THE ENCYCLOPEDIA OF
DEATH AND DYING
THE ENCYCLOPEDIA OF
DEATH AND DYING Dana K. Cassell Robert C. Salinas, M.D., CAQ(G) Peter A. S. Winn, M.D., CMD, CAQ(G)
The Encyclopedia of Death and Dying Copyright © 2005 by Dana K. Cassell All rights reserved. No part of this book may be reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage or retrieval systems, without permission in writing from the publisher. For information contact: Facts On File, Inc. 132 West 31st Street New York NY 10001 Library of Congress Cataloging-in-Publication Data Salinas, Robert C. The encyclopedia of death and dying / Robert C. Salinas and Peter A. S. Winn. p. ; cm. Includes bibliographical references. ISBN 0-8160-5376-6 (hc : alk. paper) 1. Death—Encyclopedias. 2. Thanatology—Encyclopedias. [DNLM: 1. Death—Encyclopedias—English. 2. Thanatology—Encyclopedias—English.] I. Winn, Peter A. S. II. Title. HQ1073.S25 2005 306.9’03—dc22 2003027478
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CONTENTS Foreword
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Preface
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Acknowledgments
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Introduction
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Entries A–Z
1
Appendixes
279
Bibliography
335
Index
345
FOREWORD often term “comfort care” and/or “palliative care.” However “comfort care” does not necessarily mean “no care.” It can entail aggressive care that addresses and treats pain and a myriad of other non-pain and distressful symptoms that can lead to overwhelming suffering and discomfort. Only when we alleviate the dying person’s physical, emotional, social, spiritual, and existential suffering can a peaceful death truly occur, one that suffuses contentment and a readiness to finally let go of life’s last threads. The seminal works and writings of several pioneers in end-of-life care have profoundly influenced many of us who have cared for the dying. These include Elisabeth Kübler-Ross (On Death and Dying, 1969, and her many subsequent publications), Maggie Callanan and Patricia Kelley (Final Gifts, 1992), Sherwin Nuland (How We Die, 1993), Ira Byock (Dying Well, 1997), Daniel Tobin (Peaceful Dying, 1999), and Joanne Lynn and Joan Harrold (Handbook for Mortals, 1999). All these classic writings form a cornerstone to better understanding of death and dying. The Encyclopedia of Death and Dying is another seminal work that is both thoughtful and helps fulfill our yearning for knowledge on death and dying. Personally this text has encouraged me to return to the pioneers’ writings mentioned above, all in a search to better understand our culture of death and dying. All dying persons and their families must be assured access to a philosophy of care and treatment options that provide comfort, peaceful dying, and the dying person living each day to the fullest until
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ntertwined into the ABC’s of The Encyclopedia of Death and Dying are several challenges to us all. First is the challenge to better understand the experience of death and dying. This experience is a kaleidoscope of many factors—the dying person’s past life experiences; his or her legacy (or lack thereof) after death; the emotional, social, religious, spiritual, and family contexts of death and dying—all filtered through the dying person’s beliefs and cultural and ethnic diversity. Diverse communities, societies, and countries are challenged to grapple with the unique issues related to death and dying. From a health care perspective, we are challenged to better alleviate suffering and increase comfort as people travel through the last phase of their lives. We need to better understand the dying person’s fear of death and loss, his questions about dying, as well as her desires and unfulfilled needs. We also need to respect people’s individual rights to dignity, autonomy in making decisions, beneficence (doing good), non-maleficence (do no harm), confidentiality (right to privacy), and trust throughout the last months of their lives. This is a time to recognize and facilitate the dying person and his family’s need to reconcile past and present personal, spiritual, and moral relationships. In Final Gifts, Maggie Callanan and Patricia Kelley have challenged family and health care professionals to become more sensitive to the messages, teachings, and needs of the dying and the dying person’s personal experience so that peaceful dying can be achieved. To do so requires a philosophy of care we
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viii The Encyclopedia of Death and Dying he or she dies. It is my hope that this encyclopedia will help us all to better understand the care and end-of-life issues related to death and dying in the past and present, which in turn will enable us all to
better care for our loved ones in this and future decades. The Encyclopedia of Death and Dying should prove to be a useful resource to both families and health care professionals. —Peter Winn, M.D., CMD, Palliative Care Committee, University of Oklahoma Health Science Center Faculty, Department of Family and Preventive Medicine, Adjunct Faculty, D. W. Reynolds Department of Geriatrics, Diplomat of the American Board of Hospice and Palliative Medicine
PREFACE
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these deeply embedded experiences. They have taught me that despite the marvel of modern potions and technology used to control symptoms, treating the spirit is just as important and often central to good doctoring. For when medications could not bring optimal relief of suffering, my patients have found comfort in readings from the Holy Bible. (In addition to the medications and medical instruments that are found in my doctor’s bag, a copy of the Holy Bible remains a valuable necessity.) Death and dying have been succinctly depicted in literature, in art, and in song for hundreds of years. I am reminded of one particular story that has withstood the test of time. In the novella The Death of Ivan Ilyitch, written by Leo Tolstoy, the reader witnesses the personal struggles and ultimate convictions that Ivan Ilyitch must bare as he reaches the final moment of life. Many of the themes that Tolstoy wrote about more than a hundred years ago remain central to care of the dying patient today. This story reflects the humanism germane to the act of dying. As readers, we experience the emotional entanglements involving death that affect us all as humans. We hurt. We fear. We grieve. We care. And at times, we don’t understand until the end as we blindly seek spiritual salvation. We become introspective as we approach the abyss of death and an apparent dark and gloomy fate. These are all common characteristics of the human condition. What has changed over the past hundred years or so is the vernacular used to describe the pure essence of the life process called dying. Like Tolstoy, we have attempted to describe and add meaning to one of life’s most feared events. The meaning of death and dying is not distinct to one race or ethnic group but
uring the past year, I have been reviewing the contents of this unique book, The Encyclopedia of Death and Dying, and now as I am writing this preface, I would like to take this opportunity to reflect and share some thoughts on such an important matter. Let me begin by stating that I am not nor do I consider myself an expert in the field of end-of-life care or palliative and hospice medicine. Simply, I am an academic-based family physician whose practice involves providing medical care for those people who are dying. My responsibilities also include teaching medical learners about the potentials of doing great things for patients and their families during a very challenging period in their lives. In addition to my other academic duties, I write and share narratives about death and dying. Much of what I write is based on an exploration of current medical theory and well-done studies that are intertwined with my personal experiences in providing end-oflife care for patients. My patients and their families grant me a special privilege when I am asked to assist with end-of-life care. When I am called to the bedside of a dying patient, I am inspired by the emotional exchange that we share as we recollect and celebrate the patient’s personal meaning in life. These stories abound for there have been many instances when, late at night with medical bag in tow, these special moments of visiting the infirm have taught me about the virtues of living and dying. Huddling in the living room with family members to discuss the expected fate of their loved ones has also reminded me of my expanded participatory role as a healer during my patient’s last moments of life. It is a trusted role, and I have remained humbled and grounded by
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x The Encyclopedia of Death and Dying rather universal, with a multitude of individual characteristics that are expressed in various customs and beliefs. Cultural constructs regarding illness and death and dying are required to be accepted as part of any exchange between patient and provider. Sensitivity and understanding is paramount to good end-of-life care. For example, why is it that when a child of Hindu religion dies, it is important that the child be close to the ground? Included throughout this book are global perspectives that provide insights into various cultural traditions regarding death and dying. These traditions and ways of life will provide a platform for discussions among patients, family members, and their physicians. Much credit can be given to the people who choose to make end-of-life care a lifelong study. These are the people who collectively have made substantial contributions to the field of sociology, anthropology, medical ethics, hospice care, and palliative medicine. Their attempts to bring clarity to what seems to be an often nebulous and cumbersome ordeal, deserve continued support and recognition. Some of these professionals bare their own emotions through personal accounts of working with dying patients. These authors provide narrative tales from their patients’ files, and these narratives describe the unfortunate human tragedies that cut short a wonderful life and the suffering inflicted by this circumstance. Such stories remind us of the inevitable and of our own mortality. As humans, we feel sorrow, and as physicians, we struggle to acknowledge our limitations as defeat looms. At times, we hobble away a wounded healer; for what was to be is not. Other authors describe the perspective of the patient, who is often caught in the middle, often the victim of the ill-intended decisions of over-zealous doctors attempting to employ the wizardry of modern medicine and satisfy society’s norms. In Brian Clark’s short play, Who’s Life Is It Anyway?, we are tragically reminded that patients ultimately will decide if they wish to live or to die. Physicians and health professionals are delegated to being cast members and are seen as clerks who provide the means for the sustenance of life. Patient autonomy and freedom of choice is pitted against our moral values as a society and obligation to stand firm and defend our oath. This short masterpiece reminds us of the duality and
potentially harming effects that good intentions may bring. It remains inherent upon us as physicians to continue to communicate with our patients and establish a platform for discourse on end-of-life care. The communication of death and dying has evolved through a multitude of delivery conduits with the purpose of reaching people through various means. The media has certainly played an important role and is also partially responsible for bringing endof-life care to centerstage. Big screen movies and prime-time television programs have successfully communicated topics of end-of-life care through film. One can also acknowledge the growth and development of our culture as motion pictures and television have captured snapshots of our society. Productions from Hollywood archive our post-modern society’s interpretation of dealing with the final acts of death and dying. Such productions that come to mind include the award-winning movies Terms of Endearment and Philadelphia, and the television program ER. Each media source from a particular decade relates a different perspective of end-of-life care. The information gathered from the SUPPORT studies are landmark educational platforms that will serve to guide us, as we look for ways in which to improve care for the dying. These studies remain our beacon of light and as a society, it is incumbent upon us to understand the significance of what these SUPPORT authors assert. The tasks are multitude but yet achievable. For example, caring for people who are dying should be a standard part of any health professional school’s curriculum. However, information on end-of-life care is often not found in the textbooks that these students read. Major medical textbooks often devote little space to this subject, and didactics are often restricted to only primary care specialties. However, because of the unremitting efforts of the authors involved with the SUPPORT studies, academic medical education has initiated an infusion of more didactic training and patient care experience. As we constantly balance the use of technological medical breakthroughs for keeping people and patient autonomy, new discussions emerge. The curative model engages the caring model and we must learn to understand our own views and opinions as we listen intently to the needs of our patients. Our ability to endure these realities must include an approach that is centered on patient and family. The
Preface xi goals of good end-of-life care should be focused on relieving pain and suffering. I am poignantly reminded of an elderly couple that jumped to their death from atop a high-rise apartment building because the husband was tired of living with ill-fated lungs that prevented him from breathing well. Was his end-of-life care good, I wonder? The balance of longevity and a life well spent will certainly provide a discourse for anyone as we move from a curing mode of treatment to a caring mode of treatment. Tensions that exist may be eased and a patient’s final wishes may be honored when a cure is futile. We know that despite the majority of people wanting to die at home, most actually die in a place other than home, such as a nursing home or hospital. I am too often reminded of stories where I am told “Dad didn’t want to be resuscitated and be put on a ventilator but the hospital was not aware of this so he died in the Intensive Care Unit (ICU) a week later.” Thus, we must continue to explore and implement strategies that will allow patient and physician to share communication on end-of-life care. A compassionate and caring approach to the patient has been central to the idea of palliative and hospice care. With a highly diverse society, an understanding of cultural perspectives and values also becomes imperative in the commitment to patient care. Cultural norms on end-of-life care that are described in this book are of value to any physician in neutralizing ethnocentricity and ignorance. Let’s face it: America has a population that continues to demonstrate wide cultural diversity. Along with this are the cultural norms that may defy one’s own perspective on end-of-life care. Certainly some of the goals that we hope to attain in end-of-life care traverse the kaleidoscope of America. Understanding the special needs of a diverse population will help prevent a widening of the gap in end-of-life care services. The ability to render effective medical services to people from diverse cultural backgrounds remains a priority for our health care system. Research continues to demonstrate that ethnic minorities often experience barriers when accessing hospice and endof-life care services when compared to Caucasians. Characteristics attributable to existing barriers often include economic status, language acquisition, edu-
cation attainment, and cultural beliefs. These barriers can inadvertently promote a profound assumption of singularity in regards to the delivery of medical services to an individual, irrespective of ethnic or cultural backgrounds. Understanding the special needs of a diverse population will help prevent a widening of the gap in end-of-life care services. Despite the tremendous progress with technological breakthroughs, people continue to experience the illness and disease that call for a suspension of life. Throughout the world, thousands die daily because of modern medicine’s inability to control disease progression. Illnesses such as cancer and heart disease continue to be the leading causes of death in the world. Each day people must deal with the realities of life; we are born and we die. This encyclopedia is rich in information about everyone’s final act and the way society interprets this as a means of understanding death and dying. It is reflective of the close relationship among medicine, religion, and social norms that is woven into the fabric of our society. It provides clarity and understanding with the hope of illuminating world concepts and ideas that may reduce a centricity that all too often comes to affect us. Thus this encyclopedia will serve not only the public but also those health care professionals who seek to improve their knowledge base to provide better end-of-life care. Without doubt, the contents of this book will help fortify and expand the reader’s fund of knowledge. If these are the goals, then I suspect that this book will be of value and serve to enrich the lives of the people that we serve. It should be considered a primer for any discourse on end-of-life care and I hope that this foreword sets the tone for a meaningful and valued experience for the reader. I am grateful to all my colleagues who steadfastly continue to make contributions to this field. And to my patients and their families, I am indebted for the special relationship that we have forged during life’s final steps. —Robert C. Salinas, M.D., Assistant Professor, Department of Family and Preventive Medicine, College of Medicine, University of Oklahoma Health Sciences Center Medical Director, Gentiva Health Services
ACKNOWLEDGMENTS
S
Harwell Sayler, author of Poetry Writing One-on-One (Ocean Publishing, 2004), contributed the entry on “poetry on death and dying” and also suggested many of the topic listings used in this book. Another contributor of suggested topics was Vicki DeLalla. We would also like to express appreciation to the staffs of several organizations, who were especially generous in allowing the use of their material and information—Project Grace in Clearwater, Florida; the National Safety Council in Itasca, Illinois; and Jenkins Funeral Home in Colebrook, New Hampshire.
ubjects like death and dying, which touch everyone’s life, encourage input from so many that it would be impossible to thank everyone who has contributed to the value of this encyclopedia, either directly or indirectly through their own life experiences. But several people have been especially helpful. Christine Adamec, herself author of several encyclopedias in the Facts On File Library of Health and Living series, has also written on end-of-life issues and was kind enough to send along a large box of resource material that was very helpful. Mary
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INTRODUCTION “Many people use the words frightening, painful, or horrible when they think of death. But at the same time others find peace, release and triumph more appropriate.” From its contradictions to its rich cultural and social history, all aspects of death have been studied by anthropologists, sociologists, philosophers, psychologists, and biologists in an attempt to better understand its meanings.
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eath has been an absolute since the beginning of life; but rather than such familiarity yielding definitive answers to questions about death’s meaning and handling, death’s constant presence has instead intrigued and frightened man throughout history. Every culture, every religion has endeavored to explain its meaning. Although biological death is universal, the attitude toward death and the beliefs connected with death have changed over time. Rituals to ease the transition of a death for both the departed and the survivors have spanned the ages, constantly evolving, but with some customs periodically reappearing. As we follow the ages and histories of man, it is remarkable how recognizable earlier customs are in today’s traditions, practices, and beliefs. Death has also had its share of paradoxes. In The Courage to Laugh: Humor, Hope, and Healing in the Face of Death and Dying, Allen Klein notes that today’s American culture has chosen to emphasize the “loss” a death entails and the difference between life and death. “In ancient Eastern cultures, life and death are not classified as opposing forces but simply as aspects of existence.” Another paradox Klein mentions is the fact that we are both repelled and intrigued by death. “We ship our deceased off to a mortuary for rituals that once were performed at home, yet we are constantly bringing reminders of death into our house through grim media headlines and gruesome television shows.” Such fascination with death and the macabre has whetted our appetite for films about ending lives in violent ways at the same time that we express horror at genocide. But on a more personal level, there is also a paradox in people’s descriptions of death. Klein explains,
Prehistoric Death Practices Largely due to lack of a written language, little is known about prehistoric man’s attitudes about death, but early Stone Age (Lower Paleolithic period) scattered bone fragments have suggested to archaeologists that the dead were simply abandoned and left behind as groups continued on their migratory way, following the animals and seasons. It is not known precisely when the custom of burying the dead began, but the Neanderthals (Middle Paleolithic period), in contrast to these earlier hominids, apparently buried many of their dead. Also unknown is whether the earliest burials were intended to maintain communication (as in a cult of the dead) or to guard against the demonic power of unburied dead left free to wander. Several Neanderthal burial sites contain what appear to have been valuables or “grave goods,” indicating an ability to think about symbolism and perhaps even a belief in an afterlife. For example, Lewis Aiken writes in Dying, Death and Bereavement, “The grave of a Neanderthal man who lived about 70,000 years ago in what is now southwestern France also contained a leg of bison with the flesh still attached. The
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xvi The Encyclopedia of Death and Dying implication of this finding seems to be that the leg was buried to provide meat for the deceased in the next life.” The presence of pots in the earliest known graves also indicates that the bodily needs of the deceased were provided for. There seems to be general agreement that ritualized burial began with the Neanderthals. Other examples of this period, described by Constance Jones in R.I.P., include remains surrounded by the pollen of flowers—perhaps an attempt to “cure” death, or perhaps simply the earliest use of floral arrangements to decorate a grave. Neanderthal graves have also included weapons and flints and food—possibly as protection from predators or evil spirits, or perhaps as useful items for the next life. Discovery of Neanderthals buried along with systematic arrangement of cave bear bones in France and the Swiss Alps has suggested the possibility of their connecting death to hibernation—perhaps “an attempt to transfer the power and mystery of hibernation.” Jones also writes, “Some (Neanderthal) bodies are found facing east, as if they were positioned so that their spirits might awaken to some future dawn.” The painting of the dead prior to burial is a further indication that some kind of primitive religion may have been practiced. The Upper (or more recent) Paleolithic period included Cro-Magnon man, among other fully erect Homo sapiens, who were the first to hunt and fish in groups, as well as the first to have belief systems centering on magic and the supernatural—and, likely related, the first regular burial practices. Carl J. Warden (The Evolution of Human Behavior) writes, “The artist and magician of the times was doubtless also the priest and performed the ceremonial rites associated with the burial of the dead.” The practice of burying offerings with the dead, seen during the earlier period, continued and expanded during the Upper Paleolithic period. Warden explains, “Not only food for sustenance, but also richly carved weapons and implements of the chase for use in the happy hunting grounds were now placed with the dead. Pendants, strings of beads, necklaces, and the like are also commonly found with fossil remains of the period.” Although there is no way of knowing whether or not actual burial ceremonies took place, it is likely that certain rites were performed. The practices of painting the corpse and of burying paint
with it continued to be fairly prevalent. In some cases the arms were folded over the heart and the lower limbs flexed. “On the whole,” Warden says, “it appears that late Paleolithic man thought of life after death as a continuance of the present mode of existence. However, the votive offerings may have been intended for use merely during the journey to the land beyond.” Beginning around 10,000 B.C.E. in the Middle East, the Neolithic (New Stone Age) people were the forerunners of the Europeans of ancient history, bringing with them later to Europe the culture of a more settled, agrarian life and conquering the nomadic Cro-Magnon race. The highest architectural skill of Neolithic man was expressed in the building of various sorts of crude stone tombs, or dolmens, for family or community use, before the age of individual graves arrived. These tombs ranged from a simple room to those having several chambers and a passageway. These tombs were protected by a mound of stones and earth, known as a tumulus or barrow, which was sometimes surrounded by another row of stones. Because Neolithic man’s rudimentary artistry left few clues as to his social and religious life, archaeologists and anthropologists have had to rely on his burial customs for inferences of his beliefs. Warden explains, “Doubtless he laid away his dead with elaborate ritual in the dolmens which had been so laboriously constructed.” The group burial tombs were located close by, sometimes at the mouth of or within the cave where people lived. Superstition, even cults, are believed to have been the order of the day. As the Neolithic races gradually made their way across Europe to England, they became known as the “long barrow” people, because they built their burial chambers, or barrows, long, as differentiated from the round barrows of the later Bronze Age people, whose culture marked the dawn of ancient civilization. The numerous changes in burial practices during the Neolithic period in Britain (4000–2500 B.C.E.) has sparked debate among archaeologists and anthropologists for generations, as they have endeavored to interpret the meaning of these changes. One of the major changes during this period was a decline in the use of the communal tombs and the introduction toward the end of the period of a single-grave burial that included grave goods. Some
Introduction xvii authorities attribute the change to the arrival of a new group of people, the “Beaker folk,” so called because they included distinctive “waisted” pots (Beaker ware) in their burials. As roving warriors, communal burials had little appeal, with solitary graves more conducive to their vagabond lifestyle. So their dead were buried alone and in a crouching position, with their knees pulled up close to their chins. Others have suggested that the move to single graves came about as communities began banding together to form chiefdoms, resulting over time in a ranking of people as to importance and wealth, and the adoption of styles of burial that illustrated their individual prestige. Still others have argued that communal burials were intended as a means of pursuing ancestor worship—with the accessibility of the remains enabling them to be retrieved, handled, or displayed during the course of ancestral rites. Thus, they suggest, the move to single graves marked a change from ancestor worship to a “funeral,” with attention (and gifts) now given to those who survived—the first instance of “social death.” Noting that during this same time period, entrances to many of the stone chambers of western Britain began to be deliberately blocked with stone and earth, making the ancestral bones inaccessible, Julian Thomas suggests that the introduction of single-grave burial was more a societal change, with people wanting more of a separation between them and their dead. As personal identity began to emerge more through descent rather than from group affiliation, this realignment of personal identity “created an imperative to identify the dead as a point of origin from which the present descends. The dead had to cease to be part of the present, and had to be relocated both spatially and in the past, placing them in a different kind of relationship with the living.” Illustrative of the value and symbolism put on cattle during this Beaker period, a Beaker grave uncovered in central England included the remains of 185 skulls and a smaller number of jawbones, shoulder blades, and pelvic bones of cattle. Other parts of the skeletons and other species were conspicuously rare or absent. Sebastian Payne writes that there can be little doubt that such an assemblage is the result of some kind of ritual associated with the death of the man buried in the barrow.
Payne notes that in parts of Madagascar, elaborate funeral rites still take place involving large numbers of cattle. Much of the burial practice of Neolithic man continued into the Bronze Age in Britain and Europe, although new elements also made their appearance. The dolmen continued to be used for burial in certain communities, although burial in flat graves occurred in some places. Later on, incineration became usual, with the ashes being placed in a pottery urn and buried in a solitary grave along with grave goods that included pots, jewelry, and weapons. Limited evidence exists of body disposal and afterlife beliefs during the Iron Age because burial of the dead was not usual for most Iron Age communities in Britain or Ireland, according to historians, although burials become more usual from the 1st century B.C.E. onward. J. D. Hill, writing for the BBC, notes that in most areas Iron Age graves are either extremely rare or completely absent. It is only because of the religious beliefs and rituals of particular Iron Age groups—which caused some dead people to be buried in graves, and demanded that these dead should be clothed and furnished with other objects—that some rare Iron Age artifacts have survived at all. These few isolated burial sites have shown funerary styles such as cart burials, cist cemeteries (burial chamber made from stone or a hollowed tree), and warrior graves with remains of sword and shield. More recent excavation has shown frequent evidence of a complicated funeral ceremony based on seasonal rites and centered around a “mortuary house” in which the remains were placed. Throughout the Iron Age, it appears, a variety of strange burial rituals were carried out, attributed to widely changing religions and no one system of burial. As one person working a dig has said, “Some people were buried, some were cremated, others had their heads chopped off and put below their legs and I’ve even seen one body that was nailed to the ground.” According to Oxford Archaeology, the largest independent archaeological practice in England, chariot burials remain one of the rarest and most intriguing forms of burial rites known in Britain. Dating from roughly 500–100 B.C.E., they are thought to represent the final rites of elite individuals of the
xviii The Encyclopedia of Death and Dying middle Iron Age. Typically, archaeologists find a single burial placed in a large grave with a twowheeled vehicle. These vehicles are usually referred to as chariots, although what they were originally used for is still not certainly known. The burials are often accompanied by other high-status objects, including mirrors and swords. Chariot burials, especially intact examples in which the chariot is buried complete, are considered significant because they indicate some form of contact and exchange between the Continent and Britain during the middle Iron Age.
