for ovarian cancer. She resented the fact that she had lived in a difficult marriage and now “this” was happening to her. She felt horrible for having these feelings because she didn’t like feeling this way. She also dealt with an obsessive compulsive disorder (OCD) regarding cleanliness that made life miserable for herself and those around her. This presented problems for the family in trying to care for her because as the cancer got worse, she needed more physical care but the OCD presented a barrier not easily maneuvered around, leaving family members exhausted and frustrated. The family felt like they could give her much better care but were prevented from doing so. This was extremely difficult for her family. When the patient died, the relationships were very good, but the family had spent a

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lot of time talking about what all of this meant to them. They were able to talk about the positives and negatives and realized that they did the best they could given the imposed limitiations by the patient. These actual patient stories were presented to exemplify how the patient’s meaning in illness affects the meaning held or created by family members. Differing or divergent meanings can be detrimental in a relationship, or they can be used to strengthen it, thereby increasing the quality of time left together. That is not to imply that the patient is responsible for the meaning created by family members; rather, they are responsible for how one affects the other. Germino, Fife, and Funk 23 suggest that the goal is not merely converging meanings within the patient–family dyad but, rather, encouraging a sharing of individual meanings so that all can learn, and relationships can be deepened and strengthened. There are many issues that family caregivers face in caring for a loved one nearing the end of life. They are discussed at length in the literature. There is one issue, however, that warrants more attention: the loss of dreams. The loss of dreams for a future with the person is in addition to the loss of the person. It is the loss of the way one used to imagine life and how it would have been with that person. It is the loss of an emotional image of oneself and the abandonment of chosen plans for the future and what might have been.24 For a child and the surviving parent, those losses of dreams will be played out each time Mother’s or Father’s Day arrives and important life-cycle events, such as graduations, weddings, or the birth of the first grandchild. As her mother lay dying, one child expressed that loss in the simple statement, “Mommy, you won’t be here for my birthday!” The mother and child wept, holding and comforting each other. Nothing could change the loss, but the comforting would remain forever. The loss of dreams is an internal process, spiritual for some, and seldom recognized by others as needing processing.14,24–26 Nurses have a wonderful opportunity at this point to verbally recognize the family caregivers’ loss of dreams and to encourage them in their search to find meaning in the loss. The ability to transcend and connect to God or something greater than one’s self helps the healing process.

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Transcendence: Strength for the Journey That Lies Ahead Transcendence is defined as lying beyond the ordinary range of perception; being above and independent of the material universe. The Latin root is trans-, “from or beyond,” plus scandere, “to climb.”2 The images are many: the man in a pit climbing his way out one handhold at a time; the story of Job as he endured one defeat after another and yet found meaning; the climber who reaches the mountaintop, becoming closer to the heavens while still having the connection to the earth; or the dying patient who, in peace, is already seeing

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into another reality. The ability to transcend truly is a gift of the human spirit and often comes after a long struggle and out of suffering. It is often unclear which comes first—does meaning open the door for transcendence, or, quite the opposite, does the act of transcendence bring the meaning? More than likely, it is an intimate dance between the two, one fueling the other. In the Buddhist tradition, suffering and being are a totality, and integrating suffering in this light becomes an act of transcendence.27 Transcendence of suffering can also be accomplished by viewing it as reparation for sins while still living—preparing the way for eternity, as in the Islamic tradition. In other traditions, transcendence is often relationship-based, the connection to others, and sometimes to a higher power.3 For example, the Christian seeing Christ on the cross connects one to the relationship and endurance of God and the reality that suffering is a part of life. For others, it is finding meaning in relating to others, even the act of caring for others. And for some, that relationship may be with the Earth, a sense of stewardship and leaving the environment a better place. It is rare that patients reach a state of transcendence and remain there through their dying. Instead, for most it is a process in which there are moments when they reach a sense of expansion that supports them in facing death. The existential crisis does not rule, because one can frame the relationship beyond death; for example, “I will remain in their hearts and memories forever, I will live on through my children, or my spirit will live beyond my limited physical state.”

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Nursing Interventions If one returns to the root word of meaning, maenan, or “to tell of,” this concept can be the guide that directs the nurse toward interventions. Given the nature of this work, interventions may not be the true representation of what is needed. For intervention implies action that the nurse has an answer and she can direct the course of care by intervening. It is defined as “To come, appear, or lie between two things. To come in or between so as to hinder or alter an action.”2 But finding meaning is process-oriented; while finely honed psychosocial skills and knowledge can be immensely helpful, there is no bag of tricks. One example would be of a chaplain who walks in the room and relies only on offering prayer to the patient, preventing any real discourse or relationship-building. The patient’s personhood has been diminished, and potentially, more harm than good has been done. So let us revisit “to tell of.” What is required of the professional who enters into the healing dimension of a patient’s suffering and search for meaning? It would seem that respect may be the starting point—respect for that individual’s way of experiencing suffering and attempts of making sense of the illness. Second, allow for an environment and time for the telling. Even as this is written, the sighs of frustration are heard, “We have no time!” If nursing fails at this, if nurses

turn their backs on their intrinsic promise to alleviate suffering, then nursing can no longer exist. Instead, the nurse becomes simply the technician and the scheduler—the nurse becomes a part of the problem. She has violated the Code for Nurses that states, “Nursing care is directed toward the prevention and relief of the suffering commonly associated with the dying process . . . and emphasizes human contact.”28 If patients in the midst of suffering receive the message, nonverbally or directly, that there is no time, energy, or compassion, they will, in their vulnerability, withdraw or become more needy. Their alienation becomes complete. On the other hand, if privacy and a moment of honor and focused attention are provided, this allows for the tears to spill or the anguish to be spoken. Then the alienation is broken, and the opportunity for healing one dimension is begun. The terminally ill are a vulnerable population. They die and do not complete patient satisfaction surveys; their grievances and their stories die with them. But the violation does not, for each nurse now holds that violation, as does society as a whole. The wound begets wounds, and the nurse sinks further into the protected and unavailable approach, alienated. The work holds no rewards, only endless days and demands. He or She has nothing left to give. The patient and family are ultimately abandoned. In the work of Kahn and Steeves,29 one finds a model for the nurse’s role in psychosocial processes and suffering. It represents the dynamic relationship of caring, acted out in caregiving as well as in the patient’s coping, which transform each other. For the nurse to provide this level of caregiving, he/she must understand the obstructions that may interfere. It is essential that the nurse undergo his/her own journey, visiting the intense emotions around the dying process and the act of witnessing suffering. We can serve the suffering person best if we ourselves are willing to be transformed through the process of our own grief as well as by the grief of others.30 Presence may, in fact, be our greatest gift to these patients and their families. Still, imagine charting or accounting for presence on an acuity system! Presence “transcends role obligations and acknowledges the vulnerable humanness of us all . . . to be present means to unconceal, to be aware of tone of voice, eye contact, affect, and body language, to be in tune with the patient’s messages.”30 Presence provides confirmation, nurturing, and compassion and is an essential transcendent act. Touch becomes one of the tools of presence. Used with sensitivity, it can be as simple as the holding of the hand or as powerful as the holding of the whole person. Sometimes, because of agitation or pain, direct touch becomes intrusive; even then touch can be invoked, by the touching of a pillow or the sheet or the offering of a cold cloth. Healing touch takes on another level of intention through the directing energy of prayer. If a key aspect of meaning is to tell, then one might be led to believe that the spoken word would be imperative. However, over and over, it is silence that conveys the meaning of suffering, “a primitive form of existence that is without an effective voice and imprisoned in silence.” Compassionate listeners in respect and presence become mute themselves.30 They use the

Meaning in Illness most intuitive skills to carry the message. This may also be why other approaches that use symbols, metaphors, and the arts are the most potent in helping the patient to communicate and make sense of meaning. The arts, whether writing, music, or visual arts, often help the patient not only gain new insight but convey that meaning to others. There are many levels on which this is accomplished. Whether it is done passively, through reading poetry, listening to music, or viewing paintings, or actively through creation, thoughts can be inspired, feelings moved, and the sense of connectedness and being understood can evolve. What once was ubiquitous can now be seen outside of one’s soul, as feelings become tangible. It can be relational, because the act of creation can link one to the creator, or it can downplay the role of dependency, as the ill one now cares for others with a legacy of creational gifts.31 Meditation is another act of transcendence that can be extremely powerful for the dying.32,33 Even those who have never experienced a meditational state can find that this new world in many ways links them to living and dying. The relaxation response allows the anxious patient to escape into a meditative state, experiencing an element of control while relinquishing control. Many patients describe it as a floating state, a time of great peace and calm. Some who have never had such an experience can find the first time frightening, as the existential crisis, quelled so well by boundaries, is no longer confined. Most, given a trusting and safe teacher, will find that meditation will serve them well. The meditation can be in the form of prayer, guided imagery, breathing techniques, or mantras. Prayer is well-documented in the literature34,35 as having meaning for patients and families; not only does it connect one to God, but it also again becomes a relational connection to others. Knowing that one is prayed for not only by those close at hand but by strangers, communities, and those at a great distance can be deeply nurturing. Often forgotten is the role in which the patient can be empowered, that of praying for others. One of the authors experienced her patient’s prayers for her as the tables were turned, and the patient became the healer. The patient suddenly lost the sense of worthlessness and glowed with joy. Leaving a legacy may be one of the most concrete ways for patients to find meaning in this last stage of their lives.36 It most often requires the mastering of the existential challenges, in which patients know that death is at hand and choose to direct their course and what they leave behind. For some patients, that will mean going out as warriors, fighting until the end; for others, it will mean end-of-life planning that focuses on quality of life. Some patients will design their funerals, using rituals and readings that reveal their values and messages for others. Others will create videos, write letters, or distribute their wealth in meaningful ways. Parents who are leaving young children sometimes have the greatest difficulty with this aspect. On one hand, the feelings of horror at “abandoning” their children are so strong that they have great difficulty facing their death. Still, there is often a part of them that has this need to leave a legacy. The tug-of-war

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between these two willful emotions tends to leave only short windows of opportunity to prepare. The extreme can be observed in the young father who began to push his toddler away, using excuses for the distancing. It was only after a trusting relationship had been established with one of the authors that she could help him to see how this protective maneuver was, in fact, harming the child. The father needed not only to see what he was doing but to see how his love would help the child and how others would be there for the child and wife in their pain and grief. With relief, the father reconnected to his young son, creating living memories and a lifetime protection of love. Another courageous parent anticipating the missed birthdays, bought cards, and wrote a note in each one, so that the child would be touched not only by the individual messages, but the knowledge that the parent found a way to be there for him with each new year. A mother wrote a note for her young daughter so that if she should ever marry, she would have a gift to be opened on her wedding day. The note described the mother’s love, wisdom about marriage, and her daughter’s specialness, already known through a mother’s eyes. An elderly person may write or tape an autobiography or even record the family tree lest it be lost with the passing of a generation. The nurse can often be the one who inspires these acts, but it must always be done with great care so as not to instill a sense of “should” or “must,” which would add yet another burden. Helping patients to reframe hope is another important intervention. Recently, Dr. William Brietbart, Chief of the Psychiatry Services at Memorial Sloan-Kettering Cancer Center in New York City, designed and conducted research on a meaning-centered psychotherapeutic intervention to help terminally ill patients with cancer maintain hope and meaning as they face the end of their lives.37 This research was inspired by the works of Dr. Victor Frankl, a psychiatrist and Holocaust survivor. Cancer patients attended an 8-week, group-focused, standardized course of experiential exercises that addressed constructs of despair at the end of life, such as hopelessness, depression, loss of meaning, suicidal ideation, and desire for a hastened death. The study revealed that the patient’s spiritual well-being, loss of meaning in part, was more highly correlated to the components that made up despair at the end of life than either depression or hopelessness alone. As a result, if the patient could manipulate or reframe his/her sense of meaning and spiritual well-being, this would positively affect the foundational elements of despair at the end of life. When patients are able to do this, their hope is sustained because they have been able to reframe the focus of their hope.

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The Health-Care Professional Although the health-care professional can be educated about death and grieving, like the patient and family, it is in living out the experience that understanding is reached. It is a

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developmental process, and given the demands of the work, the nurse is at great risk for turning away from her feelings. There is often little mentoring that accompanies the first deaths, let alone formal debriefing or counseling. How can it be that we leave such important learning to chance? And what about cumulative losses and the years of witnessing suffering? Healthcare needs healing rituals for all of its health-care professionals to support and guide them in this work. Individual institutions can develop programs that address these needs. At one institution, “Teas for the Soul” (sponsored by the Pastoral Care Department) provide respite in the workplace on a regular basis, as well as after difficult deaths or traumas. A cart with cookies and tea, as well as soft music, are provided as physical nurturance and nurture the emotions of the staff and legitimize the need to come together in support. Another support is a renewal program, the “Circle of Caring.” This retreat supports health-care professionals from a variety of institutions in a weekend of self-care that integrates spirituality, the arts, and community building. The element of suffering is a focal point for a small-group process that unburdens cumulative effects of the work and teaches skills and rituals for coping with the ongoing demands. Clearly, there is much that can be done in this area to support nurses individually and to support organizations. There are many opportunities for assisting nurses in their own search for meaning and for enhancing the care of patients and families. When the nurse takes the time to find meaning in this work, he/she is finding a health restorative practice that will protect him/her personally and professionally. Like the patient, he/she will need to choose this journey and find pathways that foster and challenge him/her. As long as we can love each other, And remember the feeling of love we had, We can die without ever really going away. All the love you created is still there. All the memories are still there. You live on – in the hearts of everyone you have Touched and nurtured while you were here. —Morrie Schwartz38

8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21.

22.

23. 24. 25. 26. 27.

28.

REFERENCES 29. 1. Taylor EJ. Whys and wherefores: Adult patient perspectives of the meaning of cancer. Semin Oncol Nurs 1995;11(1):32–40. 2. Dictionary. The American Heritage Dictionary. Boston, MA: Houghton Mifflin, 2008. 3. Frankl VE. Man’s Search for Meaning: An Introduction to Logotherapy. Boston: Beacon, 1959. 4. Cassell EJ. The relationship between pain and suffering. Adv Pain Res Ther 1989;11:61–70. 5. Personal. Personal interview; May 22, 2007. 6. Koestenbaum P. Is There an Answer to Death? Englewood Cliffs, NJ: Prentice-Hall, 1976. 7. Puchalski C. Spirituality. In Berger A, Shuster J, Roenn JV, eds. Principles and Practice of Palliative Care and Supportive

30. 31. 32. 33. 34. 35.

Oncology (3rd ed). Philadelphia, PA: Lippincott Williams & Wilkins; 2007:633–644. Vachon ML. Meaning, spirituality, and wellness in cancer survivors. Semin Oncol Nurs 2008;24(3):218–225. Concordance. Strong’s Exhaustive Concordance. Peabody, MA: Hendrickson Publishers, 2007. Ersek M, Ferrell BR. Providing relief from cancer pain by assisting in the search for meaning. J Palliat Care 1994;10(4):15–22. Tillich P. The Courage To Be. New Haven, CT: Yale University Press, 1952. Personal communication; May 22, 2007. Benson H. Timeless Healing. New York, NY: Simon and Schuster, 1997. Putnam C. Personal Communication; September 26, 1999. O’Donohue J. Eternal Echoes. New York, NY: HarperCollins Publishers, 1999. Bible. New American Standard Bible. Grand Rapids, MI: World Publishing, 1995. Sittser G. A Grace Disguised. Grand Rapids, MI: Zondervan Publishing House, 1995. Cross SJ. Dark Night of the Sourl. Kila, MT: Kessinger Publishing Company, 1959. Kritek P. Reflections on Healing. Boston, MA: Jones and Bartlett Publishers, 2003. Kearney M. Mortally Wounded. New York, NY: Simon and Schuster, 1996. Martins L. The silence of God: The absence of healing. In: Fundis GCaR, ed. Spiritual, Ethical and Pastoral Aspects of Death and Bereavement. Amityville, NY: Baywood Publishing Company; 1992:25–31. Pellegrino E, Thomasma D. The Christian Virtues in Medical Practice. Washington, DC: Georgetown University Press, 1996. Germino BB, Fife BL, Funk SG. Cancer and the partner relationship: What is its meaning? Semin Oncol Nurs 1995;11(1):43–50. Bowman T. Facing loss of dreams: A special kind of grief. Int J Palliat Nurs 1997;3(2):76–80. Garbarino J. The spiritual challenge of violent trauma. Am J Orthopsychiatry 1996;66(1):162–163. Rando TA. Treatment of Complicated Mourning. Champaign, IL: Research Press, 1993. Kallenberg K. Is there meaning in suffering? An external question in a new context. Paper presented at: Cancer Nursing Changing Frontiers, 1992, Vienna. ANA. American Nurses Association Code for Nurses with Interpretive Statements. Washington, DC: American Nurses Publishing, 2001. Kahn DL, Steeves RH. The significance of suffering in cancer care. Semin Oncol Nurs 1995;11(1):9–16. Byock I. When suffering persists. J Pall Care 1994;10(2):8–13. Bailey SS. The arts in spiritual care. Semin Oncol Nurs 1997;13(4):242–247. Baldacchino D, Draper P. Spiritual coping strategies: A review of the nursing research literature. J Adv Nurs 2001;34(6):833–841. Sellers SC. The spiritual care meanings of adults residing in the midwest. Nurs Sci Q 2001;14(3):239–248. Albaugh JA. Spirituality and life-threatening illness: A phenomenologic study. Oncol Nurs Forum 2003;30(4):593–598. Taylor EJ. Nurses caring for the spirit: Patients with cancer and family caregiver expectations. Oncol Nurs Forum 2003;30(4):585–590.

Meaning in Illness 36. Kaut K. Religion, spirituality, and existentialism near the end of life. Am Behav Sci 2002;46(2):220–234. 37. Breitbart W. Reframing hope: Meaning-centered care for patients near the end of life. Interview by Karen S. Heller. J Palliat Med 2003;6(6):979–988. 38. Albom M. Tuesdays With Morrie. New York, NY: Doubleday, 1997. 39. Yalom ID. Existential Psychotherapy. New York, NY: Basic Books, 1980. 40. Marris P. Loss and Change (2nd ed). London, England: Routledge and Kegan Paul, 1986. 41. Taylor SE. Adjustment to threatening events: A theory of cognitive adaptation. Am Psychol 1983;38:1161–1173. 42. O’Connor AP, Wicker CA, Germino BB. Understanding the cancer patient’s search for meaning. Cancer Nurs 1990;13(3):167–175. 43. Steeves RH, Kahn DL. Experience of meaning in suffering. Image J Nurs Sch 1987;19(3):114–116. 44. Ersek M. The process of maintaining hope in adults with leukemia undergoing bone marrow transplantation [Unpublished doctoral dissertation]. Seattle, University of Washington; 1991.

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45. Gotay CC. Why me? Attributions and adjustment by cancer patients and their mates at two stages in the disease process. Soc Sci Med 1985;20(8):825–831. 46. Haberman MR. Living with leukemia: The personal meaning attributed to illness and treatment by adults undergoing bone marrow transplantation [Unpublished doctoral dissertation]. Seattle, University of Washington, 1987. 47. Chrisman H. The health seeking process: An approach to the natural history of illness. Cult Med Psychiatry 1977;1(4):351–377. 48. Ferrell BR, Taylor EJ, Sattler GR, Fowler M, Cheyney BL. Searching for the meaning of pain: Cancer patients’, caregivers’, and nurses’ perspectives. Cancer Pract 1993;1(3):185–194. 49. Barkwell DP. Ascribing meaning: A critical factor in coping and pain attenuation in patients with cancer-related pain. J Palliat Care 1991;7(3):5–10. 50. Lipowski Z. Physical illness, the individual and their coping processes. International J Psychiatr Med 1970;1(9):101. 51. Haberman MR. Psychosocial aspects of bone marrow transplantation. Semin Oncol Nurs 1988;4(1):55–59.


V Special Patient Populations

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Terri L. Maxwell

Caring for Those with Chronic Illness I have had COPD for 20 years but I have been living with COPD. Now I’m dying with COPD. I just don’t want to suffocate. I think this is worse than cancer.—48-year-old woman

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Key Points Patients with advanced chronic conditions frequently have an uncertain illness trajectory and many live for years in chronically poor health marked by declining functional status and intermittent disease exacerbations. Communication about end-of-life issues is particularly challenging in the chronically ill population because of prognostic uncertainty, poor understanding among patient and family members about the terminal nature of the condition, and lack of recognition of the benefits of palliative or hospice care. Patients with chronic conditions experience myriad symptoms that diminish the quality of life and require a combination of pharmacological and nonpharmacological approaches. The provision of hospice and palliative care should be based on patient need, especially with regards to symptom management and declining functional status. Individuals with chronic progressive illness and their families benefit from an interdisciplinary palliative approach to care, and as the disease advances, hospice care should be considered.

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Introduction Although hospice programs were initally developed to care for cancer patients, cancer represents less than a quarter of all deaths in the United States.1 Individuals suffering from lifelimiting illnesses, such as end-stage cardiac or pulmonary disease, advanced dementia, and other neurological conditions, also need palliative care. For many with progressive chronic illness, the dying process has become so prolonged that it is sometimes viewed as a distinct stage of life.2 The health-care system and society are confronted with the challenge of providing cost-effective, high-quality, compassionate care for the rising numbers of individuals whose deaths occur after months of gradual debilitation resulting from chronic illness. Recognizing the growing needs among those with chronic illness and their families, palliative care programs have sprung up across the county, and the hospice industry has gone beyond primarily caring for those with cancer to include all patients with life-limiting illness. The number of patients enrolling in hospice with non-cancer diagnoses has been steadily climbing; in 2007, non-cancer diagnoses accounted for more than half of all hospice admissions (58.7).3 The top five non-cancer diagnoses in hospice as a percent of admissions are heart disease (11.8), debility unspecified (11.2), dementia (10.1), and lung disease/chronic obstructive lung disease (7.9). Despite the growing number of patients with non-cancer conditions accessing hospice and palliative care, there are numerous barriers leading to their underutilization among the chronic care population. According to Medicare and Medicaid requirements for admission to hospice, patients must have a diagnosed terminal illness with a limited life expectancy and written certification by a physician of a life expectancy of 6 months or less. However, determining a 6-month prognosis or determining when someone is 687

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terminal is difficult for those with life-limiting diseases such as end-stage cardiac, hepatic, pulmonary, renal, or neurological diseases. Individuals with these conditions have prognoses that are commonly much more difficult to predict than for those with advanced cancer. Patients with cancer generally experience a more precipitous decline in the weeks and months before their death, whereas those with non-cancer conditions often have a much less predictable course and may have a long period of survival, including survival with a reasonable quality of life. Individuals with non-cancer diseases also commonly die suddenly or unexpectedly from other causes, such as multiple organ failure or persistent recurrent infection, rather than directly from their primary diagnosis. Also, some elderly persons have multiple medical problems, none of which individually amount to a terminal diagnosis but, when taken together, create a terminal condition that is difficult to prognosticate or identify as in need of hospice or palliative care. Recognizing these challenges, the National Hospice and Palliative Care Organization (NHPCO) published medical guidelines for determining prognosis in selected non-cancer diseases to aid clinicians with prognostication.4 These guidelines are based on the premise that the prognosis of terminal illness depends on clinical judgment combined with the following: objective assessment of the natural history of the disease; treatments and response to date; performance status; thorough physical assessment, including neurological and orthopedic; and knowledge of the psychological and sociological factors of the patient, family, and physician. Alternatively, others2 have suggested using the question “Do you think the patient is likely to die within the next year?” as a marker for determining if palliative or hospice care might be appropriate. This chapter reviews the palliative management of common non-cancer conditions.

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Heart Failure Heart failure is a clinical syndrome that results from an underlying disease that causes structural or functional damage to the heart so that the heart’s pumping function grows weaker and the heart is unable to deliver a sufficient supply of oxygenated blood to meet the body’s demands. It is estimated that between 2 and 3 million Americans have heart failure with about 400,000 new cases annually,5 and the numbers are rising among the growing population of elderly persons with comorbid conditions. Among elderly patients admitted to the hospital for heart failure, 1-year mortality is over 60, which is higher than with most cancers.6 Heart failure has a devastating effect on patients’ quality of life and functional status, yet both hospice and palliative care are underutilized in this population. The American College of Cardiology (ACC) and the American Heart Association (AHA) published a new staging system for heart failure in 20017 (Table 36–1). The first

Table 36–1 ACC/AHA Classification System7 Stage A: High risk for heart failure, no structural disorder present, no symptoms Stage B: Structural heart disorder present, no symptoms Stage C: Current or previous heart failure symptoms associated with structural heart disease Stage D: Advanced heart failure with symptoms occurring at rest despite maximal medical therapy

two stages (A and B) identify persons at risk to develop heart failure. Stage C designates patients with current or previous symptoms of heart failure that represent the bulk of the heart failure population. Stage D denotes persons with advanced heart failure whose symptoms progress despite maximal medical therapy with diuretics, angiotensin-converting enzyme (ACE) inhibitors, β-blockers, and possibly digoxin. Stage D patients should be evaluated for specialized therapies such as cardiac transplantation, inotropic infusions, mechanical circulatory support, and/or palliative or hospice care.7 Heart failure is a consequence of cardiac damage from a number of underlying diseases, such as coronary artery disease, myocardial infarction, hypertension, dilated cardiomyopathy, valvular heart disease, and so forth. The heart attempts to compensate for the damage through a process called remodeling. Remodeling leads to enlargement of the heart and/or hypertrophy of the ventricles, resulting in decreased cardiac output and an increase in afterload. The abnormal loading induces dilatation of the ventricles that changes the shape of the ventricle, decreasing the pumping ability of the heart and contributing to symptoms despite treatment.8 Heart failure can be characterized based on ventricular involvement. Systolic dysfunction is the most common, whereas diastolic dysfunction is estimated to occur in 20 to 50 of cases.9 Patients with preserved systolic function have normal ejection fractions but have abnormal ventricular fi lling, leading to pulmonary congestion, dyspnea, and symptoms of anorexia, fatigue, and depression; whereas those with right-sided (systolic) dysfunction present with symptoms of weight gain, edema, dsypnea, and early satiety. Persons with diastolic heart failure are typically elderly, generally female, usually obese, and have hypertension and diabetes.9 Patients with heart failure have an uncertain illness trajectory, and many live for years in chronically poor health marked by declining functional status and unpredictable episodes of heart failure exacerbations. Although models have been developed to predict mortality in patients with advanced heart disease, they lack specificity, making determining prognosis very difficult. This variability in prognosis was illustrated by the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), in which over half of those with heart failure had an estimated 6-month survival prognosis within 3 days of

Caring for Those with Chronic Illness

Table 36–2 Symptoms of Advanced Heart Failure Fatigue/weakness Decreased appetite Shortness of breath Lower extremity edema Ascites Cough

Pain Depressed mood Anxiety Difficulty sleeping Decreased sexual interest

death.10 In addition, patients with heart failure have an array of treatments available, and they become accustomed to good treatment responses to exacerbations, making the decision to accept a palliative approach only more difficult.11 Because of these challenges, patients with heart failure frequently lack access to specialist palliative care services and may end up being discharged alive from hospice. Persons with advanced heart failure usually have a number of disabling symptoms. Complications of heart failure include pulmonary congestion, evidenced by lung symptoms, congestive heart failure, cor pulmonale, arrhythmias, and cardiac arrest. Common symptoms of advanced heart failure are listed in Table 36–2. The SUPPORT described symptoms in patients hospitalized with heart failure at the end of life. Severe dsypnea was experienced by 63 of patients, and 41 had severe pain within the last 3 days of life. During the last month of life, 70 of patients with heart failure perceived their quality of life as poor.10

Management There is an array of pharmacological and nonpharmacological therapy options for heart failure. The primary goals of therapy are to improve survival, slow disease progression, minimize risk factors, and reduce symptoms. Early recognition of signs and symptoms of heart failure can decrease hospitalizations and improve quality of life. The 2005 ACC/AHA guidelines outline treatment options based on heart failure stage.8 Patients with structural disease and previous or current symptoms (stage C) should be prescribed ACE inhibitors and β-blockers, diruretics, digoxin, sodium-restricted diet, and exercise as appropriate. ACE inhibitors and β-blockers have demonstrated improvements in survival, morbidity, ejection fraction, remodeling, quality of life, rate of hospitalization, and incidence of sudden death. They are generally recommended for all patients, even those entering hospice.9,11 Diuretics help to control volume overload and enhance urinary sodium excretion. Loop diuretics, such as furosemide, are generally the drugs of choice. Digoxin has been shown to reduce the risk of heart failure-associated hospitalizations. Aldosterone antagonists, such as spironolactone, have demonstrated improvements in symptoms and reductions in death and hospitalization in some patients with advanced heart failure. According to ACC/AHA guidelines, patients with advanced disease should be considered

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for cardiac resynchronization devices such as implantable cardioverter-defibrillators (ICDs) to prevent sudden death from conduction defects, inotropic therapy to manage refractory symptoms, and ventricular assist devices (VADs), or cardiac transplantation as indicated.8 Patient education is also a central component of heart failure management. The importance of adhering to their medication regimen should be underscored with all patients. They should be placed on a moderate sodium-restricted diet, and some patients with advanced disease may benefit from restricting fluids. Patients should be encouraged to monitor their weight daily so that volume changes can be identified before symptoms occur. Patients should also be taught to avoid nonsteroidal anti-inflammatory agents (NSAIDs). NSAIDs worsen or exacerbate heart failure symptoms and are associated with heart failure hospitalizations.12

Symptom Management Symptom management in patients with advanced heart disease begins with optimal treatment with ACE inhibitors or angiotensin- receptor blockers (ARBs) and β-blockers, as described above.11 Less-than-optimal treatment may result in premature referrals to hospice or palliative care programs. Pain is commonly experienced by those with advanced heart disease because of immobility, edema, or ischemia. Patients may also have comorbidities such as arthritis, diabetic neuropathy, or other conditions that cause discomfort. Nitrates and opioids are indicated for anginal pain. As described earlier, NSAIDs should be avoided because of the possibility of worsening kidney function and subsequent fluid retention. Other than avoiding NSAIDs, nonopioids and opioids should be prescribed according to guidelines used for other chronic conditions. Dyspnea is a prominent symptom among those with severe heart failure (see Chapter 14). Nonpharmacological therapies such as creating a calm environment, employing techniques to manage anxiety, and using a fan to improve air circulation may reduce symptoms of dyspnea. Supplemental oxygen therapy may be helpful in those with ischemic symptoms but does not necessarily decrease the sensation of breathlessness among non-hypoxemic patients and is associated with hemodynamic deterioration in severe heart failure.13 The primary treatment of dyspnea involves managing fluid status with cardiac medications. Oral and parenteral opioids have demonstrated substantial benefit in reducing the feeling of breathlessness in patients with advanced disease of any cause,14 but they are often overlooked for use in those with heart failure. In fact, opioids should be considered a first-line therapy for those with advanced heart disease as they have been proven safe and effective.15 Although the exact mechanism by which opioids alleviate dyspnea is unknown, one popular theory is that they decrease respiratory distress by altering the perception of breathlessness, as well as by decreasing ventilatory response to declining oxygen and rising CO2 levels. Contrary to popular belief, opioids

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do not improve dyspnea through inhibition of the respiratory drive; in fact, opioids improve dyspnea without causing significant deterioration in respiratory function.16 Although the efficacy of opioids in managing dyspnea has been demonstrated in clinical studies, the optimal dosing and route of administration is highly debated. Most clinicians agree that it is best to initiate therapy with a low dose and increase the dose slowly as needed, because respiratory drive suppression can occur if serum opioid levels rise quickly. Morphine is the opioid most studied in the treatment of dyspnea; other opioids, such as hydromorphone or codeine, are also effective. The usual dose of morphine in the opioid-naïve patient is 5 mg orally (preferred route) every 4 hours, which can be titrated upward in 25- to 50-increments until symptoms are controlled.17 Nebulized morphine has been used to relieve dyspnea with some success, but at this time, evidence to support its use is weak and it should not be used in place of oral or parenteral dosing.14 If dyspnea causes anxiety, the addition of a short-acting benzodiazepine such as lorazepam may be beneficial. Benzodiazepines may also help manage symptoms of anxiety or insomnia commonly experienced by patients with heart failure. Depression is also a common but frequently unrecognized comorbidity among those with advanced heart failure. Depression can be treated with selective serotonin reuptake inhibitors (SSRIs); however, they should be carefully titrated, as they can elevate blood pressure and worsen tachycardia. Tricyclic antidepressants should be avoided because they are poorly tolerated in the elderly and have negative effects on cardiac rhythms. Fatigue, often accompanied by depression, can have a profound effect on quality of life. Fatigue usually results from the heart failure itself, although the clinician should carefully assess for reversible causes or the need for more diuretic. Patients should be encouraged to be as active as possible and to reset goals of physical activity to accommodate changes in energy levels. Patients with advanced heart failure frequently experience early satiety and nausea resulting from pressure from an enlarged, congested liver or as a result of gastric stasis. Patients with a congested liver should be treated with a loop diuretic or spironolactone and may require inotropic support. Metoclopramide may be effective in patients with gastroparesis. Patients may also benefit from antiemetics such as haloperidol or procholoperazine.

Specialized Interventions for Refractory Heart Failure Intotropic and vasoactive agents such as neosynephrine, dobutamine, or milrinone work by forcing the contractility of the myocardium, thereby improving patient symptoms. They are frequently initiated with the expectation that brief support during a period of decompensation will enhance diuresis and accelerate hospital discharge. However, some patients cannot be weaned without clinical deterioration and progressive

renal dysfunction. Unfortunately, there are no approved oral versions of inotropic agents and the routine use of intermittent inotropic infusions administered in outpatient clinics has not been supported by clinical trials,18 and survival on home inotropic infusions is poor.19 Symptom improvement associated with the provision of inotropic therapy is believed to result primarily from the increased clinical contact that could be accomplished in less resource intensive ways. Most hospices do not support the use of inotropic therapy because of cost considerations.11 Implantable cardioverter-defibrillators (ICDs) are implanted to prevent sudden cardiac death. The mortality benefit of these devices has been demonstrated by a number of clinical trials.20 ICDs do not slow progression of heart failure, so increasing numbers of patients are approaching end of life with these devices in place and are at risk to have painful shocks delivered during the dying process. Therefore, discussion of ICD deactivation should happen when the device is placed; unfortunately, this rarely occurs.21 Fewer than 5 of patients with advanced heart failure are eligible for cardiac transplantation, which is partially limited by the number of organs available.19 Some patients awaiting transplantation, or select patients who are ineligible or choose not to undergo transplant, may opt for a left VAD. A VAD is a surgically implanted mechanical pump to improve ventricular functions. Although originally used as a bridge to transplantation, now that VADs are more compact and portable, they are increasingly used as destination therapy for patients with end-stage heart disease.22 Despite increases in survival, the morbidity and mortality associated with the use of a VAD is high, mainly because of infection or mechanical failure of the device.23 Before placing the device, clinicians should discuss scenarios with the patient and family to determine under what circumstances they would want the device deactivated.24

Advance Care Planning/Communication Challenges There is also a notable lack of advanced care planning and dialogue between heart failure patients and their providers regarding end-of-life care. Communication is particularly challenging prognostic uncertainty because of the unpredictable nature of the disease trajectory, poor understanding among patient and family members about the disease itself, and lack of recognition that heart failure is a terminal condition. To enhance end-of-life decision making and the provision of palliative care, the 1995 ACC/AHA practice guidelines recommend: (a) ongoing patient and family education regarding prognosis for functional capacity and survival: (b) patient and family education about options for formulating and implementing advanced directives; (c) discussion regarding the option of inactivating ICDs; (d) continuity of medical care between inpatient and outpatient settings; (e) components of hospice care to relieve suffering, including opiates; and (f) examination of and work toward improving approaches to palliative care.8


Hospice Eligibility Criteria and Referral Hospice is underutilized by patients with advanced heart failure for a number of reasons. The inability to predict actual time to death and the patient’s preference for resuscitation orders compared to cancer patients are important barriers to hospice referral. Physicians may be reluctant to engage in end-of-life discussions with their patients or may lack the skills to do so. Furthermore, there is still a misconception among many health-care providers that hospice care is for cancer patients and they are unaware of the benefits of hospice for patients with heart failure.25 Although helpful, NHPCO guidelines for determining hospice eligibility for patients with heart failure do not adequately predict short-term prognosis, so patients may be on hospice service for a long time.26 It is important to remember that those who stabilize while on hospice care can be discharged and readmitted when their condition deteriorates. In addition to hospice, interdisciplinary palliative care should be more available to patients during hospitalization and thereafter. Doing so may improve quality-of-life outcomes for patients and families and reduce hospitalizations and costs.

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Table 36–3 Stages of COPD Stage I: Mild COPD: FEV1/FVC < 0.70; FEV1 ≥ 80 predicted. Patient unaware lung function is abnormal. Stage II: Moderate COPD: FEV1/FVC < 0.70; 50 ≤ FEV1 < 80 predicted. Patient typically seeks medical attention because of pulmonary symptoms. Stage III: Severe COPD: FEV1/FVC < 0.70; 30 ≤ FEV1 < 50 predicted. Greater shortness of breath, reduced exercise tolerance, decreased quality of life. Stage IV: Very severe COPD: FEV1/FVC < 0.70; 30 ≤ FEV1 < 50 predicted plus the presence of chronic respiratory failure. May have signs of cor pulmonale. Source: Adapted from GOLD Guidelines29.

to right ventricular hypertrophy and cor pulmonale (rightsided heart failure). In addition to respiratory symptoms, persons with COPD frequently have systemic features such as weight loss and skeletal muscle wasting and are at risk for osteoporosis, myocardial infarction, respiratory infection, depression, sleep disorders, diabetes, and glaucoma.29

Chronic Obstructive Pulmonary Disease

Management

Chronic Obstructive Pulmonary Disease (COPD) is a respiratory disorder characterized by chronic airway obstruction and lung hyperinflation resulting from chronic bronchitis and emphysema. During the last 30 years, the death rate for COPD has doubled. 27 It is the fourth leading cause of chronic morbidity and mortality in the world, largely as a result of the cumulative exposure to tobacco smoke.28 From COPD increases with age and occurs more often in men, although death rates for women have been rising since the 1970s. COPD is a progressive illness, and even with treatment, lung function generally worsens over time. The severity of COPD is based on the patient’s level of symptoms, severity of spirometric abnormality, and the presence of comorbidities than can lead to complications. The Global Initiative for Chronic Obstructive Lung Disease (GOLD) guidelines describe four stages of COPD characterized by worsening airflow limitation (Table 36–3).29

The primary goals of COPD management are to relieve symptoms, ameliorate disease progression, improve exercise tolerance and health status, and prevent and treat complications and disease exacerbations. Treatment varies based on the impact of symptoms on the patient’s quality of life and degree of disability. The comprehensive management of COPD consists of a combination of pharmacotherapeutic and non-pharmacotherapeutic interventions, although it should be noted that none of the existing therapies have been shown to modify the long-term decline in lung function associated with COPD.29 Patients should be counseled to stop smoking and to monitor their symptoms for signs of exacerbation. Nonpharmacological therapies include pulmonary rehabilitation/exercise training as tolerated and nutritional counseling. Patients with very severe (stage IV) disease may benefit from oxygen therapy, which has been shown to increase survival and may prevent progression of pulmonary hypertension.30 Oxygen therapy also improves alertness and may have positive effects on quality of life, including mood. The GOLD guidelines recommend oxygen treatment for at least 15 hours or more per day provided from a fi xed oxygen concentrator with piping to allow the patient to move throughout their home.29 In patients with advanced COPD, various medications are used to prevent and control symptoms and to reduce the frequency and severity of exacerbations. These medications are generally added as the disease and symptoms worsen. By the time a patient’s disease is advanced, they will likely be prescribed a long-acting and short-acting bronchodilator such as albuterol; anticholinergics such as ipratropium bromide or tiotropium;

Symptoms Reductions in airflow, as evidenced by declining FEV1 readings, primarily results from inflammation, fibrosis, and exudates in small airways. As air gets trapped, the lungs hyperinflate and alveoli are destroyed. Hyperinflation results in decreased inspiratory capacity and increased functional residual capacity, causing dyspnea. Gas exchange abnormalities bring about hypoxemia and rising CO2 levels. Some patients, especially those with chronic bronchitis, have a chronic productive cough. Patients with advanced COPD are at risk to develop pulmonary hypertension that may progress

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methylxanthines such as aminophylline or theophylline; and combination inhaled therapies such as formoterol/budesonide. Whereas regular treatment with inhaled glucocorticosteriods reduces exacerbations and improves health status, long-term treatment with oral corticosterioids is not recommended because of lack of benefit and high risk of adverse effects.29 Other pharmacological treatments include yearly inoculation with influenza vaccines and antitussives to control cough. Mucolytic agents and prophylactic, continuous use of antibiotics has not been shown to be effective; antibiotics should be reserved to treat infectious exacerbations and other bacterial infections only. Oral and parenteral opioids are used to treat dyspnea in patients with advanced COPD, but clinical trials are limited and study results are mixed. One small study of the administration of long-acting morphine for dyspnea actually worsened exercise tolerance, did not improve breathlessness, and was associated with adverse effects such as nausea, constipation, and drowsiness;31 whereas a larger, more adequately powered study by Abernethy and colleagues15 demonstrated improved dsypnea and sleep scores for those prescribed sustained release oral morphine . Nebulized opioids have not demonstrated a reduction in breathlessness in patients with COPD32 and should not be used in place of oral or parenteral routes. Anxiolytics may be helpful in managing anxiety that can accompany severe dyspnea. Decisions about the use of invasive ventilation are frequently based on the patient’s prognosis, which can be difficult to determine. In patients where invasive ventilation is not deemed to be in the best interest of the patient, noninvasive ventilation (NIV) is being used first line to treat acute respiratory failure among patients with COPD. NIV devices rhythmically blow air into the lungs through a mask attached over the nose and mouth. Whereas the benefits of NIV for acute exacerbations is known, its value among those with stage IV (very severe) COPD has not been demonstrated29 although it may have a time-limited role for some patients at the end of life.

End-of-life Issues Similarly to other chronic conditions, prognosis in patients with COPD is difficult to predict. The provision of palliative care should be based on patient need, especially with regards to symptom management and declining functional status. Pulmonologists and palliative care teams should work together to improve communication at the end of life, especially related to goals of care and advanced care planning. Hospice should be considered for stage IV patients who prefer a palliative approach to care.

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to sustain life. Patients with kidney function less than 10 of normal are considered to have ESRD, usually following a long history of chronic kidney failure.33 Diabetes and hypertension are the most common causes of ESRD, with AfricanAmericans disproportionately affected.34 The rising incidence of ESRD parallels an increase in the prevalence of and the rising median age of the dialysis population.35 The ESRD population is expected to grow to 650,000 by 2010. Patients with ESRD have a high percentage of comorbitities such as coronary artery disease, congestive heart failure, peripheral vascular disease, and malnutrition. Dialysis and kidney transplantation are the only treatments for ESRD. Signs of ESRD include oliguria, high BUN and serum creatinine levels, severe anemia, and electrolyte imbalances. Common symptoms include fatigue/lack of energy, drowsiness, numbness/tingling, dry mouth, pruritis, and pain. In addition to these physical symptoms, emotional symptoms include worrying, anxiety, feeling sad, and feeling irritable.36 The addition of other comordities heightens the symptom burden and makes prognosis even more uncertain. All anuric postdialysis patients die within days, but those who produce even small amounts of urine may have residual renal function that can enable them to live for weeks or, in rare cases, months. However, 6-month survival is extremely rare.

Palliative and Hospice Care Services Although palliative and hospice care have the potential to improve the quality of life of ESRD patients and their families, access to these services is limited. In fact, patients with kidney disease comprised only 2.6 of hospice admissions in 2007.3 The underutilization of hospice services by patients with ESRD has been attributed to the Medicare payment structure; however, it does not explain the underutilization of palliative care services among this group.37 Patients with ESRD who elect hospice are required to forgo dialysis treatment; however, patients receiving care for a terminal condition not related to ESRD may receive covered services under both the ESRD benefit and hospice benefit.38 All patients who are discontinuing dialysis for ESRD or those with ESRD who refuse to initiate dialysis should be considered for hospice. Over 60 of patients with advanced kidney disease die in the hospital.35 Recognizing the need for improved palliative care, some dialysis clinics and hospitals are developing palliative care initiatives with the goal of integrating palliative care into routine nephrology practice.39

Palliative Management The primary components of palliative care in ESRD are outlined in Table 36–4.

End-Stage Renal Disease Communication and Care Planning End-stage renal disease (ESRD) is the most feared consequence of kidney disease. ESRD results when kidney function deteriorates to the point where it is no longer adequate

Advance care planning is an important consideration in ESRD because patients are likely to face important treatment


Table 36–4 Components of Palliative Care in ESRD

Table 36–5 Guidelines for Discussing Dialysis Withdrawal41

Advance care planning Symptom management Psychosocial and spirtual support Ethical issues in dialysis decision-making

1. Identify patients who may benefit from withdrawal. a. Very limited prognosis b. Poor quality of life c. Pain unresponsive to treatment d. Progressive untreatable disease e. Dialysis technically difficult 2. Discuss goals of care with patient and family. 3. Discuss quality of life. 4. Discuss possible symptoms and their management. 5. Clarify that dialysis withdrawal is an option. 6. Reassure that it can result in a peaceful death. 7. Make recommendation to stop dialysis and request family support. 8. Provide reassurance that the decision is reversible.

Source: Adapted from Poppel et al. 2003.

decisions as their disease progresses, including potentially deciding to forego dialysis. Although most dialysis patients discuss their end-of-life wishes, far fewer complete advance directives.40 Similarly to others with progressive conditions, discussions of advance care planning should focus should on health states that the patient would deem unacceptable, rather than on treatment interventions. Withdrawal of Dialysis The goal of dialysis goes beyond life prolongation to include quality-of-life benefits. However, when the burdens associated with treatment outweigh the benefits or if dialysis is only serving to prolong a patient’s death, discontinuation of dialysis should be considered. Once considered a form of suicide, stopping dialysis is now an accepted practice with a sound ethical basis. Today, approximately 25 of patients with ESRD decide to withdraw dialysis.41 Patients and families who are considering stopping dialyisis should be informed that the average survival time following dialysis withdrawal is 8 to 10 days but, depending on reserve renal status, could be weeks.42 Table 36–5 describes guidelines for discussion about dialysis withdrawal. Uremic death is usually peaceful and is typically preceded by progressive encephalopathy. Symptoms that may be experienced in the last 24 hours of life include confusion/agitation, nausea, pain, anxiety, pruritis, and edema.43

Symptom Management Pain is a common and severe symptom in ESRD and is undertreated in 75 of patients.44 Pain should be managed similarly to other chronic conditions, but opioids that are metabolized by the kidneys such as morphine, propoxyphene, codeine, and meperidine should be avoided. Morphine use can lead to the accumulation of active metabolites that are neurotoxic, and chronic use can lead to myoclonus. Fentanyl and methadone are safe and effective in patients with renal insufficiency, whereas hydromorphone and oxycodone should be used with caution.45 Delirium resulting from uremic encephalopathy frequently manifests itself as mild confusion. Haloperidol is effective and will help to manage nausea and vomiting as well. Pruritis is treated with diphenhydramine or benzodiazepines, in addition to nonpharmacological approaches.

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Tube feedings and hydration should be avoided as they may contribute to peripheral edema and excessive secretions. Dyspnea should be managed with opioids, and anticholingeric medications such as atropine will help to control secretions.

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Alzheimer’s Disease/Dementia Alzheimer’s dementia is an irreversible, progressive brain disease that slowly destroys memory and thinking skills. Alzheimer’s disease accounts for approximately half of all dementias. Other types of dementia are listed in Table 36–6. Typical of other progressive chronic illnesses, the course of dementia is one of continuing gradual decline. The median survival after diagnosis of Alzheimer’s disease is 4 to 6 years.46 The incidence of Alzheimer’s disease is rising and it is now the courth leading cause of death in persons over age 65. Approximately 4.5 million people in the United States are estimated to have Alzheimer’s disease; by the year 2050, this number may reach 16 million.46 There are a number of causes of dementia, including neurodegenerative changes in the brain, strokes, head injuries, drugs, and nutritional deficiencies. In Alzheimer’s disease, abnormal protein deposits in the brain destroy cells that control mental functions and memory. Vascular dementia is caused by atherosclerosis in the brain, leading to multiple strokes. Lewy body dementias are caused by abnormal deposits of Lewy body protein in the brain. Patients with Lewy body dementia have symptoms similar to patients with Parkinson’s disease, including tremor and muscle rigidity, and are more likely to experience delirium and hallucinations. The diagnosis of dementia is not straightforward and is largely established by a combination of clinical findings and confirmed by physiological changes in the brain seen on MRI or on autopsy.

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Table 36–6 Dementia Subtypes and Prevalence

Table 36–7 Clinical Presentation of Severe Dementia

Alzheimer’s Disease 40–75 Cerebrovascular dementia 15–30 Lewy Body dementia 10–15 Frontotemporal dementia 75 Years 494.7 394.6 349.1 346.9 175.5 160.0 128.8 95.5 72.6 38.9

Source: Seeman et al. (1989), reference 212.

disabilities renders them more susceptible to the complications of new illnesses and their treatments. The presence of chronic medical conditions is associated with disability and increased health-care use, including institutionalization and hospitalization in the elderly (Table 38–1). Forty percent of community-dwelling adults older than 65 years report impairment in their daily activities secondary to chronic medical conditions.4 Sixteen percent of adults older than 65 years report impairment in walking, increasing to more than 32 in those older than 85 years. Comorbidity is highly prevalent in people over 65 years. In the United States, 49 of noninstitutionalized people over 60 years have two or more chronic conditions. Much higher percentages are seen in adults older than 65 years who are living in a nursing home or who are hospitalized.4–11 Between 1982 and 2004 there was a significant decline in the age-standardized prevalence of disability, which is largely attributed to a lower share of persons over 65 years living in institutions and a reduction in the the number of persons reporting some impairments in instrumental activities of daily living impairments (IADL), such as food shopping or using the telephone.12 Between 1992 and 2004, the age-adjusted percentage of people aged 65 years and older with at least one functional limitation decreased from 34.7 to 29.2.13 Between 1992 and 2003, prevalence rates for arthritis in persons over age 65 years increased from 55.2 to 58.6, diabetes increased from 15.9 to 19.7, hypertension increased from 51.1 to 59.2, and obesity increased from 15 to 21.2, whereas the reported prevalence of heart problems decreased slightly from 37.6 to 36.7.13 Recent Organization for Economic Cooperation and Development (OECD) projections suggest that public expenditure on long-term care will increase from 1.1 of GDP in 2005 to 2.3 in 2050.14 Regardless of the decline in disability in some countries, the aging of the population and the greater longevity of individuals can be expected to lead to increasing

numbers of older people with severe disabilities and in need of long-term care.14 Three general stages of progression in chronic illness have been identified and include: early stage, diagnosis and initial management, middle stage, disease modification and adjustment to functional decline, late stage, and preparation for dying.15 An understanding of some of the very common geriatric syndromes should be thoroughly understood by the palliative care clinician and include dementia, delirium, urinary incontinence, and falls. These syndromes further complicate end of care planning, and end-of-life symptom management in this population.

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Sites of Residence and Place of Death Sixty-six percent of older noninstitutionalized persons live in a family setting; this decreases with increasing age. Th ree of every five women older than 85 years live outside of a family arrangement. Rates of institutionalization are estimated to be 4 to 5 in the United States; this increases to 23 in the over-85-year-old population. The wide range of care settings for the elderly is reflected in the sites of death of the elderly.8,16–19 Over the past 100 years, the site of death has shifted from the home to institutions. Data from the National Institute on Aging’s Survey of the Last Days of Life (SLDOL) indicate that 45 of the elderly who died spent the night prior to death in a hospital, 24 spent the night in a nursing home, and 30 died at home.20 More recently, 43.2 of deaths for persons over 65 years were reported to have occurred in hospitals.21 Nursing home deaths are increasingly common for the oldest old: approximately one-third of decedents aged 75 years and older died in skilled nursing facilities in 2001.21 More than 90 of deaths at home, on hospice, or in nursing homes are now persons older than 65 years.22

Elderly Patients In several studies, cancer and dementia are predictive of death at home rather than in institutions. Death in hospice appears to correlate with the local availability of hospice beds, as well as a diagnosis of cancer. For patients with a preference for death at home, the availability of home visits by physicians correlates with a higher rate of death at home. In patients expressing an initial wish to die at home, caregiver burnout and unrelieved symptoms are predictive of death in hospitals and hospice.16–19 The available data suggest that with limited increase in the allocation of nursing support, dying patients’ wishes to die at home can be met. Elderly women are more than twice as likely to be living alone than elderly men. More than half of women 75 years and older live alone.16–19 Those living alone rely more heavily on the presence of social supports and assistance for the provision of healthcare.16–19

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Palliative Care in Nursing Homes Today 1.6 million people reside in the 18,000 nursing homes in the United States. According to the 2000 census, 4.7 of those ages 75 to 84 years and 18.2 of those ages 84 years and older live in nursing homes nationwide. In 1999, 777,500 deaths occurred in nursing homes, which represented approximately 25 of all deaths in the United States. The average length of nursing home residence for those who died in these institutions was 2 years, compared with the 2.38-year average length of residence for all nursing home admissions.23 These figures clearly tell us that the vast majority of residents admitted to nursing homes are severely ill. Because of Medicare hospice regulations, those residents would largely not be certified as terminally ill (prognosis of 6 months or less) and would therefore be ineligible for hospice care for 75 of their stay in a facility. Although there has been a modest increase in the proportion of nursing home residents who are receiving hospice (from 1 to 2.5 of the total nursing home population), the vast majority continue not to receive hospice, and the duration of time that residents are on endof-life care has remained at approximately 5 months. Other factors include time pressures and staff and leadership turnover.24–28 Other findings include the fact that few facilities have a “true” palliative care program; even in the model programs, 66.7 estimated that less than 15 of their patients were receiving palliative care.29 Pain management and end-of-life care in nursing homes represent management of the frailest individuals, often with minimal physician involvement. As many as 45 to 80 of nursing home residents have pain that contributes significantly to impaired quality of life.30 Most mild pain in nursing homes is related to degenerative arthritis, low-back disorders, and diabetic and postherpetic neuropathy. Cancer pain accounts for the majority of severe pain.31 Barriers to palliative care in the nursing home include institutional, patient, and staff-related barriers (Table 38–2).

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Table 38–2 Barriers to Palliative Care in Nursing Homes Institution-related Low priority given to palliative care management by administration Limited physician involvement in care, weekly or monthly assessments Limited pharmacy involvement, no on-site pharmacy Limited RN involvement in care; inadequate nurse–patient staff ratios Primary care being administered by nonprofessional nursing staff Limited radiological and diagnostic services, which impairs determination of a pain diagnosis Patient-related Physiological changes of aging, which affects distribution, metabolism, and elimination of medications Multiple chronic diseases Polypharmacy Impaired cognitive status and Alzheimer’s-type dementia Underreporting of pain because of fear of addiction, lack of knowledge, fear of being transferred Sensory losses that impede assessment Increased incidence of depression, which may mask reporting and assessment of pain Staff-related Lack of knowledge of symptom management at the end of life Lack of knowledge in the assessment and management of chronic cancer pain Lack of knowledge in use of opioid drugs, titration, and sideeffect management Fear of using opioids in elderly residents Misconceptions about use of opioids in elderly patients (e.g., fear of addiction, “elderly feel less pain”) Lack of knowledge in use of nonpharmacological techniques Lack of experience with other routes of administration including patient-controlled analgesia, transdermal, rectal, subcutaneous, and intravenous routes Source: Adapted from Stein (1996), reference 213.

Current health policy and reimbursement structures discourage use of palliative care and hospice care for nursing home residents. Quality standards and reimbursement rules provide incentives for restorative care and technologically intensive treatments rather than labor-intensive palliative care. Reimbursement incentives and fears about adherence to state and federal regulations also limit its use. Data from nursing homes suggest that as many as 30 to 80 of nursing home residents receive inadequate pain management.32–38 In one study comparing analgesic management of dying patients in a nursing home who were enrolled or not enrolled in Medicare Hospice program, 15 percent of hospice

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residents and 23 of nonhospice residents who were in daily pain received no analgesics; 51 of hospice residents and 33 of nonhospice residents received regular treatment for pain. These findings suggest that for nursing home residents in pain, analgesic management is better for hospice patients, but for many residents, pain management is sporadic and often inconsistent with American Medical Directors Association Guidelines.39 Many other obstacles to palliative care have been identified, including lack of communication among decision-makers, lack of agreement on a course for end-of-life care, failure to implement a timely end-of-life care plan, and failure to recognize treatment futility.40 Only about half of nursing home residents have do-not-resuscitate (DNR) orders, fewer than one in five have advance directives, and fewer (14) have living wills and do-not-hospitalize directives (4).41,42 One of the most troublesome concerns expressed by staff who care for nursing home residents is the difficulty in assessing pain in the cognitively impaired elderly resident. Approximately 90 of the 4 million Americans with dementia will be institutionalized before death.43 One of the barriers to end-of-life care in this population is that advanced dementia is often not viewed as a terminal condition. Because of this, palliative care often is not initiated until the final stages of life. In one retrospective study using the data from the Minimum Data Set,44,45 1784 residents with advanced dementia and 918 residents with terminal cancer were compared. Residents with advanced dementia were older, lived longer, and had higher activity of living scores than the terminal cancer residents. Six months after admission to the nursing home, only 20 of the residents with advanced dementia were perceived as having a life expectancy of less than 6 months. At the last assessment before death, only 4.1 were recognized as having a prognosis under 6 months; 55 had a DNR order, compared with 86.1 of the cancer patients.46 With respect to non-palliative interventions, residents dying with advanced dementia experienced more frequent uncomfortable or aggressive interventions at the end of life; 25 died with a feeding tube, 11 with restraints, and 10.1 with intravenous IV therapy. These findings suggest that palliative care for nursing home residents with advanced dementia is suboptimal and encourages use of educational strategies to promote palliative care to these patients.

Ethical Issues in Providing Palliative Care in Nursing Homes Although symptom management should be an integral part of the entire therapeutic continuum, intensive focus on palliation for elderly nursing home residents is typically an indication that the end of life is approaching. The issues that are raised and the decisions they require are some of the most difficult encountered in nursing homes. These decisions are often made by the older patient or, more often, the patient’s family and the care team. Sometimes, however, the complex nature of such decisions and their profound consequences

create confusion or disagreement. Issues confronting staff include questions surrounding the patient’s decisional capacity, how to best promote the patient’s interests, and differences in goals and plan of care. When these clinical conflicts occur, a bioethics consultation can be especially helpful in gathering the key parties clarifying the issues, providing a forum for deliberation, helping to define the goals of care, and supporting the parties in resolving the conflict in ways that are mutually acceptable.47,48 Clinicians who work in nursing homes face increasing caseloads and often rely on decisions and opinions of caregivers that may ultimately not reflect the values or goals of the patient. Advance directives are often unavailable or lack sufficient specificity and clarity to impact decisions such as transfer to the acute care setting or the institution of lifeprolonging treatments. The presence, stability, and willingness to discuss advance care planning (ACP) appears to depend on several factors, including communication issues, value differences, cultural issues, ethnicity, and mental capacity. Although much literature points toward the relationship between a patient’s prior decision regarding future treatment choices, stability of nursing home residents’ preferences for some life-prolonging therapies may vary over time. One study suggested that although a majority of residents consistently desired cardiopulmonary resuscitation over a 2-year period, fewer than half favored medical hydration and nutrition. However, as time progressed the proportion of residents willing to consider such interventions rose.49,50 The majority of residents in nursing homes at the end of life are unable to make treatment decisions for themselves. This results in reliance on surrogates.51 The burden of decision-making about withdrawal of lifeprolonging therapies may be lessened by affording the family the opportunity to explore goals of care with nursing home clinicians who have cared for their loved one over months or years, rather than being faced by unfamiliar hospital staff at critical times, in an emergent situation.

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Economic Considerations in Caring for the Elderly The higher rates of disability and comorbidity in the elderly, which require the provision of long-term residential care as well as home care, result in considerable costs to health care. Health Care Financing Administration data indicate that 6 to 8 of Medicare enrollees die annually and account for 27 to 30 of annual Medicare expenses.52 However, spending on aggressive interventions is not a major component of the hospital costs incurred in the dying elderly. Only 3 of Medicare beneficiaries who die sustain high costs associated with aggressive interventions such as surgery, chemotherapy, or dialysis. Although hospital costs in the last days of life are lower for the oldest old, the percentage of Medicare and Medicaid expenditure for nursing home care rises from 24 for the

Elderly Patients young-old (65–74 yr) to 62 for the oldest old (over 85 yr).53,54 Most required residential care occurs in the last days of life. Many older adults with limited supplemental insurance may be unable to remain in their own homes.55 Greater state support for home- and community-based services increases the likelihood of dying at home.

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measures such as the palliative performance scale in primary care, in the ED, and in long-term care settings may help distinguish between patients who are chronically ill and persons in whom death is likely in the following 12 months.56

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Case Management and the Elderly: Providing Coordination of Care Greater numbers of older adults living at home are managing multiple chronic conditions and disability. These patients often lack coordination of care. Their utilization of the health-care system may be episodic and unplanned, with the emergency department (ED) being an important source of medical care. The physician’s evaluation in the ED, and acute care in general, is often time-limited. Their evaluation focuses on individual diseases as opposed to a functionbased assessment and often does not give a complete picture of the older patient. Older patients with progressive illnesses may be at greater risk of polypharmacy, falls, functional decline, and institutionalization as a consequence of uncoordinated care. Other consequences of chronic medical conditions such as pain and other untreated symptoms may also result in utilization of the ED.56,57 Case management is defined as a health-care delivery process that provides quality healthcare, decreases fragmentation, enhances the client’s quality of life, and contains costs. Case managers provide coordination of medical care and social services. Elders who receive case management services, including risk assessment and follow-up health education, experience fewer hospitalizations and have lower health-care costs.58–60

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Uncertainty of Prognosis and the Provision of Palliative Care Providing palliative care to elderly patients is limited by the uncertain prognoses of many chronic illnesses in this population (congestive heart failure, chronic obstructive pulmonary disease [COPD], cerebrovascular disease, dementia). Because of the difficulty to accurately prognosticate and many other factors, most patients who have fatal illnesses do not use the Medicare hospice benefit until shortly before death.61 Even the most complex prognostic scoring systems, such as the Acute Physiology Age Chronic Health Evaluation (APACHE), provide little information for the likelihood of an individual patient’s death.62 The uncertain prognoses of chronic nonmalignant medical conditions can affect clinical decision-making. It may also lead to overuse of health-care resources in acute care settings, even when death is imminent. Routine use of screening

Advance Care Planning Advance care planning is a process whereby a patient, in consultation with health-care providers, family members, and important others, makes decisions about his/her future healthcare. Grounded in the ethical principle of autonomy and the legal doctrine of consent, ACP helps to ensure that the norm of consent is respected should the patient become incapable of participating in treatment decisions. Health-care providers can play an important role by informing patients about ACP, directing them to appropriate resources, counseling them as they engage in ACP and helping them to tailor advance directives to their prognosis.63 Advance care planning assists individuals in preparing for a sudden unexpected illness from which they expect to recover, as well as the dying process and ultimately death. These conversations should begin when individuals are younger, healthy, and independent and should continue along the health/illness continuum, recognizing that goals of care and preferences may change as individuals develop chronic illness and functional decline, advancing disease, and frailty.64 It is a not merely a document or an isolated event but dynamic planning that needs to be reviewed from time to time as the health status of a person changes. The following steps must be taken prior to and when evoking advance care plans—both by the patient, their loved ones, and the health-care provider: • Becoming educated about the topic, including understanding the documents, the process, and the benefits • Exploring, clarifying, and documenting an individual’s values, beliefs, goals of care, and expectations • Understanding how to choose the best spokesperson (surrogate or agent) who is named in the state’s legal document and who will work best with physicians and health-care providers to make decisions on the patient’s behalf, then discussing wishes with the chosen spokesperson and alternate, family, physician, attorney, and spiritual advisor, as needed • Understanding various life-sustaining treatments beyond cardiopulmonary resuscitation • Recognizing practical issues related to maintaining document accessibility and the need to periodically review and update the documents.65 Having acquired the knowledge and education about the processes involved in ACP and via shared decision-making between patients, their caregivers, and the health-care providers, these wishes/plans can then be endorsed and ensured via the Advance Directives.

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Advance Directives Advance Directives are written documents that may be an instruction directive, a proxy directive, or both. These extend the autonomy of competent patients to future situations in which the patient is incompetent. In effect they permit incompetent patients to exercise their autonomy rights through completing an instruction and/or proxy directive in advance of incompetency.65

Instructive Directives Instructive directives specify what life-sustaining treatments the person would or would not want in various health situations.66 They often state the patient’s wishes about lifesustaining treatment in various clinical situations. Patients with decision-making capacity have the right to refuse any treatment, and instructive directives extend that right when decision-making capacity is compromised. If an intervention is not legally available to any patient (e.g., euthanasia), then an instructive directive does not make that intervention available to a patient after they have lost decision-making capacity. Directives can be difficult to complete, even for physicians. Most instructive directives are ambiguous and lack specific directions. Although directives often refer to “heroic life-prolonging measures,” such measures are rarely defined. Generally, instructive directives fail to include direct references to when specific measures should be withheld or withdrawn in the context of incurable or terminal illness. Nevertheless, when people complete an instructive directive, they expect their wishes to be honored.66 Some states allow family members to execute a Natural Death Act Document after the patient loses decision-making capacity. This provides legal protection to physicians who withdraw life-prolonging interventions—protection that may encourage physicians to act in accordance with a patient’s stated wishes.66

Proxy Directives A proxy directive is a document authorizing a specific person to make health-care decisions on behalf of a patient only after that person loses decision-making capacity. When possible, ACP should take place soon after a diagnosis of a life-limiting or chronic disease is made, particularly one that is expected to cause declining mental and physical health. Alzheimer’s disease is a good example of a chronic illness where an individual may lack or gradually lose the ability to think clearly. This change affects his/her ability to participate meaningfully in decision-making and also makes early legal and financial planning very important.67 Although difficult questions often arise, ACP can help people with Alzheimer’s disease and their families clarify their wishes and make well-informed decisions about healthcare and financial

arrangements. When possible, ACP should take place soon after a diagnosis of early-stage Alzheimer’s disease while the person can participate in discussions. People with early-stage Alzheimer’s disease are often capable of understanding many aspects and consequences of legal decision-making. However, legal and medical experts say that many forms of planning can help the person and his family even if the person is diagnosed with later-stage Alzheimer’s disease.67 In addition to the aforementioned advance directives, there are other medical and legal/financial planning documents that are coupled to ACP. Some such medical documents are: • The living will describes and instructs how the person wants end-of-life healthcare managed. • Durable power of attorney for healthcare gives a designated person the authority to make health-care decisions on behalf of the person with Alzheimer’s disease. • The do not resuscitate (DNR) form instructs healthcare professionals not to perform cardiopulmonary resuscitation in case of stopped heart or stopped breathing. A DNR order is signed by a doctor and put in a person’s medical chart.67

Legal/Financial Documents • Living will: A living will indicates how a person’s assets and estate will be distributed among beneficiaries after his/ her death. It records a person’s wishes for medical treatment near the end of life. It may specify the extent of lifesustaining treatment and major healthcare the person wants. It may also help a terminal patient die with dignity as well as protect the clinician or hospital from liability for carrying out the patient’s instructions. These may also specify how much discretion the person gives to his/her proxy about end-of-life decisions.67 • Durable Power of Attorney for Finances: The Durable Power of Attorney for Finances gives a designated person the authority to make legal/financial decisions on behalf of the person. • Living Trust: The living trust gives a designated person (trustee) the authority to hold and distribute property and funds for the individual.67

The Importance of Advance Directives in Palliative Care Advance directives are more relevant to palliative care than healthcare in general because of the high likelihood of deterioration and death among palliative patients. Generic advance directives fail to account for the different needs of people who might make use of them. The philosophy of palliative care probably predetermines many of the treatment choices usually offered in the instruction directives of advance directives. However, instruction directives do not necessarily need to be focused on the treatment choices. They can also be focused around patients’ values, the goals of therapy, health states that patients consider to be worse than death, and symptoms

Elderly Patients such as pain. This approach to design instruction directives seems more appropriate to palliative care setting. It would help affirm goals of palliative care and facilitate discussion between patients and their families and the health-care providers. Moreover, the addition of a proxy directive can be very helpful in the palliative care context, particularly when there is dispute among family members regarding the appropriate direction of care.65

Advance Directives and Decision-Making in the Elderly Advance directives are especially important in elderly patients who are at high risk of morbidity and mortality. The presence, stability, and willingness to discuss ACP appears to depend on several factors, including communication issues, value differences, cultural issues, ethnicity, and mental capacity.50,51 In one study of ACP among nursing home residents, two variables found to be associated with the reduced likelihood of having DNR and do-not-hospitalize orders or restricting feeding, medication, or other treatment were AfricanAmerican ethnicity and less time in the facility. Most studies support the notion that a patient’s prior decision regarding treatment choices accurately reflects future choices.68–71 However, some others show that patient preferences are subject to change and may be influenced by a number of factors as demonstrated by a 2-year prospective study conducted by McParland et al. to evaluate the durability over time of decisions made regarding terminal care of mentally intact nursing home patients and the influence of such factors as intervening illness, loss of significant others, and cognitive, emotional, and functional decline. Results of the study revealed that preferences regarding cardiopulmonary resuscitation and parenteral and enteral nutrition changed over both the 12- and 24-month study periods. Only degree of change in cognitive status proved to be predictive of changes in decision. Gender, presence or absence of depression, change in level of functional abilities and intercurrent illness or stressor did not influence change regarding life-sustaining therapy. This study suggests that periodic re-evaluation of advance directives should be performed and that ongoing discussions should be initiated with patients by health-care professionals.72 Although this study focused on institutionalized patients but the principle of re-evaluation of goals of care should be practiced by health-care providers in all health-care settings. As per the philosophy of palliative care, these discussions should include the caregivers and the significant others in the patient’s life as a means of providing holistic support via shared decision-making. It goes without saying that this would require time allocated toward having theses discussions by the health-care teams, which could pose a challenge and constraint on addressing ACPs. It has also been brought to attention by a Hastings Center report that despite the hope that traditional advance directives would ensure that patient preferences are honored, numerous studies have found that only a minority (20–30)

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of American adults have an advance care directive and that these documents have limited effects on treatment decisions near the end of life.73 So, what is being done to promote the process of advance care planning?