Death Practices in Early Civilizations During the early Bronze Age, certain parts of the world—in areas of the current Near East and Asia— were witness to the awakening of civilization, meaning urban life and literacy. Among the more well-known “cradles” of civilization were Mesopotamia, between the Tigris and the Euphrates rivers in present-day Iraq, the Indus River Valley in northwestern India and Pakistan, and ancient Egypt along the Nile River. Each of these civilizations developed the first cities and can lay claim to the first writing, which historians use as a marker between prehistory and the beginning of history. Such writings have been an aid to gaining knowledge about burial practices, but more importantly insight into attitudes about death. In Ancient Mesopotamia (Cambridge University Press, 1999) Susan Pollock notes that burial practices changed from the use of cemeteries and intramural interments in the fifth millennium, to the curious absence of burials for at least a thousand years during the fourth millennium, to renewed burial in the third, often accompanied by substantial quantities of grave goods that clearly single out individuals of status. Whether there actually were no burials for a millennium, or whether they simply have not yet been discovered has been debated among historians. Indeed, Jones writes, the Mesopotamians had a pessimistic view of death and treated it simply— “their architecturally unmemorable graves are covered over with earth, a sharp contrast with Egypt’s Pyramids.” In later eras in the region, burial in a
family vault under the dwelling house was common. Others have also described the Mesopotamian funeral service as simple, with elegists and other funerary personnel in attendance to conduct the laments seeking to give full expression to the grief of the bereaved and appease the spirit of the deceased. In excavations of the city-state of Ur, located in antiquity at the head of the Persian Gulf, of 660 graves dating to the Early Dynastic period (ca. 2600–2500 B.C.E.), the majority were simple ground burials in which a single body, wrapped in reed matting or placed in a coffin, rested at the bottom of a small rectangular pit. In these burials, the deceased was accompanied by a few personal possessions, such as jewelry or weapons, as well as vessels, presumably to hold food and drink. Sixteen burials, however, were distinguished from the others by their wealth. The inhabitants were also accompanied in their graves by a number of other individuals. Both the wealth and the “entourage” have led to assumptions that these interments contained the deceased kings and queens of Early Dynastic Ur. Authors have noted that in the royal tombs of ancient Mesopotamia the courtiers—guards, musicians, handmaidens, and grooms—died at their posts in the tomb, having taken a lethal drink of poison. As the last of the great civilizations of antiquity to be discovered, less is known about the Indus people and their attitudes about death; in fact, the largest known Indus culture site has yet to be excavated. Although there were Indus writings, developed independently of the Mesopotamian and Egyptian writings, these have yet to be deciphered, thus limiting current knowledge. Also, according to historians, the nature of the graves themselves has hindered knowledge. Dr. Gregory L. Possehl of the University of Pennsylvania, who has excavated Indus cities since the 1960s and written several books on the culture, has explained that the apparently simple Indus burial practices have deprived archaeologists of what is usually a most revealing lode of cultural information. Unlike the elites of Egypt and Mesopotamia, the Indus people sent their dead to the afterworld unaccompanied by jewels, furniture, and weapons. Previous excavations have indicated that some people were buried in wooden coffins with pottery vessels that may have been filled with food. But having found so few cemeteries,
Introduction xix archaeologists suspect that burial was not the rule; perhaps most bodies were cremated or thrown into rivers. It is interesting to note that where inhumation did occur, there was a common pattern of cemeteries outside the town. At one burial site, several pairs of skeletons were found together in the same graves, suggesting some form of suttee, a later Hindu custom in which the wife ended her life with the death of her husband. In addition to the royal Mesopotamians and possibly the Indus people taking live persons to the grave with them, Aiken notes that the Scythians, a nomadic people who lived in southern and eastern Europe from 600 B.C.E. to 100 C.E., killed wives and servants to accompany the deceased, a rite also practiced among the Vikings of northern Europe. The early Egyptians followed a similar practice, but paddle dolls later replaced people in Egyptian tombs. Paddle dolls, shaped from thin strips of board into small canoe paddles, were placed in the tombs to act as servants and companions of the deceased in the spirit world. Contrary to the Mesopotamian and Indus simplification of death, the ancient Egyptians are known for the dramatic in their preoccupation and near obsession with death and immortality. Preparations for death were made carefully and long in advance: tomb chapels and burial chambers were built, grave goods laid aside, and endowments set up to pay the mortuary priests who provided for the eternal well-being of the deceased’s spirit. Specific funeral customs varied over time and according to class and wealth. About 2700–2200 B.C.E., the first great pyramids in “Old Kingdom” Egypt were constructed as tombs. Considered to be the first people to believe that the soul is immortal, the Egyptians believed they would be resurrected after death to live forever, with death merely a transitional stage along the way to a better life in the next world. The Egyptian Book of the Dead (ca. 1600 B.C.E.) describes the travel of the soul into a next world without coming back to Earth. In order for the soul to function properly, the body must remain intact. When the body is in good condition after burying, the soul returns to it again. Because of the importance of keeping the body in good shape, along with the need to prepare for the ensuing journey, the Egyptians embalmed and mummified the dead, and pro-
vided ample provisions for the afterlife—jewels, household furnishings, and food. The intricate system of death care was carried out by an elaborate, extensive division of labor, with “undertakers” and embalming specialists caring for the dead and handling many of the funeral arrangements. The food placed in the tombs was presumably replenished periodically by attending priests, such services considered a continuation of the existence before death. The Book of the Dead preserved magic formulas to be used in approaching the underworld. No restrictions were placed on who could have a copy of the Book of the Dead to take along with them, but the cost prevented lower classes from buying it. Most of the owners belonged to the social strata of officials and qualified workmen of the royal tombs. The decorated stone coffins (called sarcophagi) and tombs of the Egyptians were also used by other ancient cultures, such as the early Greeks, who carved their tombs out of rock or buried them in the ground with carved headstones. Tombs of royalty or heroes were often quite impressive and artistic, with specialized artwork called sepulchral iconography. In addition to bearing a brief inscription, a sepulchral iconograph depicted the deceased performing some action or deed for the last time, plus showed the grief of the survivors. The ancient Greeks believed that such sepulchers possessed magical powers and thus should be treated as shrines. Jocelyn Toynbee (Death and Burial in the Roman World) asserts that the apparent transition in funerary iconography during the fourth century B.C.E. to more violent and gruesome themes and figures was the result of a new conception of death as a destructive process that severs the deceased from the living. Similar to the Egyptians providing a Book of the Dead, the ancient Greeks enclosed information in the tomb of the deceased to help him or her negotiate the underworld, ruled by Hades; this House of Hades eventually become known as Hades. They also sent along coins, honey cakes, clothing, and other items for entry into and use in the afterlife. The ancient Greeks did not practice embalming or mummification; the families of the dead prepared the body for burial—bathing them, anointing them with spices, perfumes, and oil to mask the odor of putrefying flesh, and dressing them. Clothing specifically for the dead and special flowers were provided
xx The Encyclopedia of Death and Dying by friends and relatives. In the manner of future “wakes,” they waited three days and watched the body carefully to be sure the person really was dead. The watching over the body also assured no harm would come to it prior to burial. What we would call religious beliefs varied widely among the ancient Greeks, but actual funeral rites seem to have been quite uniform. As early as the late eighth century B.C.E., the Greeks began to venerate the tombs of heroes, who became immortal and dwelled with the gods on Olympus, going so far as to attempt to restore their remains to their native cities. Cremation came into practice for the Greeks about 300 B.C.E. Ancient Romans used both cremation and burial, with commoners more often buried and the aristocratic class opting for cremation, a status symbol influenced by the Greeks and Etruscans. Cremation became fashionable among aristocrats throughout the Roman Empire and was the funeral mode of the Caesars. In preparation for a Roman funeral, a group of slaves called pollinctores would wash the body daily for seven days with hot water and oil—the delay primarily to prevent premature burial. The body would lie in state for viewing by the populace; those who could afford it would hire a libitinarius to handle the anointing or embalming, purchase special clothing for the dead, supply professional mourners and mourning clothes, arrange for services aimed at relieving the grief of the bereaved, and arrange for the details of the funeral procession, which would usually be held at night to avoid defilement of the living. The wealthy would purchase elaborate urns for those to be cremated. At one point cremation was forbidden within the gates of Rome because of the smoke pollution of too many funeral pyres. During these same ancient times, death and the proper treatment of the dead were important issues for both the Canaanites (of ancient Palestine) and Israelites, as they were for all the peoples of the ancient Near East—attested to by frequent references to burial in the Bible and other ancient writings, and by the presence of thousands of tombs, which modern archaeologists have excavated in the area. According to the University of Pennsylvania Museum of Archaeology and Anthropology, appropriate arrangements included activities perpetuating the name of the deceased, offerings of food and other gifts, and the proper stewardship of family land. Upon death,
males appear to have joined the ranks of their ancestors. Ideas regarding the nature of life after death are not well developed in either the Hebrew Bible or in ancient Near Eastern texts, but death was clearly frightening, and the dead were associated with the underworld. The most common burials during this time are in family tombs located in natural caves or hewn chambers, approached by a shaft or passageway and closed with a single stone or pile of rubble. These tombs were used as burial vaults for the family over several generations. As each new body was placed in the tomb, previous burials were displaced, creating a jumble of intermixed bones and old offerings on the periphery. Funeral offerings typically included jars containing grain, wine and oil, items of personal apparel and occasionally beds, tables, game boards, and other items of everyday life. These varied offerings point to a belief in the afterlife. The ancient Israelites considered burial to be the only proper method of corpse disposal—often burying the body without even a coffin—and “decent” burial was regarded to be of great importance. There is no explicit evidence as to how soon after death burial took place, but it is likely that it was within a day after death. This was dictated by the climate and by the fact that the Israelites did not embalm the dead (certain biblical persons, such as Jacob and Joseph, were embalmed following Egyptian custom) because it was seen as mutilation of the body. Preparation for burial consisted of wrapping the body and the applying of oils and spices. In Talmudic times, burial took place in caves, tombs carved out of rock, sarcophagi, and catacombs; and a secondary burial, or re-interment of the remains, sometimes took place about one year after the original burial. The practice of burial as the only means of corpse disposition influenced early Christians, who dictated that bodies were to be buried as a symbol of awaiting the resurrection, when they will rise from their graves. In addition to saving the body for resurrection, the early Christian church also rejected cremation because of its association with pagan societies of Greece and Rome. With the rise of Christianity, its becoming the official religion of the Roman Empire and its spreading through Europe, cremation stopped in Western Europe for a time. Aiken writes that early Christian burial was with the feet to the east, so that the “last trumpet,” which
Introduction xxi would presumably be sounded from that direction, could best be heard and responded to more quickly. In addition, the placement of the head to the west symbolized the end of life.
Death in the Middle Ages The Middle Ages covered the period in European history that followed the fall of the Western Roman Empire (C.E. 475–600) and lasted into the 15th century or the beginning of the Italian Renaissance, most often designated as somewhere between 1453 and 1500. Anxiety about death reached a peak in the Middle Ages, stimulated by numerous plagues, epidemics, wars, and the short life spans of this period. Not only did adults consider their own deaths as imminent, they also expected babies and children to die—because so many did. Life expectancy in England during the Middle Ages was 33 years. Thus, death and dying were more visible during this period than they are today. Lewis Aiken notes that “publicly viewed executions, mortal skirmishes involving ordinary people, and mass epidemics that claimed the lives of thousands were common occurrences. No one knew when death might strike or even if it might happen before the day was over.” For example, the Black Death killed between a quarter and a half of the population of Europe during the 14th century. In characterizing attitudes toward the dead in the early Middle Ages, Philippe Aries speaks of the “tame death,” an inevitable, familiar, and orderly part of life, sometimes feared but never denied—an attitude possibly carried forward from prehistory cultures. Because people of the Middle Ages were so intimately connected with death, they tended to see it as a natural course and conclusion of their life on Earth. Great importance was placed on a man’s knowing that he was about to die so he could prepare for it with final rituals. Unexpected, or sudden and accidental, death was most feared because it would keep him from these preparations, and especially from the last rites of the church, making damnation all the more likely. Because most major illnesses were fatal, death could be predicted with some accuracy. People frequently organized final rituals in their own bedrooms, with family members, physicians,
priests, and perhaps legal representatives assembling around the bedside of the dying person. During these rituals, which could last for days, grief was expressed, and personal, religious, and legal matters were discussed. This encouraged dying persons to put their worldly affairs in order so they could then die in peace with the knowledge that their last wishes would be honored. The dying were expected to await death patiently, often holding a crucifix. Those around the deathbed were warned not to give the dying person hope of recovery or to distract him with talk of worldly possessions. Even deaths on the battlefield during this period tended to be slow, usually, according to Jones, allowing the injured warrior to lie down facing Jerusalem, cross his arms over his chest, settle earthly accounts, and say his prayers. A priest might be present to hear his confession and give absolution. “Finally, the medieval person—warrior or peasant—simply lapsed into silence and waited for death.” Embalming was not condoned by the church during the early Middle Ages, but was resumed for royalty and nobility in the late 1200s and continued as such until the 1700s. Historians note that during this period, great advances were being made in medicine and bodies were needed for dissection purposes, which would have meant a logical use of embalming and even improved techniques in the process. For example, Leonardo daVinci (1452– 1519) produced hundreds of anatomical plates as a result of his dissection of the human body, using arterial injection to preserve his specimens. During the late Middle Ages, the church became a unifying institution, leading to a tremendous boom in religious discussion of death and the afterlife. Although death remained a common and even anticipated experience, the Christian church viewed suicide as destroying something created by God. As a result, the penalties for suicide were severe, including denial of Christian burial, degradation of the corpse, confiscation of the deceased’s possessions, and censure of the survivors. Reminiscent of the Egyptian Book of the Dead, the Ars Moriendi (The art of dying), a book thought to have been written by German monks during the late Middle Ages, explained how to die in a dignified, holy manner, providing both the dying person and his or her relatives religious sayings and prayers
xxii The Encyclopedia of Death and Dying for the deathbed, and answering questions about salvation. The preoccupation with death during the late Middle Ages led to a preponderance of macabre art, with the human skeleton or a decaying corpse complete with maggots being used to personify death in jewelry, woodcuts, poetry, and dramatic works. Historians have referred to the late Middle Ages as a “wallowing” in death. Barbara Tuchman (A Distant Mirror: The Calamitous 14th Century, 1978) argued that anxiety over the expected end of the world contributed to the cult of the dead during the Middle Ages. A belief in the approach of Judgment Day was prompted not only by the massive number of deaths caused by war, disease, and famine during the 14th and 15th centuries but also by a widespread feeling that sin was becoming rampant and that the human soul was aging. Even during the Renaissance period (approximately 1400–1650), characterized by a rebirth of the cultural and artistic life and a release of thought and action from the strict theological dogmas of the Middle Ages, each individual was consumed with anxiety over his or her own death. Superstitions and rituals practiced in medieval and Renaissance Europe included: holding a continuous bedside vigil, known as a deathwatch; sounding a bell as the person died, known as a death knell; hanging wreaths on the doors of the deceased’s home, and turning mirrors toward the wall or covering them with black cloth. But the pessimism of the Middle Ages was turning to optimism. Aiken writes that new geographical and scientific discoveries led people to believe they could prevail against nature; thus the theme of human fortitude and competence in the face of mortality, which had been seen in early Greek art, became fashionable again. There was a new confidence that disease could be curbed. In the New World in 1565, the first lasting European community on the mainland of North America was established by the Spanish on the east coast of Florida, at St. Augustine. An essential feature of the fortified settlement was the Roman Catholic mission church with its associated burial ground. The archaeological record shows shroud-wrapped interments were customary in the city’s Spanish colonial period. Traces of coffins or coffin hardware
do not appear in colonial burials before the beginning of English immigration to the area in the 18th century. Graves of the Spanish colonists occurred in consecrated ground within or adjacent to a church. They followed a pattern of regular, compact spacing and east-facing orientation. These characteristics, together with arms crossed over the chest and the presence of brass shroud pins are a means of distinguishing Christian burials from precolonial Native American burials.
Native American Burial Customs The National Park Service tells us that Native American burial customs have varied widely, not only geographically, but also through time, having been shaped by differing environments, social structure, and spiritual beliefs. Prehistoric civilizations evolved methods of caring for the dead that reflected either the seasonal movements of nomadic societies or the life ways of settled communities organized around fixed locations. As they evolved, burial practices included various forms of encasement, sub-surface interment, cremation, and exposure. Custom usually dictated some type of purification ritual at the time of burial. Certain ceremonies called for secondary interments following incineration or exposure of the body, and in such cases, the rites might extend over some time period. Where the distinctions in social status were marked, the rites were more elaborate. The Plains Indians and certain Indians of the Pacific Northwest commonly practiced above-ground burials using trees, scaffolds, canoes, and boxes on stilts, which decayed over time. More permanent were earthen constructions, such as the chambered mounds and crematory mounds of the Indians of the Mississippi River drainage. In some areas of the Southeast and Southwest, cemeteries for urn burials, using earthenware jars, were common. After contact with European Americans, Native American cultures adopted other practices brought about by religious proselytizing, intermarriage, edict, and enforcement of regulations. The Hopi, Zuni, and other Pueblo peoples of Arizona and New Mexico were among the first to experience Hispanic contact in the 16th century, and subsequently, their ancestral lands were colonized. At the pueblos, stone and adobe villages where
Introduction xxiii Roman Catholic missions were established, burials within church grounds or graveyards consecrated in accordance with Christian doctrine were encouraged for those who had been converted to the faith. However, Native Americans also continued their traditional burial practices, when necessary in secret. Throughout the period of the fur trade in the North Pacific, beginning in the late 18th century, Russian Orthodox missions were established among the native populations settled along the coastline and mainland interior of Russian-occupied Alaska.
Beginning of the Modern Era, 1700–1850 High death rates in Europe continued until the early 1700s, with the new century ushering in the age of classical funeral monuments and dignified prose epitaphs. Jupp and Gittings write that substantial headstones began to transform the appearance of churchyards. The testimonies of countless funerary inscriptions and funeral sermons are complemented by descriptions of individual reactions to death in some of the most intimately revealing of all English diaries and private correspondence. The apogee of “rational religion” was followed by the beginnings of evangelical revival. In the American colonies, where religion formed the very foundation and reason for being there for many, Laderman explains that the decaying corpse held deep meaning, illustrating the wages of sin and serving as a humbling reminder to Christians of their inglorious fate. The corpse was “sacred,” the rituals of burial clearly prescribed. Early Puritans rejected churchyard burials as they rebelled against other “papist” practices, as heretical and idolatrous. Instead, many 17th-century New England towns set aside land as common community burial grounds. Headstone images from this period also reflect the rejection of formal Christian iconography in favor of more secular figures, such as skulls representing a fate common to all men. The ideal during the colonial period in the other English colonies was to bury the dead in churchyards located in close proximity to churches. Churchyard burials remained standard practice into the 20th century for European Americans and other cultures in the Judeo-Christian tradition.
In areas such as the Middle Atlantic region and the South, settlement patterns tended to be more dispersed than in New England. Although early settlements such as Jamestown established church cemeteries, burial in churchyards eventually became impractical for all but those living close to churches. As extensive plantations were established to facilitate the production of large-scale cash crops, such as tobacco, several factors often made burial in a churchyard problematical: towns were located far apart, geographically large parishes were often served by only a single church, and transportation was difficult, the major mode being by water. The distance of family plantations from churches necessitated alternative locations for cemeteries, which took the form of family cemeteries on the plantation grounds. They usually were established on a high, well-drained point of land, and often were enclosed by a fence or wall. Although initially dictated by settlement patterns, plantation burials became a tradition once the precedent was set. Along with the variety of dependencies, agricultural lands, and other features, family cemeteries help illustrate the degree of self-sufficiency sustained by many of these plantations. In the young republic of the United States, the “rural” cemetery movement was inspired by romantic perceptions of nature, art, national identity, and the melancholy theme of death. It drew upon innovations in burial ground design in England and France. Toward the end of the period in Europe, the church had begun to lose its control over burial matters, as the church building began to lose its place as the central point of the death ritual, with an increased use of secular burial places where pagan symbolism could take over. In addition, the bereaved began to pay less attention to the spiritual fate of the deceased, reducing the importance of a clerical presence at the deathbed. Major movements of thought and feeling also transformed attitudes toward death: the Enlightenment—a European intellectual movement that emphasized reason and individualism rather than tradition—and Romanticism—which emphasized inspiration, subjectivity, and the primacy of the individual—both had a profound impact on beliefs relating to the afterlife and the experience of loss and bereavement. Jones explains
xxiv The Encyclopedia of Death and Dying that the Romantics no longer feared the shellfire and brimstone of their Puritan ancestors, but compared death to the unfolding of a butterfly from its chrysalis. Large-scale urban mortality established the need for new ways of dealing with the dead, and a growing division between lower and upper classes increasingly commercialized death rituals. The traditional Christian ideal of the “good death” was still exceptionally powerful in England in I850, though its realization varied widely according to class, religion, age, gender, and disease. Christian mourning rituals and the belief in family reunions in heaven helped to reconcile some parents to high infant and child mortality. Moreover, the solace of the private and social memory of the dead was complemented by visible symbols of remembrance such as paintings, photographs and death masks of the deceased, and mourning jewelry. Deathbed scenes became events of grand drama. Simple grave markers went out of fashion as ornate tombstones, statues, and monuments took their place. Prior to the Civil War in the United States, death typically took place in the home following a protracted deathbed watch. Family members and neighbors would lay out, wash, and shroud the corpse. Viewing of the deceased also took place at home, with the body going swiftly into the ground. Thus, death was close at hand, a common occurrence, and observed up close even by children. Although the setting was the home, certain aspects of the care of the dead began to be handed over to persons outside the family: cabinetmakers began making the coffins, church sextons would lay out and manage graveyards next to the church as burial moved from home plots to graveyards, and livery service operators would hire out their wagons to carry the deceased to the graveyard. Embalming was rarely done. This perspective on death and the dead changed in the years prior to the Civil War as a dramatic shift occurred in the way Americans perceived and responded to death.
Emergence of the Funeral Industry By the time of the Civil War, some individuals—frequently the cabinetmakers who made the coffins— were “undertaking” the coordination of tasks that needed to be done to complete funerals, as a way of
easing the grief of the bereaved families. Laderman explains that the industry’s rapid growth was made possible by the experiences of northern families during the Civil War. Prior to the war, embalming had negative associations for most Americans. The desire of northern families to have loved ones who had perished on southern soil returned home for a proper burial, however, led them to view the chemical preservation of the dead in a different light. Anxious to gaze once more at the familiar face of their loved one, and aware of the impact the long journey home would have on the physical condition of the corpse, bereaved families turned to undertakers, who followed soldiers into the field to preserve their bodies for shipment home. The growing use of embalming during the Civil War years laid the foundation for the powerful funeral industry of the 1880s and beyond. Several cultural trends also facilitated the rise of the funeral industry. The growing public respect for scientific principles and methods, and a new, very pronounced deference to professionally educated and trained “experts” were two such trends. Equally important, however, were the expansion of commercial culture and the emergence of consumption patterns broad enough to include the purchase of an ever widening array of funeral services and products. Thus, to a degree, Laderman writes, science and consumerism triumphed over organized religion. In the place of the collective, shared public meaning of death available to Christians in the colonial period, he argues, postbellum Americans substituted private meanings shaped by a variety of new consumer symbols and supradenominational religious movements like Spiritualism. As the use of embalming grew, the impracticality of embalming and restoring a body in the deceased’s home led to funeral parlors appearing toward the end of the 19th century. Also following the Civil War, reformers concerned about land conservation and public health agitated for revival of the practice of incineration and urn burial. The cremation movement gathered momentum rapidly around the turn of the century, particularly on the west coast, and resulted in construction of crematories in many major cities. Columbariums and community mausoleums were erected in cemeteries to expand the number of buri-
Introduction xxv als that could be accommodated with the least sacrifice of ground space.
Death Practices in the Twentieth Century, Today and Tomorrow Perpetual care lawn cemeteries or memorial parks in the 20th century transformed the rural cemetery ideal of the previous century. A new lawn plan system deemphasized monuments in favor of unbroken lawn scenery, or common open space. Modern cemetery planning was based on the keynotes of natural beauty and economy. Whereas 19th-century community cemeteries typically were organized and operated by voluntary associations that sold individual plots to be marked and maintained by private owners according to individual taste, the memorial park was comprehensively designed and managed by full-time professionals. Whether the sponsoring institution was a business venture or nonprofit corporation, the ideal was to extend perpetual care to every lot and grave. The natural beauty of cemetery sites continued to be enhanced through landscaping, but rolling terrain was smoothed of picturesque roughness and hilly features. The mechanized equipment required to maintain grounds efficiently on a broad scale prompted standardization of markers flush with the ground level and the elimination of plot-defining barriers. In 1963, Jessica Mitford’s best-selling The American Way of Death exposed the avarice and commercialism of the American funeral industry at that time, demonstrating that death practices in the United States were among the most costly and elaborate in the world, and that funeral expenses had been rising faster than the general cost of living. Spurred by the public outcry because of Mitford’s exposé, the funeral industry did begin to reform its sales practices, and eventually the Federal Trade Commission set up the Funeral Rule. Even with a general clean-up of the industry, funeral costs have remained high, which, combined with general concern about land use, has caused the number of cremations in North America to increase dramatically in recent years: from 5 percent in 1962 to 20 percent in 1992. In 2000, 26 percent of Americans and 45 percent of Canadians were cremated. The Cremation Association of North America pro-
jects that in 2010, 31 percent of deceased Americans will be cremated and 47 percent of Canadians, and in 2025, 49 percent. According to the Cremation Society of Great Britain, in the year 2000, cremations took place in 71 percent of all funerals there. In other countries, such as Japan and Scandinavia, cremations reach as high as 95 percent. Along with body disposition, death itself has also changed markedly this past century. Throughout history and until quite recently, medical science could do little to prevent or cure life-threatening illnesses. Many people died young; infant death was commonplace. In 1900, 30 percent of the people who died were age five or younger; the life expectancy was only 50, with the average age of death 46, and only a few lived beyond age 85. By 1999, the percentage of people dying before five years of age had dropped to about 1 percent. Today, the “old-old,” those 85 and over, are the most rapidly growing sector of the aged. By the year 2050, people over 85 are expected to number over 19 million, making up 24 percent of older persons and 5 percent of the entire population in the United States. Today, three-fourths of those who die annually are older adults. Along with this “aging” of death has come a dramatic change in the causes of death. In 1900, the 10 leading causes of death were pneumonia, tuberculosis, diarrhea and enteritis, heart disease, stroke, liver disease, injuries, cancer, senility, and diphtheria. Most people died from infectious illnesses that caused death with certainty and relative rapidity. In 2001, the 10 leading causes were heart disease, cancer, stroke, chronic lung diseases, accidents, diabetes, pneumonia and influenza, Alzheimer’s disease, kidney diseases, and blood poisoning. It has been estimated that 70–80 percent of people in advanced industrial nations now face death later in life from chronic or degenerative diseases characterized by late, slow onset and extended decline. Where people die is also different today. Less than a generation ago, dying still often took place at home and among family. It was more of a religious experience than a medical one, with the doctor needed only to officially pronounce the passing. Because many deaths occurred at home, people were likely to care for dying relatives and, thus, to have a fairly personal and direct experience with dying and death.
xxvi The Encyclopedia of Death and Dying Today the typical place of death has changed to technologically sophisticated and often impersonal settings. It has been estimated that in the United States nearly 76 percent of all deaths occur in hospitals, medical centers, or nursing homes. Only a minority of people die in the care of formal hospice programs, and the majority of these hospice deaths involve cancer diagnoses. But even this is changing. More recently, the proportion of those who die at home has begun to increase because changes in Medicare benefits have led to increased availability of home hospice services. Medical treatments can now control “immediate killers” such as pneumonia and kidney failure that accompany cancer, heart disease, and other “slow killers.” Thus, with death from these conditions postponed, questions about life-prolonging treatment become central issues for patients, their families, their caregivers, and the wider community of ethicists, lawyers, and sociologists. All 50 state legislatures have addressed these issues in recent years, leading to a whole new body of end-of-life laws. In August 2000, the National Institutes of Health (NIH) called on the scientific community to “seek research grant applications that will generate scientific knowledge to improve the quality of life for individuals who are facing end-of-life issues and for their families. For many Americans, end-of-life care is fragmented, painful, and emotionally distressing, with unnecessary transitions between health care institutions, community-based organizations and home care settings. There are opportunities for health care providers to learn more about how to deliver optimal end-of-life care.” A study published in the Journal of the American Medical Association (JAMA) found that of 50 medical textbooks reviewed, about a quarter had helpful information on likely end-of-life subject areas, but 19 percent gave the subject minimal attention, and 57 percent none at all. With today’s surge in nursing home care, compounded by a more geographically-dispersed family,
many middle-aged adults, whose parents are reaching advancing age, have never cared for nor even been in contact with a person who is dying. Not only are they unfamiliar with the process; they have no firsthand knowledge of the issues and what must be considered. Because of all these cultural changes and differences in dying, end-of-life issues are receiving major attention from researchers and practitioners in the fields of medicine, psychology, sociology, ethics, law, economics, and religion.
Within This Book This encyclopedia is divided into two basic sections— first is the A to Z main body, second is the Appendix section. Within the alphabetical body of the book, you will find more than 560 terms related to the history, culture, religion, economics, sociology, laws, and medical aspects of death and dying. Any terms used within a listing that have their own separate listings are designated with small capital letters so that you can quickly and easily find expanded information. Also, many listings end with references to articles and books on the topic for further study. The Appendixes include organizations and groups that offer information and support, Internet Web sites offering resources and help; bibliographies of books, articles, and videos; a sample advance care document, end-of-life and funeral preplanning checklists, the odds of dying from various accidental injuries, leading causes of death for various population groups, suggested end-of-life care at home, where to write for death certificates, America’s war death statistics, and death care industry and consumer organizations, among other lists and tables. Overall, you will find a comprehensive overview of death and dying, with in-depth treatment of current end-of-life issues, in an easy-to-access format, and with plenty of assistance on where to go next for additional information on this topics of particular significance to you and your family.