State Initiatives on Advance Care Planning In 1991, Oregon state developed the “Physician Orders for LifeSustaining Treatment” (POLST: www.polst.org), to honor end-of-life treatment preferences and to overcome some of the limitations of advance care directives.74 The POLST paradigm is designed to improve end-of-life care by converting patients’ treatment preferences into medical orders that are transferable throughout the health-care system. This paradigm is now implemented in multiple states, with many considering its use. It is designed to convert patient preferences for life-sustaining treatments into immediately actionable medical orders. The centerpiece of the program is a standardized, brightly colored form that provides specific treatment orders for cardiopulmonary resuscitation, medical interventions, artificial nutrition, and antibiotics. It is complemented based on conversations among health-care professionals with the patient and/or the appropriate proxy decisionmakers, in conjunction with any existing advance directive for incapacitated patients. The POLST form is recommended for persons who have advanced chronic progressive illness, who might die in the next year, or who wish to further define their preferences for treatment.75 As Oregon’s program evolved, selected regulations rather than legislation were used to help with implementation. Other developing programs like West Virginia and New York sought legislation to facilitate POLST paradigm adoption. Each new program found that their approach needed to be thoughtfully tailored to state laws and regulations. An investigation by task force members, published in March 2008, underscores the need to understand state policies and rules in helping choose the best path for implementation.75 On July 7, 2008, in the state of New York, Governor David Paterson signed Chapter 197 of the Laws of 2008 allowing the use of an alternative DNR form, which is the Medical Orders for Life Sustaining Treatment (MOLST) form. MOLST is an alternative form and process for patients to provide their end-of-life care preferences to health-care providers across the spectrum of the health-care delivery system. MOLST may be honored by Emergency Medical Services (EMS), hospitals, nursing homes, adult homes, hospices, and other health-care facilities and their health-care provider staff. The MOLST form is a bright pink form that was piloted by the Rochester Health Commission under previous legislation for use by the EMS community in Onondaga and Monroe Counties.76 MOLST has been reviewed annually since 2005 and has been adapted to meet clinical needs of the patients. The success of MOLST Pilot Project resulted in Governor Paterson signing a bill (PHL§2977(3)) that made MOLST a statewide law, thereby changing the scope of practice for EMS across New York State.77

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The MOLST can be used in the community in lieu of the NYS Nonhospital DNR. In signing the legislation, Governor Paterson said, “People should be allowed as much say in their end-of-life care as they would have at any other time. This bill will allow many people who are critically ill to make enduring decisions on the care they will receive. These will be difficult decisions for every person to make, but they should have the freedom to make them.”78 Addressing ACP can be complex and challenging and should be considered a dynamic process where the goals of care may need to be reset from time to time as the health status of the individuals and the resources available for their care change. Also, it would help to hold these discussions early and at the level of the community. To do so, the healthcare providers may need to incorporate these discussions in their practice as a standard of care. This may further require a motivation and commitment by educational institutions to train the future nurses, doctors, social-workers, and so forth on addressing advance care plans so that they are primed toward initiating and engaging in these discussions when they eventually are ready as individual health-care leaders or as part of the multidisciplinary health team. To conclude, as commented by Murray and Jennings, we sometimes seem to act as though dying were solely the concern of the dying person. The fact is we die, as we live, in a web of vital and complex relationships. Culture needs time to catch up with end-of-life law. The next decades should be a time of education and soul-searching discussion in communities and at kitchen tables, as well as in health-care settings.79

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Family/Caregiver Issues Who are the Caregivers for the Elderly? The term caregiver refers to anyone who provides assistance to someone else who needs it. “Informal caregiver” is a term used to refer to unpaid individuals, such as family members and friends, who provide care. These persons can be primary or secondary caregivers, full- or part-time, and can live with the person being cared for or live separately. “Formal caregivers” are volunteers or paid care providers associated with a service system. Estimates vary on the number of caregivers in the United States. According to a National Long-Term Care Study (NLTCS), more than 7 million people are informal caregivers, defined here as spouses, adult children, other relatives, and friends who provide unpaid help to older people with at least one limitation in their activities of daily living. An estimated 15 of American adults are providing care for seriously ill or disabled adults.80 Of these, an estimated 12.8 million Americans need assistance to perform activities such as eating, dressing, and bathing. About 57 are aged 65 years or older (7.3 million). Spouses accounted for about 62 of primary caregivers. Approximately 72 of caregivers are female.81 The majority

of caregivers provide unpaid assistance for 1 to 4 years, and 20 provide care for 5 years or longer.82 According to the 2000 National Hospice Care Survey (NHCS), 42 of patients enrolled in hospice programs were women and 33 were men. The majority (81) were 65 years or older, and a significantly larger proportion of women than men were age 85 years or older. Men were more likely to have a spouse as their primary caregiver, whereas women were more likely to be cared for by a child or child-in-law. The most common diagnosis for most of the hospice care patients included neoplasm, heart disease, and COPD.82

Involving Family in Caregiving for the Elderly What is the Burden on the Family? The burden of caregiving has been well-documented in the literature and includes a greater number of depressive symptoms, anxiety, diminished physical health, financial problems, and disruption in work. The amount of concrete needs the patient has strongly relates to family and caregiver psychological distress and burden of care.83 Elderly patients who are dying require varying levels of assistance with personal care, meal preparation, shopping, transportation, paying bills, and submitting forms related to health care. The level of physical care may be tremendous and includes bathing, turning and positioning, wound care, colostomy care, suctioning, medication administration, and managing incontinence. If the patient is confused or agitated, the strain is even greater, as 24-hour care may be necessary. In the palliative care setting, where the treatment goals are supportive and often include management of symptoms such as pain, respiratory distress, and delirium, the patient is frequently confined to home, with a greater burden placed on the live-in spouse or child. In one study comparing the impact of caregiving in curative and palliative care settings, two study groups were evaluated: 267 patients received active, curative treatment, and 134 patients received palliative care through a local hospice. Patients in the palliative care group were more physically debilitated and had poorer performance status. The mean age was 59.7 years for the curative group and 57.9 years for the palliative care group. Caregiver quality-of-life measures demonstrated that family caregivers of patients receiving palliative care had lower quality-of-life scores and worse overall physical health than family caregivers of patients receiving curative care.84 Families with low socioeconomic status and those with less education were more distressed by the patient’s illness. Transitions in spousal caregiving have been investigated in respect to the level/intensity of caregiving and its impact on the overall health of the caregiver. In 428 subjects who were assessed at four intervals over a 5-year period, those who transitioned to heavy caregiving had more depressive symptoms than those who transitioned into moderate caregiving. Heavy caregivers scored higher in the number of healthrisk behaviors between the second and third observations,

Elderly Patients concluding that these outcomes become worse over time.85 In another study of 231 caregivers of cancer patients who were at home, the goals were to evaluate family caregiver’s quality of life, financial burden, and experience of managing cancer pain in the home.86 Family caregivers scored worse in areas of coping with difficulty, anxiety, depression, happiness, and feeling in control. In areas of physical well-being, the greatest problems were sleep changes and fatigue. Other quality-oflife disruptions included interference with employment, lack of support from others, isolation, and financial burden. The estimated average time spent caregiving was more than 12 hours per day; the estimated time for pain management was more than 3 hours per day. Family caregivers reported worse outcomes than patients did in their perception of the pain intensity, pain distress to themselves, feeling able to control the pain, and family concern about pain in the future. Caregivers reported fear of future pain, fear of tolerance, and concern about addiction and harmful effects of analgesics. The authors concluded that educational programs in pain management are needed and that further educational efforts should also address the emotional aspects of managing cancer pain in the home. Interventions directed toward improving the quality of life of direct caregivers include educational programs, improvement in home care supports, psychoeducational programs, and improved access to healthcare professionals who provide symptom management and end-of-life care. Family grief therapy during the palliative phase of illness has also improved the psychosocial quality of life of caregivers. Kissane and colleagues87 used a screening tool to identify dysfunctional family members and relieve distress through a model of family grief therapy sessions. Smeenk and colleagues88 demonstrated improved quality of life of direct caregivers after implementation of a transmural home care intervention program for terminal cancer patients. Macdonald89 demonstrated that massage as a respite intervention for caregivers was successful in reducing physical and emotional stress, physical pain, and sleep difficulties. This nonpharmacological and noninvasive intervention is highly valued and accepted by caregivers because of its simplicity and beneficial effects.

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Pharmacological Considerations in Providing Symptom Management Pharmacological intervention is the mainstay of treatment for symptom management in palliative care of the elderly patient. Knowledge of the parameters of geriatric pharmacology can prevent serious morbidity and mortality when multiple drugs are used to treat single or multiple symptoms or when, in the practice of chronic pain management, trials of sequential opioids (opioid rotation, or opioid switch) are used. With normal aging there is a steady decline in physiological reserve capacity in most organ systems and dysregulation

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in others.90 (These changes become apparent under stress and play an important role at the end of life when the goal is symptom control and comfort. Important physiological changes in the elderly patient will be outlined below.

Pharmacokinetics The four components of pharmacokinetics are absorption, distribution, metabolism, and excretion. In the absence of malabsorption problems and obstruction, oral medications are well-tolerated in the elderly population. With aging, there is some decrease in gastric secretion, absorptive surface area, and splanchnic blood flow. Most studies show no difference in oral bio-availability—the extent to which a drug reaches its site of action. There is little literature on the absorption of long-acting drugs in the elderly, including controlled or sustained-release opioids, and transdermal opioids commonly used in the treatment of chronic cancer pain in the elderly patient. Controlled-release dosage forms are generally more appropriate with drugs that have short half-lives (less than 4 hours) and include many of the shorter-acting opioids, including morphine and hydromorphone. Generally, it is safer to use opioids that have shorter half-lives in the elderly cancer patient. Distribution refers to the distribution of drug to the interstitial and cellular fluids after it is absorbed or injected into the bloodstream. There are several significant physiological factors that may influence drug distribution in the elderly palliative care patient. An initial phase of distribution reflects cardiac output and regional blood flow. The heart, kidneys, liver, and brain receive most of the drug after absorption. Delivery to fat, muscle, most viscera, and skin is slower; it may take several hours before steady-state concentrations are reached. Although cardiac output does not change with age, chronic conditions, including congestive heart failure, may contribute to a decrease in cardiac output and regional blood flow. This second phase of drug distribution to the tissues highly depends on body mass. Body weight generally decreases with age, but more importantly, body composition changes with age. Total body water and lean body mass decrease, whereas body fat increases in proportion to total body weight. The volume-of-distribution changes are mostly for highly lipophilic and hydrophilic drugs, and the elderly are most susceptible to drug toxicity from drugs that should be dosed on ideal body weight or lean body weight. Theoretically, highly lipid-bound drugs (e.g., long-acting benzodiazepines and transdermal fentanyl, both commonly prescribed to elderly patients) may have an increased volume of distribution and a prolonged effect if drug clearance is constant.91 Water-soluble drugs (e.g., digoxin) may have a decreased volume of distribution and increased serum levels and toxicity if initial doses are not conservative. To avoid possible side effects in a frail elderly patient, it may be safe to start with one half the dose usually prescribed for a younger patient. Another host factor that influences drug distribution is plasma protein concentrations.92,93 Most drugs, including

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analgesics, are extensively bound to plasma proteins. The proportion of albumin among total plasma proteins decreases with frailty, catabolic states, and immobility, which is commonly seen in many elderly patients with chronic conditions. A decrease in serum albumin can increase the percentage of free (unbound) drug available for pharmacological effect and elimination. In this setting, standard doses of medications lead to higher levels of free (unbound) drug and possible toxicity. The liver is the major site of drug metabolism. Hepatic metabolism of drugs depends on drug-metabolizing enzymes in the liver. The hepatic microenzymes are responsible for this biotransformation. With advanced age, there is a decrease in liver weight by 20 to 50 and liver volume decreases by approximately 25.94 Additionally, galactose clearance, a nondrug marker for hepatic functional mass, is decreased by 25 in advanced age. Associated with these changes in liver size and weight is a decrease in hepatic blood flow, normalized by liver volume. This corresponds to a decrease in liver perfusion of 10 to 15. Drugs absorbed from the intestine may be subject to metabolism and the first-pass effect in the liver, accounting for decreased amounts of drug in the circulation after oral administration. The end result is decreased systemic bio-availability and plasma concentrations.95 The process of biotransformation in the liver largely depends on the P-450 cytochrome. During biotransformation, the parent drug is converted to a more polar metabolite by oxidation, reduction, or hydrolysis. The resulting metabolite may be more active than the parent drug. The cytochrome P-450 has been shown to decline in efficiency with age. These altered mechanisms of drug metabolism should be considered when treating the elderly palliative care patient with opioids, longacting benzodiazepines, and neuroleptics. The effect of age on renal function is quite variable. Some studies show a linear decrease in renal function, amounting to decreased glomerular function; other studies indicate no change in creatinine clearance with advancing age.95 Renal mass decreases 25 to 30 in advanced age, and renal blood flow decreases 1 per year after age 50.95 There are also decreases in tubular function and reduced ability to concentrate and dilute the urine. Generally, the clearance of drugs that are secreted or filtered by the kidney is decreased in a predictable manner. For example, delayed renal excretion of meperidine’s metabolite, normeperidine, may result in delirium, central nervous system stimulation, myoclonus, and seizures. Meperidine is not recommended for chronic administration in any patient but is of special concern for elderly patients with borderline renal function. Other drugs that rely on renal excretion include nonsteroidal antiinflammatory agents, digoxin, aminoglycoside antibiotics, and contrast media.

Medication Use in the Elderly: Problems with Polypharmacy Older individuals use three times more medications than younger people do. They account for approximately 25 of physician visits and approximately 35 of drug expenditures.

Elderly patients are more likely to be prescribed inappropriate medications than younger patients.95 Advancing age alone does not explain the risk of adverse drug reactions, and polypharmacy is a consistent predictor. As noted earlier, in the palliative care setting, elderly patients often have more than one comorbid medical condition, necessitating treatment with many medications, which places them at greater risk of adverse drug reactions. In addition, new medications not only place the elderly at risk of adverse drug reactions, they also increase the risk of significant drug interactions. For example, the addition of an antacid to an elderly patient already on corticosteroids for bone pain may significantly decrease the oral corticosteroid effect because of decreased absorption. Understanding pharmacodynamics in relationship to agerelated physiological changes can assist the clinician in evaluating the effectiveness and side-effect profile in the elderly palliative care patient (Table 38–3). When multiple drugs are used to treat symptoms, the side-effect profile may increase, potentially limiting the use of one or more drugs. For example, when using an opioid and a benzodiazepine in treating chronic pain and anxiety in the elderly patient, excessive sedation may occur, limiting the amount of opioid that can be administered. Table 38–4 outlines the components of a comprehensive medication assessment in the elderly palliative care patient.

Table 38–3 Risk Factors for Medication Problems in the Elderly Palliative Care Patient 1. Multiple health care prescribers (e.g., multiple physicians, nurse practitioners) 2. Multiple medications 3. Automatic refi lls 4. Age-related physiological pharmacokinetic changes 5. Age-related pharmacodynamic changes 6. Sensory losses: visual, hearing 7. Cognitive defects: delirium, dementia 8. Depression 9. Anxiety 10. Knowledge deficits related to indication, action, dosing schedule, and side effects of prescribed medication 11. Complex dosing schedule or route of administration 12. Comorbid medical conditions: frailty, cerebrovascular disease, cardiac disease, musculoskeletal disorders, advanced cancer 13. Self-medication with over-the-counter medications, herbal remedies 14. Lack of social support or lives alone 15. Alcoholism 16. Financial concerns 17. Illiteracy 18. Misconceptions about specific medications (e.g., addiction) 19. Language barrier Source: Adapted from Walker et al. (1996), reference 214.

Elderly Patients

Table 38–4 Medication Assessment in the Elderly Palliative Care Patient 1. Identify prior problems with medications. 2. Identify other health care providers who prescribe medications. 3. Obtain a detailed history of present medication use at all patient contacts. Include over-the-counter and herbal remedies and dosage, frequency, expected effect, and side effects. When assessing efficacy of pain management, ask about PRN “rescue” doses. 4. Identify “high-risk” medications and assess for side effects or drug–drug interactions. 5. Evaluate the need for drug therapy by performing a comprehensive physical examination and symptom assessment, and obtain appropriate laboratory data. 6. Assess functional, cognitive, sensory, affective, and nutritional status. 7. Review patient’s and family member’s level of understanding about indications, dosing, and side effects. 8. Identify any concerns about medications (cost, fears, misconceptions). 9. Identify presence of caregiver or support person and include in all assessments. 10. Implement strategies to increase support if lacking (e.g., skilled or nonskilled home care nursing support, community groups, other family members, communitybased day programs). Source: Adapted from Walker et al. (1996), reference 214.

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Management During the Last Weeks of Life: Special Concerns During the Dying Process Care during the last hours of life should be a fundamental component of every nurse and physician’s training. Both patients and family members are in special need of assistance with decision-making about end-of-life care. Sykes has identified the need to make a diagnosis of dying, not only so that goals of care may be established and interventions tailored but also so that patients may be made aware, if they wish, so that end-of-life decisions can be made.96 Decisions about a place to die—either in hospital or at home—should be made, if possible, by the patient and their family. In a recent study in British Hospitals, only 45 of 2673 patients from 118 hospitals were informed by staff that they were dying.97 The concern about discussing death is the problem of prognostication. Physicians consistently overestimate patients’ survival, and familiarity with the patients tends to decrease their ability to prognosticate.98 Predictors of death within days include the inability to take drinks larger than sips, semi-comatose state, inability to swallow pills, being bedridden, and, in some cases, death rattle. Other signs include mottled skin color in the extremities,

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irregular breathing, and loss of the radial pulse. Difficulties in prognostication in the terminal stages of heart disease or dementia result from the lack of predictive prognostic factors, and thus hinder the provision of end-of-life care.99 Numerous studies have evaluated symptoms during the last weeks of life and indicate that patients experience a high degree of symptom distress and suffering. In one study by Seale and Cartwright,100 there were age-related differences in the incidence of mental confusion, loss of bladder and bowel control, as well as seeing/hearing difficulties. There was no age-related difference in patients reporting pain (72), trouble breathing (49), loss of appetite (47), drowsiness (44), and other symptoms, including sleeplessness, constipation, depression, vomiting, and dry mouth. In another study of 40 frail elderly patients admitted to the hospital, the most frequent diagnosis was chronic respiratory failure, loss of appetite, and weakness. Frail elderly patients were defined by age over 75 years, with the presence of numerous chronic diseases or geriatric syndrome (incontinence, falls, cognitive impairment, immobility, etc).101 The complex symptomatology experienced by elderly patients, especially those with cancer and multiple comorbidities, demands that an aggressive approach to symptom assessment and intervention be used. Geriatric patients differ from younger patients in all domains of care. At the end of life, the geriatric patient who is dying may also have a have a higher incidence of certain syndromes, including dementia, urinary incontinence, falls, hearing and visual problems, as well as limited family support. Devising a palliative plan of care for the elderly patient who is highly symptomatic or who is actively dying requires ongoing communication with the patient and family; assessment of patient and family understanding of goals of care and religious, cultural, and spiritual beliefs; access to community agencies; psychological assessment; and patient and family preferences regarding advance directives. Table 38–5 outlines dimensions of a palliative care plan for the elderly. The management of three prevalent and distressing symptoms experienced by the elderly at the end of life—dyspnea, pain, and delirium—is discussed below. Each of these symptoms is discussed in greater detail in other chapters.

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Dyspnea Dyspnea may be one of the most frightening and difficult symptoms an elderly patient can experience. A subjective feeling of breathlessness or the sensation of labored or difficult breathing, dyspnea contributes to severe disability and impaired quality of life. Dyspnea and fear of dyspnea produce profound suffering for dying patients and their families. This section will outline the special needs for elderly patients, with a focus on physiological factors that increase the risk of dyspnea.

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Table 38–5 Dimensions of a Palliative Plan of Care for the Elderly Patient

Table 38–6 Risk Factors for Dyspnea in the Elderly Palliative Care Patient

1. Assess extent of disease documented by imaging studies and laboratory data. 2. Assess symptoms, including prevalence, severity, and impact on function. 3. Identify coping strategies and psychological symptoms, including presence of anxiety, depression, and suicidal tendencies. 4. Evaluate religious and spiritual beliefs. 5. Assess overall quality of life and well-being. Does the patient feel secure that all that can be done for them is being done? Is the patient satisfied with the present level of symptom control? 6. Determine family burden. Is attention being paid to the caregiver so that burnout does not occur? If the spouse or caregiver is elderly, is he or she able to meet the physical demands of caring for the patient? 7. Determine level of care needed in the home if the patient is dying. 8. Assess fi nancial burden on patient and caregiver. Is an inordinate amount of money being spent on the patient and will there be adequate provisions for the elderly caregiver when the patient dies? 9. Identify presence of advance care planning requests. Have the patient’s wishes and preferences for resuscitation, artificial feeding, and hydration been discussed? Has the patient identified a surrogate decisionmaker who knows their wishes? Is there documentation regarding advance directives?

Risk factor Structural factors Increased chest wall stiff ness Decrease in skeletal muscle, barrel chest, increase in anteroposterior diameter Decrease in elasticity of alveoli Other factors Anemia Cachexia Dehydration Ascites Atypical presentation of fever Heart failure Immobility Obesity Recent abdominal, pelvic, or chest surgery Lung disease (COPD, lung cancer)

Comment Increase in the work of breathing Decrease in maximum volume expiration Decrease in vital capacity

Drier mucous membrane, increase in mucous plugs Reduced febrile response, decreased WBC response Increased risk of aspiration, DVT, PE Increased risk of DVT, PE

Sources: Adapted from Eliopoulos (1996), reference 216; Palange et al. (1995), reference 102. COPD, chronic obstructive pulmonary disease; DVI, deep venous thrombosis; PE, pulmonary embolism; WBC, white blood cell.

Source: Adapted from “Improving care at the end of life” (1997), reference 215.

Physiological Correlates in the Elderly that Increase Risk of Dyspnea The effects of aging produce a clinical picture in which respiratory problems can develop. With aging, the elastic recoil of the lungs during expiration is decreased because of less collagen and elastin. Alveoli are less elastic and develop fibrous tissue. The stooped posture and loss of skeletal muscle strength often found in the elderly contribute to reduction in the vital capacity and an increase in the residual volume of the lung. Table 38–6 outlines the pulmonary risk factors for the development of dyspnea in the elderly palliative care patient. Respiratory muscle weakness may play a major role in some types of dyspnea. Palange and colleagues102 found that malnutrition significantly affected exercise tolerance in patients with COPD by producing diaphragmatic fatigue. In patients with cachexia, the maximal inspiratory pressure, an indicator of diaphragmatic strength, is severely impaired. Cachexia and asthenia occur in 80 to 90 of patients with advanced cancer and are also prevalent in elderly patients with multiple

comorbid psychiatric and medical conditions. These mechanisms may affect the development of dyspnea and fatigue in the elderly who have advanced nonmalignant and malignant disease. Ripamonti and Bruera103 have suggested that in some patients, dyspnea may be a clinical presentation of overwhelming cachexia and asthenia. The multiple etiologies of dyspnea in the dying elderly patient include both malignant (e.g., tumor infi ltration, superior vena cava syndrome, pleural eff usion), treatment-related (Adriamycin-induced cardiomyopathy, radiation-induced pneumonitis, pulmonary fibrosis), and nonmalignant causes (e.g., metabolic, structural). Typically breathlessness may be episodic, but with rapid disease progression it often occurs at rest. Often dyspnea at the end of life occurs with other prominent end-of-life symptoms including cachexia, fatigue, and weakness, and decline in the cancer patient is more predictable and steadily downward.104 Two causes of dyspnea, deep vein thrombosis (DVT) and pulmonary embolism (PE), are prevalent in the elderly and are often unrecognized and undiagnosed. They may present as pleuritic chest pain with or without dyspnea and hemoptysis. The risk factors in the elderly include increased venous

Elderly Patients stasis in the legs, impaired fibrinolysis, coagulopathies, recent surgery, immobility, and congestive heart failure. Treatment depends on accurate diagnosis, and an estimate of risks versus benefits should be considered in deciding on a course of action. Ventilation-perfusion scans are the most reliable indicator of whether a PE has occurred, and the identification of a DVT as the source of the PE can be accomplished through noninvasive Doppler studies of the legs. Whether it is prudent or compassionate to perform these studies in the elderly patient who is dying should be considered. In the elderly patient who is not actively dying, diagnostic tests can be safely performed. Treatment with anticoagulants in addition to supportive symptom management will reduce the symptom burden and suffering.

Treatment of Dyspnea When possible, relief of dyspnea is aimed at treatment of the underlying disease process, whether malignant or nonmalignant in origin. Symptomatic interventions are used when the process is not reversible. Both pharmacological and nonpharmacological interventions should be employed. One patient may present with multiple etiologies; therefore, multiple interventions are indicated. Therapeutic interventions are based on the etiology and include pharmacological (e.g., bronchodilators, steroids, diuretics, vasodilators, opioids, sedatives, antibiotics), procedural (e.g., thoracentesis, chest tube placement), nonpharmacological (e.g., relaxation, breathing exercises, music), radiation therapy, and oxygen. At the end of life, the pharmacological use of benzodiazepines, opioids, and corticosteroids remain the primary treatment. Using opioids to manage dyspnea can relieve both the sensation of breathlessness as well as having other objective and subjective benefits including anxiety, pain cough, and cardiac pre-load and after-load.105 The use of nebulized opioids has been evaluated and most of the studies conclude that they offer no greater benefit than systemic opioids. The use of nebulized morphine has been reported as a treatment for dyspnea; systematic reviews have concluded that nebulized opioids are no more effective than nebulized placebo.106 A Cochrane Review, based on a meta-analysis with only three randomized controlled trials comparing nebulized morphine to placebo, concluded that there is no evidence to support the use of nebulized opioids for the treatment of breathlessness.107 Another study indicated that both nebulized and subcutaneous morphine significantly reduced background dyspnea, although these results were not compared to a saline treatment arm.108 In another study comparing the effect on nebulized hydromorphone, systemic hydromorphone, and nebulized saline on relief of incident dyspnea in opioid-tolerant palliative care cancer patients found that each of the treatments resulted in statistically significant improvements in breathlessness, with no significant differences between treatments. The average

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age of the patient was 69 years, with a median of 40 days to death. The findings suggesting that systemic (oral or subcutaneous) breakthrough analgesic doses of hydromorphone provide rapid and significant relief for incident breathlessness are consistent with those reported for the effects of opioids on baseline intractable dyspnea.109 The results of this study are encouraging, suggesting the use of saline for the management of dyspnea in patients is a simple and easy intervention. The authors do not feel they could support clinical recommendations but suggested further trials. The use of nebulized fursemide has been shown in several small, single-dose studies to result in bronchodilitation and reduction of breathlessness.110,111 Fursosemide is a loop diuretic that when inhaled inhibit cough and protect against bronchoconstriction. In theory, aerosolized furosemide inhibits cough and prevents bronchospam and suppresses pulmonary C-fibers in bronchial epithelium.112 The use of furosemide is largely free of side effects and may prove useful in patients at the end of life. In conclusion, higher level clinical evidence consistently shows that aerosolized opioids are not effective in improving dyspnea or exercise tolerance in patients with chronic cardiopulmonary diseases including COPD and idiopathic pulmonary fibrosis.113 The physiological component of dyspnea may be relieved by supplemental oxygen, noninvasive positive pressure ventilation for hypercapneic adults, or blowing cool air on the face—measures that can used in the home or in the hospital. Nonpharmacological interventions should always be attempted, including relaxation therapy, acupuncture, music therapy, or massage. A dyspnea scale should guide dose adjustments with the dual goal of providing dyspnea relief and minimizing the sedative effects. If the patient is unable to rate their dyspnea on a scale of 0 to 10, observational signs of dyspnea should be utilized.114 Often there is reluctance among staff to use opioids and sedatives in the elderly because of unfamiliarity with these medications, lack of experience in treating dyspnea in dying patients, low priority given to this symptom, or fear that these drugs may hasten death in the elderly. Table 38–7 outlines management guidelines based on presenting symptoms. Figure 38–1 reviews the overall assessment and management of dyspnea in the geriatric patient at the end of life.

9= Case Study Management of Dyspnea in an Elderly Patient with Recurrent Head and Neck Cancer An 85-year-old man with recurrent squamous cell of the base of tongue presents to his palliative care team with increasing shortness of breath, which has grown progressively worse over the past week. The patient has been home with mild shortness of breath, which was

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Special Patient Populations High-risk factors identified

Table 38–7 BREATHES Program for Management of Dyspnea in the Elderly Palliative Care Patient B—bronchospasm. Consider nebulized albuterol and/or steroids. R—rales/crackles. If present, reduce fluid intake. If patient is receiving IV hydration, reduce fluid intake or discontinue. Consider gentle diuresis with Lasix 20–40 mg PO daily, ± spironolactone (Aldactone) 100 mg PO daily. E—eff usion. Determine on physical examination or chest x-ray. Consider thoracentesis or chest tube, if appropriate. A—airway obstruction. If patient is at risk or has had aspiration from food, puree solid food, avoid thin liquids, and keep the patient upright during and after meals for at least 1 hour. T—tachypnea and breathlessness. Opioids reduce respiratory rate and feelings of breathlessness as well as anxiety. Assess daily. If patient is opioid naïve, begin with morphine sulfate 5–10 mg PO q4h and titrate opioids 25–50 daily/every other day as needed. Consider an anxiolytic such as lorazepam (be aware of potential for paradoxical response) 0.5–2 mg PO bid–tid. Use of a fan may reduce feelings of breathlessness. H—hemoglobin low. Consider a blood transfusion if anemia is contributing to dyspnea. E—educate and support the patient and family during this highly stressful period. S—secretions. If secretions are copious, consider a trial of a scopalamine patch q72h, atropine 0.3–0.5 mg SC q4h PRN, glycopyrrolate (Robinul) 0.1–0.4 mg IM/SQ q4–12h PRN Sources: Adapted from Storey and Knight (1996), reference 217; Ripamonti (1999), reference 218; Tobin (1990), reference 219; Kuebler (1996), reference 220.

Dyspnea present; perform focused physical assessment.

Identify precipitating causes and etiology.

Exercise/overexertion Anxiety Allergens Infection Sleep apnea GERD Pneumonia

COPD Cancer Renal disease Pulmonary fibrosis Pulmonary embolism Pulmonary hypertension Congestive heart failure

Cardiomyopathy Fluid overload Pericardial effusion Anemia Liver disease DVT

Evaluate overall goals of care and setting. Determine if transfer to inpatient facility is indicated. Implement interventions based on symptoms and goals of care.

Pharmacological: Bronchodilators Xanthines Oxygen Opioids Antibiotics Corticosteroids Anticholinergics Diuretics Anxiolytics Transfusion

Nonpharmacological: Cognitive behavioral approaches Complementary therapy Music/Art therapy Change position Abdominal/diaphragmatic breathing Pursed lip breathing Limit activity Increase air circulation Humidification Cool room

Interventions effective? Yes

Continue to assess and adjust medications as needed.

No

Symptoms progressive and irreversible; re-evaluate management.

Provide more sedating interventions with lorazepam, midazolam, propofol.

managed succesfully with 4 milligrams of intermittent hydromorphone every 4 hours prn. In the past he has received chemoradiation therapy to the tumor, and treatment concluded about 1 year ago. About 4 months ago he started experiencing pain in the lower right neck with some swelling, and imaging studies revealed recurrent disease. He has declined further radiation therapy because of the fear of mucositis and says he is ready to die. He is a very religious man and has put his “trust in God.” A right pleural eff usion was found 1 month ago, and he underwent two thoracentesis (the last one 5 days ago, when 1500 mL of pleuritic fluid was drained). Past medications for dyspnea include 30 milligrams of morphine sulfate administered orally every 4 hours, which had produced sedation and delirium. He is also receiving 30 milligrams of prednisone orally two times daily for bronchospasm, and an albuterol inhaler (which he occasionally uses), senna, and a stool softener. Physical examination has revealed breath sounds decreased

FIGURE 38–1. Dyspnea management in the geriatric patient at the

end of life.

bilaterally, an inspiratory stridor, and mild bilatoral wheezing. His respiratory rate is 26 per minute at rest, and he complains of feeling breathless and anxious. Pulse oximetry was 92 at rest, and he is using nasal oxygen (4 L/min). He is also very fatigued and cannot sleep at night. He is refusing further aggressive intervention and has signed a home DNR order. o]

At a Glance Assessment • Determine goals of care and clarify understanding between patient, family, and health-care providers. • Management of dyspnea in the elderly patient at the end of life should be focused on the physical,

Elderly Patients psychological, and spiritual domains of care. Relief of suffering should be a primary goal. • Comprehensive management of dyspnea in the elderly patient at the end of life includes use of opioids, anxiolytics/sedatives, steroids and nonpharmacological interventions.

Suggestions for Assessment and Intervention 1. Determine the etiology of the dyspnea in this patient. In this elderly cancer patient, dyspnea is multifactorial, including tumor progression in the upper airway as well as progression of pleural effusions. A chest X-ray has been done and has again revealed recurrent right pleural eff usion. An X-ray of the neck has revealed progression of the tumor, compressing the trachea. 2. Review goals of care with the patient. It is clear to the staff that this patient is determined to not undergo further aggressive treatment, but he is willing to have X-rays or another thoracentesis if it would make him feel better. He wants to die at home, and his family is supportive of this decision. 3. He is given 10 milligrams of decadron every 6 hours in an attempt to reduce edema caused by the neck mass that is compressing his trachea. The members of the palliative care team feels that his life expectancy is very short, and their goal is to prevent the need for a tracheostomy . 4. Excessive fatigue is present in this patient, and a complete blood count has revealed a mild anemia, with no indication for a transfusion. A trial of a low-dose stimulant such as Ritalin administered 2.5 to 5 milligrams orally daily or twice a day is discussed but providers feel it should be used if the decadron fails to produce any stimulating effect on his fatigue . 5. The patient is receiving hydromorphone for dyspnea. The dose is increased by 50 to a dose of 6 milligrams orally every 4 hours to treat the tachypnea. 6. An anxiolytic– (0.5 mg of lorazepam) is prescribed orally every 4 to 6 hours with rescue doses if necessary. 7. Consider the benefit versus burden of additional interventions that are employed. The patient has agreed to medical interventions as well as another thoracentesis if necessary. The use of an intermittent draining pleural catheter has been discussed, and the patient has said he would consider it. The members of the palliative care team feel he can be evaluated in 3 days to determine if there is a need for a thoracentesis or indwelling pleural catheter. 8. Reduce the need for physical exertion. The patient has 24-hour home care, including family support, and an 8-hour daily home health aide. He has a hospital bed at home, is using a wheelchair, and has a bedside commode.

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9. Address anxiety, providing support and reassurance. Reassure patient that symptoms can be controlled. The patient’s son has asked what will happen if the patient becomes worse at home. The members of the palliative care team review the potential need for increasing sedating medications that would produce sedation at the end of life. The son feels greatly reassured. 10. Incorporate nonpharmacological interventions (e.g., progressive relaxation, guided imagery, and music therapy). The patient felt dyspnea relief from a fan, and used classical music to assist with his anxiety. 11. The patient is followed daily by a member of the palliative care team. Within 48 hours he feels better, his stridor has improved markedly, and he is able to drink some fluids. The steroids are keeping him up at night, so a small dose of a neuroleptic is added at bedtime, which is effective. He is still dyspneic after 5 days, and it is believed that an draining pleural catheter might further benefit him. A pigtail catheter is inserted and immediately drains 1000 milliliters. Over the next 2 weeks, the catheter drains approximately 300 milliliters daily, which allows him a great deal of symptomatic relief. The steroids are continued at the present dose, and the stridor is successfully treated. The patient dies 2 1/2 weeks later at home, in his bed.

o]

Treatment of Pain The physiological changes accompanying advanced age have been discussed in this chapter; however, it is important to emphasize that the elderly are more sensitive to both the therapeutic and toxic effects of analgesics.

Acetaminophen Acetaminophen is one of the safest analgesics for long-term use in the older population and should be used for mild-tomoderate pain. It is particularly useful in the management of musculoskeletal pain and is often used in combination with opioids. In older patients with normal renal and liver function, it can be used safely and is highly effective for the treatment of osteoarthritis. In the setting of renal insufficiency, hepatic failure, or with patients who are drinking heavily or have a history of alcohol abuse, avoidance of acetaminophen is recommended.

Nonsteroidal Antiinflammatory Drugs Nonsteroidal antiinflammatory drugs (NSAIDs) are useful as initial therapy for mild-to-moderate pain and can be used as an additive with opioids and nonopioids. In particular, NSAIDs are useful in the treatment of nociceptive pain related to bone or joint disease. When used concurrently

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Table 38–8 Common Opioids and Their Metabolites Opioid

Metabolite

Comment

Codeine

Codeine-6 glucuronide

May cause more nausea, vomiting, and constipation than other opioids.

Oxycodone Dextropropoxyphene

Noroxycodone, oxymorphone Norpropoxyphene

Methadone

Metabolite inactive

Hydromorphone Fentanyl

H3G, H6G Inactive and nontoxic metabolites

Morphine Meperidine

M3G, M6G Normeperidine

with opioids, lower doses of opioids may be an additional benefit. NSAIDs are useful as initial therapy for mild-tomoderate pain and can be used as an additive with opioids and nonopioids. NSAIDs affect analgesia by reducing the biosynthesis of prostaglandins, thereby inhibiting the cascade of inflammatory events. They also have effects on pain receptors and nerve conduction and may have central effects.115 The long-term use of traditional NSAIDs, such as aspirin and ibuprofen, are associated with gastrointestinal ulceration, renal dysfunction, and impaired platelet aggregration.116,117 The cyclooxygenase-2 (COX-2) enzymatic pathway is induced by tissue injury or by other inflammation-inducing conditions.118 There appears to be less risk of gastrointestinal bleeding with short-term use of the COX-2 selective NSAIDs.119 In particular,120–123 NSAIDs are useful in the treatment of nociceptive pain related to bone or joint disease. When used concurrently with opioids, lower doses of opioids may be an additional benefit. Elderly patients with a history of ulcer disease are most vulnerable to the side effects of these drugs, which can cause renal insufficiency and nephrotoxicity. Cognitive dysfunction has been reported with the use of salicylates, indomethacin, naproxen, and ibuprofen. Also, NSAIDs are problematic in elderly patients with congestive heart failure, peripheral edema, or ascites. In the palliative setting, consideration should be given to the risks versus the benefits to the elderly patient. If, for example, the use of NSAIDs provides effective analgesia and the life expectancy of the patient is limited (days to weeks), then it is probably prudent to initiate this therapy.

Opioids In older patients with moderate-to-severe pain who have limited prior treatment with opioids, it is best to begin with a short-half-life agonist (morphine, hydromorphone,

Routine use is not advised because metabolites can accumulate with repetitive dosing. Pharmacokinetics are variable. Renal excretion is pH dependent; fecal excretion accounts for the greatest part of clearance. Eliminated by the kidney. Highly lipophilic, which enables it to be absorbed through the skin. Less than 10 excreted in the urine. M6G accumulates in the blood and crosses the blood–brain barrier. Half as potent an analgesic as meperidine and 2 to 3 times more potent as a convulsant; toxicity is not reversed by naloxone; avoid chronic use because normerperidine accumulates with repeated dosing.

oxycodone). Shorter half-life opioids are generally easier to titrate than longer half-life opioids such as levorphanol or methadone and may have fewer side effects in the elderly. Recent research has demonstrated the importance of both liver biotransformation of metabolites and renal clearance of these metabolites. Most opioids are converted to substances that may have a higher potency than the parent compound or produce more adverse effects with repeated dosing and accumulation.124 Table 38–8 outlines the most commonly used opioids and their metabolites. When prescribing opioids in the older population, it is be helpful to obtain baseline renal function studies. A normal serum creatinine does not indicate normal renal function; it is prudent to determine a 24-hour creatinine clearance to accurately determine renal function. Morphine is the most commonly prescribed opioid because of its cost and ease of administration. Morphine can be administered as an immediate-release tablet or a liquid formulation in a controlled-release tablet administered every 8 to 12 hours (MS Contin) or every 24 hours (Avinza, Kadian). Plasma clearance of morphine decreases with age;125 therefore, elderly patients should be carefully monitored for any signs of sedation or confusion. In the setting of impaired renal function, morphine should not be used in the elderly patient. When administering morphine for long-term use, the metabolites of morphine—morphine-3 and -6 glucuronide— may accumulate with repeated dosing, especially in the setting of impaired renal or hepatic function.125–127 If, after a few days of treatment with morphine, the elderly patient develops side effects that include sedation, confusion, or respiratory depression, it may mean that there is an accumulation of these metabolites, and the opioid should be changed. Hydromorphone (Dilaudid) is available in oral tablets, liquids, and parenteral formulations and will soon be available in a long-acting preparation. The main metabolite of hydromorphone (H3G) may lead to myoclonus, hyperalgesia, and seizures,

Elderly Patients especially in the setting of renal failure.128 Oxycodone is a synthetic opioid available in a long-acting formulation (OxyContin), as well as immediate-release tablets and a liquid preparation. In the oral formulation, it is one-third to one-half more potent than oral morphine. The cost of OxyContin may be prohibitive to some patients on limited incomes. Fentanyl is a highly lipophilic soluble opioid, which can be administered spinally, transdermally, transmucosally, and intravenously. Transdermal fentanyl (Duragesic) is especially useful when patients cannot swallow, have difficulty adhering to an oral regimen, or have side effects to other opioids. There is some suggestion that transdermal fentanyl may produce less constipation when compared with long-acting morphine. Fever, cachexia, obesity, and ascites may have a significant effect on absorption, predictability of blood levels, and clinical effects.129,130 The fentanyl patch can be used safely in the older patient, but patients should be monitored carefully. Prior to initiating therapy with the transdermal patch, one should begin with a short-acting opioid (5 mg of oxycodone every 4 hours) and to monitor the patient over 5 to 7 days. If this dose is tolerated, conversion to a 25-mcg fentanyl patch can be safely done. If, after initiation with the fentanyl patch, side effects develop, it is important to remember that they may persist for long periods (hours or even days) after the patch is removed. However, the frail elderly, who have experienced multiple side effects from other opioids, may not do well with this route of administration. One way of providing for rescue dosing is the oral transmucosal route of administration. Fentanyl citrate may be attempted; it is composed of fentanyl on an applicator that the patient massages or rubs against the oral mucosa or a lozenger that is placed between the gum and the teeth. Absorption occurs rapidly, and many patients begin to have relief after 5 to 10 minutes. This formulation is especially useful in settings where rapid onset of analgesia is needed, such as with severe breakthrough pain or during a procedure or dressing change. This formulation is only to be used in opioid-tolerant patients who are already receiving an around-the-clock opioid to manage baseline pain. Adults should start with 200 mcg, and the dose should be titrated as needed.131 Methadone can be safely used in the older adult, provided they are carefully monitored. Methadone is a mureceptor agonist with a long half-life (ranging from 8 to 90 hours) and allows for prolonged dosing intervals.132 The long half-life increases the potential for drug accumulation and side effects before the development of steady state blood levels, thus placing the patient at risk for sedation and possible respiratory depression. Therefore, close monitoring of these patients should be done during the first 7 to 10 days of treatment. When initiating the drug, obtaining a baseline EKG is recommended because of the possibility of QT wave abnormalities.133,134 and the development to a specific type of ventricular fibrillation called torsades de pointes.133,134 Methadone may bind as an antagonist to the N-methyl-Daspartate (NMDA) receptor, which may be useful in the management of neuropathic pain.135 From a cost perspective, it is

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Table 38–9 Opioid Use in the Elderly Patient at the End of Life Opioid

Comments

Morphine

Observe for side effects with repeated dosing; continuous or sustained release may not be tolerated even after a trial with immediate release Short half-life; may be safer than morphine Avoid use—metabolite causes CNS and cardiac toxicity May cause excessive constipation, nausea and vomiting Use cautiously, long half-life may produce excessive side effects; requires careful monitoring, especially during first 72 hours after initiation. If it is indicated, it may be safer to use a shortacting opioid as a rescue dose Opioid agonist/antagonist should not be used; may cause CNS side effects (delirium, agitation) Long half-life (12–24 hr) is used cautiously in the frail elderly or in elderly with multiple comorbid conditions; cannot titrate easily. If side effects develop, will last at least 12 to 24 hours after patch is removed Avoid use in elderly because of CNS toxicity Useful for moderate to severe pain control

Hydromorphone (Dilaudid) Propoxyphene (Darvon, Darvocet) Codeine Methadone

Pentazocine (Talwin)

Transdermal fentanyl patch

Meperidine Oxycodone

Source: Adapted from McCaffery and Pasero (1999), reference 221.

one of the less costly opioids, making it appealing to some patients on limited incomes. As in younger individuals, the use of meperidine for the management of chronic cancer pain is not recommended. The active metabolite of meperidine is normeperidine, which is a proconvulsant. The half-life of normeperidine is 12 to 16 hours. With repeated dosing, accumulation of normeperidine can result in central nervous system excitability, with possible tremors, myoclonus, and seizures. Table 38–9 outlines guidelines for opioid use in the elderly patient. Parenteral routes of administration should be considered in elderly patients who require rapid onset of analgesia or require high doses of opioids that cannot be administered orally. They may be administered in a variety of ways, including the IV and subcutaneous route, using a patientcontrolled analgesia (PCA) device. A careful evaluation of the skin in the elderly patient should be done before initiation of subcutaneous administration. If the patient has

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Table 38–10 Indications for a Subcutaneous or Intravenous PCA Pump • Oral route not tolerated—patient cannot swallow (postoperative nausea/vomiting) • Oral absorption impaired or variable • Bowel obstruction—partial or complete • Escalating pain that needs to be managed quickly • Severe breakthrough or incident-related pain • Dose-limiting side effects with other routes of administration exist • When managing pain and other symptoms at the end of life • Suspected misuse/abuse of other opioids via other routes of administration

excessive edema, a very low platelet count, or skin changes related to chronic steroid use, then absorption may be impaired or subcutaneous tissue may not sustain repeated dosing, even with a permanent indwelling butterfly catheter. Infusion devices with the capability of patient-administered rescue dosing can be safely used in the elderly cancer patient provided that they have clear understanding on how to use the rescue button. It is important to remember that severe cognitive impairment should not deter the use of IV administration, especially in the elderly patient at the end of life. In patients who are cognitively impaired, the pca button should be removed. Choice of analgesics and routes of administration must be based on individual assessment of each patient. Table 38–10 outlines indications for a subcutaneous or IV PCA pump.

Dose Titration After initiation with an opioid, a stepwise escalation of the opioid dose should be performed until adequate analgesia or intolerable side effects develop. The increased sensitivity of the elderly to opioid side effects suggests that careful titration and escalation should be performed.136 It is generally safe to begin with a dose that is 25 to 50 less than the dose for a younger adult, especially if the elderly patient is frail or has a history of side effects from prior opioid use. Generally, it is safe to titrate opioids 25 to 50 every 48 hours, although a less aggressive approach may be necessary in elderly patients.

9= Case Study A 90-Year-Old Woman with Metastatic Breast Cancer An 90-year-old woman with metastatic breast cancer and extensive bone disease is receiving 15 milligrams of morphine sulfate orally every 4 hours and is reporting inadequate pain relief, with a pain intensity of 7 out of 10. She is also is experiencing intermittent nausea and

vomiting. She was previously on tramadol (50 mg) every 6 hours but had worsening pain in the low back and ribs and was rotated to morphine about 3 days ago. Since starting on morphine, she has reported having bad dreams, confusion, and agitation, which has been corroborated by her family. She has been in bed most of the time. The family also reports constipation, with no bowel movement for 5 days. Today she was admitted to the local emergency room and was given lorazepam (1 mg IV) for agitation and morphine sulfate (2 mg IV) two times for pain. Her confusion and agitation worsene and she is admitted. The patient mentions that she had a DNR order several months ago when she had fallen at home and fractured a rib. The family wants an aggressive evaluation for the delirium, and a brain MRI is done and is normal except for some agerelated changes. Once on the unit, she becomes more agitated and complains of severe pain. An opioid infusion of morphine sulfate (1 mg/hr) is started but fails to produce anagesia and her agitation worsens. A psychiatry consult is called and the patient is started on ativan (1 mg every 6 hours) around the clock. By day 2 the patient is worse, with worsening agitation and delirium. o]

At a Glance Assessment and Management • A comprehensive assessment of the elderly patient with delirium should include a determination of the etiology of delirium, including common predisposing factors (fever, infection, tumor, altered metabolism of drugs, alcohol, comorbid conditions, urinary/bowel retention). Often the cause is multifactorial. • A careful history of onset and duration of symptoms as well as severity of symptoms should be determined, and dementia should be ruled out. A Mini Mental Status Exam is done and is performed at intervals throughout the course of her delirium. • When possible, the underlying cause should be identified and treated. • In this patient, the goals of care are reviewed with the family members, who decide to aggressively try to reverse the delirium. The patient is already DNR. • Pharmacological management should always include administration of a neuroleptic as a first line treatment. • Incorporate nonpharmacological interventions when appropriate. Case Analysis. What evaluation of this patient should be done and how should her delirium be managed? 1. The etiology of the confusion should be determined. A careful review of all medications should be done and all centrally acting medications discontinued. In

Elderly Patients

2.

3.

4.

5.

6. 7. 8. 9.

10.

11.

this patient, the only recent additional medication is morphine. Appropriate laboratory data (electrolytes, renal and liver function) should be obtained to determine if there is any metabolic etiology for her confusion. Electrolytes and liver function studies are normal. BUN is 65 and serum creatinine is 2.3, which is doubled from 3 months ago. A review of all medications is done, with careful attention to centrally acting medications. There does not seem to be any other etiology to the delirium other than the recent switch to morphine. In this patient a change in opioid is indicated, because morphine metabolites— namely morphine-6 glucuronide—may be accumulating in the setting of altered renal function, causing her delirium. The lorazepam is stopped because it is felt to be contributing to her agitation, and the patient is started on a neuroleptic: haloperidol (1 mg every 6 hours) around the clock. An evaluation for the etiology of the nausea and vomiting is done. A history of onset, duration, temporal characteristics, and exacerbating/relieving factors is obtained from her family. A thorough physical examination is performed, with special attention to the abdominal and rectal examination. The physical examination reveals that bowel sounds are present, and the rectal exam reveals retained feces in the rectal vault. An abdominal X-ray is done and shows extensive retained feces but no bowel obstruction. It has been determined that the etiology of the nausea and vomiting is related to severe constipation. The severe constipation may also be contributing to the development of confusion. The decision is made to switch the patient to another opioid. In selecting another opioid, factors to consider include half-life, duration of action, and route of administration. The decision is made to start the patient on a continuous infusion of fentanyl. The equianalgesic dose table should be used as a guide. Because of the existence of incomplete cross-tolerance between drugs, advanced age, and cognitive changes, the alternative opioid should be reduced by 50. Disimpaction is attempted but cannot be tolerated. A bowel regimen of an oil-retention enema followed by a Fleets enema is tolerated, and the patient has a large bowel movement. The plan is to start the patient on an oral regimen of Senokot (2 tabs orally twice a day) and Colace (300 mg orally daily) when the delirium clears. Within 24 hours of discontinuance of the morphine and lorazepam, the patient’s mental status begins to clear and her agitation calms significantly. By day 3 she is almost back to baseline and out of bed.

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The Use of Adjuvant Analgesics for Pain Several nonopioid medications have been found to be analgesic. These drugs alter, attenuate, or modulate pain perception. They may be used alone or in combination with opioids or nonopioid analgesics to treat many different pain syndromes, including neuropathic pain. Included in this category are antidepressants, anticonvulsants, N-methyl-d-aspartate (NMDA) antagonists, corticosteroids, and local anesthetics. All of these medications have side-effect profi les that can be especially harmful to the older patient, and careful monitoring is required. Tricyclic antidepressants (TCAs) have been the most widely studied class of adjuvant medications for neuropathic pain. The action of these drugs probably results from interruption of norepinephrine and serotonin-mediated mechanisms in the brain.137 Side effects—namely the anticholinergic side effects— often limit the use of these medications. Dry mouth, urinary retention, constipation, blurred vision, tachycardia, and delirium are some of the more common side effects. Nortriptyline, a secondary amine, may be preferred in the older adult because it produces less orthostatic hypotension than amitriptyline, and desipramine may have lesser anticholinergic side effects than amitriptyline. TCAs are contra-indicated in patients with coronary artery disease, narrow-angle glaucoma, and significant prostatic hyperplasia. When initiating therapy, start the dose low, monitor patients, and titrate the dose slowly. Anticonvulsants are used to control sharp, shooting, burning, electric, and stabbing pain, which are typical sensations found in patients with neuropathic pain. Their analgesic effect is believed to be related to the slowing of peripheral nerve conduction in primary afferent fibers.138 Several different anticonvulsants are useful for neuropathic pain, including carbamazepine, gabapentin, phenytoin, and valproic acid. Carbamazepine should be used cautiously because of the side-effect profile—blood dyscrasias can occur.139 Gabapentin is believed to have several different mechanisms of action, including NMDA antagonist activity. The most effective analgesic doses range from 900 milligrams to 3600 milligrams per day, in divided doses every 8 hours.140,141 Evidence supports the efficacy of gabapentin in several painful disorders, including diabetic neuropathy,141 postherpetic neuralgia,142 thalamic pain, spinal cord injury,142 and restless legs syndrome.143 The starting dose in elderly patients can begin as low as 100 milligrams a day, titrated by 100 milligrams a day every 3 days, until the onset of analgesia. The most commonly reported side effects of gabapentin are somnolence, dizziness, ataxia, tremor, and fatigue. More recently, pregabalin, an analog of the neurotransmitter γ-aminobutyric acid (GABA), is being used to treat neuropathic pain, including postherpetic neuralgia and diabetic peripheral neuropathy.144,145 Other anticonvulsants that have been used in the management of neuropathic pain include lamotrigine (Lamictal), topiramate (Topamax), zonisamide (Zonegran), and levetiracetam (Keppra). NMDA antagonists are believed to block the binding of excitatory amino

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acids, such as glutamate, in the spinal cord. Medications that inhibit this receptor interfere with the transmission of pain across the synaptic area. Methadone, ketamine, and dextromethorphan are all NMDA antagonists believed to have analgesic effects in the management of neuropathic pain.146–148 Ketamine should be used with caution because of its psychomimetic effects, and routine use is not recommended. At the end of life, it has been used in the management of refractory neuropathic pain.149 Corticosteroids have specific and nonspecific effects in managing pain, including treatment of painful nerve or spinal cord compression, reducing tissue edema and inflammation, and by lysis of some tumors. The mechanism of effect is by inhibition of prostaglandin synthesis and decreasing edema surrounding neural tissues.150 Corticosteroids are the standard treatment for malignant spinal cord compression (dexamethasone 16–96 mg/day). They may be useful in the management of painful malignant lesions involving the brachial or lumbosacral plexus, hepatic enlargement, distension, and pain.151,152 Corticosteroids are also helpful in the management of bone pain as well as in the treatment of bowel obstruction.153,154 Corticosteroids may also be useful in the management of nausea and vomiting. In the older adult, corticosteroids should not be used concurrently with NSAIDs because of the potential increased risk of bleeding. Local anesthetics have been shown to relieve pain when administered orally, topically, intravenously, and intraspinally. Mexiletine has been useful when anticonvulsants have failed.155 Topical local anesthetic gels and topical Lidoderm patches have been useful in the management of postherpetic neuropathy 156 and other neuropathic pain syndromes, including peripheral neuropathy, postthoracotomy pain, stump neuroma, complex regional pain syndrome, radiculopathy, and postmastectomy pain.157 Lidoderm patches (5) should be applied 12 hours on–12 hours off, within a 24-hour period. They have an excellent safety profi le; systemically active serum levels of lidocaine do not occur, and patients can cut the patches to fit small areas. In many older patients, the patches may provide an opioid-sparing effect— the patient may use less opioid analgesia within a 24-hour period. Intravenous lidocaine boluses at doses of 1 to 5 milligrams/kilogram (maximum 500 mg) administered over 1 hour, followed by a continuous infusion of 1 to 2 milligram/ kilogram/hour have been reported to reduce intractable neuropathic pain in the palliative care and hospice setting.158 Bisphosphonates inhibit osteoclast-mediated bone resorption and alleviate pain from metastatic bone disease and multiple myeloma.159,160 Analgesic effects can occur in 2 to 4 weeks and, therefore, might not be suitable for patients at the end of life. Pamidronate disodium and zoledronic acid are used in patients with metastatic lesions from breast and prostate cancer. Pamidronate sodium has been shown to reduce pathological fractures in patients with breast cancer.161 Patients should be monitored with serum calcium levels because hypocalcemia can occur. Calcitonin may be given subcutaneously or intranasally to relieve pain associated with osteoporotic fractures.162 Usual

doses are 100 to 200 IU/day and are usually well-tolerated. At the end of life, this is probably not a practical or helpful intervention. Radiation therapy is extremely helpful in relieving painful bone lesions. In many instances, single-fraction external beam therapy can be used. Onset of relief can be fairly rapid, often within days of treatment, and may be a helpful intervention when patients are having side effects to opioid therapy. Unless a single fraction is considered, at the end of life it is not a practical intervention. Radionuclide therapy is often helpful when there is widespread bony metastatic disease that cannot be easily targeted with localized radiotherapy.163 Strontium (Metastron) is a radiopharmaceutical calcium analog taken up by the skeleton into active sites of bone remodeling and metastasis. A large clinical trial demonstrated that strontium was an effective adjuvant to local radiotherapy and that it reduced disease progression, decreased new sites of pain, and decreased systemic use.164 The latency of response can be as long as 2 to 3 weeks, and patients should continue their opioid therapy. Because of this delayed onset of analgesia, patients who are actively dying are not candidates. Side effects associated with strontium use include thrombocytopenia and leucopenia. Samarium lexidronam (Quadramet) is a radiopharmaceutical that has an affinity for bone and concentrates in areas of bone turnover with hydroxyapatite, which is useful for metastatic bone pain. Patients should also be instructed that a transitory pain flare can occur, and analgesics may need to be titrated.

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Invasive Approaches for the Management of Pain Anesthetic and neurosurgical approaches are indicated when conservative measures using opioids and adjuvant analgesics have failed to provide adequate analgesia or when the patient is experiencing intolerable side effects. The use of these approaches is not contra-indicated in the older adult. The clearest indication for these approaches is intolerable central nervous system toxicity. These procedures include regional analgesia (spinal, intraventricular, and intrapleural opioids), sympathetic blockade and neurolytic procedures (celiac plexus block, lumbar sympathetic block, cervicothoracic [stellate] ganglion block), or pathway ablation procedure (chemical or surgical rhizotomy, or cordotomy). At the end of life, these approaches may be useful in some older patients who have intractable pain that cannot be managed with systemic treatment.

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Nonpharmacological Approaches: Complementary Therapies Physical and psychological interventions can be used as an adjunct with drugs and surgical approaches to manage pain in the older adult. These approaches carry few side effects and,

Elderly Patients when possible, should be tried along with other approaches. In selecting an approach in the dying patient, factors that should be considered include physical and psychological burden to the patient, efficacy, and practicality. If the patient has weeks to live, these strategies may allow for a reduction in systemic opioids and diminish adverse effects. Cognitive-behavioral interventions include relaxation, guided imagery, massage, distraction, and music therapy. The major advantages of these techniques are that they are easy to learn, safe, and readily accepted by patients. Cognitive and behavioral interventions are helpful to reduce emotional distress, improve coping, and offer the patient and family a sense of control. Other physical interventions such as reflexology and massage therapy have been shown to relieve pain and produce relaxation.164,165

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End-of-Life Pain Management in the Nursing Home: A Special Challenge Challenges in end-of-life care for nursing home residents are multiple, and for many the disease trojectory is complicated by multiple illnesses, limited family support, cognitive changes, and communication difficulties. Many patients do not have assigned health-care agents, and it is often the case that endof-life discussions are not held until an emergency occurs. The complexity of needs for the elderly patient necessitates that the geriatric clinician have palliative care expertise.166 Conventional models of palliative care often focus on the cancer patient, and this may not meet the needs of elderly patients not suffering from cancer, who often have multiple comorbid illnesses and a different trajectory at the end of life.167 Cognitively impaired nursing home residents present a special barrier to pain assessment and management.168–172 Residents of nursing homes exhibit very high rates of cognitive impairment.173 Most studies of nursing home residents reveal that cognitively impaired nursing home residents are prescribed and administered significantly less analgesic medication—both in number and in dosage of pain drugs—than their more cognitively intact peers.174 Reasons for lack of attention to residents’ pain include inadequate assessment tools and little formal staff education in pain management or palliative care. Studies suggest that persons enrolled in nursing home hospice programs, many of whom are dying or with dementia, are more likely to have better pain control and symptom management.175 Inadequate pain assessment and management in nursing homes is widespread, and for many patients at the end of life, unnecessary treatments and interventions are often employed.176 Assessment of pain in cognitively impaired elderly at the end of life remains a special challenge. Mild-to-moderate cognitive impairments seem to be associated with a decrease in propensity to report pain.174 In severely cognitively impaired individuals, assessment is often difficult because these

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individuals frequently cannot verbalize their reports of pain. In their evaluation of 217 elderly patients with significant cognitive impairment, Ferrell and colleagues177 found that 83 could complete at least one pain scale, with the McGill Present Pain Intensity Scale having the highest completion rate, and 32 were able to complete all of the scales presented. The best way to assess pain is to ask the individual. In the cognitively impaired elderly, it is difficult to assess pain. The ability of caregivers, either family or staff, to assess pain in this population is crucial. In one study of caregiver perceptions of nonverbal patients with cerebral palsy, more than 80 of the caregivers used aspects of crying and moaning to alert them to a pain event.177 In another study evaluating a measurement tool for discomfort in noncommunicative patients with advanced Alzheimer’s disease, indicators of pain included noisy breathing, negative vocalizations, facial expression (content, sad, or frightened), frown, and body language (relaxed, tense, or fidgeting).169 There is some evidence that cognitively impaired elderly individuals’ facial expressions of pain depend on the cause of the underlying cognitive disorder, including hemispheric dysfunction and type of dementia; however, facial expressions and body language can be very useful indicators of pain. In one study evaluating the impact of a Palliative Care Educational Resource Team on nursing home staff, a comprehensive program was offered to 108 nursing staff and 61 certified nursing assistants. The program lasted 4 days. Results in pre- to postknowledge increased, and practice changes as evidenced by supervisor evaluations suggested improvement. The authors suggested alternative ways to deliver the content, including use of electronic and train-the-trainer programs.178 In other studies looking at cancer patients admitted to nursing homes, evidence suggests that regardless of the site of cancer, patients receiving hospice care appear to obtain better pain relief than those not enrolled.179 Recommendations for improving end-of-life care to cancer patients in nursing homes include discussions of goals of care, implementation of clinical pathways for pain and nonpain cancer-related symptoms.180

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Cognitive Changes: The Challenges of a Diagnosis of Delirium or Dementia Delirium may often be superimposed upon dementia in the elderly patient. In clinical practice, it is important to distinguish whether the delirious patient has an underlying dementia. When an elderly demented patient becomes delirious, it should be assumed that an organic precipitating factor— metabolic, drug-induced, acute illness—is the cause, and the patient should be evaluated for the etiology and treated. The distinction is not always apparent. Both delirium and dementia feature global impairment in cognition. Obtaining a careful history from family members or caregivers to learn about the onset of symptoms is

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probably the most important factor in making the distinction. Generally, acute onset of cognitive and attention deficits and abnormalities, whose severity fluctuates during the day and tends to increase at night, is typical of a delirium. Delirium, in general, is a transient disorder that seldom lasts for more than a month, whereas dementia is a clinical state that lasts for months or years.181 Dementia implies impairment in short- or long-term memory associated with impaired thinking and judgment, with other disturbances of higher cortical function or with personality change.182 Older adults with chronic illnesses are especially vulnerable to delirium as a result of inter- and intrahospital transfers, intensive care unit psychosis, and delirium associated with medication errors. Alzheimer’s Dementia is the most prevalent progressive neurodegenerative disease. It begins with minute memory impairment and ultimately leads to the loss of all mental and physical function. A person with Alzheimer’s Dementia lives an average of 8 years from diagnosis and could live as many as 20 years. There is some evidence to suggest that rate of deterioration in activities of daily living correlate with the burden of neurofibrillary tangle count.183 The prevalence of people with Alzheimer’s Dementia in the United States is estimated to be more than 4 million.184 Currently available therapies, such as the anticholinesterase inhibitors, may delay progression of Alzheimer’s Dementia and defer requirement for institutionalization but have limited impact on memory; however, if uncovered by payers, they represent considerable expense to caregivers who are also required to pay for formal homecare in the absence of “skilled need” for homecare.185 The prediction of survival in end-stage dementia is particularly challenging for hospice providers who must make difficult decisions regarding eligibility for the Medicare hospice benefit when patients “outlive” the hospice benefit. Conversely to patients with terminal cancer, in which decline is typically a straight downward course, the disease trajectory for patients with end-stage dementia is marked by slow deteriorations in function over several years, with reduced levels of activities of daily living interspersed with periods of marked deterioration in parallel with urosepsis and pneumonia; this is in contrast to cancer, where death is usually heralded by a period of pronounced functional deterioration in the last 3 months of life.186

Delirium in the Elderly Patient at the End of Life: Prevalence, Etiologic Factors and Treatment Prevalence Delirium is a frequently occurring consequence of advanced cancer and is characterized by disturbances in arousal, perception, cognition, and psychomotor behavior.187,188 In all settings, delirium is a common symptom in the elderly medically ill and cancer patient. The presence of delirium contributes significantly to increased morbidity and mortality. Estimates of the prevalence of delirium range from 25 to 40 in cancer patients at some point during their disease,

and in the terminal phases of disease, the incidence increases to 85.187–189 In elderly hospitalized patients, delirium prevalence ranges from 10 to 40 and up to 80 at the end of life. One of the major problems in the treatment of delirium in the elderly patient is lack of assessment by hospital staff, especially if the patient is quiet and noncommunicative. Delirium can be categorized into three clinical subtypes, based on either motor or arousal disturbances: hypoactive, hyperactive, and mixed. The hypoactive type is characterized by psychomotor retardation, lethargy, sedation, and reduced awareness of surroundings.190 The hyperactive subtype is more commonly characterized by restlessness, agitation, hypervigilence, hallucincations, and delusions.191 Predisposing and Etiological Factors The etiology of delirium in the medically compromised and dying elderly patient is often multifactorial and may be nonspecific. In an elderly patient, delirium is often a presenting feature of an acute physical illness or exacerbation of a chronic one or of intoxication with even therapeutic doses of commonly used drugs.182 Numerous factors appear to make the elderly more susceptible to the development of delirium (Table 38–11). Delirium can result from the direct effects of the disease on the central nervous system, metabolic reasons (including organ failure), electrolyte imbalance, infection, hematological disorders, nutritional deficiencies, paraneoplastic disorders, hypoxemia, chemotherapeutic agents, immunotherapy, vascular disorders, hypothermia, hyperthermia, uncontrolled pain, sensory deprivation, sleep deprivation, medications, alcohol or drug withdrawal, diarrhea, constipation, or urinary retention. Various drugs can produce delirium in the medically ill or elderly patient (Table 38–12). In the palliative care setting, multiple medications are generally required to control symptoms at the end of life. Prospective data suggest a prevalence of delirium in 28 to 42 of patients with advanced cancer on admission to a palliative care unit.192 Given the projected increase in the numbers of elderly patients, health-care providers will encounter the need for management of delirium in the elderly more frequently. Other risk factors for the development of delirium include advanced age, cancer, preexisting cognitive impairment, hip fractures, and severe illness.193–195 In cancer patients, risk factors that have been identified include advanced age, cognitive impairment, low albumin level, bone metastases, and the presence of hematological malignancy. In one study that determined risk factors for delirium in oncology patients, specific etiological factors in the elderly were identified and included reduced cholinergic reserves of the brain, high prevalence of cognitive impairment and comorbid disease, visual and hearing loss, and impaired metabolism of drugs.196,197 The diagnosis of delirium in an elderly patient carries serious risks. Delirium produces distress for patients, families, and health-care providers. Depending on the severity of symptoms (fluctuating cognitive changes, hallucinations,

Table 38–11 Factors Predisposing the Elderly to Delirium Factor

Comments

Age-related changes in the brain

Atrophy of gray and white matter Senile plaques in hippocampus, amygdala, middle cerebral cortical layers Cell loss in frontal lobes, amygdala, putamen, thalamus, locus ceruleus Alzheimer’s disease, cerebrovascular disease

Brain damage Reduced regulation and resistance to stress Sensory changes Infection Intravenous lines Impaired pharmacokinetics Malnutrition Multiple comorbid diseases

Reduced thirst Reduction of protein-binding of drugs Polypharmacy

Visual, hearing loss Prolonged immobility, Foley catheters Pulmonary and urinary tract infections Reduced ability to metabolize and eliminate drugs Vitamin deficiency as a result of prolonged illness Folate deficiency may directly cause delirium Cancer and cardiovascular, pulmonary, renal, and hepatic disease Endocrine disorders, including hyperthyroidism and hypothyroidism Fluid and electrolyte abnormalities Hypovolemia Enhanced effect of opioids, diuretics Use of sedatives, hypnotics, major tranquilizers

Sources: Adapted from Lipowski (1989), reference 181, and Inouye et al. (1996), reference 193.