ENTRIES A–Z
A 1.6 million in 1990). According to research conducted by the Alan Guttmacher Institute, a nonprofit organization focused on sexual and reproductive health research, policy analysis, and public education, 49 percent of pregnancies among American women are unintended and half of these are terminated by abortion. From 1973 through 2000, more than 39 million legal abortions occurred. Each year, two out of every 100 women aged 15 to 44 have an abortion; 48 percent of them have had at least one previous abortion and 61 percent have had a previous birth. Each year, an estimated 46 million abortions occur worldwide. Of these, 20 million procedures are obtained illegally. The Alan Guttmacher Institute also reports that 52 percent of U.S. women obtaining abortions are younger than 25 and 19 percent under age 20. Black women are more than three times as likely as white women to have an abortion, and Hispanic women are two-and-a-half times as likely. Twothirds of all abortions are among never-married women. Over 60 percent of abortions are among women who have had one or more children. On average, women give at least three reasons for choosing abortion: three-fourths say that having a baby would interfere with work, school, or other responsibilities; about two-thirds say they cannot afford a child; and one-half say they do not want to be a single parent or are having problems with their husband or partner. A political hot button today, abortion has “long been the subject of moral and legal controversy owing to disagreement about what constitutes a living human being and when life actually begins,” according to Ammer. Humanists, for example, do not consider an embryo or fetus to be a person, but rather, to have the potential of becoming one. They see the abortion decision as a personal, moral choice for the woman
abandonment of the dying
Abandonment of the dying is a term used by those opposed to ASSISTED SUICIDE, especially by those involved in the HOSPICE model of care. Hospice advocates and religious ethicists use this phrase to enforce their feeling that helping people die is a failure to adequately address patients’ fears and alleviate their suffering. George Webster, a bioethicist at St. Michael’s Hospital in Toronto, used the term when he stated that “euthanasia or assisted suicide can be nothing other than the ultimate abandonment of the dying.” Used in another context, Gilbert writes, “Any ANTICIPATORY GRIEF that takes place will inevitably involve withdrawal from and possible abandonment of the dying person.” Physicians have also been accused of abandonment of the dying when “confusing care with cure” and assuming that because they can no longer cure patients, they cannot care for them. Gilbert, Kathleen R. “Unit 11—Anticipated Losses and Anticipatory Grief.” Grief in a Family Context, Indiana University, February 1996.
abortion An abortion is a procedure to end a pregnancy by removing the embryo (first eight weeks after conception) or fetus (end of eighth week through birth) and placenta from the uterus before the fetus is “viable” or capable of living; also called induced abortion. Elective abortions are those initiated by personal choice. Therapeutic abortions are those recommended by a medical doctor in order to protect the mother’s physical or mental health. When a fetus aborts naturally or spontaneously, it is commonly referred to as a MISCARRIAGE. In 2000, 1.3 million women in the United States had an induced abortion (down from an estimated 1
2 abortion and not properly the subject of criminal legislation. At the opposite end, those who believe that a life is created at the moment of conception regard abortion as equivalent to murder. According to Ammer, “Many other views have prevailed, ranging from the idea that life begins when a fetus’s movements first are felt (St. Thomas Aquinas), to a particular time period after conception (Aristotle said 40 days for boys and 90 days for girls), to after delivery (the ancient Hebrews).” Abortion has, in fact, been practiced throughout history—at times legally and tolerated even by religious bodies, at other times crudely and outside the law. The patterns of abortion as a method of dealing with unwanted pregnancies have been strikingly similar throughout history and across societies, as noted in Abortion in Law, History & Religion:
Sogyal Rinpoche writes that the consciousness of those who die before birth will take on another existence. “If the parents feel remorse they can help by acknowledging it, asking for forgiveness, and performing ardently the purification practice of Vajrasattva. They can also offer lights, and save lives, or help others, or sponsor some humanitarian or spiritual project, dedicating it to the well-being and future enlightenment of the baby’s consciousness.” In the United States, in addition to being influenced by moral, religious, and social values, the issue of abortion has also been “shaped by racism, feminism, and class dynamics,” according to Ammer. “Philadelphia surgeon Dr. Everett Koop, the antiabortion activist who was to serve as Reagan’s Surgeon General, observed: ‘Nothing like it has separated our society since the days of slavery.’”
In primitive tribal societies, abortions were induced by using poisonous herbs, sharp sticks, or by sheer pressure on the abdomen until vaginal bleeding occurred. Abortion techniques are described in the oldest known medical texts. The ancient Chinese and Egyptians had their methods and recipes to cause abortion, and Greek and Roman civilizations considered abortion an integral part of maintaining a stable population. Ancient instruments, such as the ones found at Pompeii and Herculaneum, were much like modern surgical instruments. The Greeks and Romans also had various poisons administered in various ways, including through tampons. Socrates, Plato and Aristotle were all known to suggest abortion. Even Hippocrates, who spoke against abortion because he feared injury to the woman, recommended it on occasion by prescribing violent exercises. Roman morality placed no social stigma on abortion. Early Christians condemned abortion, but did not view the termination of a pregnancy to be an abortion before “ensoulment”—the definition of when life began in the womb. Up to 400 A.D., as the relatively few Christians were widely scattered geographically, the actual practice of abortion among Christians probably varied considerably and was influenced by regional customs and practices.
The Procedure Research shows that the risk of abortion complications is minimal—less than 1 percent of all abortion patients experience a major complication—making it safer than pregnancies carried to term. The risk of death associated with abortion increases with the length of pregnancy, from one death for every 530,000 abortions at eight weeks or earlier, to one per 17,000 at 16 to 20 weeks, and one per 6,000 at 21 or more weeks. The risk of death associated with childbirth is about 10 times as high as that associated with abortion. According to the American College of Obstetricians and Gynecologists, induced abortion can be done in several ways. The method depends on the patient’s choice, health, and length of time she has been pregnant. Medical abortion A medical abortion can be done within 49 days from the first day of the woman’s last menstrual period. It usually involves several doctor visits and two sets of drugs in pill form:
When explaining the Buddhist beliefs concerning abortion in The Tibetan Book of Living and Dying, author
Developed by a French pharmaceutical firm, RU-486 was first approved for use in France in 1988. After
• Mifepristone (trade name Mifeprex and also called RU-486, its French name) blocks the action of the hormone progesterone. • Misoprostol, a prostaglandin, causes the uterus to contract and expel the embryo through the vagina.
abortion 3 clinical trials in the United States and France, the Food and Drug Administration approved mifepristone for the termination of early pregnancy on September 29, 2000, amid controversy and concern that it would lead to even more abortions. Despite that anxiety, a study released in 2003 by the Alan Guttmacher Institute, showed that medical abortions using drugs in the first seven weeks of pregnancy remain a tiny portion of all abortions. Among the reasons given: higher cost, time-consuming, and potential for bleeding (for as long as two weeks, compared to little or no bleeding after surgical abortion). Menstrual aspiration (also called minisuction, miniabortion, vacuum aspiration, lunchtime abortion) Menstrual aspiration can be done within one to three weeks after a missed menstrual period. Performed on an outpatient basis, this procedure involves a thin plastic tube being inserted into the uterus and its contents sucked out via a syringe. The procedure takes about 10 minutes to complete. It is done without anesthesia, surgical risks are minimal, and the patient resumes her normal activities when she leaves the office. Suction curettage Suction curettage removes the contents of the uterus by a suction device that is inserted into the uterus. It also is sometimes called vacuum curettage. It can be done up to 12 weeks of pregnancy, and is the most common procedure used for abortion during the first trimester. Unless unusual circumstances exist, this procedure is done on an outpatient basis and may be done in a physician’s office or a clinic. The doctor first widens (dilates) the cervix (the opening of the uterus). It may take several hours and may be done by the physician inserting a small rod or sponge into the cervix, which swells as the sponge absorbs moisture. Or, the doctor may choose to enlarge the cervix right before the abortion by inserting and withdrawing larger and larger smooth metal rods until the cervix has been opened to the necessary size. Most women experience some pain, so the physician will administer a pain-killer, either locally by shots in the area of the cervix or, on rare occasions, by a general anesthetic. After dilation, a plastic tube about the diameter of a pencil is then inserted into the uterus through the enlarged cervix. The tube is attached to a pump
which then suctions out the fetus, the placenta, and other uterine contents. After the suctioning, the physician may find it necessary to use a curette (a sharp, spoon-like instrument) to gently scrape the walls of the uterus to make sure all the fragments of the fetus and placenta have been removed from the uterus. The procedure usually takes 10 to 15 minutes. Uterine cramping may occur afterward. After an hour or so of observation following the procedure, if the patient is not experiencing heavy bleeding or other complications, she is able to leave. Complications may include infection, heavy bleeding, perforation of the uterus (a hole or tear in the wall of the womb), cervical incompetence (a condition in which the cervix opens up too early in future pregnancies, increasing the risk of a miscarriage in future pregnancies), and injury to the cervix. Repeated abortions could increase the possibility of premature delivery or a low-birth-weight infant in future pregnancies. Dilation and evacuation D&E is done in the second 12 weeks (second trimester) of pregnancy. It usually includes a combination of vacuum aspiration, dilation and curettage (D&C), and the use of surgical instruments, such as forceps. It routinely takes about 30 minutes and is usually done in a hospital, although an overnight stay is not normally required. Labor-inducing abortion For abortions later in pregnancy, labor may be induced with drugs. Laborinducing abortions are almost always done in a hospital. Emotional Effects Whether the reason for the abortion is health or personal choice, it is not unusual for the woman undergoing the abortion to feel some emotional effects because of the resultant “death.” The intensity and duration of these emotions vary from woman to woman. Some will feel relief; others anger or guilt; still others depression. It is a normal grieving process compounded by natural hormonal changes that occur with any pregnancy. For most women, this occurs for a short period of time. If symptoms of sleep disturbance, loss of interest in work or sex, or anger are persistent or remain intense, professional counseling may be needed.
4 accelerated death benefits In an uncontrolled British study of women who had terminated their pregnancies for genetic (defect) reasons, three in four (77 percent) of the mothers developed ACUTE GRIEF REACTION. Forty-six percent remained symptomatic six months after termination; some required psychiatric support. A more recent case-control study evaluating the grief responses of women who terminated their pregnancies for fetal anomalies concludes that “women who terminate pregnancies for fetal anomalies experience grief as intense as those who experience spontaneous perinatal loss, and they may require similar clinical management.” The extent of emotional or psychological stress resulting from an abortion is as hotly debated as the life-choice issue itself. When studies over time led to a general consensus among medical communities that most women who have abortions experience little or no psychological harm, right-to-life advocates countered with other studies showing that most women who have abortions will suffer to some degree from a variant of post-traumatic stress disorder called “post-abortion syndrome”—a condition not recognized by psychiatric or psychological groups. The continued discrepancies and criticisms from both sides of the other’s methodological flaws draw attention to the need for more long-term, indepth prospective studies. Abortion in Law, History & Religion. Toronto: Childbirth by Choice Trust, 1995. “Abortion Procedures” Michigan Department of Community Health. URL: http://www.michigan.gov/mdch/ 0,1607,7-132-2940_4909-46328—,00.html Downloaded on July 9, 2004. Ammer, Christine. “abortion,” in The New A to Z of Women’s Health, Fourth Edition. New York: Facts On File, 2000. Arthur, Joyce. “Psychological After-Effects of Abortion: The Real Story.” The Humanist 57, no. 2 (March/April 1997). Lloyd, J., and K. M. Laurence. “Sequelae and Support after Termination of Pregnancy for Fetal Malformation.” British Journal of Medicine (Clinical Research Edition) 290, no. 6472 (March 23, 1985): 907–909. Ney, P. G., and A. R. Wickett. “Mental Health and Abortion: Review and Analysis.” Psychiatric Journal of the University of Ottawa 14, no. 4 (November 1989): 506–516. Rogers, James L., George B. Stoms, and James L. Phifer. “Psychological Impact of Abortion: Methodological and
Outcomes Summary of Empirical Research between 1966 and 1988.” Health Care for Women International, 10, no. 4 (1989): 347–376.
accelerated death benefits (ADB)
Some life insurance policies have an accelerated death benefits option (or rider), which allows advance payment of some portion of the death benefit while the insured person is still alive, should the insured suffer from a terminal illness as defined by the policy. The intent of ADB is to provide funds to meet extraordinary living, medical, or hospice expenses during the insured’s final days. In most policies containing this option, the insurance company will pay the insured a portion (usually 50–80 percent) of the policy’s face value, minus any outstanding policy loans. The insured is usually eligible if he or she has 12 months or less to live and added this option to the life insurance policy prior to becoming terminally ill. A few companies’ life expectancy requirements may range to two years. In some states and with some policies, ADB is payable when the insured requires long-term care or confinement to a nursing home. Accelerated death benefits are sometimes referred to as “living benefits.” Accelerated death benefits began in 1988 as a way of giving terminally ill AIDS patients a portion of their life insurance proceeds. It has since expanded to include other terminal and chronic illnesses. By 1998 an estimated 40 million individual or group policies included an ADB option. Approximately 75 percent of insurance companies offer the ADB option, although it is not available for all types of policies. Each company’s plans are different; some will include ADB only with a new policy, while others will add riders to certain existing policies. Some companies charge additional premiums for ADB coverage; others offer it at no additional premium, but impose an interest charge and/or a service fee when the benefit is paid. The interest charge is deducted either from the accelerated payment or from the final death benefit. Most life insurance companies limit the amount of death benefit that can be accelerated, by restricting either the percentage of the death benefit or the dollar amount received. When an individual has a policy with this option and wants to implement it, the insured or close fam-
acceptance ily member must contact the life insurance company that issued the ADB option. The company will outline what is needed to prove the insured is terminally ill or has a qualified covered condition. Payment choices may include either a lump sum or monthly payments, although lump sum is the most frequent option. Some states, such as Illinois, also let life insurance companies pay up to a specified percentage (such as 75 percent) of the policy’s face value for certain medical conditions, such as heart attack, Alzheimer’s disease, or major organ transplant. Important considerations when contemplating an ADB payout: • After the insured’s death, the policy may no longer pay the intended beneficiary any death benefit, or it may pay a much lower benefit than the policy was originally planned to cover. • If the insured owes money, creditors may try to collect what he or she owes them from such life insurance payouts. • Advance payments from life insurance may affect the insured’s eligibility for programs such as Medicaid and supplemental Social Security income. The U.S. Department of Health and Human Services and the Centers for Medicare and Medicaid Services (formerly the Health Care Financing Administration) have rules that an insured cannot be forced to request or collect accelerated death benefits before qualifying for Medicaid benefits. But once accelerated death benefits are elected, those funds could be considered income when determining for Medicaid eligibility. • Under federal income tax law affecting payments received during 1996 and earlier, living benefit payments were subject to federal income tax. Under Public Law 104–191, the Health Insurance Portability and Accountability Act of 1996, Subtitle D, Treatment of Accelerated Death Benefits, living benefit payments received after December 31, 1996, will not be subject to federal income tax. However, many states have laws, regulations, or rulings concerning the taxability of accelerated death benefits as applied to state income taxes. See also VIATICAL SETTLEMENT.
5
acceptance Acceptance is the fifth and final stage that people go through upon learning they are dying, according to ELISABETH KÜBLER-ROSS. It involves a coming to terms with the situation without feelings of hostility, and allows time for facing reality in a constructive way. Kübler-Ross described acceptance as the ideal stage of death. The patient says, “I have finished all, till now, unfinished business. I’ve said all the words that had to be said. I am ready to go.” Unlike those who remain angry and depressed, “patients who are in the stage of acceptance show a very outstanding feeling of equanimity and peace. There is something very dignified about these patients.” In his critique of Kübler-Ross, Kuykendall counters that “Since, in the psychoanalytic perspective, one can never move far beyond the limits set by the unconscious, it is impossible to come to a final, peaceful acceptance of death. Rather, dying individuals are inevitably torn between the inescapable reality of impending death and the intolerability of the idea of dying; consequently, they experience great unrest and anxiety.” In his review of her works, Branson writes that throughout her books “Kübler-Ross charges medical personnel, and even relatives, with communicating to the dying patient their own fear of and hostility toward death—‘I think most of our patients would reach the stage of acceptance if it were not for the members of the helping professions, especially the physicians, who cannot accept the death of a patient . . . the second and quantitatively more frequent problem is the immediate family which “hangs on” and cannot “let go.” Comparing the Kübler-Ross philosophy to Socrates, Branson says, “Socrates displays total calm, an acceptance of death that the Stoics considered the essence of dignity.” Death and bereavement counselor San Filippo asserts that “through the attainment of an understanding and acceptance of death, life can be lived more fully and death can come more peacefully.” See also ANGER; BARGAINING; DENIAL; DEPRESSION. Branson, Roy. “Is Acceptance a Denial of Death? Another Look at Kübler-Ross.” The Christian Century (May 7, 1975): 464–468. Kuykendall, George. “Care for the Dying: A Kübler-Ross Critique.” Theology Today 38, no. 1 (April 1981): 37–48.
6 acceptance phase of grief San Filippo, R. David. “Acceptance of Death.” Lutz-San Filippo Counseling Library. Available online. URL: http:// www.lutz-sanfilippo.com/library/lsfacceptancedeath. html. Posted April 14, 1991.
acceptance phase of grief
During this final stage, the grieving person is at last able to face the reality of the loss of a loved one calmly and with a resignation that allows an acceptance of that loss. The anger, sadness, and mourning have gradually diminished. The person now begins to move on. Although the survivor will probably never forget the one who is gone, the realization sets in that he or she has to say farewell, and return to the living. While comparing Kübler-Ross’s stages of dying with the similar stages people go through when grieving the death of others, Jones refers to the stage following despair and struggle coping as the acceptance of the reality of a loved one’s death and the beginning of healing. “Survivors begin to become interested in life again. Food tastes good again. They are able to laugh and enjoy friends and family more often. They think of their (departed) loved ones without feeling overwhelming sadness. They even feel like they learned something from their loss.” See also GRIEF; THE GRIEVING PROCESS.
Jones, Constance. R.I.P.: The Complete Book of Death & Dying. New York: HarperCollins, 1997.
accidental death
Accidental death is sometimes defined legally as “unintended and essentially unavoidable death, not by natural, suicidal or homicidal means.” As defined by the Social Security Administration, an accidental death is a death: (1) resulting directly from bodily injuries, independent of all other causes, which were received solely by violent, external, and accidental means; and (2) occurring within three months after the day on which the injuries were received. In compiling its own statistics, the National Safety Council considers accidental any death that occurs within one year of the accident. • The National Center for Health Statistics reported 97,902 accidental deaths in the United States in
2000, or 4.1 percent of the deaths from all causes, ranking accidental deaths fifth as a cause of death. The accidental death rate was 35.6 deaths per 100,000 population. • By far, the most frequent cause of accidental death in the United States in 2000 was motor vehicle accident (43,354), followed by falls (13,322), accidental poisoning (12,757), drowning (3,482), fires and burns (3,377), boating and airplane (1,903), other land vehicle (1,492), firearms (776). • According to the National Safety Council, the odds of dying from an accidental injury in 1999 were one in 2,788. The lifetime odds of dying from an accidental injury for a person born in 1999 were one in 36. • May through August account for nearly half of all injury-related childhood deaths, with July being the deadliest month, according to a study completed by the National Safe Kids Campaign. During the summer months, when children are out of school, lack adequate supervision, and spend more time outdoors, the risks to children are heightened. Drowning is the greatest summer risk for children ages 14 and under, increasing 96 percent above average during the summer. • Throughout the year, accidental injury is the number one cause of death across the nation for children 14 years and younger. • More than 1,800 children age 13 or younger died in motor vehicle accidents in 2000. The number of deaths was 60 percent higher from June to August than during the winter, largely because more people are on the road. During the week, half of all motor vehicle deaths suffered by children occur between Friday and Sunday. • Nationwide, accidental deaths of children 14 and under totaled 40,240 from 1991 to 1996, according to the National Safe Kids Campaign study. • In the United States, more than half of all accidental deaths among people aged 65 years and older (more than 16,000 deaths each year) are caused by motor vehicle crashes and unintentional falls, but a CDC study found differences in rates among ethnic groups and between genders in this age group. Motor vehicle–related death
acute grief reaction 7 rates for men were highest among American Indians and blacks. Death rates for women were highest among American Indians and Asians, and lowest among blacks. Older Asian women had motor vehicle–related death rates nearly twice those of black women. Fall-related death rates for both men and women were highest among whites. Rates were lowest among blacks and about half the rate of whites. Non-Hispanics consistently had higher fall-related death rates than Hispanics. Kane, B. E., A. D. Mickalide, and H. A. Paul. Trauma Season: A National Study of the Seasonality of Unintentional Childhood Injury. Washington, D.C.: National SAFE KIDS Campaign, 2001. SSA’s Program Operations Manual System. “GN 00305.105 Accidental Death.” Social Security Administration. Available online. URL: http://policy.ssa.gov/poms.nsf/ lnx/0200305105. Last updated May 10, 2001. Stevens, Judy A., and A. M. Dellinger. “Motor Vehicle and Fall-Related Deaths among Older Americans 1990–98: Sex, Race, and Ethnic Disparities.” Injury Prevention 8, no. 4 (December 2002): 272–275.
accidental death and dismemberment (AD&D) insurance Insurance companies offer insurance coverage that provides payment if the insured’s death results from an accident, or if the insured accidentally severs a limb above the wrist or ankle joints, or totally and irreversibly loses his or her eyesight. The accidental death portion may be offered as an Accidental Death Benefit Rider, which is a life insurance policy add-on providing for payment of an additional cash benefit related to the face amount of the base policy when death occurs by accidental means. AD&D insurance coverage is lower in cost than traditional life insurance that pays for any and all causes of death because the risk to the insurance company that the insured will die accidentally is much less than the risk that he or she will die at all during the life of the policy. Because of the lower risk that the insured will die as a result of an accident, rather than disease or other “natural” causes, or the lower risk of losing a limb compared to suffering a crippling injury, many financial experts consider AD&D a poor investment.
They argue that AD&D creates the illusion of having much greater insurance protection than one actually holds. They advise putting the premium funds into other forms of insurance that cover death from any cause. In the early 1900s accident insurance coverage was restricted to men as a means of replacing their lost income and to the few women who were their families’ sole support. According to Perez, “One of the first accident policies, which sold for about two cents, covered a Connecticut businessman’s fourblock walk from his home to the post office.” When air travel became more common during the 1950s, employers began carrying accidental death insurance on their employees who traveled frequently. Today, with general insurance costs climbing, fewer employers offer extensive employee coverage packages, so AD&D coverage has become an important personal insurance product for the insurance industry. Over time, basic AD&D coverage has expanded, with many companies now including in it benefits such as bereavement and trauma counseling, and child care expenses for a period of years if an insured spouse dies as a result of a covered accident. Perez, Anthony. “Accident Coverage Evolves with Rapidly Changing World.” Employee Benefit News 16, no. 8 (June 15, 2002): 20–21, 51.
acute grief reaction
A normal and understandable reaction to loss, acute grief is an intense wave of grief that can occur at any time from immediately following the loss up to 12 months later. This intense feeling may wane, then reappear. Despite the best efforts of health care providers and careful attention to ANTICIPATORY GRIEF, some family members will experience dramatic and disturbing acute grief reactions. These reactions may include denial, intense crying spells, anxiety, and physical symptoms that may be distressing to family and providers. Zerbe and Steinberg describe the symptoms of acute grief reaction as including: numbness or “dampened” emotions; temporary loss of selfesteem, which generally returns to normal quickly; anger; anxiety; impaired concentration and short-
8 adolescents and grief term memory; turbulent mood swings; preoccupation with the deceased; vivid images of the dead person, especially when drowsy (these are not a sign of psychosis); mild dissociative experiences; urge to search for the deceased; restless sleep; and increased physical preoccupations. According to the World Health Organization, physicians should avoid prescribing medication for acute grief reaction if possible. If the grief reaction becomes abnormal (lasts longer than two weeks at a time or persists beyond six months) and depression is a concern, antidepressant and/or tranquilizing drugs may be prescribed. An acute grief reaction may also occur in the patient who knows he is dying. See also COMPLICATED GRIEF REACTION; PREPARATORY GRIEF. Casarett, D., J. S. Kutner, and J. Abraham. “Life after Death: A Practical Approach to Grief and Bereavement.” Annals of Internal Medicine 134, no. 3 (February 6, 2001): 208–215. Zerbe, Kathryn J., and Deborah L. Steinberg. “Coming to Terms with Grief and Loss: Can Skills for Dealing with Bereavement Be Learned?” Postgraduate Medicine 108, no. 6 (November 2000): 97–106.
adolescents and grief
Adolescence—the period between puberty and full maturity—is rife with change. More commonly referred to as teens, adolescents are going through physical growth and psychological development—at times still childlike in their actions, at other times displaying adultlike behavior. Their increasing ability to reason and think abstractly like adults may cause them more suffering than children, who are somewhat protected by their “magical” way of thinking. Because of these conflicting emotions and thoughts, adolescents can find the grieving process to be confusing and difficult, making them especially vulnerable. Death of a friend or family member during this time intensifies the issues already present during adolescence. Because most adolescents consider death to be something that happens to old people and distant from their foreseeable future, they may seem uncaring and even callous about deaths not close to them. Then, when someone close to them does die, it
upsets that image of remoteness. Understanding and accepting the death of a peer is especially difficult for adolescents. The death of another adolescent tends to affirm the possibility of one’s own death. After the Columbine Massacre in 1999 and the September 11, 2001, attacks, concerns arose about how adolescents would deal with such tragedy. According to Christ et al., “Violent death may cause more frequent traumatic stress responses with intense fears of personal safety, intrusive frightening images, feelings of guilt, and beliefs that death could have been prevented or must be avenged. Usually such responses are transient, but in some they remain, leading to more severe psychopathology such as posttraumatic stress disorder (PTSD) and a heightened risk for complicated bereavement conditions.” Following such traumatic deaths, it is often necessary to at least partially resolve the trauma issues before the grief issues can be successfully dealt with. Grieving the Loss of a Parent Adolescents’ primary concerns relate to themselves—figuring out who they are and where they belong in their universes (peers, family, society). At the same time that they are defining themselves, they are loosening the psychological strings of parental dependence. Frequently, this involves periods of rebellion and “battles” between teen and parents as the teen works through the psychological separation. When the teen suddenly also faces the physical and permanent loss of a parent, while dealing with the psychological separation, he or she may feel responsible—as if those thoughts of wanting to be rid of parental controls somehow contributed to the parent’s death. According to some experts, loss of a parent during the early years of adolescence can be especially traumatic because the young teen would have been more dependent on the parental guidance and authority that has now been stripped away. And during later teen years, the adolescent may worry about how the parent’s death will impact his or her career goals. Even when the parent’s death follows a lingering illness, it can be a shock to the adolescent. In their article about adolescent grief, Christ et al. followed the grieving process of a 14-year-old whose mother
adolescents and grief 9 had died from cancer. The boy was not seeing death for the first time—an infant sister and a grandmother had died earlier— yet he still had problems dealing with it. “Although he was kept unusually well informed about his mother’s condition throughout the course of her illness, he was nonetheless surprised when she actually died.” Adolescent Reactions to Grief Among the feelings an adolescent may experience following the death of a loved one are: abandonment, anger, anxiety, betrayal, bewilderment, confusion, depression, disbelief, despair, fear, guilt, helplessness, hopelessness, loneliness, neglect, numbness, panic, rejection, sadness, shame, and shock. The death of a parent can be experienced as abandonment and rejection. Barbara Flynn Sidelau explains in Comprehensive Psychiatric Nursing that “When a parent dies, the parental obligation to remain loyal and give affection, support, nurturing, and responsible parenting is not fulfilled. These unmet obligations are entered into the ledger as accounts owed. Children experience an injustice. They may seek retribution and rebalancing of their account by searching for the lost parent through the assumption of a dependent role in their relationships with others. Their neediness is insatiable, and their dependency can be a burden on significant others.” Anger is a frequent and powerful adolescent reaction to death. The teen may have the urge to “punch someone out” or to destroy something. Initially, these outbursts will usually be understood by caring parents, who will respond with concern and understanding. But as time goes by and the angry outbursts continue, parents will grow tired of them and begin to demand cessation, perhaps even punishing the teen. Without realizing what is happening, this loss of understanding will cause the anger to become even more entrenched. Even if the teen begins exhibiting less anger and hostility, the relationship between adolescent and parent may become more strained and distant. Often this happens when the parent is also grieving and thus unable to see and understand what the adolescent is feeling. If the two cannot resolve the issue of grief, the parent-child relationship may suffer serious damage. Adolescents may also feel guilty. Citing examples from a number of studies, Byrne writes, “If
adolescents experience the loss of a sibling after a lengthy illness, they may feel guilty for resenting the sibling for receiving so much attention from the parents while going through the illness. Adolescents may feel guilty following the death of a classmate if they had been unkind to the classmate, or they may feel jealous if the classmate had received much attention due to illness.” These reactions to death may be expressed by smoking, drinking or taking drugs, sexual activity, skipping school, classroom disruption, or fighting. Others may become “hyperresponsible” and try to ease the family’s burden by taking the place of the missing parent or sibling. Still others will concentrate on trying to remain “normal” so as not to be different from friends—boys will struggle not to cry; girls will be careful to remain “nice” no matter how they feel. Although adult and adolescent grieving may appear to be similar, adult grief is generally a sustained period of intense sadness or anger. Adolescents experience those same feelings, but for briefer periods. However, the adolescent’s feelings may recur between periods of normal activities and even throughout their development. Adolescents may also experience more than one stage of grief at once. Kandt offers four reactions to be aware of regarding abnormal grieving in adolescents: 1. Chronic grief reactions Grief is prolonged, excessive in duration, and does not come to an appropriate conclusion. 2. Delayed grief reactions Grief reactions are inhibited, suppressed, or postponed. 3. Exaggerated grief reactions disabling.