Table 38–12 Drugs Commonly Causing Delirium in the Elderly Classification

Example

Antidepressants Antihistamines

Amitriptyline, doxepin Chlorpheniramine, diphenhydramine, hydroxyzine, promethazine Chlorpropamide Digoxin, dipyridamole Propranolol, clonidine Barbiturates, chlordiazepoxide, diazepam, flurazepam, meprobamate Meperidine, pentazocine, propoxyphene Indomethacin, phenylbutazone Atropine, scopolamine Trimethobenzamide, phenothiazine Dilomine, hyoscyamine, propantheline, belladonna alkaloids Methotrexate, mitomycin, procarbazine, Ara-C, carmustine, fluorouracil, interferon, Interleukin-2, L-asparaginase, prednisone Prednisone, dexamethasone Cimetidine

Diabetic agents Cardiac Antihypertensives Sedatives Opioids Nonsteroidal antiinflammatory agents Anticholinergics Antiemetics Antispasmodics Antineoplastics Corticosteroids H2-receptor antagonists Lithium Acetaminophen Salicylates Anticonvulsant agents Antiparkinsonian agents Alcohol

Aspirin Carbamazepine, diphenylhydantoin, phenobarbital, sodium valproate Amantadine, levodopa

Source: Adapted from Lipowski (1989), reference 181.

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agitation, or emotional lability), patients often require one-toone observation, chemical, and—rarely—physical restraints. Falls and pressure ulcers are associated with the hyperactive and hypoactive subtypes.198 Delirium in terminally ill patients is a reliable predictor of approaching death within days to weeks, and hospital mortality rates among elderly patients with delirium range from 22 to 76.199 Given the projected increase in the numbers of elderly patients, health-care providers will encounter management of delirium in the elderly more frequently. To reduce the risk of polypharmacologically induced delirium, it is prudent to add one medication at a time, evaluating its response, before adding another medication. Delirium in the elderly patient is often undertreated for several reasons, including lack of assessment tools, inadequate knowledge of early signs of confusion, and inadequate time spent with the patient to determine cognitive function— all factors that lead to underdiagnosis. In addition, behavioral manifestations of delirium may include a variety of symptoms that may be interpreted as depression or dementia. Inouye established a multifactorial model of delirium in the elderly, with baseline predisposing factors and the addition of various insults.194 The factors that have been identified to be contributory to baseline vulnerability in the elderly include visual impairment, cognitive impairment, severe illness, and an elevated blood urea nitrogen/creatinine ratio of 18 or greater. Other factors that have been identified in the elderly include advanced age, depression, electrolyte imbalance, poor functional status, immobility, Foley catheter, malnutrition, dehydration, alcohol, and medications, including neuroleptics, opioids, and anticholinergic drugs. Finally, delirium in an elderly patient is often a precursor to death and should be viewed as a grave prognostic sign.200 Alcohol withdrawal may be a cause of delirium in the elderly. In one study, organic mental syndromes were diagnosed in more than 40 of elderly alcoholics admitted for alcohol abuse, and delirium was found in about 10 of these.201 Illness, malnutrition, or concurrent use of a hepatotoxic drug or one that is metabolized by the liver may result in increased sensitivity of the elderly to alcohol. Alcohol, combined with other medications, especially centrally acting medications, can produce delirium in the elderly. The diagnosis of delirium in an elderly patient carries with it serious risks. An agitated delirious patient may climb out of bed; pull out Foley catheters, IV lines, and sutures; and injure staff in an attempt to protect themselves from a perceived threat. Mental status questionnaires are relatively easy to administer, and an examination should be performed on all patients with mental status changes. The Mini-Mental State Exam, a 10-item test, is easy to administer to an elderly patient.202 Other delirium screening and evaluation tools have been developed, including the Delirium Rating ScaleRevised,203 Confusion Assessment Method,204 Cognitive Test for Delirium,205 and Memorial Delirium Assessment Scale.206

Treatment of Delirium Treatment of delirium includes an identification of the underlying cause, correction of the precipitating factors, and symptom management of the delirium. In the very ill or dying patient, however, the etiology may be multifactorial, and the cause is often irreversible. Ensuring safety is critical, and specialized training is needed to monitor these patients; often these patients cannot be managed at home.207 When caregivers are elderly, it may be necessary to advise hospitalization so that the elderly patient can be given the support and care they require. If delirium is occurring in the dying elderly patient and the goal of care has been identified as the promotion of comfort and relief of suffering, diagnostic evaluations (imaging and laboratory studies) would not prove beneficial. Interventions that may be helpful include restoration of fluid and electrolyte balance, environmental changes, and supportive techniques such as elimination of unnecessary stimuli, provision of a safe environment, and measures that reduce anxiety. In many cases, the etiology of delirium may be pharmacological, especially in the elderly patient. All nonessential and central nervous system-depressant drugs should be stopped. The use of Foley catheters, IV lines, and physical restraints should be minimized; consider the use of gentle massage or music to facilitate sleep hygiene. Figure 38–2 reviews the overall assessment and management of delirium in the geriatric patient at the end of life. Pharmacological treatment includes the use of sedatives and neuroleptics. Breitbart and Jacobsen208 demonstrated that the use of lorazepam alone in controlling symptoms of delirium was ineffective and contributed to worsening cognition. These authors advocate the use of a neuroleptic such as haloperidol, along with a benzodiazepine, in the control of an agitated delirium. Other neuroleptics, such as risperidone and olanzapine, have also been used to treat delirium in the elderly and may have fewer side effects. The oral route is preferred, although in cases of severe agitation and delirium, the parenteral route should be used. In one study by Breitbart, 79 cancer patients were treated for delirium with olanzapine and age over 70 years was found to be the most powerful predictor of poorer response to olanzapine treatment. Other factors included history of dementia, central nervous system spread of disease, and hypoxia as delirium etiologies.209 A Cochrane Review of drug therapy for delirium in terminally ill patients concluded that, based on a single study,210 haloperidol is the most suitable medication for treatment of patients with delirium near the end of life, with chlorpromazine as an acceptable alternative.211

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Summary Elderly patients who are dying should be able to receive skillful and expert palliative care. This means that clinicians must become knowledgable about the aging process—the

Elderly Patients

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High-risk factors present

Obtain history. Perform physical exam. Perform mental status exam. Consider diagnostic workup within the context of goals of care.

Evaluate: Impact on patient/family caregiver. Level of risk/danger. Overall goals of care. Need to transfer to inpatient facility.

Delirium diagnosed and consistent with DSM IV criteria.

Hyperactive/agitated delirium

Hypoactive delirium

Mixed delirium

Investigate possible etiologies. Implement measures to reverse.

Pharmacological management

Hypoactive delirium: Haloperidol PO IV 0.5/6 mg q4–12 h PRN. Start with lowest doses. Do not exceed 30 mg in 24 hours without a psychiatry consult.

Nonpharmacological management

Hyperactive/mixed delirium: Haloperidol IV / PO 2–10 mg q4–12 h PRN. Do not exceed 30 mg in 24 hours without a psychiatry consult.

Decrease external stimulation. Frequently reorient. Create a safe environment. Provide one-to-one nursing care.

Add benztropine .5 to 1 mg IV (PO t.i.d.) for extra pyramidal symptoms

Haloperidol if sedated.

Use olanzapine 2.5–5 mg PO if EPS.

Adjust dosage for optimal control of symptoms and continue for up to 7 days until etiology is reversed. Taper off slowly.

Add lorazepam .5 mg–2 mg IV q4 h for sedation

Switch to chlorpromazine 25–50 mg IV q4–12 h if increased sedation is needed.

Adjust dosage for optimal control of symptoms.

Switch to olanzapine if regimen is not tolerated or if EPS are an issue.

FIGURE 38–2. Delirium management in the geriatric patient at the end of life. Source: Adapted from Memorial SloanKettering Cancer

Center algorithm for pharmacologic management of delirium August , .

physiological changes that normally occur with aging and the impact of progressive disease on an already frail system. Management of symptoms at the end of life in the elderly patient is different from the younger age group because of their altered response to medications, their fear of taking medication, and the need to involve and educate informal and formal caregivers, who are often elderly themselves. Pain, respiratory distress, and delirium are the three most common symptoms in the elderly patient who is dying. Relief of these symptoms is a basic priority for care of the dying elderly patient. Continued assessment of the patient will allow

for drug changes, dose adjustments, and relief of distressing symptoms. Providing relief from these symptoms will help facilitate a peaceful death, one that is remembered as such by family and friends.

References 1. Trends in Causes of Death Among the Elderly Robinson K 2001 NCHS accessible at www.cdc.gov/nchs/data/ahcd/ agingtrends/01death.pdf (accessed December 10, 2009).

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165. Weinrich SP, Weinrich MC. The effect of massage on pain in cancer patients. Appl Nurs Res 1990;3a:140–145. 166. Kristjanson, J Walton J, Toyce C. End of life challenges in residential aged care facilities: A case for a palliative approach to care. Int J Pall Nurs 2005;11(3):127–129. 167. Kristjanson LJ, Walton J, Toyce C. Palliative care for the aged community: An australian perspective. In: Morse C, ed. The Art of Ageing in a Global Community: Lessons from Three Nations. Baywood Publishers, New York; 2005. 168. Farrell MJ, Katz B, Helme RD. The impact of dementia on the pain experience. Pain 1996;67:7–15. 169. Hurley AC, Volicer BJ, Hanrahan PA, Houde S, Volicer L. Assessment of discomfort in advanced Alzheimer patients. Res Nurs Health 1992;15:369–377. 170. Porter FL, Malhotra KM, Wolf CM, Morris JC, Miller JP, Smith MC. Dementia and response to pain in the elderly. Pain 1996;68:413–421. 171. Sengstaken EA, King SA. The problem of pain and its detection among geriatric nursing home residents. J Am Geriatr Soc 1993;41:541–544. 172. Stein WM, Ferrell BA. Pain in the nursing home. Clin Geriatr Med 1996;12:601–613. 173. Kaasalainen S, Middleton J, Knezacek S, et al. Pain and cognitive status in the institutionalized elderly: Perceptions and interventions. J Gerontol Nurs 1998;24:24–31. 174. Parmelee A. Pain in cognitively impaired older persons. Clin Geriatr Med 1996;12:473–487. 175. Mumm J, Hanson L, Zimmerman S, Sloane P, Mitchell CM. Is hospice associated with improved end of life care in nursing homes and assisted living facilities? J Am Ger Soc 2006;54:490–495. 176. Teno JM, Mor V, DeSilva K, Kabumunto G, Mor V. use of feeding tubes in nursing home residents with severe cognitive impairment. JAMA 2002;287:3211–3212. 177. Ferrell BR, Grant M, Chan J, Ahn C, Ferrell BA. The impact of cancer pain education to family caregivers of elderly patients. Oncol Nurs Forum 1995;22:1211–1218. 178. Ersek M, Grant MM, Kraybill BM. Enhancing end-of-life care in nursing homes: Palliative care educational resourse team (PERT) program. J Pall Med 2005;8(3):556–566. 179. Hall P, Schroeder C, Weaver L. The last 48 hours of life in long term care. A focused chart audit. J Am Ger Soc 2002;50:501–506. 180. Rodin MB. Cancer patients admitted to nursing homes: What do we know? JAMA 2008;149–156. 181. Lipowski Z. Delirium in the elderly patient. N Engl J Med 1989;2:578–582. 182. Costa PT, William TF, Somerfield M, et al. Recognition and Initial Assessment of Alzheimer’s Disease and Related Dementias. Clinical Practice Guideline No. 19. Pub. No. 97–0702. 1996. Rockville, MD: U.S. Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research. 183. Marshal GA, Fairbanks LA, Tekin S, Vinters HV, Cummings JL. Neuropathological correlates of activities of daily living in Alzheimer’s Disease. Alzheimer Dis Assoc Disord 2006;20(1):56–59. 184. Hebert LE, Scherr PA, Bienias JL, Bennett DA, Evans DA. Alzheimer disease in the US population: Prevalence estimates using the 2000 census. Arch Neurol 2003;60:1119–1122. 185. Cummings JL. Alzheimer ‘s Disease. N Engl J Med 2004;351:56–67.

186. Lunney JR, Lynn J, Foley DJ, Lipson S, Guralnik JM. Patterns of functional decline at the end of life. JAMA 2003;289(18):2387–2392. 187. Massie MJ, Holland J, Glass E. Delirium in terminally ill cancer patients. Am J Psychiatry 1983;140;1048–1050. 188. Foreman MD. Acute confusion in the elderly. Ann Rev Nurs Res 1993;11:3–30. 189. Breitbart W, Bruera E, Harvey C, Lynch M. Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer. J Pain Symptom Manage 1995;10:131–141. 190. Spiller JA, Keen JC. Hypoactive delirium: Assessing the extent of the problems for the inpatient specialist palliative care. Palliat Med 2006;20(1):17–23. 191. Stagno D, Gibson C, Breitbart W. The delirium subtypes: A review of prevalence, phenomenologyathophysiology, andtreatmentresponse. Palliat Support Care 2004;2(2):171–179. 192. Bruera E, Miller L, McCallion J, Macmillan K, Kreft ing L, Hanson J. Cognitive failure in patients with terminal cancer: A prospective study. J Pain Symptom Manage 1992;7:192–195. 193. Inouye S, Charpentier PA. Precipitating factors for delirium in hospitalized elderly persons: Predictive model and interrelationship with baseline vulnerability. JAMA 1996;275:852–857. 194. Francis J, Martin D, Kapoor WN. A prospective study of delirium in hospitalized elderly. JAMA 1990;267:827–831. 195. Rockwood K. Acute confusion in elderly medical patients. J Am Geriatric Soc 1989;37:150–154. 196. Schor JD, Levkogg SE, Lipsitz LA, et al. Risk factors for delirium in hospitalized elderly. JAMA 1992;267:827–831. 197. Ljubisavljevic V, Kelly B. Risk factors for development of delirium among oncology patients. Gen Hosp Psychiatry 2003;25:345–352. 198. O’Keefe ST, Lavan JN. Clinical significance of delirium subtypes in older people. Age Ageing 1999;28:115–119. 199. Maltoni M, Caraceni A, Brunelli C, et al.; Steering Committee of the European Association for Palliative Care. Prognostic factors in advanced cancer patients: Evidence-based clinical recommendations—a study by the Steering Committee of the European Association for Palliative Care. J Clin Oncol 2005;23(25):6240–6248. 200. Lawlor PG, Fainsinger RL, Bruera ED. Delirium at the end of life: Critical issues in clinical practice and research. JAMA 2000;284:2427–2429. 201. Maltoni M, Caraceni A, Brunelli C, et al.; Steering Committee of the European Association for Palliative Care. Prognostic factors in advanced cancer patients: Evidence-based clinical recommendations-a study by the Steering Committee of the European Association for Palliative Care. J Clin Oncol 2005;23(25):6240–6248. 202. Folstein MF, Folstein SE, McHugh PE. “Mini-Mental Status”: A practical method for yielding the cognitive state of patients for clinicians. J Psych Res 1975;12:189–198. 203. Trzepacz PT. The Delirium Rating Scale: Its use in consultation-liaison research. Psychosomatics 1999;40(3):193–204. 204. Inouye K, Vandyck C, Alessi C, Balkin S, Siegal AP, Horwitz RI. Clarifying confusion: The confusion assessment method, a new method for the detection of delirium. Ann Intern Med 1990;113(12):941–948. 205. Hart RP, Levenson J, Sessler C, Best A, Schwartz S, Rutherford L. Validation of a cognitive test for delirium in medical ICU patients. Psychosomatics 1996;37(6):533–546.

Elderly Patients 206. Breitbart W, Rosenfeld B, Roth A, Smith MJ, Cohen K, Passik S. The Memorial Delirium Assessment Scale. J Pain Symptom Manage 1997;13(3):128–137. 207. Breitbart W, Alici Y. Agitation and delirium at the end of life. JAMA 2008;300(24):2898–2910. 208. Breitbart W, Jacobsen PB. Psychiatric symptom management in terminal care. Clin Geriatr Med 1996;12:329–347. 209. Breitbart W, Tremblay A, Gibson C. An open trial of olanzapin for the treatment of delirium in hospitalized cancer patients. Psychosomatics 2002;43:175–182. 210. Breitbart W, Marotta R, Platt M, et al. A double-blind trial of haloperidol, chlorpromazine, and lorazepam in the treatment of delirium in hospitalized AIDS patients. Am J Psychiatry 1996;153:2:231–237. 211. Jackson KC, Lipman AG. Drug therapy for delirium in terminally ill patients. Cochrane Database Syst Rev 2004;2:CD004770. 212. Seeman T, Guralnik J, Kaplan G, Knudsen L, Cohen R. The health consequence of multiple morbidity in the elderly. The Alameda County Study. J Aging Health 1989;1:5066. 213. Stein W. Barriers to effective pain management in the nursing home. In: Ferrell B, ed. Pain in the Nursing Home. Clinics in Geriatric Medicine Pain Management. Philadelphia, PA: W.B. Saunders; 1996:604.

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214. Walker MK, Marquis DF; NICHE Faculty. Ensuring medication safety for older adults. In: Abraham I, Bottrell M, Fulmer T, Mezey MD, eds. Geriatric Nursing Protocols for Best Practice. New York, NY: Springer; 1996:131–144. 215. Field M, Cassel C; Committee on Care at the End of Life, Institute of Medicine. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press: 1977:50–86. 216. Eliopoulos C. Respiratory problems. In Gerontological Nursing (4th ed). Philadelphia, PA: J.B. Lippincott; 1996:277–290. 217. Storey P, Knight CF, Unipac Four. Management of Selected Nonpain Symptoms in the Terminally Ill. A Self-study Program. Gainesville, FL: American Academy of Hospice and Palliative Medicine; 1996:25–32. 218. Ripamonti C. Management of dyspnea in advanced cancer patients. Support Care Cancer 1999;7:233–243. 219. Tobin M. Dyspnea: Pathophysiologic basis, clinical presentation, and management. Arch Intern Med 1990;150: 1604–1613. 220. Kuebler KK. Hospice and palliative care clinical practice protocol: Dyspnea. Hosp Nurs Assoc 1996:1–28. 221. McCaffery M, Pasero C. Pain: Clinical Manual. St. Louis, MO: Mosby; 1999:179–180.


39o]

Anne Hughes

Poor, Homeless, and Underserved Populations Can you give me respect? . . . Respect me . . . If you got something to say, listen. Don’t jump to conclusions . . . Treat me as I’m treating you. Give me respect; I give you respect. Don’t play (with) my intelligence.—Bill, 41-year-old African-American with AIDS and paraplegia secondary to a gunshot injury

◆ Key Points Poor people are at risk for poor quality of life and poor-quality deaths. People whose lives have been filled with physical and emotional ◆ deprivation may be suspicious of attempts to engage them in “shared” decision-making to limit therapy, regardless of its likely benefits or burdens. Some poor people have medical comorbidities and other social ◆ characteristics that have marginalized them in society. Poor people’s interactions with the health-care system are ◆ frequently marked by rejection, shame, and lack of continuity of care. ◆

Poverty is inextricably linked to increased morbidity, premature mortality, and limited access to both preventive healthcare and ongoing medical care. Beyond the medical outcomes of poverty, the personal and social costs are substantial and often invisible. People who are poor constitute a vulnerable population, a term used in community health to describe social groups at greater risk for adverse health outcomes. The root causes of this vulnerability typically are low socioeconomic status and a lack of access to resources.1 The Institute of Medicine’s report, which evaluated racial and ethnic disparities in healthcare, failed to address the role of poverty in disparities.2 However, the role of poverty in contributing to inequalities, independent of race and ethnicity, is difficult to decipher because class and race are often closely intertwined.3,4 Some believe poverty may be most responsible for disparities in healthcare.4 Although much has been written about end-of-life care in the United States,5–8 with few exceptions, little has been said about those in our society who live at its margins, such as the urban poor.9–12i To be poor and to have a progressive, lifethreatening illness presents more challenges than either one of these conditions alone. As Taipale elegantly notes, “Poverty means the opportunities and choices most basic to human development are denied [p. 54].”13 Consider the following questions: What type of death would a person hope for who doesn’t have a home or lives in a room without a phone, a toilet, or kitchen? What are the meanings of life-threatening illness and death when premature death is an all-too-common part of life? What matters at the end of life if most of your life has been spent trying to survive day to day? All of these questions, in part, introduce us to the worlds of the poor who are confronting a life-threatening illness. Physical, psychological, and spiritual deprivation aren’t all that poor people contend with—deprivation also harms the moral self and the ability both to act and to live autonomously.14 The purpose of this chapter is to examine the characteristics of the poor as an underserved population that place 745

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them at risk when palliative care is indicated . In particular, this chapter looks at a subset of the poor who are homeless or marginally housed and how this affects both access to and quality of care at the end of life. The recent economic downturn affecting the United States and the world has increased the numbers of persons “doing without.” However, this chapter focuses on persons whose “membership” in this group is more long term and not the result of an identifiable global economic crisis; similarly, this chapter does not address the experiences of persons living in extreme poverty in resourcelimited countries around the world. The experience of being poor is not singular or universal, as poor persons are as diverse a population as the nonpoor. Case studies are used to illustrate the concepts discussed and to demonstrate the need for the more research to guide practice. The cases described are composite and reflective of the author’s clinical practice and dissertation research12e in a metropolitan area that is greatly impacted by HIV/AIDS and homelessness. Therefore, these cases are not generalizable to all the poor or even to all the homeless. Poverty is only one social determinant that affects health status and access to resources. Persons with many vulnerabilities (e.g., being poor AND a member of a minority community, elderly, or having other medical problems) are at the greatest risk for adverse outcomes at the end of life.15

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Epidemiology of Poverty in the United States More than 37 million Americans (approximately one in eight) are poor.16 The poverty line established by the federal government is based on annual household income. In 2007, a single adult under age 65 years was considered poor if his/her income was less than $10,787, and a family of four (with one adult and three children under age 18 years) was considered poor if their annual income was less than $21,100.16 Table 39–1 lists states in which the poverty level exceeds the national average of 12.5 for the period of 2005 through 2007. Most experts believe the federal definition of poverty underestimates the true prevalence of poverty in the United States. For example, the poverty line (annual household income) does not capture cost-of-living differences across the country nor out-of-pocket medical costs. The faces of the poor in the United States disproportionately include persons of color, children, foreign-born individuals, and single-parent families.16 African-Americans have the highest rates of poverty in the United States (24.5), followed by Hispanics (21.5), Asian/Pacific Islanders (10.2), and whites (8.2) according to the U.S. Census Bureau Report for 2007.16 Children have greater rates of poverty than young and middle-aged adults and the elderly. Forty three percent of children under age 18 years in the United States and living in a female-headed household were poor compared with 8.5 of children living with two married parents.16 Although poverty is not confined to urban areas, as evident in Table 39–1 (which includes many states with large

Table 39–1 States Whose Poverty Rates Exceed National Average (12.5) for 3-Year Average 2005–2007 State Alabama Arizona Arkansas California District of Columbia Georgia Kentucky Louisiana Mississippi Montana New Mexico New York North Carolina Oklahoma South Carolina Tennessee Texas West Virginia

People in Poverty () 15.2 14.7 15.1 12.7 19.2 13.5 15.7 17.1 21.1 13.4 16.3 14.4 14.1 14.7 13.4 14.8 16.4 15.2

Source: U.S. Census, (http://www.census.gov/hhes/www/ poverty/poverty07/stategrid.xls).

rural populations), 80 of the poor live in or near the more populous metropolitan areas, and 43 of all the poor live in inner (or principal) cities.16 Most of the poor have access to some type of housing or shelter, even if the basic accommodations (telephone, cooking and refrigeration, heat, water, private toilet, and bathing facilities) are inadequate. However, for a small subset, housing is marginal or unavailable. This subset is the focus of the following discussion.

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Definition and Prevalence of Homelessness Homelessness is defined in the Stewart McKinney Homeless Act as a condition under which persons “lack fi xed, regular and adequate night-time residence” or reside in temporary housing such as shelters and welfare hotels.17 Calculating the number of Americans homeless or marginally housed is extremely difficult. Most cross-sectional studies fail to capture persons transiently homeless—the hidden homeless, or those staying with family members, those living in cars or encampments, and others living in single-room occupancy hotels (SROs), sometimes known as welfare hotels. Many of the poor and, in particular, the chronically homeless avoid contact with social and health services. According to the National Coalition for the Homeless, on any given night between 440,000 to 840,000 Americans are homeless; as many as 3.5 million Americans experience homelessness in a given year.18 Persons who are homeless are not

Poor, Homeless, and Underserved Populations members of a homogenous group. Some are street people and chronically homeless, whereas others are homeless because of a financial crisis that put them out of stable housing (this number is expected to climb given the recent global economic crisis). Street people may be more reluctant to accept services and may have much higher rates of concurrent substance abuse and mental illness (i.e., dual diagnosed).19 Homeless persons frequently are also persons of color, veterans, victims of domestic violence, the mentally ill, and substance abusers.20 Although the rates of mental illness and substance abuse are higher in the homeless than persons who are stably housed, assuming that all the poor or, for that matter, that all homeless suffer from these problems only contributes to stereotypes that fail to see the person who is before us.17 Domestic violence, mental illness, and substance abuse are not confined to the poor; therefore, poverty does not cause these problems, although it may well exacerbate them.

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Health Problems Associated with Homelessness and Poverty Numerous health problems are associated with homelessness. Many of these problems are related to environmental factors such as exposure to weather conditions, poorly ventilated spaces, unsafe hotels and street conditions, and high-crime neighborhoods, where the poor tend to live.21 These health problems (Table 39–2) include malnutrition, lack of access to shelter and bathing facilities, problems related to drug and alcohol use, chronic mental illness, and violence-related injuries. One-fifth of the homeless have a major psychiatric illness.20 About one in three homeless persons abuse drugs and alcohol.20 Drugs and alcohol are sometimes used to self-medicate distressing psychiatric symptoms (e.g., anxiety, depression). A meta-analysis of the influence of income inequality and population health concluded that although the direct effects of poverty on population health were not evident, the individual effects of poverty on health status are irrefutable.22 Consider the case of coronary artery disease (CAD): the link between onset of CAD and low socioeconomic status has been established and is believed to be related to lifestyle factors, such as dietary habits, smoking, and physical activity.23 Poor cardiac outcomes among the poor may also be related to limited access to standard medical care.23,24 Persons who are poor, on average, have shorter life expectancies than those whose incomes are higher.25 Men in Harlem have life expectancy rates comparable to those living in developing countries, such as Bangladesh.4 In urban areas, health-care services for the poor are often provided by public health departments, teaching hospitals, faith communities, and non-governmental organizations. These services typically are overburdened and unable to meet the needs of the poor and the growing number of Americans who are uninsured who access them.12f For many of the poor, the Emergency Department (ED) has become the primary source of medical care.10

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Table 39–2 Health Problems Associated with Homelessness Causes

Manifestations

Malnutrition

Dental problems, tuberculosis, wasting Skin infections, lice, cellulitis, Lack of shelter and podiatric problems, hypoaccess to bathing thermia, tuberculosis facilities Drug and alcohol use Overdose, seizures, delirium, sexually transmitted infections (such as HIV, hepatitis B, hepatitis C), trauma, falls, cirrhosis, heroin nephropathy, esophageal varices Chronic mental Paranoid ideation, antisocial illness behaviors, psychosis, suicide Violence-related injuries Assaults, homicides, rape

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Poverty, Life-Threatening Illness, and Quality of Life Poor people endure a heavier burden of cancer according to a report from the American Cancer Society.4 The key findings of the impact of poverty on cancer care—irrespective of race and ethnicity—are listed in Table 39–3. Generally, poor people encounter substantial barriers to obtaining quality cancer care, experience more pain and suffering, and are more fatalistic about cancer. Understanding the role race and ethnicity play in the endof-life experience of the urban poor is complex. Nevertheless, three studies examined the impact of economic resources on quality of life for persons with life-threatening illnesses.26–28 Being poor (defined as having an annual income of less than $20,000) negatively affected the quality of life reported by mostly white (85) men who were newly diagnosed with prostate cancer, although low income was not related to quality-oflife over time. However, the lack of health insurance did predict worse quality of life for men with prostate cancer over time but not at baseline.27 In a qualitative study of heterosexual couples in which only one partner was HIV-positive, the investigators were surprised to learn the “benefits” of having AIDS in providing poor persons with access to subsidized housing, food, and other social services.26 Indeed, these researchers noted that given policy changes in welfare programs, having an AIDS diagnosis was a commodity that brought with it benefits that the poor were otherwise ineligible to receive. In other words, for poor people, having AIDS improved their quality of life. In a cross-sectional study of 212 adults with heart failure who were predominantly female (68) and Africa-American (53), quality of life was not related to physiological measures of heart function but was correlated with greater income, social support, and positive health beliefs.28 Economic resources were associated with improved quality of life.

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Table 39–3 Poverty and Cancer: Findings from an American Cancer Society Report • Poor people lacking access to quality healthcare are more likely to die of cancer than nonpoor. • Poor people experience greater cancer-related pain and suffering. • Poor people facing significant barriers to getting health insurance often do not seek necessary care if they are unable to pay for it. • Poor people and their families make extraordinary sacrifices to obtain and pay for care. • Cancer education and outreach efforts are insensitive and irrelevant to the lives of many poor people. • Fatalism about cancer is common among the poor and often prevents them from accessing care. Source: Adapted from Freeman (2004), reference 4.

In the book, Dancing with Broken Bones: Portraits of Death and Dying Among Inner City Poor, Moller poignantly recounts and photographically documents the stories of poor patients followed by an oncology clinic in a midwest city. His insights about the suffering of the urban poor are exquisite: “ . . . the dying poor are the quintessential violators of the American dream; they live in the shame of poverty and with the unpleasantness of dying [p. 10].”10 Because much of a person’s “worth” in American society is connected with social status indicators such as occupation and income, the poor represent those who haven’t made it. Being poor becomes a matter of personal failure rather than a social problem.29 From Moller’s longitudinal qualitative study of poor innercity patients, their families, and their health-care providers, the researcher drew a number of conclusions, which are listed in Table 39–4. His work can perhaps be summed up by saying that the indignities of being poor in America are only intensified when that person is also dying; this finding is corroborated by other researchers.12e,12f,12h Unlike persons who are not poor, dying is not always feared in the same way, because for some persons who are socially or economically disadvantaged, dying may represent freedom from the misery of living.12f

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Clinical Presentations of Advanced Disease in the Poor Persons who are poor frequently present with advanced disease. In addition to the late-stage disease presentation, many have significant comorbidities that affect both the palliation of symptoms and the course and treatment of underlying illnesses. These clinical management issues usually occur within the context of complex psychosocial situations, as the following cases illustrate:

Table 39–4 Insights About the Dying Poor • Poverty infl icts substantial harm throughout life. • Poverty exacerbates indignity and suffering throughout dying. • Patients/families are often mistrustful and angry about the care received. • Patients, at the same time, are often grateful for the care received. • Spirituality plays an important role in providing strength and resilience when dying. • Social isolation increases suffering. • Hidden and sometimes unexpected sources of support can emerge from family and community. • The emergency room is the front door to healthcare. • The organization of medical care is frequently fragmented and lacks continuity. • Funerals are important rituals, and their cost creates enormous stress for survivors. Source: Adapted from Moller (2004), reference 10.