Grief is excessive and
4. Masked grief reactions The adolescents experience difficult symptoms and behaviors, but they do not attribute these symptoms and behaviors to their loss. Helping the Grieving Adolescent According to Cunningham, the needs of the grieving adolescent have long been overlooked, with many grief recovery programs concentrating on support for younger children and adults. Some of the reason for this may be in the mixed messages often coming from the teens themselves. “They tell
10 adolescents and grief us that they need and expect our help in providing them with food and a nurturing environment but also tell us, on the other hand, that they can run their lives on their own. Because people do not always know how to respond to teens, they frequently back off, resulting in a teen who is left to grieve alone or with very limited support.” Part of the reason given for adolescents being left behind during grief assistance is the doublewhammy of death and adolescence. According to Kandt, society is not always comfortable with adolescents and the topic of death and grieving. When death and adolescence are combined, most people are not prepared to deal with these two topics. Similarly, according to Byrne, “After the death of an adolescent, society often focuses on the bereaved parents and not surviving adolescents. Funerals, social support, and discussions of death are usually geared toward the adults.” Grief counselors suggest that adolescents will heal if they are allowed to express their emotions and explore their feelings. Because they may pretend everything is okay, they likely will need to be told and shown that it is all right for them to grieve. Just as they are at a point when they are moving away from their families emotionally, facing the death of a loved one will be tugging at them to revert to more child-like dependence and support. So they need to be assured that they will not lose any of their hard-won independence if they do indeed accept—or even seek out—support from other adults in the family. According to Sidney Zisook, professor of psychiatry at the University of California, San Diego, sharing timely and accurate information about the family member’s illness or circumstances surrounding an accident is crucial to preventing adult depression. “Young people need to ask questions and have an adult answer and explain whatever they need to know. They should be given the opportunity to attend or even participate in the funeral. They need to be reassured about the continuing security within the family.” Hospice Foundation of America adds that adolescents need to make their own choices about attending funerals. “They should decide how they wish to participate in funerals or other services. Adults must provide information, options and support.”
Adolescents dealing with a loss can feel especially alone and unsupported during school holiday breaks, because they don’t have the usual network of teachers and classmates. Involving them in holiday plans, listening more attentively to them, and encouraging them to contact school friends may help them feel less lonely. When helping teens deal with feelings of anger, experts suggest encouraging them to release their physical energy by expressing their anger in ways that will not harm themselves or others. Cunningham suggests screaming into a pillow, pounding a mattress, ripping tissues out of a box until it is empty, or throwing ice cubes at a wall or nearby tree. Among the suggestions Cunningham offers for helping adolescents cope with the loss of a loved one are: encouraging them to talk about why the person was special to them, suggesting they write letters to the deceased as a way of saying goodbye, making a collage of words and pictures that remind them of the deceased, and generally listening whenever they appear ready to talk about any dreams or thoughts they are having about death in general and about the deceased in particular. In their study comparing suburban and urban adolescents’ experiences of grieving, Morin and Welsh write, “The most helpful coping strategy mentioned by the suburban adolescents was a reminder that time would help. Surprisingly, 36 percent of the urban youth responded that the most helpful comments were reminders to go to school and get an education. Perhaps this was related to the heightened level of violence experienced by the urban youth in this study. Education may be viewed as a means of escape from the violence in their lives.” Both groups of adolescents advised adults to talk and listen to youth who are coping with death and grief. Peers can be very important to grieving adolescents who can go to them for support without having to regress to what seems to them a childlike state when they get support from parents. Some bereavement counselors believe that all adolescents need a grief support group of peers within three to six months of their loss. According to Byrne, in addition to providing opportunity for grieving teens to “vent and discuss their fears and anxieties,” group support allows them to explore ways of coping, as well as to see that they are not alone in their grief.
advance care planning 11 Drawing from a number of family studies, Christ et al. offer several strategies health professionals and surviving parents can follow when helping adolescents deal with the death of a parent, among them: • Recognize the adolescent’s expressions of grief. • Educate the adolescent about the grief process. • Provide opportunities for grieving as well as for pleasurable remembrance of the parent. • Create enjoyable experiences with the family. • Support the adolescent’s participation in altruistic activities to combat feelings of helplessness. • Draw on support provided by the adolescent’s peer group and on services provided by schools, religious organizations, and agencies. What Doesn’t Help Adolescents Who Are Grieving In a Finnish self-report study, adolescents reported that fear of death, a sense of loneliness, and intrusive thoughts were factors that hindered their coping with grief. Some respondents felt that parents or friends were an additional burden on them. When adolescents feel that others are “watching” them, they often become self-conscious and embarrassed, so in order to not appear different from their peers, they will hide their grief. Morin and Welsh report the least helpful comments expressed to adolescents during grieving to be “It was their time” and “You’ll get over it,” for suburban teens; “I don’t care” and “Get out of my face,” for urban teens—an indicator, they said, of the environmental differences reported in their study. Another unhelpful comment often expressed to teens who are grieving a death involving a romantic relationship is that he or she is “too young to understand what love is.” Not only do such statements devalue the teen’s grief, they also show a total lack of understanding. “Adolescents Who Are Not Helped with Grief Suffer Depression as Adults.” Death Care Business Advisor 7, no. 10 (December 19, 2002). Byrne, Beverly. “Grief and the Adolescent.” Texas A&M University, July 3, 2002.
Christ, Grace H., Karolynn Siegel, and Adolph E. Christ. “Adolescent Grief: It Never Really Hit Me . . . Until It Actually Happened.” JAMA 288, no. 21 (December 4, 2002): 1269–1278. Cunningham, Linda. “Grief and the Adolescent,” TAG: Teen Age Grief Inc. Available online. URL: http:// www.thevine.net/~tag/grief.html. Downloaded March 3, 2003. Haber, Judith, et al. Comprehensive Psychiatric Nursing, Third Edition. New York: McGraw-Hill, 1987. Kandt, Victoria E. “Adolescent Bereavement: Turning a Fragile Time into Acceptance and Peace.” School Counselor 41, no. 3 (January 1994): 203–211. Morin, Suzanne M., and Lesley A. Welsh. “Adolescents’ Perceptions and Experiences of Death and Grieving.” Adolescence 31, no. 123 (Fall 1996): 585–595. Rask, K., M. Kaunonen, and M. Paunonen-Ilmonen. “Adolescent Coping with Grief after the Death of a Loved One.” International Journal of Nursing Practice 8, no. 3 (June 2002): 137–142.
advance care plan document
An advance directive form on which competent adults check off what level of care they would want in several medical end-of-life scenarios. On this legal form, people can specify the types of life support systems they do and do not want. Kahn gives this as a scenario: “For example, one man may say he will not tolerate being tube-fed when he can no longer keep food down in the normal way, while another will want nutrition provided but not assistance in breathing. This permits a physician to omit heroic treatment efforts without civil or criminal liability.” In Florida, PROJECT GRACE created an advance care plan document that conforms to Florida laws and is used by physicians and hospitals throughout the state. For the full document see Appendix I. See also ADVANCE DIRECTIVES. Kahn, Ada P. “coping with the death of a loved one,” in Stress A to Z. New York: Facts On File, 1998.
advance care planning
Making decisions about medical care is not always easy, especially now that machines can keep patients alive even when there is no hope for recovery. Everyone has the right to
12 advance directives participate in and plan for his or her own care. But at some point, a person may become unable to make those health care decisions. That’s why many medical and governmental groups advise people to think and talk about their feelings and beliefs with loved ones long before critical decisions must be made. By making personal and medical care decisions ahead of time, before physical injury or disease or mental deterioration prevents a patient from contributing to those decisions, substitute decisionmakers—both medical and family—are given the direction they need to later speak on behalf of the person who is incapable, and to accurately reflect that person’s wishes about medical, accommodation, and other personal care choices. Advance care planning helps seniors ensure that their wishes, not someone else’s, will guide decisions about their future care. As Aitken writes, “Advance care planning offers the patient the opportunity to have an ongoing dialog with his or her relatives and family physician regarding choices for care at the end of life. Ultimately, advance care planning is designed to clarify the patient’s questions, fears and values, and thus improve the patient’s well-being by reducing the frequency and magnitude of overtreatment and undertreatment as defined by the patient.” Many state and provincial governments, as well as various medical groups, in recent years have begun to offer information on advance care planning. For example, in 1992 the Foundation for Healthy Communities, founded by the New Hampshire Hospital Association, began offering The Advance Care Planning Guide. It is available for download at http://www.healthynh.com/downloads/ endoflife.pdf, or a hard copy of the guide in English, French, or Spanish is available for $1 per copy from Foundation for Healthy Communities, ACP Guide Request, 125 Airport Road, Concord, NH 03301. Braille or audio versions of the guide are also available. In Canada, the Ontario government in 1999 issued a Guide to Advance Care Planning to help seniors and persons with dementia in Ontario become more aware of the benefits of advance care planning and their rights in this area. Explaining its purpose, the introduction states that advance planning is “about giving someone you trust the information and authority to act on your wishes for
you.” The entire guide can be downloaded at http:// www.gov.on.ca/citizenship/seniors/english/advance care.htm or can be ordered by calling (in Canada) (888) 910–1999. Aitken, Jr., Paul V. “Incorporating Advance Care Planning into Family Practice.” American Family Physician 59, no. 3 (February 1999): 605–614.
advance directives A generic term for legally binding instructions to medical personnel as to what medical treatment a person wants or does not want to be undertaken in the event that person is unable to participate directly in medical decisions, such as when he or she is unconscious or mentally incapacitated. They are recognized in one form or another by legislative action in all 50 states and the District of Columbia. Advance directives cover such decision areas as blood transfusions, cardiopulmonary resuscitation (CPR), treatment withdrawal or prolonging, and organ donation. They may take several forms, the most common of which are LIVING WILLs, DURABLE POWER OF ATTORNEY, and DO-NOTRESUSCITATE ORDERS. Most often, advance directives are written, but oral instructions may be as legally binding in some states, especially where witnesses are present. Advance directives are not mandatory; they are the choice of the person involved. An advance directive does not take effect until the person who made it becomes incapacitated, and it may be changed at any time by the person who made it. If a person becomes unable to participate in medical decisions, and he or she has no advance directives, the doctor or other health provider will consult with family members, close friends, or a hospital physician, depending on state law. Under the PATIENT SELF-DETERMINATION ACT (PSDA) of 1991, any health care facility (hospital, skilled nursing facility, home health agency, hospice program, HMO) receiving Medicare or Medicaid funding from the federal government must ask each incoming patient (or the responsible family person) if the patient has already enabled any advance directives; if so, they must be documented in the patient’s record. If any provisions of the patient’s previously established advance directives violate the policies of the facility, the patient must be informed that some
advance directives 13 stipulations of the advance directives will not be honored. In addition, facilities must maintain written policies and procedures guaranteeing that every adult receiving medical care be given written information concerning advance directives. In a study to assess the prevalence of advance directives among nursing home residents before and after passage of the PSDA, Bradley et al. found that 35 percent of the residents in the post-PSDA group had an advance directive documented in the medical record, compared to 5 percent prior to implementation of the PSDA. Residents admitted to the nursing home from hospitals (vs. from their homes or other sources), residents with more education, and residents paying privately for nursing home care (vs. using Medicare or Medicaid benefits) were more likely to have documented advance directives. Residents less than 75 years old were less likely than older residents to have completed a directive. The most common reason given for completing an advance directive was experience with the prolonged death of a friend or family member. Most residents with advance directives had completed them more than six months before the nursing home admission. Yet experts say that despite passage of the PSDA, only 15 percent of people generally have actually completed advance directives. Not everyone is sold on advance directives as the best way to handle end-of-life decisions, however. Too often, some doctors and ethicists say, the instructions given in these directives appear too ambiguous or leave too much open to interpretation. Plus, in today’s medical world of increasingly more sophisticated technology, directives prepared even a few years ago do not cover the current range of possibilities. They warn that with the increasing complexity of end-of-life decisions, it may be better to designate a HEALTH CARE PROXY. Researchers have found that, even when completed, advance directives do not seem to have an impact on well-being, health status, medical costs, or clinical treatments to any significant degree. Others caution that expressing a person’s wish is one thing, but carrying it out can be a different matter. The success of a person’s advance directives depends foremost on talking about what a person wants, then finding someone who will honor those wishes. Some health care experts suggest that
choosing someone to help make end-of-life decisions is the most important thing to do first. A good choice is someone who shares the same values, and who could not benefit from the death. Although retaining a lawyer to draw up advance directives may be advisable, it is not required. Most states provide forms to follow, but using them is usually optional. Changes in language may be made to better meet the person’s needs. Computer legal software packages often include advance directive forms, but before using these one must be sure that any state requirements are met, especially in the area of witnessing signatures. Each state regulates the use of advance directives differently. Advance directives may be changed or canceled at any time, as long as the person is considered of sound mind to do so. Usually considered an “old people’s” document, and thus given attention only when a family member approaches advanced age, advance directives are equally important for the young. Health care workers suggest that anyone 18 or older consider writing his or her own advance directives because an accident or sudden illness can impair a young person as well. Sabatino writes, “The stakes are actually higher for younger persons in that, if tragedy strikes, they might be kept alive for decades in a condition they would not want.” Partnership for Caring provides free state-specific advance directive documents, for all 50 states and the District of Columbia, and instructions that can be opened as PDF (Portable Document Format) files, at http://www.partnershipforcaring.org/ Advance/documents_set.html. See also ADVANCE CARE PLAN DOCUMENT; ADVANCE CARE PLANNING; QUINLAN, KAREN ANN. Bradley, Elizabeth H., Terrie Wetle, Sarah M. Horwitz. “The Patient Self-Determination Act and Advance Directive Completion in Nursing Homes.” Archives of Family Medicine 7, no. 5 (September/October 1998): 417–423. Sabatino, Charles P. “10 Legal Myths about Advance Medical Directives.” ABA Commission on Legal Problems of the Elderly, American Bar Association, Washington, D.C. Available online. URL: http://pws.prserv.net/ yavapai/Hemlock/10%20Myths.html. Downloaded September 12, 2002. “Sample Advance Directive Form.” American Family Physician 59, no. 3 (February 1999): 617–620.
14 African Americans and death African Americans and death Culture helps shape our beliefs and thoughts about death and dying. From its roots in Africa and the Caribbean through injustices endured in America, black culture has greatly influenced attitudes and customs in the African-American community. Thomas studied medical literature in order to provide insight into how death, dying, grief, and loss are viewed by African Americans. Among her findings: African Americans with AIDS were less likely to communicate their end-of-life issues to their physicians than whites. African Americans underutilize hospice for a variety of structural reasons, including economics, lack of knowledge, and mistrust of the system; but also because they place more value on curative versus palliative care. A study by Reese et al. found that African Americans do not plan for death in the sense of advance directives and living wills. Rather, they tend to utilize home remedies before formal systems and believe that church and family, as opposed to formal providers, should provide service at the terminal stage. When caring for the terminally ill, they concentrate on living and prolonging life, rather than helping people die comfortably. Those participating in the study stated that many African Americans would rather pray for a miracle than accept terminality. They also explained that acceptance of terminality in this culture, while everyone around the patient is praying for a miracle, would be seen as a lack of faith. Finally, they reported a belief that God determines whether you live or die, not medical treatment or the lack of it. Because of such cultural beliefs, there can be a disconnect between health care agencies trying to help by offering the terminally ill nursing home assistance and hospice, and African-American families unwilling to even consider such care away from their homes. The Project on Death in America Newsletter reported in 2002 that African Americans use relatively few palliative and hospice services, even when they have full access. Thomas found limited studies concerning the role of culture and end-of-life issues, but did discover that “African Americans are less likely to agree to terminating life supports or donating organs because of a historical mistrust of health care systems. The Tuskegee experiment and other con-
crete examples of medical system abuse have made African Americans more likely to advocate for all means necessary to prolong life. Fear of giving others the power to take life-threatening actions is due in part to both historical and structural factors from slavery, Jim Crow laws, and continued feelings of powerlessness due to poverty and discrimination.” That this historical denial of access to health care and past abuses in medical research contribute to a general mistrust of the health care system was also suggested by the Project on Death in America as likely reasons for the under-usage of palliative and hospice services by African Americans. Investigators from the Albert Einstein Healthcare Network in Philadelphia echo these findings, reporting that only 8 percent of the African Americans in their study had a durable power of attorney (compared to 34 percent of white patients), and only 11 percent of the African Americans had a living will (compared to 41 percent of white patients). Also, more African-American than white patients desired the use of life-sustaining measures, such as cardiopulmonary resuscitation (CPR) and tube feeding. Other researchers have also reported that, as a group, blacks have been shown to prefer lifesaving interventions even when such therapies could be deemed physiologically or medically futile. Superstitions and Traditions Many of the African-American death-related traditions stem from their long history of spirituality. In fact, death is not considered the final act as it is in other cultures; it is more usually looked at as a mere passage from life on Earth to life in the hereafter. Crawley explains, “We speak of someone who has died as having ‘passed on,’ suggesting that their death was not their final state. It is a notion of the immortal soul carrying on its journey of life after death.” Adding to this, Ronald Barrett, an expert on African-American funerary practices, says the term “transition” is traditionally used by blacks to refer to the dying. “Only rarely would people say ‘the person died.’ Saying ‘the person transitioned’ means he or she has ‘gone to the next life’ and implies that the person has not left us; but simply changed form. They are no longer physically present, and they’ve spiritually ‘passed’ into the afterlife.”
African Americans and death 15 Along with this traditional “passing” is the belief that life is a circle. Barrett explains that the circle is commonly used in African art to represent the continuance of life. “It is a common belief among blacks today, regardless of where they are in the world, that when someone dies, a baby will be born.” But the journey from here to there is not to be without suffering, according to scholars. For many blacks, there’s almost an acceptance, if not a glorification of suffering as a good thing—of even being noble. Barrett describes discussions at funerals about how the deceased “fought the good fight, and fought without the assistance of pain medication, just whiteknuckled it. There is somewhat of a glorification of that as being somehow a better way to go than people who have been medicated and thereby have chosen a ‘softer’ way.” Some blacks consider the suffering necessary during the critical moment of transition. Among the superstitions and traditions related to this belief of passing into another world, is the placement of personal items in caskets to provide for the needs of the deceased in their journey; and in some families, coins are placed in the deceased’s hands, possibly as his or her contribution to the community of the ancestors, or as a token for admittance to the spirit world. Other traditional African-American beliefs include placing coins on or around the grave site, never placing the body directly on the ground, not burying the dead on a rainy day, and burying the dead with the feet facing east. Even though African Americans greatly miss and mourn the dead, the very fact that the deceased will be passing on to a better world makes the mourning process a contradiction of grieving and celebration. It is a time to rejoice because the deceased no longer has to endure the trials and tribulations of this earthly world. Thus, the mourning is a highly emotional event. Typically, families and friends travel great distances to attend the traditional wake and funeral. Great amounts of food are prepared by the family and by neighbors to offer the gathering mourners. Slave Burials Very few accounts of slave burials were included in southern histories. Of the few that have survived, most were recounted by freed slaves and a very few in plantation owners’ diaries. Slave burials were held
at night by torchlight so as not to stop work during the day. Michael Trinkley of South Carolina’s heritage preservation organization, Chicora Foundation, writes, “While owners seem to have had little interest in the burials of their slaves, the African Americans seem to have had even less interest in having whites present during this most solemn event. Burial provided an opportunity to provide dignity that was denied during life and African American beliefs held that the dead would be returning to Africa— and to a far better life.” Leading Causes of Death According to the National Center for Health Statistics (NCHS), in the year 2000, the 10 leading causes of death for non-Hispanic African Americans, all ages and both sexes, were: (1) heart disease, (2) cancer, (3) stroke-related disease, (4) accidents, (5) diabetes, (6) homicide, (7) HIV, (8) chronic low respiratory disease, (9) kidney disease, (10) influenza and pneumonia. For a table of the 10 leading causes of death by various population groups, see Appendix III. During the eight-year period between 1990 and 1998, there was a decline in the rate of heart-disease death, the nation’s number one killer, of 11 percent for African Americans. The U.S. Centers for Disease Control reported that through December 1998, 108,874 AfricanAmerican males and 32,733 African-American females died of AIDS-related causes. According to the National Women’s Health Information Center, the four leading causes of death among African American women are, in order of prevalence, heart disease; cancer; cerebrovascular disease, including stroke; and diabetes. These women have higher mortality rates from a number of diseases—including heart disease, stroke, and most cancers—than Caucasian women. Several health disparity studies have reported higher death rates for African Americans: • African Americans have a higher age-adjusted death rate for all of the 15 leading causes of death except for suicide and emphysema. • Cancer death rates are 144 percent higher for African-American males than white males and 123 percent higher for African-American females than white females.
16 after-death communication • Breast cancer age-adjusted death rates are 26.2 per 100,000 for African-American women compared to 19.3 per 100,000 for white women. Between 1999 and 2000 life expectancy increased for both males and females in the black population, increasing by 0.4 years for black males (from 67.8 to 68.2) and by 0.2 years for black females (from 74.7 to 74.9). Barrett, Ronald K., and Karen S. Heller. “Death and Dying in the Black Experience.” Journal of Palliative Medicine 5, no. 5 (October 2002): 793–799. Crawley, LaVera M. “Palliative Care in African-American Communities.” Journal of Palliative Medicine 5, no. 5 (October 2002): 775–779. Phipps, E., et al. “Approaching the End of Life: Attitudes, Preferences, and Behaviors of African-American and White Patients and Their Family Caregivers.” Journal of Clinical Oncology 21, no. 3 (February 1, 2003): 549–554. Reese, D. J., et al. “Hospice Access and Use by African Americans: Addressing Cultural and Institutional Barriers through Participatory Action Research.” Social Work 44, no. 6 (November 1999): 549–559. Thomas, Norma D. “The Importance of Culture Throughout All of Life and Beyond.” Holistic Nursing Practice 15, no. 2 (January 2001): 40–46.
after-death communication (ADC)
The term coined by researchers Bill and Judy Guggenheim to describe a spiritual experience that occurs when someone is contacted directly and spontaneously by a deceased relative or friend, without the use of psychics, mediums, hypnotists, or devices. Those who have experienced ADCs argue that they offer dramatic evidence of life after death. As many as two in five Americans have had one or more afterdeath communication experiences, according to some estimates. In other parts of the world the percentage is even higher. In 1988 the Guggenheims began interviewing people throughout the United States and Canada about their ADC experiences, and in the process collected more than 3,300 firsthand accounts from people who believed they had been contacted by a loved one who had died. From their research, they list 12 most frequent forms of contact by the
deceased: (1) sensing or feeling that someone is nearby; (2) hearing a voice, usually by telepathy; (3) feeling the deceased’s touch, either via a hand or a hug; (4) smelling the deceased’s favorite fragrance; (5) seeing the deceased, either partially, such as head and shoulders, or the entire body; (6) seeing a vision of the deceased in a “picture”; (7) “twilight” emergences while drifting off to sleep or upon awakening or while praying; (8) while sleeping, but more real than dreams; (9) out-of-body experience while asleep or meditating; (10) telephone calls, sometimes while asleep; (11) physical signs, such as lamps blinking on or off, televisions or stereos being turned on, pictures moved; and (12) symbols, when asking a Higher Power or the deceased loved one for a sign that he or she still exists. Such symbols may occur in nature or inanimate objects. The After Death Communication Research Foundation, which tracks ADC experiences on its www.adcrf.org Web site, says that 19 percent of the ADC occurrences reported to them occurred within 24 hours of the deaths, with 76 percent of these occurrences between blood relatives and only 14 percent between significant others. According to LaGrand, after-death communication is not new; The Roman philosopher Cicero (B.C.E. 106–43) wrote essays on ADC called “On Divination.” And the English scholar Robert Burton (1577–1640) described ADC incidences during his lifetime. But not everyone believes such after-death communicating is actually the deceased making contact. Skeptics credit supposed ADCs as more likely to be twilight-state illusions, exaggeration, fabrication, false memory, magical thinking, or an escape from the true reality of the finality of death. Devers, E., and K. M. Robinson. “The Making of a Grounded Theory: After Death Communication.” Death Studies 26, no. 3 (April 2002): 241–253. Guggenheim, Bill, and Judy Guggenheim. Hello from Heaven! New York: Bantam Books, 1999. LaGrand, Louis. After-Death Communication: Final Farewells. St. Paul, Minn.: Llewellyn Publications, 1997. ———. Messages and Miracles: Extraordinary Experiences of the Bereaved. St. Paul, Minn.: Llewellyn Publications, 1999. Martin, Joel, and Patricia Romanowski. Love beyond Life: The Healing Power of After-Death Communications. New York: Bantam Books, 1998.
afterlife 17 afterlife A life or existence believed to follow death. Results from numerous surveys have shown that as many as 82 percent of Americans believe in an afterlife. In fact, the number has grown in recent years, according to 15 different surveys conducted between 1973 and 1994, which showed that, over the century, belief in an afterlife among Catholics has grown from 65 percent to 84 percent; among Jews, the number has risen from 22 percent to 40 percent; while among those with no religious affiliation the number has increased from 31 percent to 50 percent. In those religions and cultures where the belief in an afterlife is strong, acceptance of death can be easier on the bereaved. For example, even though Hindus and Buddhists feel the loss of their loved one or friend, they are confident in the dying person’s afterlife. They believe that a person is continuously reborn to a new life until the person’s spirit reaches the point of enlightenment and all knowing. Many Christians accept that there is an afterlife to their present existence, and Christian religions teach hope for the afterlife. It is based on the belief that there is one lifetime and that after death the good shall exist with God forever. The afterlife plays an especially important role for African Americans, according to Barrett: The belief in an afterlife is a common and fundamental aspect of death and dying in the black experience. But they also believe that the dead are not in a distant heaven, but rather still among us. Blacks generally believe that in times of crisis or need, and sometimes in times of joy, departed loved ones are smiling down on us, looking out for us, and assisting us. Thus, even though it is stressful to have a loved one die, people find comfort in the belief that loved ones who may not be physically present are spiritually present.