9= Case Study A 49-Year-Old Man with AIDS Bill, a charmingly personable 41-year-old African-American man with AIDS and spinal cord injury, has been living in an AIDS-dedicated nursing home for over 12 years off and on, mostly on for the last 5 years except when hospitalized. Bill is dependent in most ADLs including transfers but is able to feed himself, perform his own oral hygiene and grooming, and get around in a motorized wheelchair. He enjoys writing poetry and loves to ride around in his chair. Bill resists his nurses’ efforts to reposition him in the wheelchair or back in bed to relieve pressure on his coccyx. Bill’s mother lives out of state and he has no other close relatives or friends who are in contact with him regularly. From time to time when Bill can borrow a phone, he calls his mother. Bill’s past attempts to return to the community were hampered by lack of support system and Bill’s feeling like a “sitting duck” in the high-crime area where most of the wheelchair-accessible SROs were located. Bill’s spinal cord injury and paraplegia secondary to a gunshot wound predate his diagnosis with advanced HIV disease ( his HIV diagnosis occurred more than 15 years ago). His other medical problems include liver disease secondary to Hepatitis C and alcohol abuse, chronic obstructive pulmonary disease (COPD), stage IV pressure ulcer on coccyx, history of crack cocaine and heroin use, depression, and occasional delusional thinking. Bill was a drug dealer who even tried selling drugs at the nursing home when he was first admitted. Periodically he has had positive urine toxicology screens for cocaine and occasionally was found to have alcohol on his breath.

Poor, Homeless, and Underserved Populations After his spinal cord injury, Bill was hospitalized for a presumed suicidal drug overdose. Currently Bill is taking antiretrovirals, bronchodilators, antidepressant therapy, and opioids for pain, which are administered by the nursing staff at the home. Although the staff believe Bill has pain, they are aware of his drug use, and that he “cheeks” his prescribed opioid to sell to another patient. o] Comorbidities, especially those related to drug use and violence, complicate symptom management and other medical management.30 As Bill’s case study illustrates, there are several competing factors that may influence his providers’ willingness to aggressively manage his pain. Persons known to be chemically dependent are often denied treatment for pain because of providers’ concerns of aberrant or drug-hoarding behaviors. Will Bill take the medication as ordered? What should the nurse say/do when Bill insists he does not need to be observed swallowing his medications or when he insists that he does not like the taste of the liquid opioid? Is he likely to try again to sell his opioids for cocaine? How does one manage the severe pain of a patient who has diverted opioids in the past and whose actions may have compromised the safety of other patients? Pain experts have noted that some providers question the use of opioids for any nonmalignant pain syndrome and ethical dilemmas arise when assessing and managing pain in these complex situations.30a Who then will prescribe opioid medications? If Bill is seen by a covering provider rather than his primary care provider will he need to negotiate the need for analgesia with the new doctor ? Does the pharmacy that provides medications to the nursing home carry them? Morrison and colleagues31 reported that pharmacies in predominantly non-white neighborhoods in New York City were less likely to carry opioids for pain management than were pharmacies in neighborhoods serving predominantly white communities. Most health-care facilities and housing programs serving the poor are located in inner cities rather than in middle class or affluent communities, where more whites live. Poor social conditions, criminal activity, and the threat of violence are significant barriers to effective pain management for persons with life-threatening illnesses.12 In the nursing home, Bill is carefully monitored but the nurses remain concerned that he is using drugs again when he is quite drowsy and insisting that his pain is not wellcontrolled. How can the nurse know for sure that he is in pain and not merely “drug seeking” for income or to self-medicate the suffering of his everyday existence? Some questions are philosophical and cannot simply be answered clinically. In addition to these quandaries, for many persons who are poor and others lacking adequate health insurance, access to treatment is a significant factor that influences symptom management. For example, if an antiemetic prescribed to relieve the chronic nausea experienced by a poor person with pancreatic cancer is not covered on the Medicaid formulary, or the person is not eligible for any drug-assistance program, then the range of medications used to manage the nausea is severely limited.

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High-tech methods to control symptoms are probably not an option for the person who lives in a tent encampment. Most poor persons are institutionalized to manage uncontrolled symptoms and to provide both chronic and terminal care that cannot be managed sufficiently on the street or in the shelter.10 The management of symptoms associated with progressive illness is further complicated by end-organ diseases, such as liver or renal disease, that may alter the pharmacokinetics of medications used to palliate symptoms. Clinically significant drug–drug and drug–nutrient interactions are common with antiretrovirals that Bill is taking. Determining whether a patient is experiencing an adverse drug reaction is not easy when the person has comorbidities, has rapidly progressive disease, is malnourished, or may be continuing to use alcohol or other substances. Comorbidities also affect the health-care providers’ ability to realistically estimate prognosis and the nature of symptoms or problems that might occur down the road. Bill has lived with AIDS for more than 15 years. Prior to the introduction of antiretriviral therapy and prophylaxis of opportunistic infections in the mid-1990s, in all probability he would not have survived this life-threatening condition. Now Bill is more likely to succumb to complications associated with his spinal cord injury or substance abuse.31a Charting the dying trajectory for the chronic progressive illness may be conceivable, but superimposing the acute illnesses and injuries that the very poor live with and manage creates jagged peaks and valleys in a downward course. How quickly the life-threatening illness will progress becomes a prognostication puzzle; some persons who have been living on the street truly seem to have had nine lives. Because Bill is in a setting in which his medications and treatments are administered, treatment adherence is less a concern. If Bill were living in a less supervised setting, then this would be another issue about which health-care providers would likely be quite concerned—Despite the prevalence of substance abuse among the poor, lack of attention to selfcare activities cannot be assumed in all drug users. Some homeless persons who use drugs manage complex HIV antiretroviral regimens that require scrupulous attention regarding when to eat, which other medications may or may not be taken at the same time, and the necessary several-times-aday dosing.32 Race, class, and housing status cannot be used as surrogate predictors of who abuses drugs and alcohol or who will adhere or not adhere to treatment demands.

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More Psychosocial Factors Influencing Palliative Care Available to the Poor and Homeless Health-care professionals committed to supporting patients’ right to a good death may be challenged when working with the poor and the homeless. The good death is described as: (1) free from avoidable distress and suffering; (2) in accord with the patient and family’s wishes; and (3) consistent with clinical, cultural, and ethical standards.5 Bad deaths, in contrast,

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are accompanied by neglect, violence, or unwanted and senseless medical interventions.5 Persons who are poor or homeless are at risk for not-so-good deaths.12a Many persons have had episodic contact with the health-care system during acute illnesses or life-threatening trauma and may wind up receiving life-saving therapies such as mechanical ventilation, vasopressors, dialysis, and other therapies. All too often, the client does not have an advance directive or a surrogate decision-maker to articulate his/her wishes. Furthermore, in the absence of a competent patient or family directing otherwise, the technological imperative of hospitals and physicians in training may see saving a life at any cost of greater value.5 Nevertheless, what constitutes a good or bad death is a question that can only be answered by an individual, if such a question is even relevant, and cannot be predicted based on group membership or economic resources.33 Basic survival needs (food, shelter, clothing, protection) are of primary concern to the poor—often of greater and more pressing importance than the existential crisis of facing one’s own mortality. Seeing others die prematurely, often under violent or disturbing circumstances, or alone and forgotten, may be an all-too-common experience for this population.34,12g Table 39–5 lists challenges to providing a good death in this population. The lack of resources, both economic and human, limit the palliative options available to the person who is poor. In the movie The Wizard of Oz, Dorothy’s refrain, “There’s no place like home, there’s no place like home,” speaks of an almost faraway magical experience of which many who are poor and dying cannot even dream. Housing is so essential to health that for those of us who do not worry about having a roof over our heads at night, its importance is taken for granted. Many persons who are poor and don’t have enough to get by are often trying to figure out how to find a place to stay. And for those with a place to live, the concerns may be keeping the utilities (lights, heat, water) on and having enough money for other needs. In addition to basic survival needs of the poor that influence their end-of-life experiences are their relationships with the health-care professionals who care for them. Health-care professionals can and often do stigmatize patients for their appearance or lack of hygiene. Sometimes the presence of body odor leads to rejection. Historical events and power differential in patient–provider roles can also affect such relationships. For example, the African-American experience with the medical care system includes the Tuskegee experiment and other instances of abuse. Many African-Americans feel betrayed by the predominantly white medical care system and believe their trust in the system has been violated.35 Because many of the poor receive care in public healthcare systems or indigent care settings that often serve as teaching hospitals, continuity of care is often an illusion.10 Additionally, discussions about limiting therapy or donot-resuscitate decisions may be regarded as an attempt by the dominant culture to withhold possibly life-sustaining therapy. Some individuals and communities fear being treated “like a guinea pig” and refuse to participate in clinical trials when offered. The sometimes-conflicted relationships

Table 39–5 Psychosocial Challenges in Providing Palliative Care to the Poor • Patient is homeless or has unstable or unsafe housing, with inadequate basic facilities (phone, private bathroom, refrigerator, and cooking facilities). • Getting to appointments is difficult without reliable transportation. • Lack of money limits options and often contributes to chaotic lives. • Patient has fragile or nonexistent support system (e.g., no primary caregiver, caregiver who is unable to provide necessary care, caregiver also sick, no surrogate or proxy decision-maker, estranged from family, history of family violence or abuse). • Many poor people who have encountered rejection or shame when accessing healthcare services avoid contact and are slow to trust even well-meaning healthcare professionals. • Poor people who obtain healthcare usually do so without benefit of a long-term relationship with a primary care provider or a case manager familiar with their history that can help them navigate a complex care-delivery system. • Most healthcare or specialized palliative care services are geographically remote from where poor people live. Some service providers curtail services to the poorest communities because of concerns about staff safety. • Behavioral problems (e.g., drug hoarding, selling prescriptions, hostility, psychiatric illness, substance abuse) can affect patient relationships with health-care providers. • It is difficult to assess the decision-making capacity and goals of patients who are cognitively impaired, intoxicated, or brain-injured. • Many patients, including the poor, are asked to make treatment decisions without sufficient information about the implications of the decisions, and in the context of a patient–provider relationship that has enormous power imbalances. • There is little evidence available on which to base therapeutic interventions because this population is not included in clinical trials. Source: Adapted from Moller (2004), reference 10.

that poor people have with health-care providers and systems related to care at the end of life is again powerfully captured by Moller: . . . Perhaps even more poignant than the anger and disappointment of dissatisfied patients is the absence of resentment on the part of those who have every reason to be upset with the care they receive. It is fair to suggest that, for some, this lack of assertiveness and anger has its roots deep within the experience of poverty. Living every day with chaos, stress, and the indignity of inner-city poverty creates, for many, a level of tolerance that most of us would find intolerable. In this regard, it is not unusual for

Poor, Homeless, and Underserved Populations patients to accept care with which they are unhappy because they have accepted a lifetime of economic and social indignities about which they are unhappy. In a strange sense, many patients often felt their suffering in the face of disease was just, “one more bad thing to endure.” Thus despite many variations in form and meaning, disease and dying are often borne with a sense of equanimity that flows from constant adjustments required by a life lived in poverty [p. 1].10

9= Case Study A 35-Year-Old Man with Liver Cancer Danny is a 53-year-old African-American man with liver cancer and end-stage heart disease (New York Heart Disease Class IV) and multiple other comorbidities, including a history of psychosis (controlled when he takes antipsychotic medications) and polysubstance abuse (his drug of choice is crack cocaine). Danny has been chronically homeless and spent some of his youth incarcerated in a penitenary in the South—in fact, Danny was born in jail. He is enrolled in the ED psychosocial case management program, in part to decrease his ED use (Danny had over 75 visits to the ED of a public hospital in 1 year). Danny’s psychiatric social worker/case manager has worked over time to develop a relationship with him, to secure stable housing, and to help Danny receive the medications and medical appointments needed to manage his mental illness and heart disease and to palliate his liver cancer. Danny is the father of eight daughters and a son. One daughter was murdered by her husband. “What are you going to do, that’s life,” Danny commented when interviewed for a study exploring dignity among persons with advanced disease.12e,12f He is no longer in touch with his ex-wife or most of his children but periodically remains in contact with his 83-year-old mother. Danny’s illness narrative is woven into his life (e.g., what he was doing at the time, following a psychiatric hospitalization and not the cancer or heart disease symptoms that resulted in his seeking healthcare). Danny believes he is going to live forever. According to his social worker, Danny has outlived most physicians’ prognostications, which undoubtedly contributes to his beliefs. His outliving the doctors’ prognosis made Danny question if doctors can always be believed. Danny hates being “prejudged” by health-care providers because he is African-American and a drug user.12e,12f At times, these labels have contributed to his feeling of being spoken down to or ignored, which makes him angry and has resulted in his leaving clinics or hospitals against medical advice. Danny is annoyed that all the doctors keep telling him he is going to die. After all, “(he’s) still here.” He does not want to be asked about his end-of-life wishes, because he’s still alive. Heart disease and liver cancer are not the only chronic illnesses Danny and his family have been dealing with; Danny has a history of severe mental illness that have

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required previous hospitalization. Mental illness obviously is not confined to the poor. However, incorporating palliative care in the care of persons with mental illnesses is not easy regardless of their socioeconomic class. The literature to guide practice on palliative care and mental illness is sparse. In 2008, a literature review published by the Mental Health Foundation in England underscored the lack of evidence on which to base practice.35a The review noted that research and practice guidelines in palliative care typically address depression, anxiety, delirium, and cognitive impairment, which may be secondary to the lifethreatening condition.35b Few, if any, explored how persons with severe mental illnesses cope with life-threatening illness, although such patients may be a greater risk for presenting with advanced medical diseases.35a Danny’s story also raises a number of complex issues influenced by culture, historical discrimination, and the process of end-of-life decision-making. For some AfricanAmericans, according to Crawley, death is seen as a struggle to overcome and, for others, a welcomed friend that precedes going home to heaven.35 Danny is not ready to die, he does not regard death in his immediate future; perhaps dying, like living, is one more struggle to be overcome. Danny receives care in a public hospital from an oncology fellow whose different race, education, and occupation may contribute to different world views. Because Danny is living with two life-threatening conditions, his care is comanaged and poorly coordinated. When to introduce the option of hospice is difficult35c; it is even more difficult for communities who have felt marginalized or ignored by the dominant culture. For some patients, poor and nonpoor alike, hospice is equated with giving up, with not having hope. Given Danny’s focus on living and his expressed desire not to think about or talk about dying, how can hospice be brought up without disregarding his expressed wishes? Is hospice likely to alter Danny’s ED use when he has an urgent symptom or concern? Would hospice be able to provide services to his SRO and make visits at night to high-crime neighborhoods? Why must a person who has been receiving aggressive treatment to control disease shift to an approach whose goal is a peaceful and dignified death, when he has been struggling to live? These questions are not unique to the poor who are dying. o]

9= Case Study A 55-Year-Old Woman with Ovarian Cancer Sally is a 55-year-old white woman with advanced ovarian cancer who lives in an SRO. She’s had debulking surgery and many cycles of chemotherapy. Sally is a widow, without children, who has lived in the same 100-square-foot room for “many years.” The bathroom she shares with the other tenants on her floor is around the corner and down the hall. She has no kitchen—only a hot plate and small refrigerator. Sally was raised in foster care and never had any contact

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with her biological family. Whenever asked about her support system Sally consistently replies, “I have no family.” She completed eighth grade of her formal education but studies and frequently refers to the written cancer patient education materials she received from the American Cancer Society. Sally worked as a domestic, cleaning homes for rich families, until she was brutally raped, left critically ill, and hospitalized for an extended period more than 20 years ago. Sally’s survival after that violent trauma was uncertain and almost miraculous. How horribly ironic that Sally would be diagnosed with ovarian cancer after surviving a brutal rape. When her tumor marker increases, Sally admits to being scared that the tumor may have extended to other organs, but she remarks “There’s nothing you can do about it. Worrying don’t do no good.” Sally’s faith is very important to her as a source of comfort and companionship. When asked about any worry she might have related to her cancer, Sally states, “No, because if I’m concerned, I pray to God and tell Him to show me the way so I get through it . . . I’m very close to God and if I have problems, I just pray to God.” Listening to a TV televangelist and studying the Bible and other religious texts on CDs is how Sally spends most of her day in her room. She even takes her religious CDs and player to listen to while she is getting her chemotherapy at the outpatient infusion center. Sally’s faith has helped her manage the worry of cancer and to fi nd strength to cope with its demands. When interviewed for a study to understand the meaning and experience of dignity, Sally asks, “What does dignity mean? I got to know what it means before I can answer the questions [pp. 1114].”12f Sally’s story documents the difficult backgrounds and socially isolated experience of many of the poor.12f Sally’s story also illuminates the enriching role that religion and spirituality can play in patients’ lives. 10,12f,35d Spiritual beliefs and practices help some to make sense of their world, to cope with adversity (whether serious illness or poverty), and to find meaning in suffering. Faith surely seems to play this role for Sally. The role that faith plays in the lives of the poor may not differ from the role faith plays in the lives of the nonpoor; although for the poor faith may be more a beacon of relief in a world that is hostile, rejecting, and marginalizing. Sally’s question about dignity reminds us that some concepts central to palliative care, such as dignity, may not be understood to those for whom we care; however, the meaning of dignity at the end of life is hardly unambiguous and consensual.12e,12h,35e Sally’s prophetic question may be the question researchers, clinicians, and policymakers also find themselves struggling to answer. o]

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Where and How Homeless People Die Limited data are available regarding the socioeconomic factors, places of death, and immediate causes of death of the

homeless.36–38 Similar to those who are not poor, most poor people die in institutions. For those who are homeless, dying on the street or in jail is another fact of life.39 In 2003, 169 homeless persons died in San Francisco.38 The profi le of the homeless who died is the following: male (85), average age of 42 years, and disproportionally more whites and African-Americans than live in San Francisco.36 Drug and alcohol were directly associated with 60 of these deaths. Chronic alcohol abuse and acute alcohol intoxication were also listed as causes of death in the homeless in Georgia.40 Hypothermia was also noted as a cause of death among the homeless in Chicago and in Georgia.40,41 Accidental deaths resulting from fi res, falls, and pedestrian– motor vehicle accidents, as well as drowning and violent deaths related to homicide and suicide were also reported in the homeless.40 Researchers in Boston studied the use of healthcare by the homeless for the year prior to their deaths.37 Chart reviews were completed for all patients reported to the state death registry who had participated in a health-care program for the homeless. The actual circumstances of the death were not studied; however, the causes of death as listed on death certificates were noted. For the 5-year study period, 558 deaths were reported. Unlike the previous results, which examined coroner’s cases, 81 of the deaths were attributed to natural causes (such as HIV/AIDS-related conditions, heart disease, cancer, and other unspecified causes), and only 19 resulted from external causes such as homicide, suicide, motor vehicle injuries, and drug overdoses.37 Similar to the homeless who died in San Francisco, most were male (86), between ages 25 and 44 years (56), white (59), and had a history of substance abuse (76 used alcohol). In addition, 28 were mentally ill.37

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Palliative Care Models for Working with the Poor Several hospitals serving the urban poor have developed palliative care programs to address their specific needs.42–44 The longest-running program (since 1986) is a nurse-directed program that serves critically ill patients who are unlikely to survive hospitalization in a trauma level I hospital in the Midwest. This supportive care team has documented decreased use of health-care resources and family satisfaction.42 Another program, an interdisciplinary palliative care service based in a public hospital, follows patients and their families in the community and serves as a bridge when the patient is transferred to a nursing home or hospice for continuing care. 43 A third program, is an HIV/AIDS disease-specific palliative care consult service in New York City in a Bronx hospital serving the poor. The multidisciplinary team consults with both inpatient services and outpatient providers. The primary reasons for consultation included goals of care, pain, and psychsocial issues.44

Poor, Homeless, and Underserved Populations

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Strategies for Working with the Poor and Homeless Who Happen to be Dying Working with the very poor can be challenging. Generations of internalized hopelessness, poor self-awareness, differing perceptions of time (everything seeming to take much longer), and difficulties navigating the many bureaucracies necessary to obtain services surely frustrate patients and caregivers alike.45 Some have suggested modifying expectations to these realities and recognizing small successes as strategies to address these factors.45 On the other hand, for many persons who live on the street, survival skills are keenly developed. Knowing when a food bank opens, where to get clothing, when shelter-bed waiting lines begin to form, or how to get benefit checks without an address requires remarkable ingenuity and discipline. Needless to say, as with persons who are not poor, wide variations in abilities, resources, and relationships with healthcare professionals exist. Obviously, stable housing is critical to providing palliative care. Researchers noted the benefits of supportive housing to minority elders in East Harlem, including better psychological outcomes and increased use of informal supports.46 In a qualitative study of nurses who care for persons who are disenfranchised, the researcher used the metaphor of a wall to describe the separation that nurses believed their clients experienced from society.47 The disenfranchised in this study included the poor, mentally ill, immigrants, persons with substance abuse, and/or those with stigmatizing life-threatening illness. The nurses described three key themes in how they engaged their disenfranchised clients: (1) making a human connection with the client; (2) creating a community connection for their disconnected clients; and (3) making self-care possible. In summary, developing therapeutic relationships with the poor and homeless requires (1) expecting the person’s trust to be earned over time (sometimes a long time) and not be taken for granted; (2) respecting the person’s humanity, no matter how they look, what they say, and what feelings in us they evoke; (3) appreciating the person’s unique story as influencing his/her response to illness and death; and, finally, (4) recognizing and addressing maladaptive behaviors.29,39,48 Table 39–6 includes a list of helpful suggestions to reach a difficult-to-engage client. In addition to the interpersonal interventions to engage the client in a therapeutic interaction, nurses are often required to become knowledgeable about the availability of and the services provided by community agencies. Knowing which agencies or services are involved with a client and communicating with them assures consistency of approach and continuity of care. Advocacy is often required to access services such as pain management, substance abuse treatment, mental health services, and social services for housing and money management. To truly improve end-of-life care for the poor, nurses need to advocate for public policies that assure access to safe and stable housing, health insurance, and client-centered, community-based primary care.

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Table 39–6 Helpful Suggestions When Engaging a Difficult-to-Engage Client • Address anyone older than 40 years of age by the title of Mr. or Ms. Ask permission to be on a first-name basis. • Do not hestitate to shake hands. • Be prepared to meet people who are more intelligent, more perceptive, and more wounded than you expect. • Be tolerant. How would you react if you were in that situation? • Don’t make promises you can’t keep. • Don’t take it personally. • Taking time out helps prevent burnout. • Get to know the community. • If you feel you have to save the human race, do it one person at a time. • Providing material assistance (e.g., clean socks, food, hygiene kits) opens people up. • Usually the most difficult clients are those most in need. Throw the word noncompliant out of your vocabulary. • Make eye contact. If the person does not like eye contact or becomes agitated, avoid using it. • Keep in mind that people who live intense lives may not particularly like unasked-for physical contact. • Don’t be afraid to ask “stupid” questions; patients’ answers are better than your assumptions. • Adjust your expectations and accept small victories with satisfaction. Source: Patchell (1997), reference 48.

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Summary Providing palliative care to the poor, especially the homeless, is extremely challenging. Comorbid illnesses, illnesses associated with poverty, and clarifying the etiology of presenting symptoms may seem almost impossible at times. Psychosocial risk factors and strained relationships with health-care providers sometimes result in the client receiving futile or unwanted medical interventions at an advanced stage of illness. Clarifying with a patient what constitutes a good death for him/her can be humbling when the patient tells you he or she wants simply to have shelter and to feel safe. Meeting the palliative care needs of this vulnerable population will require innovative practice and education models.

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Acknowledgments The author gratefully acknowledges the research and educational grant support of the American Cancer Society Doctoral Scholarship in Nursing; National Institute of Nursing Research, Ruth L. Kirschstein National Research Service Award F31NR079923; Oncology Nursing Society (ONS) Foundation

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Small Research Grant Award; ONS Doctoral Scholarship; UCSF Alpha Eta Research Award, Sigma Theta Tau Chapter and UCSF Graduate Student Research Award. She dedicates this chapter to the memory of Sally and Danny who while no longer in this world, their stories and others like them, continue to enlighten us.

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12g. Song J, Bartels DM, Ratner ER, Alderton L, Hudson B, Ahluwalia JS. Dying on the streets: Homeless persons’ concerns and desires about end of life care. J Gen Intern Med 2007;22(4):435–441. 12h. Hughes A, Davies B, Gudmundsdottir M. “Can you give me respect?” Experiences of the urban poor on a dedicated AIDS nursing home unit. J Assoc Nurses AIDS Care 2008;19(5): 342–356. 12i. Francoeur RB, Payne R, Raveis VH., Shim H. Palliative care in the inner city. Patient religious affi liation, underinsurance, and symptom attitude. Cancer 2007;109(2 Suppl):425–434. 13. Taipale V. Ethics and allocation of health resources: The influence of poverty on health. Acta Oncol 1999;38:51–55. 14. Blacksher E. On being poor and feeling poor: Low socioeconomic status and the moral self. Theor Med Bioeth 2002;23:455–470. 15. Aday LA. At Risk in America: The Health and Health Care Needs of Vulnerable Populations (2nd ed). San Francisco, CA: Jossey-Bass, 2001. 16. DeNavas-Walt C, Proctor BD, Smith JC. 2008. Income, poverty and health insurance coverage in the United States: 2007. http://www.census.gov/prod/2008pubs/p60–235.pdf (accessed January, 2009) 16a. U.S. Census Bureau, http://www.census.gov/hhes/www/ poverty/poverty07/tables07.html (accessed January, 2009). 17. National Coalition for the Homeless. 2008. Who is homeless? Fact Sheet #3 from http://www.nationalhomeless.org (retrieved January 9, 2009). 18. National Coalition for the Homeless. How many people experience homelessness? Fact sheet #2 http://www.nationalhomeless.org (accessed January 9, 2009). 19. Fellin P. The culture of homelessness. In: Manoleas P, ed. CrossCultural Practice of Clinical Case Management in Mental Health. New York, NY: Haworth Press; 1996:41–77. 20. National Coalition for the Homeless. 2002. Who is homeless fact sheet. Available at: http://www.nationalhomeless.org (accessed December 27, 2004). 21. Strechlow AJ, Amos-Jones T. The Homeless as a vulnerable population. Nurs Clin N Am 1999;34:261–274. 22. Lynch J, Davey Smith G, Harper S, Hillemeier M, Ross N, Kaplan GA, Wolfson M. Is income inequality a determination of population health? Part I. A systematic review. Millbank Q 2004;82:5–99. 23. Horne BD, Muhlestein JB, Lappe DL, et al. Less affluent area of residence and lesser-insured status predict an increased risk of death or myocardial infarction after angiographic diagnosis of coronary disease. Ann Epidemiol 2003;14:143–150. 24. Fang J, Alderman MH. Is geography destiny for patients in New York with myocardial infarction? Am J Med 2003;115:448–453. 25. Lynch J, Davey Smith G, Harper S, Hillemeier M. Is income inequality a determinant of population health? Part 2. U.S. national and regional trends in income inequality and age- and cause-specific mortality. Millbank Q 2004b;82:355–400. 26. Crane J, Quirk K, van der Straten A. “Come back when you’re dying,” the commodification of AIDS among California’s urban poor. Soc Sci Med 2002;55:1115–1127. 27. Penson DF, Stoddard ML, Pasta DJ, Lubeck DP, Flanders SC, Litwin MS. The association between socioeconomic status, health insurance coverage, and quality of life in men with prostate cancer. J Clin Epidemiol 2001;54:350–358.

Poor, Homeless, and Underserved Populations 28. Clark DO, Tu W, Weiner M, Murray MD. Correlates of healthrelated quality of life among lower income, urban adults with congestive heart failure. Heart Lung 2003;32:391–401. 29. Kiefer CW. Health Work with the Poor: A Practical Guide. New Brunswick, NJ: Rutgers University Press, 2000. 30. O’Connor PG, Selwyn PA, Schottenfeld RS. Medical care for injection drug users with human immunodeficiency syndrome. N Engl J Med 1994;331:450–459. 30a. Sullivan M, Ferrell B. Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. J Pain 2005;6(1):2–9. 31. Morrison RS, Wallenstein S, Natale DK, Senzel RS, Huang LL. “We don’t carry that”—failure of pharmacies in predominantly nonwhite neighborhoods to stock opioid analgesics. N Engl J Med 2000;342:240–248. 31a. Sackoff JE, Hanna DB, Pfeiffer MR, Torian LV. Causes of death among persons with AIDS in the era of highly active antiretroviral therapy: New York City. Ann Intern Med 2006;145(6):397–406. 32. Bangsberg D, Tulsky JP, Hecht FM, Moss AR. Protease inhibitors in the homeless. JAMA 1997;278:63–65. 33. Tong E, McGraw SA, Dobihal E, Baggish R, Cherlin E, Bradley EH. What is a good death? Minority and non-minority perspectives. J Palliat Care 2003;19:168–175. 34. Kozol J. Amazing Grace: The Lives of Children and the Conscience of a Nation. New York, NY: Perennial Publishers, 1995. 35. Crawley L, Payne R, Bolden J, Payne T, Washington P, Williams S. Palliative and end-of-life care in the African American community. JAMA 2000;284:2518–2521. 35a. Ellison, N. 2008. Mental Health and Palliative Care Literature Review. http://www.mentalhealth.org.uk/publications/?entryi d5=62815&char=M (accessed January, 2009). .35b. National Consensus Project. 2004. Clinical Practice Guidelines for Quality Palliative Care. http://www.nationalconsensusproject.org/Guideline.pdf (accessed September 10, 2006). 35c. Casarett D, Quill TE. “I’m not ready for Hospice:” Strategies for timely and effective hospice discussions. Ann Intern Med 2007;146(6):443–449. 35d. Hughes A, Gudmundsdottir M, Davies B. Exploring Spirituality in the Urban Poor with Advanced Cancer (poster abstract). Oncol Nurs Forum. 2008;35:535.

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35e. Street AF, Kissane DW. 2001. Constructions of dignity in endof-life care. J Palliat Care 2001;17(2):93–101. 36. Bermudez R, von der Werth L, Brandon J, Aragon T. San Francisco Homeless Deaths Identified from Medical Examiner Records: December 1997–November 1998. San Francisco, CA: Department of Public Health, 1999. 37. Hwang SW, O’Connell JJ, Lebow JM, Bierer MF, Orav EJ, Brennan TA. Health Care Utilization Among Homeless Adults Prior to Death. J Health Care Poor Underserved 2001;12:50–58. 38. Dineen JK. Increase in homeless death rate on city’s streets. San Francisco Examiner, August 28, 2003. http://www .examiner.com/article/index.cfm/i/082803n_homeless (accessed December 27, 2004). 39. Patchell T. Nowhere to run: portraits of life on the street. Turning Wheel J Soc Engag Buddhism 1996;Fall:14–21. 40. CDC. Deaths among the homeless—Atlanta, Georgia. Morbid Mortal Report 1987;36:297–299. 41. CDC. Hypothermia-related deaths—Cook County, Illnois. Morbid Mortal Report 1991;42:917–919. 42. Campbell ML, Frank RR. Experience with an end-of-life practice at a university hospital. Crit Care Med 1997;25: 197–202. 43. Gramelspacher GP. 2001. End-of-life ethics. American Medical Association. http://www.ama-assn.org/ama/pub/ category/5145. html (accessed December 27, 2004). 44. Selwyn PA, Rivard M, Kappell D, et al. 2002. Palliative care for AIDS at a large urban teaching hospital: Program description and preliminary outcomes. www.edc.org/lastacts/ (accessed January 11, 2009). 45. Kemp C. Terminal Illness: A Guide to Nursing Care (2nd ed). Philadelphia, PA: Lippincott Williams & Wilkins, 1999. 46. Cleak H, Howe JL. Social networks and use of social supports of minority elders in East Harlem. Social Work Health Care 2002;38:19–38. 47. Zerwekh JV. Caring on the ragged edge: Nursing persons who are disenfranchised. Adv Nurs Sci 2000;22:47–61. 48. Patchell T. Suggestions for Effective Outreach. San Francisco: San Francisco Department of Public Health, Homeless Death Prevention Project, 1997.


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Betty D. Morgan

End-of-Life Care for Patients with Mental Illness and Personality Disorders My mom, she was schizophrenic all her life, but when she was regulated on her medicines she was good, really good. She was a good mother when she was herself—that’s what we would call it “being herself.” She was like that at the end. I’m so glad we had that time. —A son whose mother died of breast cancer after long-term mental illness

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Key Points Enhanced communication skills with an emphasis on therapeutic communication are needed to work with patients with Serious Mental Illness (SMI) and Personality Disorders (PD) Capacity/Competency Issues may arise when working with people with SMI and PD, however, simply having a diagnosis of SMI or PD does not necessarily indicate lack of capacity or competency Redefinition of family may need to take place in order to include the patient’s support system in their care Consultation/Collaboration is essential in caring for the population of people with SMI or PD to meet the needs of the patient and their support system

Approximately 26.2 of Americans (about one in four) aged 18 years and older are diagnosed with a mental disorder in any given year. This translates to more than 57 million people in the United States. A smaller number of people, approximately 6 of Americans (1 in 17) suffer from a serious mental illness (SMI) such as schizophrenia, bipolar disease, and severe depression.1 Comorbidity is common; almost half of the people who are diagnosed with a mental disorder meet criteria for a second mental disorder, with mood, anxiety, and addictive disorders being the most common comorbid illnesses.1 The Global Burden of Disease study presented data revealing that mental illness, including suicide, makes up 15 of the burden of disease in the United States, more than the burden caused by all cancers combined.2 People with SMI reportedly die 20 to 25 years earlier than the general population worldwide.3 The increase in mortality has been associated with both natural and “unnatural” causes of death, with unnatural causes defined as suicide, homicide, and accidental death.4 Comorbid medical illnesses that are commonly observed in those with SMI include hypertension, cardiac disease, diabetes and other metabolic conditions, respiratory illnesses, obesity, renal disease, cerebrovascular disease, cancer and HIV/AIDS.5 Additionally, an estimated one-third to one-half of the homeless people in the world have schizophrenia.6,7 This chapter examines what is known about palliative care and the mentally ill, including those with SMI and personality disorders (PDs). Special issues related to communication and treatment are presented as well as strategies for care for this population. Issues related to capacity and competency for decision-making as it relates to those with SMI and endof-life care is also discussed. Collaboration and consultation between providers is essential in providing end-of-life care for those with SMI.

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Research Related to SMI and End-of-Life Care Little research has been conducted in end-of-life issues with people with SMI, and those who have SMI have been underserved in terms of palliative care. Capacity of patients to make end-of-life decisions, provider concerns that end-of-life discussions would be upsetting, and lack of provider training and comfort in conducting discussions about end-of-life care have been cited as barriers to care and research.7 Foti and colleagues demonstrated that a group of community-residing adults with SMI were able to designate treatment preferences for end-of life care in response to scenarios involving end-oflife situations.8 Participants chose aggressive pain management in a scenario including pain and incurable cancer and were divided in their responses between waiting for a defined period before turning off life-support, terminating life support immediately, and keeping the person alive indefi nitely for a patient with an irreversible coma. The researchers also provided follow-up with participants who were distressed by the research questions but found that none required crisis intervention or were so distressed that psychiatric decompensation was a risk.9

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Barriers to Care for Patients with Mental Illness There are several barriers to consistent medical care for those with a mental illness; these barriers exist in primary care settings and apply to palliative care settings as well. Lack of preventive care or an ongoing relationship with a medical provider is a key issue for people with mental illness. People with SMI often seek care later in the course of the disease, resulting in costly services and complex care needs. Inadequate support systems that are common among those with SMI affect their ability to access medical care and navigate the complex health system. Adherence is a major problem in the treatment of people with SMI, and adherence to medical regimes for this population is compounded by mental health and addictive problems, homelessness, or lack of transportation to get to medical providers. Lack of financial resources may complicate the patient’s ability to receive timely care or treatment. Finally, stigma affects communication about all aspects of care of the medical illness, including assessment, explanation of treatment options, adherence, and the development of a trusting relationship with the patient.5

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Serious Mental Illness Psychotic symptoms may occur as a result of certain medical conditions, substance abuse, schizophrenia, schizoaffective disorder, mania, dementia, and depression. SMI includes illnesses such as schizophrenia and other psychotic disorders,

bipolar disease, and severe depression. A brief discussion of each of these illnesses will be presented; however, depression is described in detail in another chapter of the book. Treatment issues and special concerns in communication will be discussed as they relate to palliative care.

Schizophrenia Schizophrenia affects approximately 1 of U.S. population. However, it accounts for 40 of mental health facility beds and 9 of all hospital beds. It is a devastating illness to those who are affected by the illness—either the patient or the family of the patient. Several types of schizophrenia exist, including paranoid, catatonic, and undifferentiated schizophrenia. The symptoms of schizophrenia include what are referred to as positive symptoms (exaggerated or distorted function) and negative symptoms (diminution or loss of normal function). The positive symptoms include delusions, hallucinations, and disorganized and bizarre behavior and speech as well as deterioration of social behavior. The negative symptoms include flattened affect, decreased range and intensity of expression, anhedonia, restricted thought and speech, amotivation, apathy, and difficulty in mental focus and ability to sustain attention.6,7 Other psychotic disorders, including schizoaffective disorder, delusional disorder, brief psychotic disorder, and shared psychotic disorder (folie au deux), share many of the same psychotic symptoms with schizophrenia.6,7 Some of the more limiting symptoms of psychotic disorders that are of particular concern in palliative care settings are the ability to participate in decision-making, perceptual difficulties that can affect sensory integration, concrete thought processes, and difficulty in attention and concentration. The effect of perceptual difficulties has been demonstrated in research related to pain sensation in people with schizophrenia. Patients with schizophrenia may have reduced sensitivity to pain, and this could lead to delays in care or treatment.10

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Treatment of Psychotic Disorders Treatment is based on symptom management. Psychopharmacological and nonpsychopharmacological interventions are both utilized to treat psychotic disorders; however, nonpsychological interventions may not be effective unless interfering hallucinations or delusions are brought under some degree of control.

Pharmacological Treatment Table 40–1 lists first-generation or typical antipsychotics. These medications, developed in the 1950s and 1960s were very effective in the treatment of the positive symptoms, and some—but not all—of these medications had effect on negative symptoms. The negative side effect profi les of these medications, including extrapyramidal symptoms (EPS), tardive

End-of-Life Care for Patients with Mental Illness and Personality Disorders

Table 40–1 Antipsychotic Medications First Generation (Typicals)

Second Generation (Atypicals)

Chlorpromazine (Thorazine) Thioridizine (Mellaril) Perphenazine (Trilafon) Trifluoperazine (Stelazine) Fluphenazine (Prolixin) Thiothixene (Navane) Haloperidon (Haldol) Loxapine (Loxitane) Molindone (Moban) Pimozide (Orap)

Clozapine (Clozaril) Risperidone (Risperidol) Olanzapine (Zyprexa) Quetiapine (Seroquel) Ziprasidone (Geodon) Aripiprazole (Abilify)

Source: Adapted from Bezchlibnyk-Butler, et al., reference 24; Moller, reference 7.

dyskinesia (TD), and anticholinergic effects, had a profound effect on quality of life and medication adherence.11 In the 1980s the second-generation or atypical antipsychotics were developed (Table 40–1). These medications reduced both the positive and negative symptoms associated with schizophrenia, improved cognition, and were useful in treatment for patients who were considered treatment-refractory. The side effect profile of the second-generation drugs showed lower rates of EPS and TD and fewer anticholinergic effects. However, the emergence of metabolic syndrome, including pronounced weight gain, diabetes, hyperlipidemia, and hypercholesterolemia, has resulted in the need for close monitoring of their use in treating psychotic disorders.11 These medications result in cardiovascular problems and compound the existing higher prevalence of cardiovascular problems in people with schizophrenia. Pharmacological treatment of psychotic symptoms in conjunction with palliative care treatment should be closely monitored by consultation with the psychiatric providers. Any change in mental status should be immediately evaluated. Screening for the presence of delirium, which can occur frequently at end of life should occur with any change in mental status. It should not be assumed that the psychiatric illness is the cause of a mental status change until a physical cause is ruled out. Several of the typical and atypical antipsychotic medications share common metabolic pathways with opioid analgesics. Inhibition or potentiation of the antipsychotic or the opioid medication is possible; therefore, close monitoring is essential.11

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to the problem. The Massachusetts decision resulted in the Rogers decision, which decreed that a guardian needed to be appointed for incompetent patients to deal strictly with the psychiatric medication in question and that the final decision would be left to a judge. The concept of substituted judgment— that is, what the person would consent to if they were competent—is how the judge evaluated the question of whether to give the guardian the right to overrule the patient’s right to refuse medication.12 Other states have panels, independent consultants, or psychiatrists make the decision about right to refuse medication. It is important to know the state law about the right to refuse medication so that each nurse can practice within the rules and regulations under which he/she is governed.

Nonpharmacological Treatments Nonpharmacological interventions include psychotherapeutic strategies such as supportive psychotherapy, cognitive-behavioral therapy (CBT), group therapy, and complementary therapies. Collaborative care with psychiatric providers can include additional supportive therapy to assist patients facing a terminal illness. People with SMI face the same end-of-life concerns as patients without mental illness, such as dealing with pain and suffering, fear of what lies ahead, fear of becoming a burden, spiritual concerns, financial concerns, and difficulty “saying goodbye.”13 People with schizophrenia may need additional support and extra time to process medical information. This extra support is best provided by professionals who already have a relationship with the patient, and the psychiatric providers should be included in discussions of treatment options in the palliative care setting.

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Advanced Directives Advanced directives, in terms of decisions about psychiatric care in a future emergency situation, have been a focus of concern over the last decade. Providing a patient with the opportunity to discuss their wishes, in advance, has assisted with the need to have a legal competency hearing to determine a course of treatment. Including a discussion of the patient’s wishes for end-of-life care is an area that needs further exploration in psychiatric settings. Research has indicated a low rate of advanced directives for either psychiatric care or medical care in patients with SMI.14

o] Right to Refuse Medication

Capacity and Competency

In the 1970s psychiatric patients fi led lawsuits related to their rights to refuse medication treatment. Legal decisions in Massachusetts and New York, the states where the most prominent cases were fi led, resulted in different approaches

The ability to make decisions about treatment is a cornerstone of good palliative care. Controversy can occur when a person loses the capacity to participate in informed decision-making, or a competent person refuses life-sustaining treatments.

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A general rule is that all competent persons have the right to make their own decisions, even when decisions conflict with what a majority would decide under similar circumstances.15 When the patient is a person who has schizophrenia or another psychiatric disorder, the ability to make decisions may be compromised by psychotic thought processes. However, having a diagnosis of a mental illness, even one with psychotic features, does not automatically mean that a person is incompetent.15 When treatment decisions of the patient are questioned by providers and there is no advanced directive about treatment wishes, then a psychiatric evaluation must be requested. Capacity indicates the ability to understand the problem and make decisions. A psychiatric provider makes a “clinical assessment of the patient’s capacity to function in certain areas.”16 Competency is a legal term and is decided by a court of law based on the capacity assessment of a psychiatric provider. Competency is usually confined to a specific area or task, such as the ability to make a will, the ability to testify in court, decision-making capacity, or the right to refuse treatment.15 Applebaum & Grisso outlined four criteria used to determine capacity to consent to treatment17: • Patient expression of a preference • Ability to understand the illness, the prognosis with and without treatment, and the risks and benefits of the treatment (factual understanding) • An appreciation of the significance of the facts (significance of the facts) • Ability to use the information in a rational way to reach a decision in a logical manner (rationality of the thought processes). Intense pain, depression, delirium, dementia, and psychosis are the most common causes of incompetence.15 However, the existence of one of these conditions does not necessarily mean that a person is incompetent. Careful assessment of each individual is necessary to determine capacity and competency. Competency is a legal term, but most courts do accept the evaluation of capacity provided by the psychiatric professional. A patient is not deemed competent or incompetent until a court of law rules.

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Aggression and Psychotic Disorders Patients enter health-care systems in great distress, and palliative care settings are no exception. When the patient has a SMI the distress may be even greater than in the general population, because people with SMI may have inadequate coping resources and are in a crisis state when dealing with a life-threatening illness. Most often, people become aggressive when they feel threatened in some way. The aggressive behavior may be the result of perceptual problems, such as hallucinations or delusions, and the aggressive behavior often masks a lack of confidence in self. Aggressive behavior may be a way to enhance self-esteem by overpowering others.18

There are some important predictors of aggressive behavior, including impulsivity, hostility, family history of violent or abusive behavior, substance use, and irritability.19 Prevention of aggressive behavior focuses on early recognition of escalating behaviors, such as pacing, nonverbal expressions, yelling, or an angry tone of voice. Allowing the person a chance to talk may defuse the situation. It is important for the nurse to use nonthreatening body language, and to communicate with a calm but firm voice while conveying respect for the patient and his/her feelings. Allowing the patient some choice about the situation is often a way to help the patient gain some control.19

Communication Issues and Psychotic Disorders The cornerstone of both palliative care and psychiatric care is the importance of communication and the establishment of a trusting, therapeutic relationship between the nurse and the patient. Traditionally, psychiatric providers are not comfortable with medically ill patients and medical providers are not comfortable with psychiatrically ill patients. Additionally, many people with mental illness are housed in nontraditional settings. Staff of any of these settings, including medical hospital units, palliative care units, or psychiatric units as well as the homeless shelters, prisons, and nursing homes may be ill-equipped to deal with psychiatric problems in the face of terminal illness. Education of all staff about mental illness and end-of-life care in these settings will result in better care for patients with SMI.5 There are additional communication issues and strategies involved when providing palliative care to those with psychotic illnesses. The role of stigma affects all aspects of care and communication. Patients may conceal or not report pain and other symptoms because of fear of the meaning of the symptom, self-blame, guilt, anger, or denial. As mentioned previously, mental status changes should be evaluated for a medical cause of delirium before assuming that altered perceptions or hallucinations are the result of psychotic disorder. If the patient is delusional or hallucinating, then a safety assessment should be completed and arrangements made to keep the patient safe from self-harm. The content of the hallucinations or delusions can be very important. Any thoughts or hallucinations that the patient expresses concerning the need to die or presence of command hallucinations telling the person to die require immediate psychiatric consultation. Patient safety mechanisms, such as evaluation by emergency services (for outpatient settings) or use of sitters or frequent observation (for inpatient settings) should be instituted until the psychiatric assessment can occur. Maintaining a calm presence and use of a quiet tone of voice, nonthreatening demeanor, and stance are important strategies when dealing with all patients who are psychotic. Decrease of environmental stimuli, such as turning off a radio or television, will decrease distractions and help the patient focus on the immediate medical care. Because

End-of-Life Care for Patients with Mental Illness and Personality Disorders the ability to concentrate or pay attention may be affected by the mental illness, detailed explanations may be needed, with additional time allowed for the patient to process the information. Conversations focused on understanding what the patient has processed about the information may need to take place over lengthened periods of time. Patients may also tend to focus on concrete parts of the information, and it can be helpful to provide alternative ways to view the situation if a patient appears to be stuck or focused on one particular aspect of the issue. Occasionally, people with psychotic disorders may become more focused and less psychotic in the face of a life-threatening illness. Patients with SMI who are actively hallucinating or delusional, as well as those who may be delirious and experiencing altered perceptions, should receive explanations of all physical care to be delivered. Before touching the patient, it is important to let he/she knows what is to be done, as the patient might misinterpret the touch and react as if he/she is being assaulted. Patients with SMI may have a different sense of private space and may also react to violations of personal space.

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Redefinition of Family For many people with SMI there are strained, distant, or nonexistent ties with family of origin. Some of this disconnection may result from years of strain, disappointment, financial burden, and fear caused by threatening behavior. For many people with SMI who are cared for by the state government, long-term relationships with psychiatric providers or staff of mental health housing programs have become a substitute for family. The inclusion of these staff into the palliative care team is essential to ensuring that the treatment will be properly performed and for providing the day-to-day intensive support that may be required for the patient. Similarly to family, staff will also have their own particular needs for support because most psychiatric providers do not have end-of-life care experience or education. Fellow patients with SMI are the other component of family that needs to be considered in palliative care of people with SMI. Occasionally, long-term relationships with other people with SMI are the most significant relationships in the person’s life. Special needs for support should be considered for this group of people as well. Although palliative care staff may not be involved in delivering this support, the collaborative partnerships with psychiatric providers should be available for support for this group of people.

9= Case Study A 54-Year-Old Woman with Schizophrenia Joan is a 54-year-old white woman who was diagnosed with schizophrenia at age 24 years. She has had multiple hospitalizations and is currently living in a group home. She sees a psychiatrist every 2 months and has visits at the group

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home by a psychiatric nurse who administers her Prolixin deconoate injection every month. Her caseworker at the group home reports to the nurse and psychiatrist that she is very concerned about the patient’s physical health. It has been 3 years since Joan has seen a medical provider (she has refused to go to appointments that have been set up for her), and Joan has become fatigued and has lost 23 pounds in the last 9 to 10 months. After much discussion between providers and the patient, arrangements are made for the caseworker to go with Joan to her medical appointment. The physician who examines Joan notes a large mass on her left breast and after completing diagnostic tests has confirmed a diagnosis of stage 4 breast cancer. Joan is reluctant to discuss the treatment options provided for her, and the psychiatric team is attempting to involve her family in care planning. Joan is estranged from her closest relative, an older sister who lives a half-hour from Joan’s group home. Joan does not seem to be reacting to the diagnosis and cuts short attempts to discuss her care and the need for treatment. Her caseworker is successful in contacting the sister, who agrees to visit Joan and discuss treatment options. At the first visit Joan is very pleased to see her sister. The caseworker meets with the two of them and discusses the cancer diagnosis and the treatment options. Joan’s response to her sister is, “I don’t want to be like Momma was . . .” The sister tells the caseworker that their mother had breast cancer and was treated with chemotherapy when she and Joan were ages 10 years and 12 years, respectively. Their mother was very sick with the treatment and unable to really participate in their lives and died during chemotherapy. She says that she believes that Joan would not want to go through that, given her poor prognosis. This is new information for the members of the psychiatric team, who had been encouraging Joan to participate in the treatment. The caseworker is especially opposed to stopping the effort to get Joan to accept treatment and feels that she is not getting the best advice from her sister. The sister is in support of comfort and compassionate care only for Joan and is happy that they have been able to reconnect before Joan dies. This case illustrates several issues of importance: • The importance of family and history • The need for regular medical care of patients with SMI • Need for expansion of definition of family—often residential treatment staff are the ones with daily contact and may best know the patient’s wishes regarding care; they may also have their own grieving and bereavement process that should be accounted for

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Bipolar Disease People with bipolar disorder have more co-occurring medical conditions—especially cardiovascular disease and other

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problems related to metabolic syndrome—than those with other chronic mental illnesses.20 As with psychotic disorders like schizophrenia, the use of second-generation antipsychotic medications as mood stabilizers for those with bipolar disease has increased the risk of diabetes and subsequent cardiovascular disease among people with this diagnosis.20 Bipolar disease is included under the diagnostic category of mood disorders and includes major depressive disorder as well as bipolar disease, which is described as Bipolar I or Bipolar II.6 Depression is discussed in detail in Chapter 20. Bipolar I is described with periods of depression and some periods of an elevated mood, either hypomania or mania. Symptoms of hypomania or mania include an inflated self-esteem, grandiosity, decreased need for sleep, pressured speech, flight of ideas, increase in activities, and excessive involvement in pleasurable activities that have a high potential for consequences.6 Severe mania can present more with symptoms of agitation than euphoria and often includes psychotic episodes as well. Bipolar II is characterized by at least one depressive episode and at least one hypomanic episode but with a history of full mania.6 Treatment of bipolar disorder includes mood-stabilizing medications such as lithium and other drugs (Table 40–2). When patients are in a manic state or a severe depression, they may lack decision-making capacity but are then capable of making decisions when they become stable. A psychiatric provider should be a part of the palliative care team and

Table 40–2 Mood Stabilizers Antimania medications • Lithium (Eskalith, Lithobid) • Lithium citrate Benzodiazepines • Alprazalam (Xanax) • Chlordiazepoxide (Librium) • Clonazepam (Klonopin) • Diazepam (Valium) • Lorazepam (Ativan) • Oxazepma (Serax) • Prazepam (Centrax) Anticonvulsants • Valproic Acid (Depakene, Depakote) • Lamotrigine (Lamictal) • Carbamazepine (Tegretol) • Gabapentin (Neurontin) • Oxcarbazepine (Trileptal) • Topiramate (Topamax) • Tiagabine (Gabatril) Calcium channel blockers • Verapamil (Calan) • Nifedipine (Adalat, Procardia) • Nimodipine (Nimotop) Source: Adapted from Bezchlibnyk-Butler, et al., reference 24.

provide close follow-up for people with bipolar disorder. Any medications used in treatment of the underlying medical illness should be reviewed for their potential to induce a manic episode.13 As with psychotic disorders, there are many psychotherapeutic interventions that are utilized in treatment of people with bipolar disorder, but patients frequently need to be stabilized with medications before these treatments are able to be utilized effectively.

Communication Issues and Bipolar Disorder Communicating with someone during a manic episode can be difficult because patients may be emotionally labile, very talkative (with pressured speech), may not be able to stop and listen or concentrate, and often reject help.21 Patients can be quite charming and even entertaining during some stages of a manic episode. Staff members need to see these presentations as a part of the illness and not join in grandiose discussions or plans. Patients may need to be gently redirected so that they do not go off on tangents unrelated to the medical issue at hand. They may also need firm but caring limits set on behaviors that might affect others’ care, such as wandering into other patients’ rooms, becoming inappropriately involved in others’ care, and intrusion in staff conversations with other patients. Assisting patients in calming behaviors such as sitting quietly with the patient or closing the door to the room to decrease external stimuli are strategies that may be helpful. Inclusion of the psychiatric provider in the team will allow for communication of information about the best approach to take with an individual suffering from [with] bipolar disorder. Often, one of the first symptoms of a manic episode is the decreased need for sleep. Early reporting of change of sleep habits is important because it is easier to help someone regain stability early in the course of a manic episode. If the patient is beginning to exhibit signs of mania and/or psychosis, then assessment of safety issues and the potential for suicide must be considered. The importance of early intervention in escalating symptoms and good interteam communication cannot be emphasized enough when caring for someone with bipolar disorder.

9= Case Study A 45-Year-Old Man Suffering from Bipolar Disease Jim is a 45-year-old white male suffering from bipolar disease. He has had a very difficult course of his disease, with multiple hospitalizations following suicide attempts. Additionally, he has HIV and Hepatitis C. His HIV is in good control, and he has been fairly consistent in taking his HIV medications for the last 9 months. For the last 2 years, he has been followed for supportive therapy by a Psychiatric Clinical Nurse Specialist. His older brother is the only family member who has remained involved in his life and has had to act as his guardian for a number of years because of Jim’s psychosis

End-of-Life Care for Patients with Mental Illness and Personality Disorders during manic episodes as well as his severe depression. The brother was told years ago that Jim is likely to succeed in killing himself at some point because of the severity of his bipolar disease. Jim was diagnosed with pancreatic cancer 4 months ago and has been given less than a year to live. The physician discusses his care with Jim and his brother and has primarily followed the brother’s wishes for Jim’s care. Shortly after this diagnosis, Jim stops taking all of his medications and is rehospitalized with severe depression and suicidal thoughts. He has recompensated and returned to his mental health halfway house. He now wants to live and is very meticulous in adhering to his medication regimen. Hospice and palliative care services were started about 1 month ago. The Psychiatric Clinical Nurse Specialist and hospice nurse convene a team meeting to coordinate care among providers. His brother has been unable to accept the diagnosis and continues to want very aggressive treatment for Jim, whereas Jim’s psychiatric caseworker believes that Jim is starting to focus on comfort care. His brother talks freely about how psychiatric staff expected him to die years ago from his bipolar disease and how he never gave up hope for a better life for his brother. The coordinated care team has set up a meeting with Jim and his brother to discuss continuing care. o] This case highlights several factors that are important in the palliative care of patients with mental illness: • Some patients with suicidal histories may put suicidal tendencies aside in the face of a terminal illness and fight to live, in a different way than their history would indicate, as long as their quality of life is satisfactory. • Chronic severe mental illness may have depleted family coping resources. • Family may be in a crisis as a result of unexpected medical illness in addition to mental illness. • The fact that the brother has had to make decisions for psychiatric care in the past does not preclude the patient’s right to make decisions about end-of-life care. • If the patient is not currently suicidal or psychotic, then his right to make decisions about ending aggressive treatment should be discussed with both the patient and his brother at length to help determine the best course of action.

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Personality Disorders and Palliative Care People with PDs can present major challenges for palliative care providers, partly because of the stigma associated with PDs. Personality traits are enduring patterns of perceiving, relating to, and thinking about the world and how one relates to the world.6 The enduring patterns of response

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and behavior deviate from social norms and present in the areas of: • • • •

Cognition (ways of perceiving self, others, events) Affectivity (range, intensity, lability, appropriateness) Interpersonal functioning Impulse control

There is a lack of flexibility and maladaptive behavior that can cause impairment in function and distress for the person.6 All humans have vulnerabilities that are accentuated when the person is under stress. Approaching personality traits as vulnerabilities that are accentuated by stress, and therefore result in the use of predictable coping mechanisms, can be a useful way to change stigmatized attitudes toward people with PDs. It is important to identify traits or vulnerabilities and move beyond labels so that treatment can be geared to preparing for the expected response, minimizing maladaptive coping mechanisms and replacing them with more functional coping mechanisms. PDs are grouped into three clusters based on some descriptive similarities. Cluster A PDs include paranoid, schizoid, and schizotypal. PDs and people with these disorders often appear odd, eccentric, or paranoid. People with paranoid PD have a pervasive distrust and suspiciousness of others. The person will be reluctant to trust or confide in anyone and may suspect that others are trying to cause him/her harm.6 The person with schizoid PD has a pervasive pattern of detachment from relationships, even with family. This person prefers solitary activities, lacks close relationships, and may be emotionally detached or have a flat affect. People with schizotypal PD are uncomfortable with close relationships and have cognitive distortions, including ideas of reference, odd beliefs or magical thinking, unusual perceptions, odd thinking and speech, inappropriate affect, and social anxiety.6 Cluster B PDs include antisocial PD, borderline (BPD), histrionic PD, and narcissistic PD. People with this group of PDs often appear dramatic, emotional or erratic, and it is this cluster that often presents the biggest challenge to health care providers.6 The person with antisocial PD has a pervasive disregard for, and violation of, the rights of others. They fail to conform to most social norms and can be impulsive, irritable, and aggressive at times. People with BPD have a lifelong pattern of instability of interpersonal relationships and self-image and either idealize or devalue others, or fluctuate between the two views of the same person. People with BPD are impulsive in ways that are damaging to themselves and frequently have recurrent suicidal behavior. They have a chronic feeling of emptiness and therefore constantly seek attention and contact with others to fill themselves.6 People with histrionic PD have a pattern of excessive emotionality and attention-seeking and can be inappropriately provocative or sexually seductive. People with these traits are easily influenced by others and often consider relationships to be more intimate than they actually are.

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People with narcissistic PD need admiration, lack empathy for others, and have a sense of entitlement.6 Cluster C PDs include avoidant PD, dependent PD, and obsessive-compulsive PD. These disorders share anxiety and fear as their major characteristics.6 The person with avoidant PD is hypersensitive to negative evaluation, has feelings of inadequacy and is severely restrained in relationships. This person is reluctant to take personal risks or engage in new activities.6 Someone with dependent PD has an excessive need to be taken care of that exhibits itself by submissive and clinging behavior and fear of separation. People with this PD have difficulty making decisions and need a lot of advice and reassurance from others. They have difficulty expressing disagreement with others because of fear of loss of support. Finally, obsessive-compulsive PD is evidenced by a preoccupation with orderliness, perfectionism, and control. The person with obsessive-compulsive PD shows perfectionism that interferes with completion of tasks, is inflexible and overly conscientious, may be unable to throw out useless objects, and is miserly toward spending for self and others. This person may be quite rigid and stubborn in thought and behavior.6

Treatment of Personality Disorders By description, PDs are enduring patterns and, therefore, are not likely to change rapidly. Current evidence does suggest that people with PDs can be treated, but realistic goals must be established for treatment. Symptom management and specific therapies such as CBT and dialectical behavioral therapy (DBT) have demonstrated effectiveness with specific PDs.22 The relationship with a psychiatric provider is a primary tool in the treatment of people with PDs. Comorbid psychiatric conditions are common with PD, so symptom management of anxiety, depression, and other psychiatric symptoms is important to improve quality of life.

Communication Issues and Personality Disorders Some general principles related to communication with patients with PD can be identified. Clear information provided verbally and in writing with repeated discussions about the information can help with distortions and misinterpretation that are common in people with PDs. A calm and nonjudgmental approach is also the cornerstone of good communication in the process of developing a therapeutic relationship with patients. All discussion of suicidal ideation should be taken very seriously and a thorough psychiatric assessment should be performed, even when repeated threats of suicide occur. The therapeutic alliance may take a long time to develop, but nonetheless the development of this alliance is a goal for treatment. CBT techniques are helpful for people with PD to examine maladaptive ways of viewing their environment. Supportive therapy is useful in helping people with PD adjust to the issues that arise in palliative and end-of-life care.

Obstacles to therapeutic communication that occur with people suffering from [with] PD include issues such as resistance, transference, countertransference, and boundary violations.23 Resistance is often unconscious and is usually employed to avoid anxiety. Transference also occurs when a patient unconsciously transfers feelings or attitudes from one person in their life onto the health-care provider.23 Countertransference is the emotional reaction of the healthcare provider toward the patient, stimulated by their own past feelings toward someone in their personal life. Boundary violations occur when the health-care provider goes beyond the standards of a therapeutic relationship and enters a more social relationship with a patient. Communication issues with patients suffering from Cluster A disorders focus on the establishment of a therapeutic relationship, because distrust, suspiciousness, and withdrawal from interpersonal interactions are common. Engaging a nonthreatening approach and allowing the patient to engage with the provider at his/her own speed is very important. The intensity of a one-to-one conversation may be difficult for those with Cluster A PD; therefore, focusing conversation on an external issue or task may be a helpful way to lessen the intensity. Communication with people with Cluster B disorders are often the most problematic for health-care providers. People with these disorders tend to have an increased risk of suicide, violence toward others, and self-mutilating behaviors as well as chronic low self-esteem, ineffective coping, and impaired social interactions.22 Volatile changes in emotion as well as splitting behaviors are characteristic of BPD. Development of a consistent approach will minimize the patient’s ability to split staff and minimize the heightened feelings that can arise in caring for this population. Providers should be alert for their own countertransference reactions toward patients with PD, as this is a common issue. Patients with PD can evoke strong reactions from staff that may interfere with delivery of quality care. Staff support in working through these reactions so that care is not affected can be provided through consultative relationships with psychiatric providers. Many Psychiatric Clinical Nurse Specialists have experience with staff support groups to handle such issues. Communication issues with people suffering from Cluster C diagnoses also focus on the development of a therapeutic relationship geared toward assisting patients in identifying their fears and anxiety as it relates to palliative care treatment and issues.23 Helping people identify their anxiety, decrease the maladaptive response to the anxiety, and increase their supportive relationships with others are essential issues in dealing with people with in this cluster.

9= Case Study A 39-Year-Old Woman with Colon Cancer Eileen is a 39-year-old woman suffering from colon cancer. She has been hospitalized twice in the last 6 months and is now readmitted to the oncology unit. The staff is not

End-of-Life Care for Patients with Mental Illness and Personality Disorders pleased to hear about her readmission because she was a management problem on her last admission. She was frequently upset with the night shift nurses and called the patient advocate several times a week to complain about them. She also left the unit frequently and was not available at treatment times. She complained bitterly about one nurse and demanded someone else care for her when that nurse was assigned her care. This nurse is very upset and asks the nurse manager to assign Eileen’s care to another nurse. The nurse manager calls the psychiatric consultation nurse and asks for help in developing a plan of care for the patient and requests a meeting with the nursing staff to discuss the plan and their feelings about the Eileen as a patient. o]

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Summary Palliative care providers often feel poorly prepared to deal with people with SMI and/or PD. Conversely, psychiatric providers feel poorly prepared to deal with medical care and endof-life care. Collaborative partnerships can enhance the care given to people with SMI who are in need of palliative care services. Care delivery sites need to be examined for the optimal situation to provide both palliative care and treatment in an environment that also is able to provide optimal support and treatment by psychiatric providers. If the patient has a preference for a place to receive end-of-life care, all attempts possible can be made to address this preference. If the person considers a halfway house or psychiatric unit to be their home, and they desire to die at home, attempts to provide end-of-life care in that setting should be discussed just as it would be with a person wanting to die in their more traditional home. Nurses have often been instrumental in making this kind of care possible in a situation that has not previously involved this level of care. As strong advocates for their patients, nurses have found a way to push themselves into new arenas of care and have developed new collaborative partnerships for the ultimate benefit of their patients. Collaboration between psychiatric providers and palliative care providers is a new area in which nurses can lead the way to ultimately provide new skills for each other and meaningful end-of-life experiences for people with SMI as well as their families.

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13. 14. 15.

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17. 18.

References 1. http://www.nimh.nih.gov/health/topics/statistics/index.shml (accessed November 20, 2008). 2. Lopez AD, Mathers CD, Ezzati M, Jamison DT, Murray CJL. Global Burden of Disease and Risk Factors. New York, NY: The Oxford University Press, 2006. 3. Parks J, Svendsen D, Singer P, Foti M. 2006. Morbidity and mortality in people with serious mental illness. National

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Association of State Mental Health Program Directors (NASMHPD) Medical Directors Council. Alexandria, VA. 22314. http://www. nasmphd.org/generalFiles/publications/ med_directors.pub (accessed on November 20, 2008). Hiroeh U, Appleby L, Mortensen PB, Dunn G. Death by homicide, suicide and other unnatural causes in people with mental illness: A population-based study. Lancet 2001;358(9299): 2110–2112. Baker, A. Palliative and end-of-life care in the serious and persistently mentally ill population. J Am Psych Nurses Assoc 2005;11(5):298–303. American Psychiatric Association (APA). Diagnostic and Statistical Manual of Mental Disorders (4th ed, text rev) (DSMIV-TR). Washington DC: APA, 2000. Moller MD. Neurobiological responses and schizophrenia and psychotic disorders. In: Stuart GW, Laraia MT, eds. Principles and Practice of Psychiatric Nursing (8th ed). St. Louis, MO: Mosby, 2005. Foti ME. “Do it your way”: A demonstration project on end-oflife care for persons with serious mental illness. J Palliat Med 2003;6(4):661–669. Foti ME, Bartels SJ, Van Citters AD, Merriman MP, Fletcher KE. End-of-Life treatment preferences of persons with serious mental illness. Psychiatr Serv 2005;56(5):585–591. Kudoh A, Ishihara H, Matsuki A. Current perception thresholds and postoperative pain in schizophrenic patients. Reg Anesth Pain Med 2000;25(5):475–479. Chan P. Psychopharmacology. In: Fortinash KM, Holoday Worret PA. Psychiatric Mental Health Nursing (4th ed). St. Louis, MO: Mosby, 2008. Laben JK, Yorker BC. Legal issues in advanced practice psychiatric nursing. In: Burgess AW. Advanced Practice Psychiatric Nursing. Stamford, CT: Appleton & Lange, 1998. Miovic M, Block S. Psychiatric disorders in advanced cancer. Cancer 2007;110(8):1665–1676. Srebnick DS, La Fond JQ. Advance directives for mental health treatment. Psychiatr Serv 1999;50(7):919–925. Schouten R, Brendel RW. Legal aspects of consultation. In: Stern TA, Fricchione GL, Cassem HNH, Jellinek MS, Rosenbaum JF, eds. Massachusetts General Hospital Handbook of General Hospital Psychiatry (5th ed). Philadelphia, PA: Mosby: 2004. Schouten R, Brendel RW. Legal aspects of consultation. In: Stern TA, Fricchione GL, Cassem HNH, Jellinek MS, Rosenbaum JF, eds. Massachusetts General Hospital Handbook of General Hospital Psychiatry (5th ed). Philadelphia, PA: Mosby: 2004:356. Applebaum PS, Grisso T. Assessing patient’s capacities to consent to treatment. N Engl J Med. 1988;319:1635–1638. Hamolia CD. Preventing and managing aggressive behavior. In: Stuart GW, Laraia MT. Principles and Practice of Psychiatric Nursing (8th ed). St. Louis, MO: Mosby, 2005. American Psychiatric Nursing Association (APNA). Coping with aggressive behavior in patients with schizophrenia: A roundtable discussion. Counseling Points: Enhancing Patient Communication for the Psychiatric Nurse. September 2006. Ridgewood, New Jersey: Delaware Media Group. Kilbourne AM, Post EP, Nossek A, Drill L, Cooley S, Bauer MS. Improving medical and psychiatric outcomes among individuals with Bipolar disorder: A randomized controlled trial. Psych Serv 2008;59(7):760–768.