But Kahn looks at how belief in an afterlife can have negative results: “The promise of reward in the afterlife has inspired and comforted many, but has also been held responsible for making believers passive or accepting of hardships and inequities, which they could overcome through their own efforts, because they hope for a better life in the beyond.” Strong belief in an afterlife can also have tragic results, as experts noted on a 2002 National Public
Radio Show about the afterlife and paradise. “The promise of an afterlife in paradise has apparently helped to motivate many Palestinian suicide bombers and at least some of the hijackers on the planes that hit the World Trade Center. Mohamed Atta, the leader of the hijackers, left this message for some of his fellow terrorists: ‘You will be entering paradise. You will be entering the happiest life.’ In terrorist training camps, those recruited for suicide duty are often told that in the afterlife, virgins will be awaiting them.” Although there is no reliable, empirical, scientific evidence for the afterlife, the belief endures. Why? Canadian secular humanist Derek Watters answers, “Because it satisfies two emotional needs, and provides plenty of leverage for religious authorities. The Egyptian pharaohs typify one emotional need— that of immature selfishness; i.e. ‘One life is just not good enough for me; I want and deserve more.’ A more charitable use of the belief is to console those in grief. Thinking that a deceased loved one has simply gone to a better place may alleviate one’s grief. To a believer, religious authorities are the gatekeepers to the afterlife. Clerics use this power to manipulate the behavior of their followers.” But University of Arkansas psychologist Jesse Bering suggests that while afterlife beliefs may be culturally driven in their variety and nature, their origin lies in our unique biology. He explains that human beings represent the only species to have developed a “theory of mind”—the comprehension that, not only oneself, but also other individuals have mental and emotional states that drive their behavior. This ability to think about the consciousness of other people enables human beings to engage in complex social interactions. But almost as a side effect, theory of mind also enables people to consider the consequences of death, not only for themselves and other survivors but also for the individual who died. “Because human beings can think about the consciousness of others, they inevitably come to question whether consciousness persists after death.” Holliday looks at belief in an afterlife as a natural part of the evolution of man: During the evolution of hominids, the population could be sustained even with an expectation of life
18 afterlife at birth of less than 20 years. Under these circumstances very few individuals reached old age. In these hunter-gatherer communities, altruistic behavior was encouraged because it increased the likelihood of survival, whereas self-interest did not. An early moral code benefitted the community as a whole. As social evolution progressed, the chances of survival increased, and for the first time very elderly individuals appeared. However, the reward for survival to old age was merely decrepitude and death. Under these circumstances, new incentives became a social necessity, and these took the form of a belief in an eternal afterlife. Religion then became the basis for the moral code, and it provided an assurance of continual survival after death.
Belief in an afterlife is certainly not new; it has existed throughout the ages. Ancient Egyptians’ belief in rebirth after death became the driving force behind their funeral practices. The Egyptians believed that death was simply a temporary interruption, rather than a complete cessation, of life, and that eternal life could be ensured by means like piety to the gods, preservation of the physical form through mummification, and the provision of statuary and other funerary equipment. Egyptian pharaohs ordered huge pyramids built to guard their valuables and mummified bodies on their trip to the afterlife. Lewis says, “The whole idea of afterlife judgment may well have been pioneered by the Egyptians.” The ancient Slavs of the Ukraine believed in an afterlife and that the human soul was eternal. It was the community’s duty to help the deceased live comfortably in the next world and attain paradise as quickly as possible. The dead were cremated, buried, or laid on top of the ground and covered by mounds. Cremation was popular in some regions because of the belief that fire purified and the deceased went straight to heaven. Zoroastrianism, founded in ancient Persia around 1000 B.C.E., teaches that for three days after death the soul remains at the head of its former body. All of the individual’s good and bad deeds are entered in a sort of accountant’s ledger, recording evil actions as debits and good actions as credits. The soul then embarks on a journey to judgment.
Lewis writes that according to the Greek philosopher Plato: The soul is supposed to journey to a place where there are two openings into the Earth and two into the sky. Judges sit in the middle and send the good souls up one of the upper openings and the evil souls down one of the lower ones. There, the souls are either rewarded or punished tenfold for one thousand years. After that time the souls come down or up the other openings and meet together in a meadow to swap experiences. The worst souls do not emerge, but are thrown forever into Tartarus. The rest, after seven days, travel to a place where the Fates, the Sirens, and all manner of powers orchestrate the move into the next life. Each soul makes a free choice of the kind of life to be born into. Souls that have been enjoying themselves for the last thousand years tend to be innocent and unwary and can choose themselves into trouble by becoming a tyrant. Souls that have been punished for the last thousand years are more careful and may choose to be an animal.
Also, in Homer, there’s a reference to the Elysian plain, a sort of fabled area at the edge of the world where people could go after they die. Most traditional Native Americans believed in some sort of survival after death, although the specific interpretation of the afterlife differed among tribes and locations. For some it followed the white man’s stereotypical “happy hunting ground.” For others, it was more like a gloomy Hades. And for still others, such as the Eskimos, it took the form of reincarnation. Judaism does believe in an afterlife, but it is not the primary focus of the religion and there is a lot of room for personal opinion about the nature of the afterlife, according to Rich: Traditional Judaism firmly believes that death is not the end of human existence. However, because Judaism is primarily focused on life here and now rather than on the afterlife, Judaism does not have much dogma about the afterlife, and leaves a great deal of room for personal opinion. It is possible for an Orthodox Jew to believe that the souls of the righteous dead go to a place similar to the Christian heaven, or that they are reincarnated through
air tray 19 many lifetimes, or that they simply wait until the coming of the messiah, when they will be resurrected. Likewise, Orthodox Jews can believe that the souls of the wicked are tormented by demons of their own creation, or that wicked souls are simply destroyed at death, ceasing to exist.
The notions of resurrection, heaven, and hell have been part of Islam since the time of Mohammed. Both the Koran (Islamic scriptures) and the Hadith (the sayings of the Prophet Mohammed) refer to the afterlife. In a poll of nearly 6,000 readers, Omni magazine found broad agreement on the basic tenet that the afterlife is a place of light, joy, and bliss. “Geography, income level, religious education, and current religious belief were not strong determining factors for disagreement; differences in age and sex, however, were. The older the person, the less optimistic he or she was about the hereafter. Older people are more likely to believe that the afterdeath is not blissful, and that there is no communication between the afterdeath traveler and the still-living. Women are more likely to believe that the afterdeath is flexible, not rigid, and to believe in reincarnation. Men are more likely to be persuaded of the existence of life after death through technological evidence, and are also more likely to feel that they will be emotionally alone in the afterdeath.” Barrett, Ronald K., and Karen S. Heller. “Death and Dying in the Black Experience.” Journal of Palliative Medicine 5, no. 5 (October 2002): 793–799. Bering, Jesse M., and David F. Bjorklund. “Intuitive Conceptions of Dead Agents’ Minds: The Natural Foundations of Afterlife Beliefs as Phenomenological Boundary.” The Journal of Cognition and Culture 2 (November 2002). Holliday, R. “Human Aging and the Origins of Religion.” Biogerontology 2, no. 1 (2001): 73–77. Kahn, Ada P. “religion,” in Stress A to Z. New York: Facts On File, 1998. Lewis, James R. Encyclopedia of Afterlife Beliefs and Phenomena. Farmington Hills, Mich.: Gale Group, 1994. Menagh, Melanie. “Beyond Death and Dying.” Omni 17, no. 9 (September 1995): 62–67. Raphael, Simcha Paull. Jewish Views of the Afterlife. Northvale, N.J.: Jason Aronson, 2002.
Rich, Tracey R. “Olam Ha-Ba: The Afterlife,” Judaism 101. Available Online. URL: http://www.jewfaq.org/ olamhaba.htm. Downloaded on March 26, 2003. Rogers, Alla. “Sworn in Soil: Ukraine’s Living Folk Traditions.” The World & I, April 1, 1995. San Filippo, R. David. “Acceptance of Death.” Orlando, Fla.: Lutz-San Filippo. Available online. URL: http://www.lutzsanfilippo.com/library/lsfacceptancedeath.html. Downloaded March 25, 2003. Watter, Derek. “Accepting Heaven as a Myth Can Be a Blessing.” The Hamilton Spectator, March 9, 2002.
air tray Term applied to the container used to ship a body via air to another location. An air tray may hold the body alone, or the casket and body. An air tray is less costly than shipping the body in a coffin because coffins are heavy and airlines charge by the pound. A typical air tray for casketed remains could have a 1 inch by 4 inch pine frame with a one-piece .375 inch plywood base, eight 2-inch-wide belt strap handles, and securing straps with removable buckles. It would be unfinished and unlined fiberboard. Air trays can be custom built, but also come in the following sizes: Adult, Oversized, Youth, Child, Infant, and Cherub. A typical charge by a funeral home for an air tray is $175 to $200, although it can range from $75 to $600; the wholesale cost is usually $50 to $75. Airlines usually provide air trays for sale to customers, or customers may provide their own as long as the construction of the container meets the airline and ATA (Air Transportation Association) specifications. US Airways, for example, offers air trays for the shipping of caskets for $65 each. Taxes may or may not have to be paid on air trays. For example, South Dakota’s Sales Tax Fact Sheet says, “Airline air trays are not considered shipping cartons and are subject to the sales tax. If the cost of the air tray is charged to the customer, sales tax must be paid. If the air tray is kept by the receiving funeral home, then use tax must be paid by the funeral home on their cost if sales tax was not previously paid.” The cardboard or plywood container used for placing a body into a cremation chamber is also sometimes referred to as an air tray.
20 Alaska Natives and death Alaska Natives and death The term Alaska Native, referring to Alaska’s original inhabitants, is used to describe people of Athabascan, Tsimpsian, Tlingit, Haida, Eskimo, and Aleut descent, all of whom differ from each other in ethnic origin, language, and culture. Thus, their funeral customs and handling of death have differed over time. When early explorers first encountered native Eskimo villages, they were shocked at how little regard Eskimos appeared to have for human life. Infanticide, for example, was common. Knud Rasmussen, one of the most famous early explorers, reported that he met one woman who had borne 20 children but had killed 10 of them at birth. Female babies, he found, were especially liable to be destroyed, and this was permitted simply at the parents’ discretion, with no social stigma attached to it. Old people also, when they became too feeble to contribute to the family, were left out in the snow to die. So there seemed to be, in this society, remarkably little respect for life. According to a 1911 encyclopedia entry, some Eskimos left a dead man’s body in his house, and shut it up, often leaving by his side a dog’s head to guide him on his last journey, along with his tools and kayak. Stefansson described a variety of burial and mourning customs he encountered among the Eskimos. One example: When a man died during the fore or middle part of the day, while yet there was daylight enough for the funeral, he was put away that day; if too late, the body remained till morning. People slept in the house with the dead if the body could not be moved before night. The body was completely covered with the dead man’s own sleeping clothes while others slept. When the body was carried out all sleeping clothes and cooking gear was carried out just after the body and laid for a few minutes on the snow or on top the roof of the alleyway. Only a few followed to the grave; the dead person’s husband or wife sometimes followed, sometimes sat in the middle of the house floor with hood up. They often wept, but only from real grief. The body was usually dressed in new clothes, with new mittens on hands. A knife was sometimes placed in the man’s hand; the food utensils and special cooking
pot used during the last illness and other articles such as a man traveling might need, were placed outside the grave. The chief mourner did not go out of the house for five days, sat most or all the time on the middle of the house floor, never lowered his or her hood, and ate separately from the rest of the people. There was no singing, drumming, hammering, or other loud noise. At the end of the five days, the chief mourner took off all clothes, and put on new and the old ones were carried out on the sea ice and thrown away.
Earth burial was common among the Eskimos, but cave burial took place among the Aleut. A member of the Billings Expedition to Alaska in 1802 speaks of the Aleutian Islanders embalming their dead: They embalm the bodies of the men with dried moss and grass; bury them in their best attire, in a sitting posture, in a strong box, with their darts and instruments; and decorate the tomb with various colored mats, embroidery, and paintings. With women, indeed, they use less ceremony. A mother will keep a dead child thus embalmed in their hut for some months, constantly wiping it dry; and they bury it when it begins to smell, or when they get reconciled to parting with it.
Other early explorers wrote of finding mummified remains of whole families in caves of the Aleuts. Yet entirely different customs were found among other Alaska Natives. Miller writes of the Tlingit nation of southeastern Alaska and northwestern Canada: “At death, the opposite moiety (matrilineal kinship divisions known as Crow or Wolf clans) took care of the body, wake, and cremation, while the mourners gave full expression to their grief in dirges. Burning the body released the soul to leave the town through the cemetery and forest before climbing a mountain to go to ‘the other side’.” Today’s funeral rituals differ from the past, as described in “The Funeral Potlatch of the Tlingit Indians”: As European missionaries started placing pressure on the Natives to change their ways and customs, the process of dealing with a deceased person changed. Traditionally, the body of a deceased per-
algor mortis 21 son would be cremated at the exact location of death, convenient because the Tlingits were continually moving. However, as trading communities became established, the Natives began changing from a transient to a settled lifestyle. As well, missionaries outlawed cremation and the Tlingits complied by burying the dead, thus employing a casket, like in Western cemeteries. Gradually, Spirit Houses were outlawed and replaced by Christian headstones. As Christianity became the dominating religion, a priest or minister often replaced the role of the Hasha Da Hani, altering the social structure of the Tlingits. Also, when a person passed away, special objects were placed beside the body to aid the spirit in the Spirit World. It was taboo for anyone to touch these sacred objects. However, the Tlingits were forced to change their custom to compensate for non-native people’s lack of understanding and respect for funeral rituals as European people continued to steal these precious objects.
See also AMERICAN INDIAN/ALASKA NATIVE NATIVE AMERICAN GRAVE PROTECTION REPATRIATION ACT.
DEATH,
AND AND
Lester B. Pearson College of the Pacific. “The Funeral Potlatch of the Tlingit Indians: The Funeral Potlatch Seen as a Revitalization Movement,” Lester B. Pearson College of the Pacific. Available online. URL: http:// www.uwc.ca/SOCANT/HanaOnLine.htm. Downloaded on March 26, 2003. Miller, Jay. “Alaskan Tlingit and Tsimshian.” University of Washington Digital Libraries. Available online. URL: http://content.lib.washington.edu/aipnw/miller1/ miller1.html. Downloaded on March 27, 2003. Stefansson, Vilhjalmur. My Life with the Eskimo. New York: Macmillan, 1913.
Albom, Mitch (1958– ) Author of Tuesdays With Morrie, the heartwarming story of Albom’s relationship with his college mentor, Morrie Schwartz, who spent the last five months of his life visiting with Albom every Tuesday, even as the old man was dying slowly from Lou Gehrig’s disease. The results of those visits comprise what Albom has called “an old man talking to a young man about the meaning of life.” The book was a phenomenal New York Times
bestseller, first appearing on that list in October 1997 and staying atop the list for four straight years. Oprah Winfrey produced a major television movie for ABC based on Tuesdays With Morrie that aired in December 1999 and starred Jack Lemmon and Hank Azaria. A phenomenon in its own right, the movie was not only the most-watched on any network for that year, it also earned four Emmy Awards in 2000, including those for best actor (Lemmon) and best supporting actor (Azaria).
algor mortis
The cooling of the body that follows death. Also called death chill. After the heart stops beating, the body temperature (normally 98.6°F) begins to fall at a rate of about 1.5°F per hour until it reaches ambient (surrounding) temperature; often this is “room” temperature or about 70°F, although it can be the temperature of surrounding water or dirt. Algor mortis is one several factors used by pathologists to determine the moment when a person died, and some consider it the most useful single indicator during the first 24 hours following death. Under “normal” conditions and when the body cools at a uniform rate, the rate of temperature decrease can indeed be an accurate determinant of the time of death. A rule-of-thumb formula that some forensic personnel follow is: 98.6°F rectal temperature divided by 1.5 = approximate number of hours since death. However, a person’s body temperature is not always 98.6°F—it can reasonably fall within a narrow range of 96.7°F and 99°F—plus in individual cases, the body temperature at time of death may be lower or higher than the normal range. For example, the body temperature at death may be lower than normal due to hypothermia, shock, or congestive heart failure; and above the normal range due to heat stroke, strychnine poisoning, and some infections. Also, several factors can affect the “normal” 1.5° drop per hour: physical activity of the person immediately preceding death, illness, size of the body, clothing or coverings that might have insulated the body, movement and humidity of the surrounding air, drugs in the body, and other factors. Several individuals who have studied the effects of body cooling suggest that the rate of cooling is not
22 All Hallows’ Day/All Hallows’ Eve constant, but rather more heat is lost during the first few hours; then, as the body begins to reach ambient temperature, the rate of heat loss slows. The use of body temperature estimations to gauge time of death applies only to temperate climates. In tropical climates, the drop in body temperature after death may be too minimal for this purpose. In some extreme climates, such as central Australia, the body temperature may even rise after death. See also LIVOR MORTIS; RIGOR MORTIS.
All Hallows’ Day/All Hallows’ Eve In 835, Pope Gregory IV moved the celebration for all martyrs (later, all saints)—All Hallows’ Day—from May 13 to November 1 in order to displace the pagan Druidic festival of fire that honored Samhain, their lord of the dead. The church hoped that this holiday would do away with the Vigil of Samhain and the other ceremonies and celebrations held October 31 through November 1 (the Celtic New Year). The night before All Hallows’ Day became known as All Hallows’ Even or “holy evening.” Eventually, the name was shortened to the current Hallowe’en, or more commonly Halloween. See also ALL SAINTS’ DAY.
All Saints’ Day
November 1—a day incorporated into the early Christian calendar because the year was not long enough to dedicate a day to each saint of the Catholic Church. Some accounts say it was especially instituted to honor saints who had died without their sanctity being recognized. The day was originally referred to as All Hallows’ Day, Hallowmas, Hallowmass, or Allhallowmass—meaning sanctified or saintly; thus, the holy day has come to be known as All Saints’ Day.
lows’ Eve and All Hallows’ Day a more appropriate direction. The converted Celtics continued to be fascinated by their inherited beliefs of the familiar dead returning to the world of the living during these days, and it created quite a bit of unease in the church. By establishing a day to honor all dead, the church hoped to satisfy the people’s interest in death and the supernatural. In today’s celebration of All Souls’ Day, the Mass of the day is a Requiem, and the clergy recite the Office of the Dead. In some Catholic countries, it is customary to leave lights in the cemeteries on the night before All Souls’ Day. See also DAY OF THE DEAD.
alternative container A body container; sometimes called a minimum container. According to the Federal Trade Commission’s FUNERAL RULE, an alternative container must be an unfinished wooden box or other non-metal receptacle or enclosure, without ornamentation or a fixed interior lining, which is designed for the encasement of human remains and which is made of fiberboard, pressedwood, composition materials (with or without an outside covering), or like materials. Alternative containers are generally lower in cost than caskets. Funeral homes offering direct cremations must make an alternative container available and inform consumers that such containers are available for direct cremations. The Funeral Rule also prohibits crematories from requiring that a casket be purchased for direct cremation. However, the rule allows crematories to set standards for the kind of alternative containers that they will accept. For example, a crematory might stipulate that it will accept only rigid containers.
alternative funerals All Souls’ Day November 2 (or November 3 if the second is on a Sunday)—a day set aside in the 10th century by the Catholic Church to recognize and pray for the souls of all the faithful departed still suffering in purgatory. According to scholars, the real reason for establishing All Souls’ Day was to give the pagan traditions persistently clinging to All Hal-
Until recently, most Americans followed similar customs and rituals when planning and selecting the funerals and final resting places of their loved ones. Typically, a clergyman officiated, using traditional prayers and music, and a funeral home embalmed the body, placed it in a coffin, and buried it in the ground. Today, however, it is not uncommon for the deceased to preplan “different” arrangements from the traditional services,
American Hospice Foundation 23 or for the families to make the service more reflective of the deceased’s personality and interests while alive. Alternative funeral services permit families to design the service to exactly match their circumstances. Services may range from cremation to cryogenics to mummification. They may mix and match rituals from several cultures and religions. They may include rock music or poetry readings—even pagan rituals. They may be GREEN BURIALS or sea burials. Alternative arrangements have evolved along with the growing acceptance in society of alternative lifestyles and changing family structures, and they parallel the aging of the “flower child” generation. Some sociologists say the trend is at least partially due to the traumatic events of recent years, from school shootings to terrorism, which have forced Americans to confront death more intimately. Others say that after spending most of their lives challenging authority and conformity, aging baby-boomers see their last moments as a final act of self-expression and rebellion. In addition to the yearning for selfexpression and the newfound concerns about death, the prohibitive cost of traditional services has added impetus to the growth in alternative funerals. Whereas a traditional coffin and service might run many thousands of dollars, and even a cremation cuts that only to several thousand, a more simple, alternative “home” service can cut the costs even further. Even though alternative funerals are becoming more popular, they are still sometimes difficult to obtain. Often traditional funeral directors and religious authorities are resistant to these changes. But a burgeoning alternative funeral industry is slowly gaining ground, as new companies emerge specifically for offering customized funerals, and as some traditional companies add alternative services to their offerings. Langton, James. “Children of ’60s Get the Last Word: Alternative Funeral Trend Growing.” The Washington Times, March 20, 2000.
American Academy of Hospice and Palliative Medicine (AAHPM) Originally organized as the Academy of Hospice Physicians in 1988, the American Academy of Hospice and Palliative Medicine
(AAHPM) is an organization of physicians and other medical professionals dedicated to the advancement of hospice/palliative medicine, its practice, research, and education. The mission of AAHPM is the prevention and relief of suffering among patients and families by providing education and clinical practice standards, fostering research, facilitating personal and professional development of its members, and by public policy advocacy. Members receive the AAHPM Bulletin, a quarterly publication. Contact information: American Academy of Hospice and Palliative Medicine 4700 West Lake Ave. Glenview, IL 60025–1485 (847) 375–4712 (877) 734–8671 (fax) http://www.aahpm.org e-mail:
[email protected] American Academy of Hospice Physicians (AAHP) See AMERICAN ACADEMY OF HOSPICE AND PALLIATIVE MEDICINE.
American Hospice Foundation A charitable nonprofit corporation, the American Hospice Foundation was established in 1993 to raise awareness about the needs of dying and grieving Americans. Since then, the foundation has conducted outreach campaigns in schools, in the workplace, and among health insurers. The foundation’s primary goal is to increase access to hospice by making Americans aware of hospice availability, affordability, and philosophy. To this end, the foundation conducts a variety of education programs in collaboration with local community organizations and national associations of professionals who can carry the hospice message to their constituents. Contact information: American Hospice Foundation 2120 L Street NW Suite 200 Washington, DC 20037 (202) 223–0204 (202) 223–0208 (fax) http://www.americanhospice.org e-mail:
[email protected] 24 American Indian/Alaska Native (AI/AN) and death American Indian/Alaska Native (AI/AN) and death For statistical purposes, the U.S. government and various health agencies group Native Americans and Alaska Natives into one population segment they call American Indian/Alaska Native (AI/AN). AI/ANs are constituted as 556 federally recognized tribes. Each tribe belongs to one of seven nations (such as the Navajo or Iroquois); 226 of these tribes are in Alaska, while the others are in 34 states in the continental United States. Nearly 300 reservations in the lower 48 states and approximately 500 government units in Alaska serve as homes to the tribes. But not everyone believes this grouping is such a good idea. For example, McCabe writes that such “lumping” into one population group can lead to wrong assumptions and inaccurate data: It is critical to recognize the heterogeneity between and within the 500 to 600 tribal groups, which is manifested in the epidemiology of disease and the cultural values and beliefs of each group. For example, while the overall leading causes of death among AI/ANs are diseases of the heart, in the Alaska, Navajo and Albuquerque areas they are accidents and adverse effects (Indian Health Service [IHS], 1998–1999). One must avoid the tendency to generalize . . . findings, discussion and recommendations to all tribal groups and villages.
Smith et al. echo this: “The overall rates of injury are misleading because considerable variation exists among tribes. For example, firearm-related death rates vary six-fold, fire- and burn-related death rates seven-fold, and drownings 22-fold among IHS service areas. Each tribe is unique in its culture, history, language, and sociopolitical circumstances.” Another problem when accumulating AI/AN death statistics is misidentification. Several studies, including one from the IHS, have found that the race of AI/ANs is identified (coded) inconsistently on state death certificates. Staff from hospitals and funeral homes have a tendency to use “personal observation” plus the deceased’s last name rather than definitions of race used by the IHS. According to the IHS study, Texas is ranked at the top for miscoding at a rate of 47.1 percent, followed by Arkansas (43.6 percent) and Oklahoma (26.3
percent). Other highly AI/AN populated states were at 4.3 percent (Alaska), 2.5 percent (New Mexico), and the lowest was South Dakota at 1.9 percent. Mistakes are less likely to be made if an Indian died within his or her reservation boundaries or in an IHS facility. The Centers for Disease Control and Prevention (CDC) publication on health statistics shows the racial misclassifications among American Indians, overall, is 22 percent. Such miscoding can affect research funding, which is based on morbidity statistics skewed by race. The Indian Health Service provides health care services to about 60 percent of American Indian and Alaska Native populations. About three-fifths of the Native American population live off the reservation, and it is estimated that one-half now live in urban areas. In its relatively short history, the Indian Health Service has contributed to tremendous improvements in the health status of American Indians and Alaska Natives. Since 1973 infant mortality has decreased by 58 percent, maternal mortality by 68 percent, pneumonia and influenza mortality by 52 percent, tuberculosis mortality by 79 percent, and gastrointestinal mortality by 76 percent. However, although significant gains have been made, the health status of American Indians and Alaska Natives is not equal to that of the U.S. general population. Poor nutrition, coupled with unsafe water supplies and inadequate waste disposal facilities, has resulted in a greater incidence of illness in the Indian population. Many reservations and Indian communities are located in isolated areas where impassable roads and a population spread over many miles create additional challenges to the IHS commitment to provide quality health care. Thomas writes that “American Indians/Native Americans rely on the extended family system, especially for tribal groups who still live on reservations. They treat the issue of death and dying in a way similar to other American ethnocultural groups; that is, to speak about death may cause it to happen. Therefore, issues like ADVANCE DIRECTIVES often are not discussed.” Leading Causes of Death According to the 1990 Department of Health and Human Services report Healthy People 2000, the six major causes of early death for American Indians
American Indian/Alaska Native (AI/AN) and death 25 and Alaska Natives are unintentional injuries, cirrhosis, homicide, suicide, pneumonia, and complications of diabetes. Alcohol and obesity are major risk factors for the American Indian population. Alcohol contributes to high rates of motor vehicle crashes, cirrhosis, suicide, homicide, domestic abuse, and fetal alcohol syndrome. The increase in obesity among American Indians, resulting partly from the adoption of a Western diet, has paralleled the increase in diabetes, which is 230 percent higher than in the general population. Obesity is also linked to high blood pressure and stroke, coronary heart disease, and some types of cancer. The Indian Health Service, as well as state and local health departments, is working with Native American communities to develop programs that will meet these health challenges. By recognizing and incorporating American Indian and Alaska Native traditions, culture, and values into community health care programs, health care providers are becoming more effective in meeting the needs of this very diverse minority. According to the IHS, the top-five leading causes of death among AI/ANs between the ages of 55 and 64 are diseases of the heart, malignant neoplasms, cerebrovascular diseases, diabetes mellitus, and pneumonia and influenza. Motor vehicle injuries are the leading cause of death among American Indians and Alaska Natives ages one to 44, according to the CDC (1998), with Native Americans dying in motor vehicle accidents two to three times more than other Americans. During the eight-year period between 1990 and 1998, there was a decline in the rate of heart-disease death, the nation’s number one killer, of 8 percent for AI/ANs. CDC reports show that through December 1998, 877 American Indian/Alaska Native males and 158 American Indians/Alaska Native females had died of AIDS-related causes. In 1997 American Indians/Alaska Natives ages 15 to 19 (of both sexes) had the highest suicide mortality among all racial and ethnic groups, at 20.5 deaths per 100,000 population. The suicide rate for American Indian/Alaska Native youths is more than twice the rate for white adolescents, and, in contrast to the national pattern, suicide is more likely to occur among younger adolescents than older ones.