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21. McCasland LA. Providing hospice and palliative care to the seriously and persistently mentally ill. J Hosp Palliat Nurs 2007;9(6):305–313. 22. Marcus PE. Personality disorders. In: Fortinash KM, Holoday Worret PA. Psychiatric Mental Health Nursing (4th ed). St. Louis, MO: Mosby, 2008.

23. McDonald SF. Therapeutic communication. In: Fortinash KM, Holoday Worret PA. Psychiatric Mental Health Nursing (4th ed). St. Louis, MO: Mosby, 2008. 24. Bzchlibnyk-Butler KZ, Jeff ries JJ. Clinical Handbook of Psychotropic Drugs (16th ed). Toronto, Canada: Hofgrefe & Huber Publishers, 2006.

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Deborah Witt Sherman and Carl A. Kirton

Patients with Acquired Immunodeficiency Syndrome I thank God that there are medications to treat AIDS, but there are serious side effects and they can make you feel quite sick. Yet, I want to live, and I will do everything possible to stay alive. Some people say AIDS is now a chronic disease. There are other medications to treat my symptoms, and there is my belief in God that lifts my spirit. My family helps me care for my kids, but it is hard on everyone. We all need support because we are all suffering one way or another. —Anonymous patient

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Key Points With HIV/AIDS, the severity, complexity, and unpredictability of the illness trajectory have blurred the distinction between curative and palliative care. The focus of AIDS care must be on improving quality of life by providing care for the management of pain and other symptoms, while addressing the emotional, social, and spiritual needs of patients and their families throughout the illness trajectory. With up-to-date knowledge regarding HIV disease, including changes in epidemiology, diagnostic testing, treatment options, and available resources, nurses can offer effective and compassionate care to patients and families at all stages of HIV disease.

In 28 years, AIDS has escalated from a series of outbreaks in scattered communities in the United States and Europe to a global health crisis. Although the biomedical paradigm of highly active antiretroviral therapy (HAART) has significantly reduced the mortality from HIV in the developed world and has transformed AIDS into a manageable chronic illness, the reality in developing countries is that people are not “living with AIDS” but, rather, “dying from AIDS” because of a lack of access to medications and appropriate healthcare.1 In the late stages of HIV, there is a false dichotomy created between disease-specific, curative therapies and symptom-specific palliative therapies.2 Although little attention has been given in the past to palliative care as a component of AIDS care, it is now realized that the palliation of pain, symptoms, and suffering must occur throughout the course of a life-threatening disease, not just in the final stages near the end of life. AIDS has stimulated the need to evaluate clinical practice when curative and palliative care interface. No longer should there be an abrupt demarcation between palliative care and treating disease in individuals with lifethreatening, progressive illnesses.3 Both the public and health professionals have been troubled by the reality of over- and undertreatment of pain and symptoms in individuals with life-threatening illnesses who may suffer severe, unremiting pain in their final days.4 Such concern extends to the care of patients with HIV and the resultant illness of AIDS because no cure has yet been found. Therefore, the focus of care must be on improving quality of life by providing palliative care for the management of pain and other physical symptoms while addressing the emotional, social, and spiritual needs of patients and their families throughout the illness trajectory. Although current therapies have increased the life expectancy of people with HIV/AIDS, the chance of experiencing symptoms related not only to the disease but to the effects of therapies also increases. Furthermore, palliative measures can be beneficial in ensuring tolerance of and adherence to difficult pharmacological regimens.5 767

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Because patients are surviving longer in the latter stages of illness, an integrated model must be developed to provide comprehensive care for patients with advanced AIDS and their families.2 This chapter provides an overview and update of the comprehensive care related to HIV/AIDS and addresses the palliative care needs of individuals and families living with and dying from this illness. With this information, nurses and other health-care professionals will gain the knowledge to provide effective and compassionate care, recognizing the need for both curative and aggressive care as well as supportive and palliative therapies to maximize the quality of life of patients and their family caregivers.

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Overview and Update: Incidence, Historical Background, Epidemiology, and Pathogenesis Incidence of HIV/AIDS HIV/AIDS is a worldwide epidemic affecting more than 33 million people. An estimated 2.5 million acquired HIV in 2007, and an estimated 2.1 million people died from AIDS.6 In 2008 the Centers for Disease Control and Prevention (CDC) reported that from the beginning of the epidemic through December 2006, there were more than 1,014,797 reported cases of AIDS in the United States. Of these cases, 783,786 cases were males, 189,566 were females, and an estimated 9,144 cases were children under age 13 years.7 In the United States, the estimated number of deaths of persons with AIDS is 565,927, including 540,436 adults and adolescents, and 5,369 children under age 15 years.7 Although HIV is no longer a leading cause of death in the United States, in populations and nations without access to antiretorviral therapy and treatments for opportunistic infections, AIDS remains a life-threatening and progressive illness that marks the final stage of a chronic viral illness.

Historical Background of HIV/AIDS In the early 1980s, cases were reported of previously healthy homosexual men who were diagnosed with Pneumocystis carinii (now known as Pneumocystis jiroveci) pneumonia and an extremely rare tumor known as Kaposi’s sarcoma (KS). The number of cases doubled every 6 months, with further occurrence of unusual fungal, viral, and parasitic infections, and researchers realized that the immune systems of these individuals were being compromised. Over time, reports began to emerge of the appearance of similar unsual infections and immune system destruction beyond the homosexual community. This new disease was also seen among heterosexual partners, IV substance users, persons with hemophilia, individuals receiving infected blood products, and children born to women with the disease. These epidemiological changes alerted health professionals to the existence of an infectious agent transmitted via infected body fluids, particularly through sexual transmission and blood products.8

Origins of HIV can be traced through serum studies to 1959, when crossover mechanisms between humans and primates via animal bites or scratches in Africa led to HIV transmission. In 1981, the virus was identified and named lymphadenopathy-associated virus (LAV). By 1984, the term had been changed to human T-lymphocytic virus type III (HTLV-III) and in 1986 renamed the human immunodeficiency virus type 1 (HIV-1). HIV-1 accounts for nearly all the cases reported in the United States, whereas a second strain, HIV-2, accounts for nearly all the cases reported in West Africa. There have only been 79 cases of HIV-2 reported in the United States, the majority occurring in immigrants from Africa. Globally, AIDS is characterized as a volatile, unstable, and dynamic epidemic that has spread to new countries around the world. It has become increasingly complex because of the viruses’ ability to mutate and crosses all socioeconomic, cultural, political, and geographic borders.9 To date, the following scientific progress has been made in combating the infection: (1) the virus has been identified; (2) improved methodologies for screening for HIV infection have been implemented; (3) vaccines have been tested; (4) biological and behavioral cofactors have been identified related to infection and disease progression; (5) prophylactic treatments are available to prevent opportunistic infections; (6) HIV RNA quantitative assays, which measure viral load (VL), have become essential to evaluate the response of the disease to treatment; and (7) the latest advances in treatment involve the use of combination antiretroviral therapies.10 However, epidemiological evidence heightens concern regarding changes in the population affected and the morbidity and mortality still associated with the disease.

HIV Pathogenesis and Classification Like all viruses, the HIV virus survives by reproducing itself in a host cell, usurping the genetic machinery of that cell, and eventually destroying the cell. The HIV is a retrovirus whose life cycle consists of (1) attachment of the virus to the cell, which is affected by cofactors that influence the virus’s ability to enter the host cell; (2) uncoating of the virus; (3) reverse transcription by an enzyme called reverse transcriptase, which converts two strands of viral RNA to DNA; (4) integration of newly synthesized proviral DNA into the cell nucleus, assisted by the viral enzyme integrase, which becomes the template for new viral components; (5) transcription of proviral DNA into messenger RNA; (6) movement of messenger RNA outside the cell nucleus, where it is translated into viral proteins and enzymes; and (7) assembly and release of mature virus particles out of the host cell.10 These newly formed viruses have an affinity for any cell that has the CD4 molecule on its surface, such as T lymphocytes and macrophages, which become major viral targets. Because CD4 cells are the master coordinators of the immune system response, chronic destruction of these cells severely compromises individuals’ immune status, leaving the host susceptible to opportunistic infections and eventual progession to AIDS.

Patients with Acquired Immunodeficiency Syndrome HIV and AIDS are not synonymous terms but, rather, refer to the natural history or progression of the infection, ranging from asymptomatic infection to life-threatening illness characterized by opportunistic infections and cancers. This continuum of illness is associated with a decrease in CD4 cell count and a rise in HIV-RNA VL.11 However, in monitoring disease progression, it should be noted that although low CD4 cell counts are generally correlated with high VLs, some patients with low CD4 counts have low VLs and vice versa. Therefore, the most reliable current measurement of HIV activity is the VL, and the more consistent surrogate marker is the percentage of lymphocytes that are CD4 cells, rather than the absolute CD4 cell count.12 The natural history of HIV infection begins with primary or acute infection. This occurs when the virus enters the body and replicates in large numbers in the blood. This leads to an initial decrease in the number of T cells. Viral load climbs during the first 2 weeks of the infection. Within 5 to 30 days of infection, the individual experiences flu-like symptoms characteristic of a viremia such as fever, sore throat, skin rash, lymphadenopathy, and myalgia. Other manifestations of primary HIV infection include fatigue, splenomegaly, anorexia, nausea and vomiting, meningitis, retro-orbital pain, neuropathy, and mucocutaneous ulceration.13 The production of HIV antibodies results in seroconversion, which generally occurs within 6 to 12 weeks of the initial infection. The amount of virus present after the initial viremia and the immune response is called the viral set-point. Clinical latency refers to the chronic, clinically asymptomatic state in which there is a decreased VL and resolution of symptoms of the primary infection. It was previously believed that in this period, the virus lay dormant in the host cells. However, recent advances in the understanding of pathogenesis of the virus have revealed that there is continuous viral replication in the lymph nodes. Because more than 10 billion copies of the virus can be made every day during this period, early medical intervention with combination antiretroviral therapy is recommended. Al-Harthi et al. (2000) demonstrated that when antiretroviral therapy is used as an early intervention in non-acute HIV infection, it potentially reverses immune-mediated damage .14 Early symptomatic stage occurs after years of infection and is apparent by conditions indicative primarily of defects in cell-mediated immunity. Early symptomatic infection generally occurs when CD4 counts fall below 500 cells/mm3 and the HIV VL copy count increases above 10,000/mL up to 100,000/mL, which indicates a moderate risk of HIV progression and a median time to death of 6.8 years. There are frequently mucosal clues, ranging from oral candidiasis and hairy leukoplakia to ulcerative lesions. Gynecological infections are the most common reasons women have a medical examination. There are also dermatological manifestations, which include bacterial, fungal, viral, neoplastic, and other conditions such exacerbation of psoriasis, severe pruritus, or the development of recurrent pruritic papules.13

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Late symptomatic stage begins when the CD4 count drops below 200 cells/mm3 and the VL generally increases above 100,000/mL. This CD4 level is recognized by the CDC as the case definition for AIDS. Opportunistic infections or cancers characterize this stage and result in multiple symptoms. In addition to such illnesses as KS, Pneumocystis jiroveci pneumonia, HIV encephalopathy, and HIV wasting, diseases such as pulmonary tuberculosis, recurrent bacterial infections, and invasive cervical cancer are sometimes seen.6 Advanced HIV disease stage occurs when the CD4 cell count drops below 50 cells/mm3 and the immune system is so impaired that death is likely within 1 year. Common conditions are central nervous system (CNS) non-Hodgkin’s lymphoma, KS, cytomegalovirus (CMV) retinitis, or Mycobacterium avium complex (MAC).13 In the late stages of the disease, most individuals have health problems such as pneumonia, oral candidiasis, depression, dementia, skin problems, anxiety, incontinence, fatigue, isolation, bed dependency, wasting syndrome, and significant pain.14 Research regarding AIDS patients experiencing advanced disease confirms the multitude of patient symptoms and factors that contribute to mortality. In a study of 83 hospitalized patients with AIDS, factors contributing to higher mortality included the type of opportunistic infections, serum albumin level, total lymphocyte count, weight, CD4 count, and neurological manifestations.15 Of 363 patients with AIDS who were referred to community palliative care services, the most severe problems throughout care were patient and family anxiety and symptom control.16 In the last month of life, a retrospective study of 50 men who died from AIDS indicated that the most distressing symptoms included pain, dyspnea, diarrhea, confusion, dementia, difficulty swallowing and eating, and loss of vision. Dehydration, malnutrition, and peripheral neuropathy were also important problems.17

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Palliative Care as a Natural Evolution in HIV/AIDS Care From the earliest stages of HIV disease, symptom control becomes an important goal of medical and nursing care to maintain the patient’s quality of life. Therefore, palliative care for patients with HIV/AIDS should be viewed not as an approach to care only in the advanced stage of the illness but as an aspect of care that begins in the early stage of illness and continues as the disease progresses.18 With the occurrence of opportunistic infections, specific cancers, and neurological manifestations, AIDS involves multiple symptoms not only from the disease processes but also from the side effects of medications and other therapies. Patients with AIDS present with complex care issues because they experience bouts of severe illness and debilitation alternating with periods of symptom stabilization.19 In one model of care, AIDS palliation begins when active treatment ends. Although this model limits service overlap and is economical, it creates not only the ethical issue of

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when to shift from a curative to a palliative focus but also promotes discontinuity of care and possible discrimination. Conversely, a second model of AIDS care recognizes that AIDS treatment is primarily palliative, directed toward minimizing symptoms and maximizing the quality of life, and necessitates the use of antiretroviral drugs, treatment of infections and neoplasms, and provision of high levels of support to promote the patient’s quality of life over many years of the illness.20 Selwyn and Rivard21 emphasize that although AIDS is no longer a uniformly fatal disease, it is an important cause of mortality, particularly for ethnically diverse populations with comorbidities such as hepatitis B and C, end-organ failure, and various malignancies. Further, Shen, Blank, and Selwyn (2005) conducted a study based on patients (n = 230) in a large urban New York Medical Center who had been referred to the HIV palliative care team. They reported that close to half of all deaths for these patients were attributable to non-AIDS-specific causes, including cancer and end-organ failure. Further, age and markers of functional status were more predictive of mortality than traditional HIV prognostic variables, suggesting the need to reconsider the current value of prior prognostic variables.22 Although thousands of individuals continue to suffer and die from AIDS, the division between curative-aggressive care and supportive-palliative care is less well-defined and more variable than in other life-threatening illnesses such as cancer. With HIV/AIDS, the severity, complexity, and unpredictability of the illness trajectory have blurred the distinction between curative and palliative care. Other continuining challenges associated with HIV/AIDS are the societal stigmatization of the disease and, therefore, the greater emotional, social, and spiritual needs of those experiencing the illness, as well as their family and professional caregivers who experience their own grief and bereavement processes. Resources aimed at prevention, health promotion and maintenance, and end-of-life care must be available through health-care policies and legislation.23 Not only the treatment of chronic debilitating conditions but also the treatment of superimposed acute opportunistic infections and related symptoms is necessary to maintain quality of life. For example, IV therapy and blood transfusions, as well as health prevention measures such as ongoing IV therapies to prevent blindness from CMV retinitis, must be available to patients with AIDS to maintain their quality of life. Palliative care is therefore a natural evolution in AIDS care. Core issues of comfort and function, which are fundamental to palliative care, must be addressed throughout the course of the illness and may be concurrent with restorative or curative therapies for persons with AIDS.23 The management decisions for patients with advanced AIDS revolve around the ratio between benefits and burdens of the various diagnostic and treatment modalities and the patient’s expectations and goals, as well as anticipated problems.24 In the face of advanced HIV disease, health-care providers and patients must determine the balance between aggressive and supportive efforts, particularly when increasing debility,

wasting, and deteriorating cognitive function are evident. At this point, the complex needs of patients with HIV/AIDS and the needs of their families require the coordinated care of an interdisciplinary palliative care team, involving physicians, advanced practice nurses, staff nurses, social workers, dietitians, physiotherapists, and clergy.25 Because in palliative care the unit of care is the patient and family, the palliative care team offers support not only for patients to live as fully as possible until death but also for the family to cope during the patient’s illness and in their own bereavement.26 Palliative care core precepts of respect for patient goals, preferences, and choices; comprehensive caring; and acknowledgment of caregivers’ concerns support the holistic and comprehensive approach to care needed by individuals and families with HIV/AIDS. The components of high-quality HIV/AIDS palliative care, as identified by health-care providers, include competent, skilled practitioners; confidential, nondiscriminatory, culturally sensitive care; flexible and responsive care; collaborative and coordinated care; and fair access to care.26 Although the hospice and palliative care movement developed as a community response to those who were dying primarily of cancer, the advent of the AIDS epidemic made it necessary for hospices to begin admitting patients with AIDS. This meant applying the old model of cancer care to patients with a new infectious, progressive, and terminal disease.27 Unlike the course of cancer, which is relatively predictable once the disease progresses beyond cure, AIDS patients experience a series of life-threatening opportunistic infections. It is not until wasting becomes apparent that the course of AIDS achieves the predictability of cancer.28 Furthermore, although the underlying goal of AIDS care remains one of palliation, short-term aggressive therapies are still needed to treat opportunistic infections.29 Additionally, unlike cancer palliation, AIDS palliation deals with a fatal infectious disease of primarily younger people, which requires ongoing infection control and the management of symptoms.30

Barriers to Palliative Care The neglect of the palliative care needs of patients with HIV also relates to certain barriers to care, such as reimbursement issues. Specifically, public and private third-party payers have reimbursed end-of-life care only when physicians have verified a life expectancy of less than 6 months to live.30 Given the unpredictability of the illness trajectory, many patients with AIDS have been denied access to hospice care. Currently, these policies are under review, and the 6-month limitation is being extended so that patients with AIDS will be eligible for comprehensive care, with control of pain and other symptoms along with psychological and spiritual support offered by hospice/palliative care. Until recently, a second barrier to access to hospice/ palliative care for patients with AIDS has been the cost of continuing the administration of antiretroviral therapies and other medications to prevent opportunistic infections. The estimated cost of treatment for AIDS patients in

Patients with Acquired Immunodeficiency Syndrome hospices could amount to twice the cost of treating patients with cancer—particularly when the costs of medications are included—and cost remains an important issue for hospices. Financing of such therapies for patients with AIDS is now being addressed by hospice/palliative care organizations. The third barrier to palliative care is the patients themselves, many of whom are young, clinging to the hope of a cure for AIDS, and unwilling to accept hospice care. However, the current emphasis on beginning palliative care at the time of diagnosis of a life-threatening illness may shift the perception of palliative care as only end-of-life care and help promote palliative care as an aggressive approach to care throughout the course of the illness to ensure their quality of life. Indeed, media and Internet coverage of government and private initiatives to improve the care of the seriously and terminally ill in the United States is informing patients, families, and nurses of the philosophy and precepts of palliative care, the availability of palliative care for life-defining illnesses, and the rights of patients to receive excellent end-of-life care, as well as the obligations of health professionals to provide such care across health-care settings. A review of the evidence of barriers and inequality in HIV care by Harding et al. (2005) found that there is increased complexity in the balance of providing concurrent curative and palliative therapies given the prolongation of lifespan as a result of HAART therapy. Harding and colleagues believe that palliative care should not solely be associated with terminal care and propose four recommendations: 1. the need for multidimensional palliative care assessment for differing populations; 2. basic palliative care skills training for all clinical staff in standard assessments; 3. development of referral criteria and systems for patients with complex palliative care needs; 4. the availability of specialist consultation across all settings.31 Finally, Harding, Karus, and Easterbrook (2005) systematically reviewed the effects of models of palliative care on patient outcomes. Although they found that there is a lack of experimental and standardized methods, with most studies being descriptive, correlational studies, their review of the literature supports improvement in palliative care outcomes in home palliative and inpatient hospice care in measures of pain, symptom control, anxiety, insight, and spiritual well-being.32

Criteria for Palliative Care Grothe and Brody27 suggest that four criteria be considered regarding the admission of AIDS patients to hospice: functional ability, statistical prognosis, CD4 count and VL, and history of opportunistic infections. These criteria give a better understanding of the patient’s prognosis and needs. The complex needs of patients with advanced AIDS also indicate the need for an interdisciplinary approach to care offered by

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hospice/palliative care. The continual review of hospice policies in accordance with the changes in the disease is encouraged. Indeed, developing different models of care, such as enhanced home care, hospice care, day care, or partnerships with community hospitals or agencies, and conducting cost– benefit analysis will be important in meeting the healthcare needs of patients with AIDS and their families in the future.14 Important advances are currently being made in the field of palliative medicine and nursing, involving an active set of behaviors that continue throughout the caregiving process to manage the pain and suffering of individuals with HIV/AIDS. Health professionals have the responsibility to be knowledgable about the various treatment options and resources available for pain and symptom management. They must know about pharmacological agents’ actions, side effects, and interactions, as well as alternative routes of medication administration. And they must be able to inform patients of their options for care—documenting their preferences, wishes, and choices; performing a complete history and physical assessment; and collaborating with other members of the interdisciplinary team to develop and implement a comprehensive plan of care.26

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Health Promotion and Maintenance in Promoting the Quality of Life of Persons with HIV/AIDS As palliative care becomes an increasingly important component of AIDS care from diagnosis to death,23 and given the defi nition of palliative care as the comprehensive management of the physical, psychological, social, spiritual, and existential needs of patients with incurable progressive illness,26 palliative care must involve ongoing prevention, health promotion, and health maintenance to promote the patient’s quality of life throughout the illness trajectory. With HIV/AIDS, health promotion and maintenance involves promoting behaviors that will prevent or decrease the occurrence of opportunistic infections and AIDSindicator diseases, promoting prophylactic and therapeutic treatment of AIDS-indicator conditions and preventing behaviors that promote disease expression.4 With no current cure, the health management of patients with HIV/AIDS is directed toward controlling HIV disease and prolonging survival while maintaining quality of life.33 Quality of life may be defined as the impact of sickness and healthcare on an ill person’s daily activities and sense of well-being.34,35 Furthermore, quality of life varies with disease progression from HIV to AIDS. To understand quality of life means to understand the patient’s perceptions of his/ her ability to control the physical, emotional, social, cognitive, and spiritual aspects of the illness.45 Quality of life is therefore associated with health maintenance for individuals with HIV/AIDS, particularly as it relates to functioning in activities of daily living, social functioning, and physical and

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emotional symptoms.36 In a study regarding the functional quality of life of 142 men and women with AIDS, Vosvick and colleagues37 concluded that maladaptive coping strategies were associated with lower levels of energy and social functioning and that severe pain interfered with daily living tasks and was associated with lower levels of functional quality of life (physical functioning, energy/fatigue, social functioning, and role functioning). Therefore, health promotion interventions should be aimed at developing adaptive coping strategies and improving pain management. Health promotion and maintenance for patients with HIV/AIDS must acknowledge patients’ perceived healthcare needs. Based on a study of 386 HIV-infected persons, it was determined that the health-care challenges perceived by patients with HIV/AIDS across hospital, outpatient, home, and long-term care settings included decreased endurance, physical mobility, and changes in sensory perception, as well as financial issues—specifically lack of income and resources to cover living and health-care expenses.38 Furthermore, based on a sample of 162 hospitalized men and women with AIDS, Kemppainen reported that the strongest predictor of decreased quality of life was depression, which accounted for 23 of the variance, with other symptoms accounting for 9.75 and female gender accounting for an additional 8.39 Additionally, active involvement in the process of nursing care contributed 13.4 to the variance in quality of life. These results indicate the health-care challenges and physical, emotional, and interactional needs of patients with AIDS. In addition to managing pain and other symptoms, a comprehensive and compassionate approach to care is necessary as the illness progresses. Furthermore, enhancing immunocompetence is critical at all stages of illness, as is treating the symptoms brought on by the disease or related to prophylactic or treatment therapies. Palliation of physical, emotional, and spiritual symptoms—particularly as experienced in the late symptomatic and advanced stages of HIV disease—is considered the final stage of a health-and-disease-prevention approach and will be discussed later in this chapter.9 Through all stages of HIV, health can be promoted and maintained through diet, micronutrients, exercise, reduction of stress and negative emotions, symptom surveillance, and the use of prophylactic therapies to prevent opportunistic infections or AIDS-related complications.

Diet A health-promoting diet is essential for optimal function of the immune system. Deficiencies in calorie and protein intake impair cell-mediated immunity, phagocytic function, and antibody response. Therefore, an alteration in nutrition is associated with impaired immune system function, secondary infections, disease progression, psychological distress, and fatigue. In patients with AIDS, common nutritional problems are weight loss, vitamin and mineral deficiencies, loss of muscle mass, and loss or redistribution of fat mass. The redistribution of fat is characterized by increased abdominal girth,

loss of fat from the face, and a “buffalo hump” on the back of the neck, which may result from the administration of antiretroviral therapy.40 Patients with HIV/AIDS often have reduced food or caloric intake, malabsorption, and altered metabolism. Reduced food or caloric intake frequently results from diseases of the mouth and oropharynx, such as oral candidiasis, anular cheilitis, gingivitis, herpes simplex, and hairy leukoplakia. Incidence of diseases of the gastrointestinal (GI) tract that can cause malabsorption (such as CMV, MAC, cryptosporidiosis, and KS) increases for individuals with CD4 counts of 50 or less and may adversely affect their nutritional status.41 Metabolic alterations may result from HIV infection or secondary infections, as well as abnormalities in carbohydrate, fat, and protein metabolism.37 Hussein42 believes that a good diet is one of the simplest ways to delay HIV progression and will bolster immune system function and energy levels and help patients live longer and more productive lives. A diet with a variety of foods from the five basic food groups—including 55 of calories from carbohydrates, 15 to 20 of calories from proteins, and 30 of calories from fats—is important in supporting immune function.43 It is recommended to have two or three servings daily from the protein and dairy groups, seven to 12 servings from the starch and grain group, two servings of fruits and vegetables rich in vitamin C, as well as three servings of other fruits and vegetables.43

Micronutrients Research has indicated that HIV-infected individuals have lower levels of magnesium, total carotenes, total choline, and vitamins A and B6, yet higher levels of niacin than noninfected individuals.44 A linkage has been reported between vitamin A (β-carotene) deficiency and elevated disease progression and mortality.45 Correcting both vitamin A and B6 deficiencies has been hypothesized to restore cell-mediated immunity, and vitamin-supplement trials are underway. Current research supports the increase in dietary intake of n-3 polyunsaturated fatty acids, arginine, and RNA to increase body weight and stave off wasting caused by malabsorption. Increase in concentrations of amino acids such as arginine has also been found to preserve lean muscle mass.44

Exercise A consistent outcome of the effects of exercise on immune function is the increase in natural killer-cell activity, although variable results have been reported on the effects of exercise on neutrophil, macrophage, and T- and B-cell function and proliferation.46 In a review of exercise studies, LaPerriere and colleagues47 reported a trend in CD4 cell count elevation in all but one study, with the greatest effect from aerobic exercise and weight training. The CDC48 recommends a physical exercise program of 30 to 45 minutes four or more times a week as a health-promoting activity to increase lung capacity, endurance, energy, and flexibility and to improve circulation.

Patients with Acquired Immunodeficiency Syndrome Massage has also been linked to natural killer-cell activity and overall immune regulation, as reported in a research study of 29 HIV-infected men who received daily massages for 1 month.49 Patient reports of less anxiety and greater relaxation related to exercise and massage are regarded by both patients and practitioners as important laboratory markers.44

Stress and Emotions Stress and negative emotions have also been associated with immunosuppression and vulnerability to disease. In a study of 96 HIV-infected homosexual men without symptoms or antiretroviral medication use, Leserman and colleagues50 reported that higher cumulative average stressful life events, higher anger scores, lower cumulative average social support, and depressive symptoms were all predictive of a faster progression to both the CDC AIDS classification and a clinical AIDS condition. Stress of living with HIV/AIDS is related to the uncertainty regarding illness progression and prognosis, stigmatization and discrimination, and financial concerns as disabilities increase with advancing disease. Persons with AIDS frequently cite the avoidance of stress as a way of maintaining a sense of well-being.51 The use of exercise and massage and other relaxation techniques, such as imagery, meditation, and yoga, have been reported as valuable stress-management techniques.52 Cognitive–behavioral interventions have also been shown to improve certain aspects of quality of life of women with AIDS (n = 330), specifically in terms of cognitive functioning, health distress, and overall health perceptions. However, no changes were observed in energy/fatigue, pain, or role or social functioning.53 Health promotion also involves health beliefs and coping strategies that support well-being despite protracted illness. A study of 53 patients diagnosed with AIDS demonstrated that long-term survivors used numerous strategies to support their health, such as having the will to live and positive attitudes, feeling in charge, maintaining a strong sense of self and a sense of humor, and expressing their needs. Other health-promotion strategies frequently used by these patients included remaining active, seeking medical information, talking to others, socializing and pursuing pleasurable activities, finding good medical care, and seeking counseling.54 Cohen examined the relationship between the use of humor to cope with stress (coping humor) and perceived social support, depression, anxiety, self-esteem, and stress, based on a sample of 103 patients with HIV/AIDS.55 The results indicated that patients who used more coping humor were less depressed, expressed higher self-esteem, and perceived greater support from friends. However, the use of coping humor did not buffer stress, anxiety, or immune-system functioning. Stress can also be associated with the financial issues experienced by patients with HIV/AIDS. Therefore, health promotion may involve financial planning, identification of financial resources available through the community, and public assistance offered through Medicaid.

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It must also be recognized that additional physical and emotional stress is associated with the use of recreational drugs such as alcohol, chemical stimulants, tobacco, and marijuana because these agents have an immunosuppressant effect and may interfere with health-promoting behaviors.56 The use of such substances may have a negative effect on interpersonal relationships and is associated with a relapse to unsafe sexual practices.57 Interventions for health promotion include encouraging patients to participate in self-health groups and harm-reduction programs to deal with substanceabuse problems.

Symptom Surveillance Throughout the course of their illness, individuals with HIV require primary care services to identify early signs of opportunistic infections and to minimize related symptoms and complications. This includes a complete health history, physical examination, and laboratory data, including determination of immunological and viral status. Health History In the care of patients with HIV/AIDS, the health history should include the following12: • History of present illness, including a review of those factors that led to HIV testing • Medical history, particularly those conditions that may be exacerbated by HIV or its treatments, such as diabetes mellitus, hypertriglyceridemia, or chronic or active Hepatitis B infection • Childhood illnesses and vaccinations for preventing common infections such as polio, DPT, or measles • Medication history, including the patient’s knowledge of the types of medications, side effects, adverse reactions, drug interactions, and administration recommendations • Sexual history, regarding sexual behaviors and preferences and history of sexually transmitted diseases, which can exacerbate HIV progression • Lifestyle habits, such as the past and present use of recreational drugs, including alcohol, which may accelerate progression of disease, or cigarette smoking, which may suppress appetite or be associated with opportunistic infections such as oral candidiasis, hairy leukoplakia, and bacterial pneumonia • Dietary habits, including risks related to food-borne illnesses such as Hepatitis A • Travel history to countries in Asia, Africa, and South America, where the risk of opportunistic infections increase • Complete systems review to provide indications of clinical manifestations of new opportunistic infections or cancers, as well as AIDS-related complications both from the disease and its treatments

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Physical Examination A physical exam should begin with a general assessment of vital signs and height and weight, as well as overall appearance and mood. A complete head-to-toe assessment is important and may reveal various findings common to individuals with HIV/AIDS, including those mentioned below.12 • Oral cavity assessment may indicate candida, oral hairy leukoplakia, or KS. • Funduscopic assessment may reveal visual changes associated with CMV retinitis; glaucoma screening annually is also recommended. • Lymph node assessment may reveal adenopathy detected at any stage of disease. • Dermatological assessment may indicate various cutaneous manifestations that occur throughout the course of the illness such as HIV exanthema, KS, or infectious complications such as dermatomycosis. • Neuromuscular assessment may indicate various central, peripheral, or autonomic nervous systems disorders and signs and symptoms of conditions such as meningitis, encephalitis, dementia, or peripheral neuropathies. • Cardiovascular assessment may reveal cardiomyopathy. • GI assessment may indicate organomegaly— specifically splenomegaly or hepatomegaly— particularly in patients with a history of substance abuse, as well as signs related to parasitic intestinal infections; annual stool of guaiac and rectal examination, as well as sigmoidoscopy every 5 years, are also parts of health maintenance. • Reproductive system assessment may reveal occult sexually transmitted diseases or malignancies as well vaginal candidiasis, cervical dysplasia, pelvic inflammatory disease, or rectal lesions in women with HIV/AIDS. They may also reveal urethral discharge and rectal lesions or malignancies in HIV-infected men. Health maintenance in individuals with HIV/ AIDS also includes annual mammograms in women, as well as testicular exams in men and prostatespecific antigen annually. Laboratory Data CD4 counts—both the absolute numbers and the CD4 percentages—should be evaluated to assist the health practitioner in therapeutic decision-making about treatments of opportunistic infections and antiretroviral therapy. It is the strongest predictor of disease progression and patient survival.58 The quantitative RNA level or VL can be useful as a marker of disease progression but is primarily used as a measure of the effectiveness of antiretroviral therapy. The DHHS Panel on Clinical Practices for the Treatment of HIV recommends that the CD4 count and the VL be measured

upon entry into care and every 3 to 6 months thereafter.58 The patient’s HIV-RNA (VL) should be measured immediately before a patient is started on HAART and again 2 to 8 weeks after treatment is initiated to determine the effectiveness of the therapy. With adherence to the medication schedule, it is expected that the HIV-RNA will decrease to undetectable levels (

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