The combined unintentional and intentional injury mortality rate among the AI/AN population is three times the rate for the general U.S. population. It is estimated that 75 percent of female Native American Indian and Alaska Native homicide victims are killed by someone they know. According to the National Women’s Health Information Center, the four leading causes of death among American Indian/Alaska Native women are, in order of prevalence, heart disease, cancer, unintentional injuries, and diabetes. These women have lower death rates from most major diseases—including heart disease, cancer, stroke, and chronic obstructive pulmonary disease—than Caucasian women. For example, breast cancer death rates for the American Indian/Alaska Native are lower than for Caucasian women. However, their mortality rates from chronic liver disease and cirrhosis, kidney disease, suicide, and homicide are higher than those of Caucasian women. American Indian/Alaska Native and black Americans report the shortest life expectancies among American women. In 1999 diseases of the heart accounted for as much as 31 percent of all deaths to white females and as little as 21 percent of all deaths to American Indian/Alaska Native females. The third-ranked killer of females is cerebrovascular diseases (primarily strokes). American Indian/Alaska Native women provide the only exception to this because unintentional injuries is their third-ranked killer. Cerebrovascular diseases rank fifth among the causes of death for American Indian/Alaska Native women. Among women of all races and age categories, American Indian females ages 25–44 have the second highest death rate due to suicide—at 6.5 per 100,000. Death rates associated with alcoholism are much higher among AI/AN women than among women of all races. For the 1994–96 period, mortality due to alcoholism among American Indian/Alaska Native women ages 25–34 years was nearly 21 per 100,000 population, in contrast to the slightly more than one per 100,000 rate for women of all races. American Indian/Alaska Native women ages 35–44 had a mortality rate due to alcoholism of 67 per 100,000 in 1994–96, nearly 14 times the rate of U.S. women of all races.
26 American Indians and death AI/AN infant mortality rates are 45 percent higher than those of whites, and some American Indian communities have infant mortality rates that approach twice the national average. Three times as many American Indians/Alaska Natives, as persons in the general population, die before reaching the age of 45. The six leading causes of death in 1995 for elderly American Indians/Alaska Natives were heart disease, cancers, diabetes mellitus, cerebrovascular disorders, pneumonia and influenza, and accidents. According to 1997 IHS data, the life expectancy for AI/ANs has dramatically increased. Life expectancy for those born between 1972 and 1974 was 63.5 years, compared to 71.1 years for those born between 1992 and 1994. Leigh, Wilhelmina A., and Maren A. Jimenez. Women of Color Health Data Book. National Institutes of Health. Available online. URL: http://www.4.od.nih.gov/ orwh/wocEnglish2002.pdf. Posted 2002. McCabe, Melvina. “Treating American Indians/Alaskan Native Elders.” Geriatric Times 2, no. 6 (November/ December 2001). Smith, Richard J., III, Alan J. Dellapenna Jr., and Lawrence R. Berger. “Training Injury Control Practitioners: The Indian Health Service Model.” Unintentional Injuries in Childhood 10, no. 1 (Spring/Summer 2000): 175–188. Thomas, Norma D. “The Importance of Culture Throughout All of Life and Beyond.” Holistic Nursing Practice 15 no. 2 (January 2001): 40–46.
American Indians and death
“American Indian” is used to refer to more than 545 federally recognized tribes residing in states other than Alaska. Although one of the smallest minorities in the United States, American Indians are a very diverse group, representing a variety of cultures and traditions. Burial Customs of American Indians American Indians have different burial customs according to their distinct tribal identities. Some tribes placed their dead in canoes and propelled them into waterways or out to sea. Other tribes wrapped their dead and placed them within branches of trees for a tree burial. Still others placed them on scaffolds.
Indian burial mounds remain throughout the country; others are interred in simple graves. The method of disposing of the dead varied according to both the tribe and the environment, with INHUMATION being the most widespread. The Huron and the Iroquois allowed the bodies to decay upon scaffolds, after which the bones were gathered up and deposited with much ceremony in the common tribal SEPULCHER. The Abenake and Mohawk natives buried their dead on high elevations because hilltops are closest to the stars, enabling souls to leave Earth and enjoy happy reunions with their ancestors in the heavens. The Nanticoke and Choctaw scraped the flesh from the bones, which were then wrapped in a bundle, and kept in a box within the dwelling. Some Indians burned their dead; some like the Osage buried their dead in a sitting position in a mound of rocks. Tree, scaffold, and cave burial were common on the plains and in the mountains, while cremation was the rule in the arid regions farther to the west and southwest. In the northern areas, the body was commonly deposited in a canoe raised upon posts. According to Bruce M. Mitchell and Robert E. Salsbury in their Encyclopedia of Multicultural Education (Greenwood Press, 1999), “Navajos feared death and the ceremonies were brief. The deceased were placed in crevices and covered with stones after the body was bathed and dressed in fine clothing and jewelry. In the Great Basin, burials often took place in caves, while in California, cremation was common. The Hurons held a feast for the dead every ten to twelve years.” Jutla Atli writes, “Cherokee people bury their dead. In ancient times we constructed burial mounds and then that practice later gave way to burying the dead in the ground, either in the floor of the dead person’s house or somewhere nearby.” Post writes, “Native burial customs involved a great deal of symbolism. People were buried facing the rising sun, sometimes in sitting positions. Elderly natives, sensing death approaching, would leave villages and climb a hilltop waiting to take their final breaths while seeking the ‘Spirit of the North.’ Sometimes local tribes left dead bodies exposed on raised platforms, a practice common to Plains natives. Later, bones would be buried wrapped in elm or birch bark.”
ancestor worship 27 Indian grave sites found on Long Island show that funeral rites were commonplace. Wick writes, “In a few cases, personal belongings were included in the grave. In others, dogs were killed and placed in the grave. In the late 1920s, a construction crew building a house near Lake Montauk found a wooden coffin that contained the remains of an adult female and a small dog. Copper pots, glass beads, and pipes were also in the grave. Historians believe that the dogs were included in graves to help guide the dead to the next life.” Atli, Jutla. “Atagahi: Common Misconceptions.” Available online. URL: http://www.geocities.com/tsutla_atli/ misconceptions.htm. Downloaded April 5, 2003. Post, Paul. “Development Threatens Native Burial Sites.” The Saratogian, November 20, 2002. Wick, Steve. “A Time to Live, A Time to Die: From Birth to Death, the Indians of Long Island Marked the Passing Stages of Life.” Newsday. Available online. URL: http:// www.newsday.com/extras/lihistory/2/hs206a.htm. Downloaded April 16, 2003.
Americans for Better Care of the Dying (ABCD) Founded in 1997, Americans for Better Care of the Dying (ABCD) is a nonprofit organization dedicated to ensuring that all Americans can count on good end of life care. The organization’s goals are to: build momentum for reform, explore new methods and systems for delivering care, and shape public policy through evidence-based understanding. Its efforts are focused on fundamental reforms, such as improved pain management, better financial reimbursement systems, enhanced continuity of care, support for family caregivers, and changes in public policy. ABCD helps other organizations and individuals fix their own community care systems and assists health care organizations in implementing rapid-cycle quality improvement methods. “We are committed to ensuring that every person experiences comfort, dignity, and meaning at the end of life, and that every loved one knows that life came to a close in a dignified and meaningful way. By sharing expertise, building collaborative networks and public commitment, ABCD seeks to achieve substantive health care reform through improved policy, professional practice, and care reimbursement.” Contact information:
Americans for Better Care of the Dying 4200 Wisconsin Avenue NW Suite 418 Washington, DC 20016 (202) 895–2660 (202) 966–5410 (fax)
[email protected] http://www.abcd-caring.org/
anatomical gifts
The donation of all or part of the body. BODY DONATION is usually for medical research, and ORGAN AND TISSUE DONATION is for transplant. Some families balk at carrying out the deceased’s request for body or organ donation because they fear this will mean body disfigurement or no public viewing at all. But the National Funeral Directors Association dispels these fears: Whether the entire body or just the organs are donated, medical personnel can usually make arrangements for the body to be present for the funeral. In some instances, if the funeral director knows a body has been donated to a medical school, he or she will call the school and prepare the body according to their directions. The body will then be taken to the school after the funeral. When organs are removed, the funeral director can use his or her embalming and restorative art skills to help return the body to a natural-looking state for the viewing and funeral. The body can still be buried according to the family’s wishes.
See also UNIFORM ANATOMICAL GIFT ACT.
ancestor worship The religious worship of ancestors based on the belief that the spirits of the dead continue to dwell in the natural world and have the power to influence the fortune and fate of the living. This worship is not a religion in and of itself, but more an expression of religion that recognizes an element beyond human control. Ancestor worship is at the core of people’s religious practices in China, tropical Africa, Malaysia, and Polynesia. Aspects of this type of worship have been traced to the ancient Egyptians and Romans. Various aspects of it existed among the ancient Hebrews, but their
28 “Angel of Death” worship was more of a reverence for the dead. The worship is neither universal nor widespread among primitive people. Spier writes that “The basis of ancestor worship seems to stem from two principle ideas: (1) that ‘those who have gone before’ have a continual and beneficent interest in the affairs of the living; and (2) more widespread, uneasiness, fear of the dead, with practices to placate them. The later ideas more often serve as a form of dispensing emotions than of worship.” People of Eastern religions often create altars to their ancestors at which they offer prayers and perform ceremonies. The ancestral altars contain ancestor tablets, narrow wood tablets about 12 inches tall that have the names of deceased relatives written in gold characters. Incense and other offerings are placed before the tablet in honor of the ancestors. In Eastern cultures, ancestor worship may be carried out by such rituals as annual ceremonies and offerings, daily lighting of incense, periodic setting of a spirit table, regular food offerings, or ritualistic recognition of ancestors at weddings. Money, called “spirit money,” may be offered to the gods of the underworld to alleviate the ancestor’s suffering. Describing ancestor worship in Chinese culture, Hsu writes: Each household has a family shrine. The shrine is situated in the central portion of the second floor of the west wing of the home. It is installed on the ground floor only when the house is a one-story structure. Occasionally the shrine is for ancestors only, but more often it houses a number of popular gods. Ancestors are represented in such a shrine either on a large scroll or on separate tablets. The scroll is a large sheet of mounted paper containing names, sex, and titles of the ancestors who are (theoretically) within wu fu, or five degrees of mourning. The tablets are made of wood, but if there is no time to have one made, a paper one will be substituted. Incense is offered in each burner daily, usually by a woman of the house. This act is performed every morning just before breakfast. There is no offering of food except on occasions of marriage, birth, division of the family, and during the ancestor festival.
The offering of gifts and food to ancestors stems in part from early fears. Doctor and Kahn explain, “Dead ancestors, who were worshiped in many early cultures as gods or near-gods, were thought to be easily angered. Gifts and ceremonies were necessary to sustain their goodwill and decrease hostilities the dead were believed to bear toward the living.” Doctor, Ronald M., and Ada P. Kahn. “Phasmophobia,” in The Encyclopedia of Phobias, Fears, and Anxieties, Second Edition. New York: Facts On File, 2000. Hsu, Francis L. K. Under the Ancestors’ Shadow: Chinese Culture and Personality. New York: Columbia University Press, 1948. Spier, Leslie. “Ancestor Worship.” The Mystica. Available online. URL: http://www.themystica.com. Downloaded April 6, 2003.
“Angel of Death”
A derisive nickname given to people who have been accused or found guilty of causing the deaths of many persons. It was applied to Dr. Josef Mengele, the Nazi officer and physician who controlled the fate of Auschwitz concentration camp prisoners during World War II, deciding which ones were to go to the gas chamber. The nickname has also been used for nurses and doctors accused of mercy killings of their elderly or comatose patients. Many religions have the concept of an angel of death. Often it is personified as the GRIM REAPER. Between the ages of five and nine, children tend to personify death and often associate it with the angel of death.
angels
In many religious traditions—especially Christianity, Judaism, Islam, and Zoroastrianism— angels are lesser spiritual beings who assist and serve God or the gods. Typically, angels are benevolent beings who act as intermediaries between heaven and Earth. They are most often represented as human figures having halos and wings. In early “guidebooks” for living and dying as a Christian, the death bed scene was frequently depicted with devils and angels vying for the soul of the dying person. In the 16th-century woodcut, “The Soul Goes to Heaven,” seven angels have six keys—
anniversary reaction 29 standing for the six works of charity—with which they open heaven and receive the soul into heaven. For Muslims, the soul is escorted by the angel Gabriel through seven layers of heaven.
anger
Anger is the second of five stages in the acceptance of death by the dying person, as described by psychologist ELISABETH KÜBLER-ROSS. It is also referred to as the protest or “why me?” stage. During this stage the person partially accepts the knowledge that he or she is going to die but becomes angry at the unfairness of having to die while other people go on living. During this stage, the dying person can be difficult to get along with, creating an especially challenging time for caregivers. When Kübler-Ross interviewed patients during her research, she found that the more energetic and peppy the nurse, the more anger she provoked in the patient during this phase. By lashing out, the dying patient is expressing anger at not being able to anticipate the freedom, vitality, and purpose represented by the nurses and others. The anger may even be directed at the patient herself in the belief that this illness is a result of her own wrongdoing— a punishment, so to speak. Patients are best served during this stage by being allowed and encouraged to express their feelings freely. If these feelings cannot be expressed, the anger may turn inward and the patient may become extremely depressed. By continuing to remain calm and loving toward the patient during these spells of anger, caregivers help keep the dying from feeling so alone. Kübler-Ross maintained that this stage is not radical, and that if patients are treated with respect and understanding, their anger will probably fade. Anger is also a commonly experienced phase of grief. Once the grieving survivors get past the denial stage and accept the fact that the loved one has died or will soon die, they often next ask, “Why her (or him)? Why my loved one?” This usually is expressed as anger toward each other for not being able to stop the death, toward the caring health professionals for not preventing it, or, very often, toward God for allowing or making this happen. Of all the stages in the grieving process, anger can be the most difficult for a friend or family member to understand and deal with. During this stage,
the grieving person may feel angry that others lived while the loved one died; he or she may question religious beliefs, and may even accuse family members or friends of not caring or not understanding. Following suicide the anger may be aimed at the deceased. These feelings of anger and hostility can be equally difficult to accept for the person experiencing them, especially if he or she has been taught that anger is a negative emotion to be avoided or smothered. Sometimes the grieving person’s anger will be compounded by worries that his rage is so overwhelming it may lead him to violence or madness. But in most cases, rage and anger provide a cathartic means of expression and of accepting the significance of death. At this stage one begins to ask questions about the death—who is to blame and what does it mean. By externalizing these questions, putting the blame on God or doctors, the anger stage helps the person handle the questions more easily. Psychiatrists say that persons who verbalize their anger or work it out physically (e.g., through vigorous exercise or gardening) are less likely to have COMPLICATED GRIEF REACTIONS. The death of a sibling, parent, or close relative can especially arouse feelings of anger in children. They may feel angry with the person who died for causing them so much pain and sorrow or for leaving them alone. Children are more apt to express their anger openly, especially when they have lost someone upon whom they depended for love and care. Children need to be reassured that they will be cared for. See also ACCEPTANCE; BARGAINING; DENIAL; DEPRESSION. Borins, M. “Grief Counseling.” Canadian Family Physician no. 41 (July 1995): 1207–1211.
anniversary reaction
An increase in the intensity of the grief response or some emotional reaction at certain times, even after there has been some resolution to the loss. Cook and Dworkin write, “Certain days or times of the year that have significance (for example, birthdays, holidays, seasons, the date of death) can trigger thoughts of the deceased, and some of the earlier pain may return for a short
30 announcing a death period of time. As long as this response subsides after the anniversary period, even if it occurs each year, it is a necessary step toward healing. If, on the other hand, an old wound is opened and the pain shows no evidence of ending, an important unresolved facet of grief may still exist and professional attention may be warranted.” Anniversary reactions can also occur following a traumatic event, such as the 9/11 disaster. Emotional reactions can occur on the date of the event, but can also be triggered by disturbing news reports about the trauma.
many newspapers will be a column or page of paid death announcements. In some churches and synagogues, the clergy may deliver a formal notice of death. In small communities, the local radio station may read death notices. In some countries, such as Israel, where the high cost of placing a paid death notice in the newspaper has led to some public outcry, death notices are customarily posted on and near the home of the bereaved family, as well as on public bulletin boards.
anticipatory grief Cook, Alicia Skinner, and Daniel S. Dworkin. Helping the Bereaved: Therapeutic Interventions for Children, Adolescents, and Adults. New York: Basic Books, 1992.
announcing a death Various religious, legal, and cultural codes and traditions are observed in announcing a death. Informing the immediate next of kin takes precedence over relatives who may be nearer to the scene of death, and it is a breach of etiquette not to notify a close relative about a death. Traditionally, the announcement of a death occurs immediately following confirmation by the medical doctor. With Orthodox Jews, there may be a delay in announcing a death (especially just before the beginning of the Sabbath) and arrangements for interment have to wait until after the Sabbath. Until fairly recently, telegrams were commonly used to announce the death to relatives, close friends, attorneys, and business associates. Although still used occasionally today, telegrams have been supplanted by the telephone, mail, fax, and e-mail. A more formal way to announce a death to distant relatives and associates is by sending printed cards, much like wedding announcements, but with a black border around the card. In some rural areas, such as the Appalachian Mountains, a church bell would toll to the number of the deceased person’s years. Not only would this announce a death to the surrounding community, but also it would often be a clue as to who had passed away, unless death was due to an accident. Typically, an OBITUARY notice is published in local newspapers announcing the death and type of service to be held. Accompanying these obituaries in
When a death is anticipated due to terminal illness, adults commonly report experiencing grieflike reactions prior to the actual death of a spouse, parent, or child. Anticipatory grief has been defined as the total set of cognitive, affective, cultural, and social reactions to expected death felt by the patient and family. Some of the signs and symptoms of anticipatory grief include: feelings of guilt, tearfulness, constant changes in emotions, anger, depression, feelings of emotional numbness, anxiety or feelings of fear, changes in sleeping and eating habits, poor concentration, forgetfulness or poor memory, loneliness, fatigue. Cook and Dworkin explain that anticipatory grief emanates from the expectation of emotional pain and the life changes the loss will bring. “Although it does not completely prepare a survivor for the emotional experience of the actual loss, it does allow time for resolving emotional issues with the deceased and preparing for the future. Sudden death is particularly difficult to handle since it usually does not allow this process to take place.” According to Watstein, “Anticipatory grief helps bring eventual closure. By giving us the chance to project into the future and see the loss before the fact, we are granted time to be ‘real’ with the dying person, to say the things we always meant to and, perhaps, to share on a deeper level than previously.” Nussbaum et al. warn that although anticipatory grief may make it easier for survivors to pull things together after the death, it can affect communication prior to the death and lead to a “social death,” with people treating the person as if he or she is already dead. Family members may even become irritated that the death is taking so long. “Anticipatory grief can become a double-edged sword:
Arlington National Cemetery 31 Although it helps secure the well-being of the survivor, it ruptures any remaining social bonds between the dying and surviving family members. Those social bonds are tenuous enough at this point and are easily severed.” Gilbert addresses the controversy and confusion that exists around the concept of anticipatory grief: Research on anticipatory grief has been contradictory and problematic. Some studies have found that the ability to anticipate a loss results in an easier grief experience. Others have found no relationship between a period of anticipation and the severity of post-death grief. A few studies have found a mid-range “window of opportunity” for better postdeath grief outcomes. . . . The situation is even more complex when the process of coping with anticipated loss in the family is considered. Family members may be at any number of points in their grieving of the loss. There may, in fact, be family members who have not begun to grieve while others have moved to separate themselves, emotionally, from the person who is dying.
Some researchers report that anticipatory grief rarely occurs. They support this observation by noting that the periods of acceptance and recovery usually observed early in the grieving process are rarely found before the patient’s actual death, no matter how early the warning. In addition, they note that grief implies that there has been a loss; to accept a loved one’s death while he or she is still alive can leave the bereaved vulnerable to self-accusation for having partially abandoned the dying patient. Finally, anticipation of loss frequently intensifies attachment to the person. Cook, Alicia Skinner, and Daniel S. Dworkin. Helping the Bereaved: Therapeutic Interventions for Children, Adolescents, and Adults. New York: Basic Books, 1992. Gilbert, Kathleen R. “Anticipated Losses and Anticipatory Grief.” Available online. URL: http://www.indiana.edu/ ~famlygrf/units/anticipated.html. Updated November 1, 2001. Nussbaum, Jon F., et al. Communication and Aging. Mahwah, N.J.: Lawrence Erlbaum Associates, 2000. Watstein, Sarah Barbara. “Grief and AIDS,” in The AIDS Dictionary. New York: Facts On File, 1998.
anxiety about dying A feeling of unease and apprehension when thinking about one’s own death. Anxiety about dying can be experienced by people at any age, but generally it tends to decrease in late adulthood. Among the causes of such anxiety: Dying is the loss of the world in which one has lived, worked, and loved. There is also anxiety about the moment of dying. Or, there can be a fear of what comes after death. This can vary from a vague anxiety about the unknown to a literal, deathly fear of punishment that may be eternal. Nossaman writes, “A lot of our anxiety about death has to do with what follows it and the fact that we are so much in the dark about it. Dying involves crossing to the other side of the curtain, an experience which is invisible and unknown.” See also DEATH ANXIETY; THANATOPHOBIA. Nossaman, Nicholas. “Reflections on Death.” The New England Journal of Homeopathy 9, no. 2 (Fall/Winter 2000).
Arlington National Cemetery A national cemetery located on the Virginia side of the Potomac River near Washington, D.C., and under the jurisdiction of the Department of the Army. Arlington Mansion (originally the Custis-Lee Mansion, built by George Washington’s adopted son, George Washington Parke Custis) and 200 acres of ground immediately surrounding it were designated officially as a military cemetery on June 15, 1864, by Secretary of War Edwin M. Stanton. The primary mission of Arlington National Cemetery is to function as the nation’s premier military cemetery and shrine honoring those men and women who served in the Armed Forces. More than 260,000 people are currently buried at Arlington Cemetery, and an average of 23 funeral services are conducted each weekday. Veterans from all the nation’s wars are buried there, from the American Revolution through the Iraq War of 2003. Pre-Civil War dead were reinterred after 1900. Veterans and public officials meeting any of a dozen criteria are eligible for in-ground burial in Arlington National Cemetery. These criteria generally cover active duty members of the Armed Forces, retired or decorated veterans, presidents of the United States, veterans who also held elective
32 arrangements office, and certain relatives of those with military and governmental eligibility. In addition to in-ground burial, Arlington National Cemetery also has one of the larger columbaria for cremated remains in the country. Four courts are currently in use, each with 5,000 niches. When construction is complete, there will be nine courts with a total of 50,000 niches; capacity for 100,000 remains. Any honorably discharged veteran is eligible for inurnment in the COLUMBARIUM. Partly because of its historical significance and partly due to the moving Changing of the Guard ceremony at the TOMB OF THE UNKNOWNS, the cemetery also has become one of the most visited tourist sites in the Washington area, serving approximately four million visitors annually. The official Web site—http://www.arlington cemetery.org—offers many pages of historical information, maps, qualifications for burial, and funeral procedures. The mailing address is Arlington National Cemetery, Arlington, VA 22211. See also NATIONAL CEMETERIES.
arrangements Also called final arrangements; activities associated with the care and disposition of a human body following death. Commonly used to cover all the preparations for a funeral, including the arrangements associated with a ceremony following the death. Funeral directors usually use it to mean the disposition of the body.
artificial hydration and nutrition (AHN)
Commonly known as tube feeding, AHN is the introduction of nutritional formulas and water into a patient’s body by means of tubes, catheters, or needles inserted into veins (IV feeding); through the nose, down through the throat, and into the stomach (nasogastric or NG tube); surgically through the abdominal wall into the stomach (gastrostomy tube or g-tube); or through the abdominal wall into the small intestine (jejunostomy tube). Artificial nutrition and hydration are sometimes given to people while they recover from a temporary problem and are unable to eat or drink. AHN may also be given to people who have an advanced, life-threatening illness and are dying. Artificial
hydration and nutrition in these patients may make the patient live a little longer but not always. Some controversy swirls among medical and religious ethicists as to whether dying patients should be force-fed via AHN. Referring to findings by Bernat and Mogielnicki, the West Virginia Department of Medicine explains: Courts in the United States have found that artificial nutrition and hydration are medical treatments and can be administered or refused as can any other treatment. There is no reason why food and water should be considered any more essential to human life than oxygen, or why the artificial provision of food and water should be treated differently from mechanical ventilation. In most cases where refusal of food and water is considered it would seem preferable to withdraw both nutrition and hydration. When both are withdrawn death can be expected due to electrolyte imbalance and dehydration in 10–14 days; the continuation of fluids may prolong the dying process by many weeks. Contrary to popular opinion and perhaps to the intuitive feelings of healthy people, patients for whom nutrition and hydration support is discontinued do not normally experience thirst or starvation. Terminal patients who are given normal fluid replacement often show signs of fluid overload, including pulmonary edema. Dehydration may decrease vomiting and diarrhea and diminish the need to suction secretions. Dry mouth and lips can be relieved with lubricants and ice. In terminal patients where nutrition and hydration are not provided artificially, the wishes of the patient refusing food and water should be honored. The refusal of food and water is part of the normal dying process.
When the decision of whether to initiate or continue AHN has not been made ahead of time via ADVANCE DIRECTIVES, family members can find the making of such a decision agonizing. Janine Marie Idziak, Ph.D., a health care consultant for the Catholic archdiocese of Dubuque, Iowa, writes: Culturally, offering food is a sign of caring and hospitality. We can think of mothers providing
art therapy and grief 33 food for their infants. Most people enjoy sharing a meal with family members and friends, especially on holidays and special occasions. Food can be a part of religious rituals. Thus it is not surprising that, when someone we love is unable to take food and drink naturally, we want to “feed” them in some way.
However, a decrease and loss of appetite is a natural part of the body shutting down in the dying process. With respect to the use of artificial nutrition and hydration for persons who are dying, Lynn and Harrold offer this advice: The evidence from medical research and experiences of clinicians suggest that dying people are often more comfortable without artificial hydration, whether provided by a feeding tube or IV. Until this generation, everyone who died a natural death died without artificially supplied fluids. The stopping of eating and drinking has always been part of the last phase of a terminal condition. Only recently have people been afraid that not providing food and fluid through a tube would cause someone to “starve to death.” There is no medical or clinical evidence that not using a feeding tube or IV leads to a more painful death. In fact, the research says just the opposite.
As Lynn and Harrold point out, there is increasing evidence that patients who are allowed to die without artificially supplied fluids die more comfortably than patients who receive such treatment. Natural dehydration can reduce the patient’s secretions and excretions, thus relieving breathing problems and decreasing problems with vomiting and incontinence. Less fluid in the body results in less frequent urination, and in turn, less risk of skin breakdown and bed sores. Less fluid in the body means less pressure on tumors, and hence less pain for the patient. Indeed, the natural process of dehydration leads to death in ways that produce a sedative effect on the brain just before death, thus decreasing the need for pain medication. Regarding artificial nutrition and hydration, the Ethical and Religious Directives for Catholic Health Care Services from the National Conference of Catholic Bishops (1994) states:
There should be a presumption in favor of providing nutrition and hydration to all patients, including patients who require medically assisted nutrition and hydration, as long as this is of sufficient benefit to outweigh the burdens involved to the patient.
Thus, it is considered morally permissible to forgo (withhold or withdraw) artificial nutrition and hydration when this procedure does not provide benefits to the patient sufficient to outweigh its burdens for the patient. Noting that “some state Catholic conferences, individual bishops, and the NCCB Committee on Pro-Life Activities have addressed the moral issues concerning medically assisted hydration and nutrition,” this document goes on to say: These statements agree that hydration and nutrition are not morally obligatory either when they bring no comfort to a person who is imminently dying or when they cannot be assimilated by a person’s body.
Thus, clinical evidence that patients may well die more comfortably without artificially supplied fluids is very important and relevant in making our moral judgments about using or forgoing artificial nutrition and hydration in end-of-life care. American Dietetic Association. “Position of the American Dietetic Association: Issues in Feeding the Terminally Ill Adult.” American Dietetic Association Journal no. 8 (August 1992): 996–1002, 1005. Bernat, J. L., B. Gert, and R. P. Mogielnicki. “Patient Refusal of Hydration and Nutrition.” Archives of Internal Medicine 153, no. 24 (December 24, 1993): 2723–2728. Lynn, Joanne, and Joan Harrold. Handbook for Mortals: Guidance for People Facing Serious Illness. New York: Oxford University Press, 1999.
art therapy and grief Art therapy is the therapeutic use of the visual arts, with the assistance of a trained professional, to promote emotional healing. Professional art therapists use the shapes and pictures that their clients make as a means of nonverbal communication that can lead to a better understanding of the client’s behavior. Art therapy is sometimes used to help people work through the grieving
34 ashes process. Many people are unable to fully express their feelings of grief through words, and art therapy offers them an opportunity to express their feelings nonverbally through the use of art materials. Although art therapy as a profession did not come into its own until the 1940s, making art to “process” a loss is certainly not new. Hill writes, “In one sense, humankind may have developed art to alleviate or contain feelings of anxiety, fear, crisis, and threat as well as to mark the importance of events such as death through the creation of visual imagery. The desire to self-express through an art form during times of mourning has been explored by many.” In Art as Culture: An Introduction to the Anthropology of Art (Bergin & Garvey, 1999), Evelyn Payne Hatcher writes: Whatever the theoretical explanation, it is clear that art somehow helps human beings cope with the trauma of death. Beauty and art forms have been part of funeral ceremonies since Neanderthal times. This universal human problem is met everywhere with symbolic solutions to satisfy the mind and esthetic solutions to release the emotions.
Some debate is ongoing as to whether the art is itself a complete form of therapy or a strategy for conducting therapy. Generally, though, most psychoanalysts see art therapy as a means for “seeing” the patient’s thoughts and feelings. Ferszt et al. add that “Art making can be therapeutic both during the process of creation and afterward as a means of reflection. The sensory act of touching, seeing, and smelling the art materials in the process of art making awakens the senses, taking the person into a deeply expressive place that may be difficult to access by cognitive and verbal approaches.” Dealing with grief after exposure to a sudden traumatic death can be an especially painful and personal experience for children. According to Clements et al., “Drawings are an expressive method that can provide a conduit for identifying and understanding issues requiring therapeutic intervention and follow up.” Some children find expressing their grief through drawing, working with clay, painting, and other art mediums more helpful than expressing their grief through words.
Ferszt et al. note, in fact, that the use of art in bereavement has focused primarily on children. “The positive effects of art therapy in bereavement as reported anecdotally and in case studies are thought to be generally high. Art provides a natural avenue for children to express sadness, anger, and other difficult and often confusing emotions safely. The finished expressions of art also provide a sense of gratification, allowing the person to see the outcomes of her or his own creative resources.” Although fewer studies have been reported on the use of art therapy for adults coping with grief, several reports do extol its effectiveness, noting that it has been used with survivors of recent tragedies like the Oklahoma City bombing and 9/11 disasters. The American Art Therapy Association, founded in 1969, is a nonprofit organization that provides standards of professional competence, plus develops and promotes knowledge about the field of art therapy. American Art Therapy Association 1202 Allanson Road Mundelein, IL 60060–3808 (888) 290–0878 or (847) 949–6064 (847) 566–4580 (fax)
[email protected] http://www.arttherapy.org Clements, P. T., Jr., K. M. Benasutti, and G. C. Henry. “Drawing from experience.” Journal of Psychosocial Nursing and Mental Health Services 39, no. 12 (December 2001): 12–20. Ferszt, Ginette G., et al. “Transformation through Grieving: Art and the Bereaved.” Holistic Nursing Practice 13, no. 1 (October 1998): 68–75. Hill, Malinda Ann. “Healing Grief through Art: Art Therapy Bereavement Group Workshops.” Available online. URL: http://www.drawntogether.com/healing.htm. Downloaded April 19, 2003.
ashes The commonly used, but inaccurate, term for the CREMAINS, or cremated remains, which more closely resemble finely crushed sea shells or coarse sand. Final disposition of ashes will vary according to family wishes, local laws, and religious requirements. In many cases, the cremation ashes are scattered or buried in gardens of remembrance. A few crematoria have niches where urns may be placed,
Asian Americans/Pacific Islanders (AAPI) and death 35 but these are usually on a rental basis and if not renewed periodically the ashes will be scattered or buried. Some families prefer to have the ashes placed in an urn for burial in a family grave, scattering in some spot meaningful to the deceased, such as a mountaintop or at sea, or kept in some memorial location. If ashes are scattered on the ground, weather and biochemical action quickly break down the ashes to form part of the earth, and within a short time there is no trace of them. See also CREMATION.
Asian Americans/Pacific Islanders (AAPI) and death For statistical purposes, the U.S. government and various health agencies have for years grouped the diverse and heterogeneous group of people whose roots span the globe from the Far East to Southeast Asia to Polynesia to Hawaii into one population segment they call Asian Americans/Pacific Islanders or Asian Pacific/Islander Americans (APIA) or Asian/ Pacific Islanders (AIA). Some researchers have had a problem with such aggregated study populations when it comes to medical and mortality research, noting that the research on ethnic health disparities is especially fragmented in Asian/Pacific Islanders. Part of the problem rests with unclear definitions of ethnicity, with much of the information self-reported by individuals and complicated by mixed ethnicity. For the first time, the 2000 census allowed people to report more than one race for themselves and their household members and also separated the category for Asian or Pacific Islander persons into two groups: Asian Americans, and Native Hawaiian or Other Pacific Islanders (NHOPIs). Asian Americans are people having origins in any of the original peoples of the Far East, Southeast Asia, or the Indian subcontinent. According to the 2000 U.S. Census, those who identify only as Asian-American comprise 3.6 percent of the American population, approximately 10 million individuals. The Census Bureau projects that the AsianAmerican population will grow to 37.6 million individuals by the year 2050, comprising 9.3 percent of the population. Chinese Americans are the most rapidly growing Asian American group, and Yick and Gupta found that many of their attitudes and practices about
death and dying are rooted in Asian cultural values such as filial piety, centrality of the family, and emphasis on hierarchy. “In addition, strains of Confucianism, Buddhism, Taoism, and local folklore are embedded in these practices and attitudes.” Native Hawaiian or Other Pacific Islanders are people having origins in any of the original peoples of Hawaii, Guam, Samoa, or other Pacific Islands, even if they do not live in the Pacific Islands. According to the 2000 Census, those who identify only as NHOPI comprise 0.1 percent of the American population, or almost 400,000 individuals. Complicating this attempt to differentiate among these population groups, only one race is currently reported in DEATH CERTIFICATE data. Thus, any mortality statistics for Asian Americans/Pacific Islanders from the 1990s through 2010 are likely to show overlap, “bridging,” and differing categories for these population groups. Leading Causes of Death The Centers for Disease Control reports that Asian Americans represent both extremes of socioeconomic and health indices: Although more than a million Asian Americans live at or below the federal poverty level, Asian-American women have the highest life expectancy of any racial and ethnic population. Asian Americans suffer disproportionately from certain types of cancer, tuberculosis, and Hepatitis B. Factors contributing to poor health outcomes for Asian Americans include language and cultural barriers, stigma associated with certain conditions, and lack of health insurance. The 10 leading causes of death in the United States in 2000 for Asian Americans were: (1) cancer, (2) heart disease, (3) stroke, (4) unintentional injuries, (5) chronic lower respiratory disease, (6) influenza and pneumonia, (7) diabetes, (8) suicide, (9) nephritis, nephrotic syndrome, and nephrosis, and (10) birth defects. According to the Centers for Disease Control, NHOPIs generally experience poorer health than the American population as a whole: they are more at risk for developing and dying from cancer, heart disease, diabetes, and other diseases. Factors contributing to poor health outcomes among NHOPIs include cultural barriers, limited access to health care, and poor nutrition and lifestyle.
36 assisted suicide The 10 leading causes of death in the United States in 2000 for Native Hawaiians and Other Pacific Islanders were: (1) cancer, (2) heart disease, (3) stroke, (4) unintentional injuries, (5) chronic lower respiratory disease, (6) influenza and pneumonia, (7) diabetes, (8) suicide, (9) nephritis, nephrotic syndrome, and nephrosis, and (10) birth defects. The Centers for Disease Control reports show that through December 1998, 2,504 Asian/Pacific Islander males and 286 Asian/Pacific Islander females had died of AIDS-related causes. Motor vehicle crashes are the number one cause of death for Asian/Pacific Islanders ages one to 24. According to the National Women’s Health Information Center, the four leading causes of death among Asian American/Pacific Islander women are, in order of prevalence, cancer, heart disease, stroke, and unintentional injuries. These women have lower death rates from most major diseases— including heart disease, stroke, and HIV/AIDS— than Caucasian women. Their mortality rates from breast cancer and all cancers combined was the lowest of all population groups in 1996. However, suicide ranked eighth among the deaths in Asian American/Pacific Islanders. See also HAWAIIAN NATIVE BURIAL CUSTOMS. Yick, A. G., and R. Gupta. “Chinese Cultural Dimensions of Death, Dying, and Bereavement: Focus Group Findings.” Journal of Cultural Diversity 9, no. 2 (Summer 2002): 32–42.
assisted suicide Hastening one’s own death with assistance from another with the intent of ending suffering from a chronic or terminal disease. The importance of having assistance, in the minds of those who seek it, is that the possibility of assistance enables them to stay alive longer than if they had to complete suicide alone, since at some point the illness might progress to the point at which they could no longer hasten their death without assistance. The option of assisted suicide is important to some, even if they never use it, as a means to ensure some control over their suffering. Assisted suicide is referred to in many statutes as “abetted” suicide. It has been defined as giving advice on methods of suicide, or otherwise facilitating the suicide of
another individual. In 1997 the U.S. Supreme Court ruled that assisted suicide is not a constitutional right. This means that states are constitutionally allowed to prohibit assisted suicide. The Court also recognized the distinction between suicide, involving the direct and intentional taking of life, and decisions to refuse treatment or use of pain medication, which may indirectly result in hastened death but not involve an intent to take life. Currently, assisting suicide is a crime in all but one state, and is directly banned by statute in 38 states. In 1994 Oregon voters approved a law that legalizes physician-assisted suicide for persons with terminal conditions. While it is against the law in most states to directly assist another person in taking his or her own life, it is not illegal to give general information to people, especially when the information given is obtained from sources already in the public domain, such as in bookstores or libraries. The question remains whether federal law allows the states to permit assisted suicide and under what circumstances. By classifying persons with terminal conditions as eligible for suicide assistance, while continuing to treat suicide assistance involving non-terminally ill suicide victims as a crime, the Oregon law raises serious equal protection questions. The U.S. Department of Justice has announced that it will not enforce federal laws governing the dispensing of dangerous drugs against Oregon doctors who participate in legalized assisted suicide. Congress is considering legislation, backed by the American Medical Association and the National Hospice Organization, to override the Justice Department. See also EUTHANASIA; MERCY KILLING; PHYSICIANASSISTED SUICIDE. Evans, Glen, Norman L. Farberow, and Kennedy Associates. “assisted suicide,” in The Encyclopedia of Suicide, Second Edition. New York: Facts On File, 2003.
Association for Death Education and Counseling (ADEC) One of the oldest interdisciplinary organizations in the field of dying, death, and bereavement, ADEC began in 1976 as the Forum for Death Education and Counseling. Its membership is made
autopsy 37 up of mental and medical health personnel, educators, clergy, funeral directors, and volunteers. ADEC offers numerous educational opportunities through its annual conference, courses and workshops, and a certification program. It publishes a newsletter, The Forum. Working to promote and share research, theories, and practice in dying, death, and bereavement, ADEC’s primary goal is to enhance the ability of professionals and lay people to better meet the needs of those with whom they work in death education and grief counseling. Contact information: Association for Death Education and Counseling (ADEC) 342 North Main Street West Hartford, CT 06117–2507 (860) 586–7503 (860) 586–7550 (fax)
[email protected] http://www.adec.org
Association for Gravestone Studies, The (AGS) Founded in 1977 for the purpose of furthering the study and preservation of gravestones. AGS is an international organization with an interest in gravemarkers of all periods and styles. Through its publications, conferences, workshops, and exhibits, AGS promotes the study of gravestones from historical and artistic perspectives, expands public awareness of the significance of historic gravemarkers, and encourages individuals and groups to record and preserve gravestones. Members receive the AGS Quarterly and Markers, an annual scholarly journal. Contact information: The Association for Gravestone Studies 278 Main Street Suite 207 Greenfield, MA 01301 (413) 772–0836
[email protected] http://www.gravestonestudies.org
asystole Also called “flat line.” Cardiac standstill with no electrical activity or contractions of the heart (heartbeat). It eventually occurs in all dying patients.
autoerotic deaths Accidental deaths that occur during individual, usually solitary, sexual activity in which a device, apparatus, prop, chemical, or behavior that was employed to enhance the sexual stimulation of the deceased in some way causes unintended death. Autoerotic asphyxia induces a state of oxygen deficiency, which enhances sexual excitement and orgasm. It has been practiced for centuries, and there are many reports of fatalities. Most reported cases are of young males, although it is not unheard of among women. Cases of autoerotic asphyxia are often labeled as suicide, or are under-reported because of embarrassment of relatives or misidentification of the initial clinical manifestations. It may be that autoerotic asphyxial death is far more common than realized. According to Kirksey et al., “Many emergency nurses and physicians lack adequate knowledge about this phenomenon to make an accurate diagnosis. Family members are often reluctant or unwilling to provide enough data surrounding the circumstances in which the patient was found, and the cause of death is mislabeled as suicide. Autoerotic asphyxia is frequently labeled as a sexual aberrancy and an act that society would rather not acknowledge.” Kirksey, K. M., et al. “Autoerotic Asphyxia in Adolescents.” Journal of Emergency Nursing 21, no. 1 (February 1995): 81–83.
autopsy An examination of a dead body following dissection in order to allow observation by the pathologist. An autopsy involves observing both the external and internal structures of the body in order to gather information about that person and the person’s death, such as evidence of any abnormal development, natural disease, injury, or unnatural event. If autopsy is not required by law, such as when a crime is suspected, the legal next-of-kin must sign an autopsy permit. The most common reason for performing an autopsy is to establish the true cause of death and/or the manner of death, such as homicide, accident, or suicide. But autopsy can also be used to compare what the physicians knew with what is found, assess the quality of medical care, teach doctors and medical students, check
38 autopsy the effectiveness of new treatments, find the cause of new or altered diseases, and reassure family members. In the United States, dissection of the human body has been practiced since the mid-1700s, although it was not unusual during the early days for riots and acts of violence to occur against physicians, anatomy instructors, and medical students in protest of the practice. In a history of autopsy and religion Seilhean notes that “No main religion practiced in the regions where autopsies are performed forbids it definitely. Judaism and Islam accept it as far as its usefulness is demonstrated. Christianity encourages the gen-
erosity of donation. Buddhism, which developed a denial of appearances, is finding ways to dialogue with the need of medical practices in the western world.” Autopsy records in hospitals, medical examiner, and coroner offices are usually kept for decades or longer. Family members can request and expect to obtain a copy of the autopsy report many years later. Some states require that the next-of-kin family member make the request. See also BODY SNATCHING. Seilhean, D. “Autopsy and Religions.” Bulletin de l’Academie Nationale de Medecine 185, no. 5 (2001): 888–889.
B to talk about whatever he or she feels was left undone or needs to be made right, and to express their feelings. The bargaining usually is private and on a spiritual level. See also ACCEPTANCE; ANGER; DENIAL; DEPRESSION.
bad death
A medical term that palliative care proponents use to describe a person who dies in pain, under psychological distress, and unable to communicate his or her needs. Medical ethicists describe a bad death as a death characterized by needless suffering, dishonoring of patient and family wishes or values, and a sense among participants or observers that norms of decency have been offended. It has also been described as a death characterized by poor symptom control, physician abandonment, or inadequate closure. Bad death is also a Christian religious term used to describe a person who dies in a state of mortal sin— without receiving the Sacrament of the Sick. The threat of suffering a bad death by not adhering to a list of religious requirements on one’s deathbed dates back to before the Reformation.
beneficiary An individual or organization that receives funds from any source. The term beneficiary is commonly used to mean the individual, institution, trustee, or estate named in an insurance policy as the recipient of the funds in the policy, in the event the policyholder dies. Beneficiaries may also be named in wills, retirement plans, annuities, and other contracts. In addition to naming a specific beneficiary to receive the proceeds of a life insurance policy (permanent or term), the Insurance Information Institute suggests naming a secondary or “contingent” beneficiary, in case the insured outlives the first beneficiary. If there is no living beneficiary, the proceeds will be paid to the insured’s estate and have to go through probate proceedings, resulting in a possible delay before the family receives the money. If the proceeds go into the estate, these proceeds may be subject to estate taxes. The Insurance Information Institute has additional information.
bargaining
As described by psychologist ELISAKÜBLER-ROSS, the third stage of dying, when the terminally ill patient attempts to buy time by negotiating, usually with God but sometimes with physicians or with anyone or anything that the person believes can protect him or her from death— “Let me live until . . . or . . . months longer, and I will . . .” In return for a cure or at least a delay of death, the patient will go to church, give to charities, meet some family obligation, or fulfill any number of promises. It may involve praying, seeking alternative treatments, or promising better behavior in exchange for postponement of the inevitable. During this stage, the patient may be exhausted and show signs of depression. He or she may experience weakness and shortness of breath if his or her situation is discussed, an acute situation that may last from several minutes to an hour. It is best during this phase to allow the grieving person BETH
The Insurance Information Institute 110 William Street New York, NY 10038 (212) 346–5500 www.iii.org
benefits and burdens
In the context of health care, a guideline commonly used to determine whether or not to withhold or withdraw medical treatments. Benefits are the outcomes that a specific
39
40 bequest medical procedure or treatment in all probability will be successful in attaining. Outcomes may be medical (the heart beats again) or functional (the patient being able to once again walk), or may support the patient’s values (the patient is able to die at home as he wished). Burdens are the physical and emotional pain, discomfort, suffering, and/or losses that a medical procedure or treatment will impose. For example, resuscitation may cause the patient to breathe again—a benefit, but it may also cause the dying patient extended suffering and further financial burden. The benefits and burdens of care may be different for the medical team, for the patient, and for the family. And they will vary among patients according to the personal value systems of the persons involved. Thus, according to PARTNERSHIP FOR CARING, “Discussions of the benefits and burdens of medical treatments should occur within the framework of the patient’s overall goal for care.”
against one’s will.” The terms GRIEF, bereavement, and MOURNING are often used in place of each other, but they have different meanings. Bereavement is the period after a loss during which grief is experienced and mourning occurs. After someone close to you dies, you go through a process of mourning. Grief is the visible sign of that mourning—a coping mechanism—and encompasses a wide range of physical and emotional symptoms that you experience after a loss. Bereavement is not restricted to people who have lost someone they have known for a long time. It is also experienced by people who have had stillbirths, miscarriages, or lost a young baby. The duration and expression of “normal” bereavement vary considerably among different cultural groups, and also depend on how attached the person was to the person who died, and how much time was spent anticipating the loss.
bereavement leave bequest
A gift given after death. Most usually, a bequest is tangible property, such as cash, real estate, or securities, given or left to an individual or organization in a will. According to MedLawPlus.com, which offers legal forms such as wills, a bequest may be “specific” or “residual.” A specific bequest is one whereby the maker of a Last Will gives a BENEFICIARY a specific sum of money, a specific item of property, or a well-defined class or kind of property (i.e., “all stocks that I own” or “my coin collection”). A residual (or residuary) bequest is the disposition by the maker of a will of all that remains after payment of debts of the estate, administrative expenses of the estate, charitable bequests, disposition of personal effects, and specific bequests. In effect, it is what is left over after the completion of all other outflows from the estate directed by the will. The residual bequest may go to one beneficiary, multiple beneficiaries in equal shares, or multiple beneficiaries in designated percentages (with the total percentages assigned adding up to 100 percent). “Bequest” is also used for BODY DONATION.
bereavement To be deprived by death. Bereavement literally means to “tear up, the loss, the issue
Time allowed off the job due to the death of a family member. The typical bereavement leave is three to five days for a close relative, such as a parent, child, or spouse, although some firms will extend that on an as-needed basis. Bereavement leave is not required by federal or state law, but is a holdover from old labor agreements. An increasing number of employers are recognizing domestic partner relationships as family and thus qualified for bereavement leave. One human resources survey found that bereavement leave today averages 3.4 days a year, up from 3.1 days in 1970, but experts say that’s still insufficient for most people. Not only do the funeral logistics take awhile for today’s far-flung families, but also the grieving process, when worker effectiveness falls to low levels, invariably takes longer than three days. See also EMPLOYEES’ NEEDS AS END-OF-LIFE CAREGIVERS.
bier
A raised stand on which a corpse or COFFIN containing a corpse is placed before burial. A coffin along with its stand is also sometimes referred to as a bier. Among the ancient Hebrews a bier was simply an open coffin or a flat wooden frame, on which the body of the dead was carried from the house to the grave.
Black Death 41 bioethics Study of the challenging moral and ethical issues that face medical researchers and health caregivers resulting from the rapid advances in the sciences, especially medicine and biology, that affect our lives today from birth through death. Historically, ethics was in the realm of theologians, but along with the invention of life-supporting technologies such as artificial respirators and heart-lung machines in the 1960s, ethical questions arose as to their use, resulting in medical ethics as a distinct field in the 1970s, particularly in the United States. Professional philosophers developed university courses on bioethics. In the 1980s, two California doctors were charged with first-degree murder after they shut off a patient’s breathing machine with the family’s consent. The doctors were not prosecuted, but the incident led to hospitals and aged-care facilities nationwide employing bioethics experts to advise them on the ethical issues and challenges they now face. In November 2001 the President’s Council on Bioethics was formed. Ethical challenges having to do with death and dying include managed care, end-of-life treatment, EUTHANASIA, and ASSISTED SUICIDE. In bioethics issues, there are no cut-and-dried, one-size-fits-all answers—only alternatives and considerations. Physicians, theologians, professors, philosophers, scientific researchers, pharmacists, and lawyers all sit on bioethics committees. Even religions hold no consensus about end-of-life choices. Most religions hold all life as sacred, but that belief is not absolute in all instances, according to theologians. Fletcher, John C., Franklin G. Miller, and James M. Humber, eds. The Nature and Prospects of Bioethics: Interdisciplinary Perspectives. Totowa, N.J.: Humana Press, 2003. Walter, Jennifer K., and Eran P. Klein, eds. The Story of Bioethics: From Seminal Works to Contemporary Explorations. Washington, D.C.: Georgetown University Press, 2003.
biological death Somatic or physical death; the irreversible breakdown of respiration and consequent loss of oxygen utilization by a living organism. It begins four to six minutes after CLINICAL DEATH and is the point when brain cells begin dying. Biological death has also been described as the state
from which resuscitation of the body as a whole is impossible by currently known means. It is the point at which the failure of the brain, respiratory, and circulatory systems are irreversible. The potential of biomedicine to prolong the process of biological death, possibly indefinitely for some patients, has helped spur the BIOETHICS debate.
Black Death Form of bubonic plague that spread over Europe during the 14th century, killing as much as one-half of the European population, according to some estimates, although some historians say it was more likely one-third. It began in the early 1330s in China, which was one of the world’s busiest trading nations, causing it to spread rapidly to western Asia and Europe. Bubonic plague is characterized by fever, chills, vomiting, diarrhea, and a painful swelling of the lymph glands called buboes, the basis of its name. The disease also causes red spots on the skin that turn black. The plague made its way west across Asia to the Black Sea by 1347, spreading in 1348 to England, where people called it the “Black Death” because of those black spots. Each winter the disease would seem to disappear, but only because fleas—which were carrying it from person to person—were dormant then. Each spring, the plague attacked again, killing new victims. After five years, at least 25 million people were dead—actual death numbers, especially those of peasants, were not kept in Medieval Europe. Small outbreaks continued until it finally disappeared in the 1600s. Because of the tremendous loss of life, including much of the labor force, plus a doubting of religious beliefs (Why would God or the saints allow this to happen?), the Black Death had a profound effect on the men and women of medieval Europe. According to Lynn Harry Nelson, Emeritus Professor of Medieval History at the University of Kansas, it led to “new attitudes toward death, the value of life, and of one’s self. It kindled a growth of class conflict, a loss of respect for the Church, and the emergence of a new pietism (personal spirituality) that profoundly altered European attitudes toward religion. Still another effect, however, was to kindle a new cultural vigor in Europe, one in which the national languages, rather than Latin, were the vehicle of expression. An example of this
42 bodily deterioration as death approaches movement was Giovanni Boccaccio’s The Decameron, a collection of tales written in 1350 and set in a country house where a group of noble young men and women of Florence have fled to escape the plague raging in the city.”
bodily deterioration as death approaches
How each person dies is as unique as the individual who is dying, but knowing that certain events are typical can help a family prepare for the inevitable. Detailed studies of the experience of dying are fairly limited, but the available data indicate both a considerable degree of commonality in the dying process and enough variability that no uniform model of caregiving or preparing for death will suffice. Common physiological signs of imminent death include: Increased sleeping Often occurs during final days and hours, as if the body systems are shifting into slow gear prior to their shutting down. Decreased appetite Normal during the dying process, but often difficult for the family to accept and understand because the impulse is to force food on the loved one so he or she won’t starve. But the dying person likely will not be hungry, may not be able to swallow, and will not have the energy to eat. Providing food or liquids late in the dying process may actually harm the patient by causing fluid imbalances. Decreased thirst Thirst usually abates after appetite disappears. Even though the dying person will have no interest in drinking, the mouth and tongue may become dry. Forcing liquids down the throat may cause choking, so care givers suggest wetting the lips with ice or lemon glycerin swabs, swabbing the mouth with a moist sponge, putting a drop or two of lemon juice on the tongue to encourage saliva production, or using artificial saliva, which is available in drug stores. For some patients, hard candy may help. Incontinence Loss of bladder and bowel control frequently occurs as the person weakens. It can be embarrassing for the patient, but happens less frequently as the person eats and drinks less, and as the kidneys shut down.
Disorientation Referred to as “terminal restlessness,” confusion is common at the end of chronic illnesses, possibly resulting from electrolyte abnormalities. The patient will seem to be unable to find a comfortable or satisfactory position. Irregular breathing Long pauses between breaths; loud, raspy breathing; labored breathing; many breathing patterns may occur during the person’s final days and hours. Excessive secretions in the back of the throat or lungs will lead to noisy breathing that sounds like a rattle. Visual and auditory hallucinations Perhaps from dreaming; some say due to a foreshadowing of the next life, but it is not uncommon for the dying person to claim he or she has seen or even talked to someone who died long ago. Convulsions As cells deteriorate and the electrical impulses between cells begin to falter and misfire, convulsions can occur. Life may even end in a sudden seizure-like convulsion. Decreased clarity of sight The dying person’s vision will dim or become blurry. Mottled skin The skin tone will change and become darker in blotchy spots. Odor Necrotic (dying) tissue may cause a bad odor, which is, in fact, decaying flesh. Certain diseases, such as cancer and diabetes, may lead to insufficient blood flow, causing the affected parts of the body to slowly die and produce a foul odor. In one study of elderly persons on their last day of life, three out of four were confined to bed, and 40 percent had difficulty recognizing family. Fifty-five percent were unable to eat, 44 percent were short of breath, and 33 percent reported some pain. From her nursing experience, Gray observed that for many patients there is a sequence of physiological events during the dying process. • The patient’s sensation and power of motion as well as his reflexes are lost in his legs first and gradually in his arms. Pressure on the extremities, such as snug sheets, seems to bother patients. • As peripheral circulation fails, there is a drenching sweat, particularly on the upper parts of the body, and the body surface cools, regardless of
body donation 43 room temperature. Even though the body may feel cool to the touch, the patient will not be aware of being cold, because his internal temperature is quite high. • The dying patient always turns his head toward the light. As sight and hearing fail, the dying see only what is near and hear only what is distinctly spoken to them. • The dying patient’s touch sensation is diminished, yet the dying can sense pressure. Some patients do not like to be touched, preferring to blink their eyes to communicate. See also DYING PROCESS, THE. Collins, Lois M., and Elaine Jarvik. “At Death’s Door.” The Deseret News, September 26, 2002. Field, Marilyn J., and Christine K. Cassel, eds. Approaching Death: Improving Care at the End of Life. Washington, D.C.: National Academy Press, 1997. Gray, V. Ruth. “Some Physiological Needs,” in Dealing with Death and Dying. Springhouse, N.J.: Intermed Communications, 1983. Kessler, David. The Needs of the Dying. New York: HarperCollins, 2000.
body donation Also called whole body donation; the bequeathing of the body to be used for scientific purposes following death. Whole body donation has long been a vital practice for the purpose of medical research and education, but it has not had the widespread media attention as has the more recent ORGAN AND TISSUE DONATION. Most body donors fall into three categories: those who want their bodies to be of use to help others; those who had positive experiences with their physicians and so want to help students become physicians; and those who want to spare their families the financial costs of traditional burial. A person cannot choose to donate both organ and tissue for transplantation and whole body for research. Thousands of bodies are needed each year for such medical research and training. Body donation contributes to the development of drugs and therapies to treat such diseases as Alzheimer’s, Parkinson’s, multiple sclerosis, cancer, diabetes, and neurological disorders. Human tissue can also be
used to develop improved surgical instruments and techniques. Advance testing reduces the risk to living patients and speeds development of minimally invasive surgical procedures, helping reduce the length of hospital stay, pain, and recovery times. Medical education in the United States requires more than 8,000 bodies yearly for training tomorrow’s physicians, nurses, dentists, and other health professionals. Most donated bodies end up in anatomy classes, although some are used to teach surgery and other specialty fields. The number of body donors has increased significantly in the past few years, with the result that some medical schools may have an over-supply at any given time. Therefore, schools now reserve the right to decline a body donation if their facilities are temporarily full. Most will accept bodies only if prior arrangements were made; some only if the deceased had resided within the same state as the university. Other reasons why a medical school may not be able to accept a body for donation include: • condition of the body not suitable for their studies; for example, certain infectious or vascular diseases, open wounds (such as unhealed surgery or trauma), autopsy, and extreme malnutrition or obesity. • missing limb(s) or major organs. Because of institutions’ individual needs and requirements, it is important that anyone considering whole body donation following death first check with those medical schools of interest to see what their requirements are. Many schools post their body donation conditions on their university Web sites. According to the National Funeral Directors Association, medical schools in urban areas tend to be the ones more often oversupplied; therefore, they suggest that when arranging for a body donation, one should also specify whether or not the institution may send the body to another school that is undersupplied. Institutions are forbidden by law to pay for bodies, but they sometimes will cover some of the costs involved. For example, upon acceptance of a body donation, Dartmouth Medical School will be financially responsible for removal of the body from a hospital, transportation of the body to Dartmouth
44 body following death Medical School, permits for transportation and cremation, and cremation. Because of the potential savings in funeral costs, industry people say that the recent increase in body donation is more due to financial concerns than benevolent feelings. The family may still be able to receive the cremated remains for later memorial services, so more and more people are considering body donation as a way of retaining more of their money for their children and grandchildren’s use. People who donate their whole bodies usually are older and more concerned about the escalating costs of funerals. According to Guthrie, the typical person who leaves his body to science is white, married, and middle-class. About 95 percent are white and about 50 percent professional, with just a few more women than men. African-American participation is low because of the history of robbing slaves’ graves and the cultural importance of funeral ceremonies. Although all major religious groups have endorsed body donation, some sects do object to the practice. Universities participating in body donation for research and study are governed by strict ethical guidelines. These differ from state to state, but usually include no profiting from body procurement, protection of identities of donors, and control of students’ behavior around and use of the CADAVERs. Most medical schools will return the cremated remains of the donor at no charge to the family. Those not returned or claimed are usually buried in memorial gardens. Many schools hold annual services to honor those who have given the ultimate donation to their fellow man. The National Anatomical Board maintains a state-by-state listing of body donation programs in the United States, with full contact information, at http://www.med.ufl.edu/anatbd/usprograms.html. See also BROKERING BODY PARTS. Guthrie, Patricia. “Living with Death: The Ultimate Gift.” The Atlanta Journal and Constitution, November 29, 1998. Lee, Regina. Anatomical Gift: Whole Body Donation Guide. Atlanta: Consumer Education Services, 1997.
body following death
See DECOMPOSITION.
body snatching
The theft of corpses from graves and morgues. The term often refers to a grave-robbing scandal in Great Britain in 1827, before cadavers were legally available for dissection and study by medical students and when dealing in stolen bodies was highly profitable. William Hare and his accomplice, William Burke, robbed graves in order to sell the corpses and body parts to medical schools for use in autopsies. Not content with being limited to dead bodies, they began suffocating people in order to have more bodies to sell. They were caught, tried, and convicted in 1828. This and other similar cases led to the passage in Great Britain in 1932 of the Anatomy Act, which permitted the legal acquisition by medical schools of unclaimed bodies.
Bowlby, John (1907–1990) An English psychiatrist most noted as a leading researcher and teacher in the field of personality development. His “four stages of grief” model is of particular historical interest, contrasting with the better-known “five stages” model popularized by ELISABETH KÜBLER-ROSS. He believed that grief results from our biological need for security in the face of danger. Bowlby’s four stages are: • Phase of numbing that usually lasts from a few hours to a week and may be interrupted by outbursts of extremely intense distress and/or anger. • Phase of yearning and searching for the lost figure lasting some months or sometimes for years. • Phase of disorganization and despair. • Phase of greater or lesser degree of organization.
brain death Irreversible cessation of all functions of the brain. The term is now used to replace the traditional definition of death by cessation of heartbeat and respiration. Brain death is considered the legal definition of death, and all but six states have enacted such a statute. The remaining states recognize brain death by judicial determination. Both the American Medical Association and the American Bar Association approved this definition in 1988.
breathing patterns 45 In the most conservative definition of this term, it refers to whole brain death, cessation not only of higher cortical function, but of brain stem function (lower brain) as well. The Florida statute reads, “For legal and medical purposes, where respiratory and circulatory functions are maintained by artificial means of support so as to preclude a determination that these functions have ceased, the occurrence of death may be determined where there is the irreversible cessation of the functioning of the entire brain, including the brain stem, determined in accordance with this section. Determination of death pursuant to this section shall be made in accordance with currently accepted reasonable medical standards by two physicians licensed under chapter 458 or chapter 459. One physician shall be the treating physician, and the other physician shall be a boardeligible or board-certified neurologist, neurosurgeon, internist, pediatrician, surgeon, or anesthesiologist.” In most states, two physicians must declare a person brain dead before organ donation can proceed. A person’s heart can still be beating because of the ventilator and medications helping to keep the blood pressure normal. Modern resuscitation techniques can maintain the function of the heart, lungs, and other organs for days, weeks, and even months after the life-maintaining centers of the brain stem tissue have stopped functioning, which results in the medical dilemma of a dead brain in an otherwise living body. On the other hand, the development of transplant surgery and the need of viable organs have focused ethical and legal attention on the desirability of agreeing on the medical criteria of brain death because the same person can be considered legally dead if about to become an organ donor, and legally alive if not. In 1981 the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research developed standards for the determination of brain death which, with some modifications, are accepted worldwide. Brain death can be determined in several ways: no electrical activity in the brain (determined by an EEG), no blood flow to the brain (determined by blood flow studies), and absence of function of all parts of the brain—no movement, no response to stimulation, no breathing, no brain reflexes (determined by clinical assessment).
According to Steve Emery, procurement coordinator for the Iowa Statewide Organ Procurement Organization, there are several ways in which a person may become brain dead: • Anoxia caused by drowning, respiratory diseases, or drug overdose. • Ischemia—blockage of an artery leading to the brain or in the brain, heart attack (stoppage of the heart for a period of time), bleeding in the brain. • Intracranial hematoma caused by a head injury (a blow to the head) or a ruptured aneurism. • A gunshot wound to the head—causes destruction of brain tissue and swelling of the brain. • Intracranial aneurysm—the ballooning of a blood vessel supplying the brain, which can cut off blood supply or rupture. • Brain tumors that can destroy brain tissue and increase pressure within the brain. When any of the above occur, they cause swelling of the brain. Because the brain is enclosed in the skull, it does not have room to swell, thus pressure within the skull increases (this is “intracranial pressure”). This can stop blood flow to the brain, killing brain cells and causing herniation of the brain (pushing the brain outside of its normal space). When brain cells die, they do not grow back, thus any damage caused is permanent and irreversible.
breathing patterns During the dying process, breathing patterns often change. Breathing may become more irregular, with periods of rapid, shallow breath alternating with periods of no breathing. The dying person may also experience periods of rapid, shallow, pant-like breathing. These patterns are very common and are caused by excess carbon dioxide in the body as well as decreased circulation in the internal organs. The Hospice Care Network stresses that changes in breathing patterns are most likely more distressing to family and friends than to the dying person. “This is a natural pattern of breathing for someone in the process of dying. Elevating your loved one’s head and/or turning him/her on his/her side may help.”
46 brokering body parts According to death and bereavement counselor R. David San Filippo, the process of dying is similar to the process of birthing. “The dying person, very often, demonstrates similar breathing patterns as the expectant mother who is undergoing labor contractions. As death approaches, the dying person’s breathing becomes more labored and the fear of the unknown becomes more prominent. The expectant mother and her coach are taught breathing rhythms and mental exercises to ease the birthing process. Similar breathing and mental exercises can be taught to the dying person and his or her coach to ease the dying process.”
brokering body parts The legal buying of body parts or corpses from “donors” in order to resell body parts to private and public research programs. Federal laws prohibit buying or selling organs for transplant, but organs, tissue, and bones may be sold for research or educational purposes. This fact is raising ethical concerns in the medical community, especially among medical schools, which by law are not permitted to pay for bodies, nor to sell body parts for financial gain. Because most educational institutions are forbidden from paying, they are concerned that more bodies will go to those organizations that are permitted to pay, thus leading to a shortage of bodies for university medical schools. In some states, the demand for body parts already outstrips the supply. According to an article in The Business Journal of Portland, Oregon, “If a body and all its parts are fully marketed, it’s possible to reap more than $200,000, although few fetch more than $14,000 to $34,000 from nonprofits.” In an April 2000 series titled “Body Brokers,” the Orange County Register of California reported that brokered body parts will soon fuel an estimated $1 billion industry, with the “parts” being used for various benefits, from solving bladder troubles to repairing blown-out knees. In 2003 a man who supervised the donated-body program at the University of Texas Medical Branch at Galveston allegedly pocketed more than $18,000 from selling nails from the fingers and toes of cadavers to a Utah research laboratory, according to a newspaper report. The nails were used to test experimental medicines. In the Business Journal article, Dr. Kamen Schmidt, head of the Oregon Health and Science
University’s body donation program, expressed concern that “the same regulatory bodies aren’t overseeing the activities of private businesses in the same way they do for public agencies and tissue banks associated with medical schools and hospitals.” See also BODY DONATION.
Buddhism and death
Founded in India around 525 by Siddhartha Gautama, called the Buddha, Buddhism is both a religion and a philosophy, with an estimated 570 different varieties. Today there are more than 300 million Buddhists throughout the world, with most living in China and Japan, and with sizable populations in Thailand, Vietnam, and Myanmar. The American Religious Identification Survey (ARIS 2001) by the Graduate Center of the City University of New York found that the estimated number of American adults who identify themselves as Buddhist was 1,082,000, although other estimates have been between three and four million. Buddhists believe in REINCARNATION or rebirth. They believe that each of us is born again and again in a life cycle. One’s destiny in this life and the next is controlled by karmic law, and one accumulates good and bad karma through one’s deeds, words, and thoughts. Karma is the law that every cause has an effect, thus our actions have results. Tibetan Buddhists believe that the moment of death may actually lead to enlightenment, or at least to a transition period before the best possible rebirth. Upon death in this world, the spirit enters a place of rest before reincarnation in another life. Buddhists do not believe in eternal life in heaven or hell after death. Powers writes:
B.C.E.
From its inception, Buddhism has stressed the importance of death, since awareness of death is what prompted the Buddha to perceive the ultimate futility of worldly concerns and pleasures. Realizing that death is inevitable for a person who is caught up in worldly pleasures and attitudes, he resolved to renounce the world and devote himself to finding a solution to this most basic of existential dilemmas. . . . even today Buddhist teachers strongly advise their students to meditate on death and impermanence, since they are powerful counteragents to short-sighted concern with the present life and one’s own transitory happiness. Buddhist
Buddhism and death 47 teachers also point out that according to tradition Buddha began his teaching career discussing death and impermanence in his first sermon on the four noble truths, and he also ended his career with teachings on death and impermanence, which indicates how important they are in Buddhist teaching and practice. Tibetan Buddhism places a particularly strong emphasis on instructions concerning death, and Tibetan literature is full of admonitions to be aware of the inevitability of death, the preciousness of the opportunities that a human birth presents, and the great value of mindfulness of death. A person who correctly grasps the inevitability of death becomes more focused on religious practice, since he or she realizes that death is inevitable, the time of death is uncertain, and so every moment counts.
These beliefs are further explained by death and bereavement counselor San Filippo: Practitioners of Hinduism and Buddhism believe that death should be considered an ‘ever present companion’ in life. They feel the loss of their loved one, friend, or associate but they are confident in the dying person’s afterlife. They believe that a person is continuously reborn to a new life until the person’s spirit reaches the point of enlightenment and all knowing. The Hindus and Buddhists believe there are differences in the quality of deaths just as there are differences in the quality of births and lives. Dying is taught as part of his or her religion and culture so that when it is his or her time to die, he or she will die peacefully.
Buddhists believe human life is a life of stress and that the individual who kills himself is destined to remain in a hundred-year hell and cannot expect reincarnation in any form. Funeral Rituals and Mourning Although there are few formal traditions and it is essentially seen as a non-religious event, the Buddhist funeral is vitally important because it secures safe passage of the deceased into the next life. Rituals vary according to country, school (Theravada, Mahayana, and Vajrayana or Tantric), and type of Buddhism (e.g., Tibetan, Zen). The early Buddhists followed the Indian custom of burning the body at
death. The Buddha’s body was cremated and this set the example for many Buddhists, which has continued through even to those in the West. Not all Buddhists are cremated, according to Lin. He writes that some Chinese Buddhists, after the deceased has been buried in a coffin for eight or 10 years, will unearth the coffin. Then the bones will be gathered in an urn and buried for good. Buddhists believe that a person’s state of mind and final thoughts at death are of great importance, helping determine the condition into which he is reborn. Thus when someone is dying in a Buddhist home, monks come to offer comfort by reciting scriptural verses and chanting mantras to them. Because of this concern for the dying person’s comfort of mind, most Buddhists who have been diagnosed as terminal by the medical team in a hospital, will be taken home by their families where it is felt they will have greater peace of mind among their family and friends during their final days. Most Buddhists agree that the physical body is merely a shell, and concentrate on the spirit or mind. Because the state of mind of a dying person is considered most crucial to his transcendence or rebirth, it is emphasized in Chinese Buddhist culture that one’s final thoughts should be free from worldly attachments and be directed toward Buddha and Enlightenment. One’s family, relatives, and friends try to withhold expressions of grief so as not to disturb the peace of mind of the dying person; they instead attempt to help strengthen the dying person’s Buddhist aspirations by kind advice and Buddhist practice. Lin writes, “From the Buddhist point of view, even when the person is still dying, the consciousness is still in the process of separating from the body. During this process, it would be very painful if the process is disturbed by movement of the body or abrupt environmental changes. Hence, it is taught that the body should not be disturbed in any way for at least eight additional hours, preferably until it is cold all over. During this dying process, the accompanying chanting should continue.” The delay and chanting help to ease the deceased into the heavens. After death, the body is usually washed in a bathing ceremony, sometimes led by the male members of the family. During this ceremony, friends and relatives pour water over one hand of the deceased. After being bathed, the body is surrounded by wreaths, incense, and candles. A photo
48 burial of the dead person may be placed nearby. The body is never left alone, often staying with relatives until it is cremated. While the dead person is being prepared for cremation, the monks continue to chant in order to help the dead one’s good energies to be released from their fading personality. The monks then follow the family to the funeral, with relatives and friends giving food and candles to the monks. Goodwill is created by these gifts and it is believed that the goodwill helps the lingering spirit of the dead person. The celebration begins at the funeral, with bellringing, gongs, and offerings of incense from family and friends. Holy texts are chanted and the dead remembered with a type of eulogy. The climax of a Buddhist funeral is the cremation. In countries where it is allowed, family and friends may bring candles and torches to ignite the bottom of the pyre, which has been sprinkled with consecrated oil and which will consume the corpse. Family may send material goods along with the deceased to ensure comfort in the next life. Buddhists believe pregnant women should not attend cremation services, as the spirit freed from the body might enter the unborn. Funeral rites often include ritual meals and may last for several days. In the Tibetan Buddhist religious tradition, the 49th day after death represents the culmination of seven weeks of mourning during which the family members and friends of the departed come together once every week to perform death rites for the benefit of the deceased. On this final day of mourning, Tibetans conduct an elaborate religious ceremony, alerting the entire community to reflect upon the memory of lost ones and offer their prayers so that the deceased may have a peaceful passage into the next life. Becker, Carl B. Breaking the Circle: Death and the Afterlife in Buddhism. Carbondale: Southern Illinois University Press, 1993. BuddhaNet: Buddhist Information and Education Network. Available online. URL: http://www. buddhanet.net. Downloaded July 11, 2004. Hopkins, Jeffrey, tr. and ed. His Holiness the Dalai Lama: Advice on Dying. New York: Atria Books, 2002. Powers, John. Introduction to Tibetan Buddhism. Ithaca, N.Y.: Snow Lion Publications, 1996.
Lin, Yutang. Crossing the Gate of Death in Chinese Buddhist Culture. Yogichen. Available online. URL: http://www. yogichen.org/efiles/mbk16.html. Posted 1995. Rinpoche, Sogyal. The Tibetan Book of Living and Dying, Revised and Updated. New York: HarperCollins, 2002. San Filippo, R. David. “Acceptance of Death.” Lutz-San Filippo Counseling Library. Available online. URL: http:// www.lutz-sanfilippo.com/library/lsfacceptance death.html. Posted April 14, 1991.
burial
The process of disposing of a corpse in a
GRAVE or TOMB. Traditionally, burial has been used to
denote in-ground interment, although it is sometimes used for references to BURIAL AT SEA or TREE BURIAL (which usually is followed by in-ground burial). Some families also choose to bury the ASHES following CREMATION. In America today, burial is still the most common method of laying the dead to rest, although cremation is growing in popularity. In 2003 Nathan Walton, writing in the environmental magazine E, stated that “If laid out head to toe, every person buried last year in the United States would form a line stretching from Los Angeles to New York City.” The first evidence of deliberate burial is that of a Neanderthal a little more than 100,000 years ago. Scientists say this showed the first awareness of death, and thus an awareness of self. Anthropologists have discovered both individual and group burials, the latter indicating either unsealed pits for repeated use or the slaying of servants or family members to accompany the deceased on their afterdeath journeys. According to Doctor and Kahn, writing in The Encyclopedia of Phobias, Fears, and Anxieties, second ed. (Facts On File), “Burial customs and rituals indicate a desire to keep the spirits of the dead away from the living.” Ancient Greeks and Romans believed proper burial was crucial in order for the deceased to enter the land of the dead (Romans) or the afterlife (Greeks). Rural family burial grounds were used in America from the colonial period to the mid-19th century. Western European traditions dictated that the dead be interred in community burial grounds close to churches. However, the dispersal of the American colonial population among scattered farms and plantations may have led to the use of family burial plots.
burial at sea 49 Burials are often preferred over cremation because of family tradition, the need for a place to return to and care for which can give comfort to the survivors, and the permanence of a headstone. Some feel a burial is more personal, although it must be noted that burying cremated ashes can offer some of these same benefits. Direction of the body for burial is important for some groups; Muslims, for example, must be placed facing Mecca. Similarly, some African Americans believe it important that the dead be buried feet facing east, to allow rising at Judgment Day. Otherwise the person remains in the crossways of the world. See also AFRICAN AMERICANS AND DEATH; AMERICAN INDIANS AND DEATH; BURIAL MOUNDS; CEMETERIES; DIRECT BURIAL; FUNERAL; HAWAIIAN NATIVE BURIAL CUSTOMS. Colman, Penny. Corpses, Coffins, and Crypts: A History of Burial. New York: Henry Holt and Company, 1997.
burial at sea
The tradition of burial at sea is an ancient one, with a history as long as that of people going to sea. In earlier times, the body was sewn into a weighted shroud, usually sailcloth. The body was then sent over the side, usually with an appropriate religious ceremony. Many burials at sea took place during World War II when naval forces operated at sea for months at a time. Since World War II, many service members, veterans, and family members have chosen to be buried at sea. The U.S. Navy performs approximately 500 sea burials a year, but only while a navy ship is on official maneuvers; therefore, a body may remain in storage awhile before it is sent into the sea. Those eligible for a U.S. Navy burial at sea include: active duty, retired, honorably discharged veterans and their family members; U.S. civilian marine personnel of Military Sealift Command; and other U.S. citizens who are determined eligible by the Chief of Naval Operations because of notable service and/or other contributions to the U.S. government. Family members and friends usually are not permitted to attend navy burials at sea. Most at-sea burials by the navy are of cremated remains, but casketed remains may also be buried at sea. Bodies must be in weighted coffins with holes
drilled in them. Coffinless navy burials in which the flag-draped body slides over the side into the ocean are conducted only in wartime, The ship must be at least three miles from shore and in at least 600 feet of water. The families must pay the cost for military burials at sea, which varies from negligible to considerable, including shipping the remains to one of five authorized ports: Norfolk, Virginia; Jacksonville, Florida; San Diego; Bremerton, Washington; and Honolulu. Family members are not allowed on board during the service, in which a commemorative flag covers the remains until they are slid into the ocean. Within 10 days after the burial, a personal letter is sent to the next of kin, giving the date and time of committal and including photographs or video tape of the ceremony, the commemorative flag, and a chart showing where the burial took place. Anyone desiring burial at sea should indicate that preference in writing (in a will or other legal document). During funeral planning, the executor/ executrix of the estate should contact: Military Medical Support Office (MMSO) Mortuary Affairs, Bldg. 38H Great Lakes, IL 60085–5200 (800) 876–1131 (toll-free). Many sea burials happen from commercial and charter fishing boats. It is not uncommon for people who have spent many happy moments fishing or cruising to alert their families and their charter captains that, upon their deaths, they want to be buried at sea. Most frequently, these will be burials of cremated ashes, with families along to perform a remembrance ceremony and to scatter the ashes. Often, the sea burial will be delayed until a special occasion, such as the birthday of the deceased. Charter boats that offer burial at sea may charge $500 for a private voyage for a family group of six, or less than $200 for an unassisted burial by the captain, with a chart that documents the location and time of the burial service then sent to the family. Sea Services Worldwide Maritime Funeral Providers has posted on their Web site many pages of information on different religious views of burial at sea as well as historical references and prayers appropriate for sea burials. An example from their Catholic page: “The practice of scattering cremated
50 burial clothes remains on the sea . . . [is] not the reverent disposition that the Church requires. The cremated remains of the body may be properly buried at sea in the urn, coffin or other container in which they have been carried to the place of committal. When a body, or the cremated remains of a body are buried at sea, the Committal prayer found at number 406 § 4 is used.” Among the celebrities who have chosen burial at sea: John F. Kennedy Jr. (1960–99), Robert Mitchum (1917–97), Ingrid Bergman (1915–85), Rock Hudson (1925–85), Steve McQueen (1930–80), Vincent Price (1911–93), L. Ron Hubbard (1911–86), Jerry Garcia (1943–95), Janis Joplin (1943–70), Dennis Wilson (1944–83). Naval Historical Center. “Naval Ceremony for Burial at Sea.” Department of the Navy. Available online. URL: http://www.history.navy.mil/faqs/faq85-1.htm. Posted July 22, 1999. Sea Services. “Religious Views of Death, Cremation and Burial at Sea.” Sea Services Worldwide Maritime Funeral Providers. Available online. URL: http:// www.cburial.com/religion_menu.htm. Downloaded May 22, 2003.
burial clothes
Throughout history, ideas about “proper” burial clothing have changed according to each culture’s attitudes toward death and have reflected that culture’s lifestyle. • The ancient Greeks and Romans opted for expensive and lavish burial clothing. • In England, the Enactment of 1678 decreed that burial clothes should be of woolen cloth. Linen and silk were forbidden. • Until the 1920s in the United States, appropriate burial clothing for men and women was something in which to “sleep.” • In some Chinese cultures, daughters and daughtersin-law stitched burial clothes embellished with textile art for their parents and parents-in-law to signify respect for the deceased and to make them recognizable to their ancestors in the next world. • Hindus prefer simple, new, or clean clothing.
• Today, burial clothes may be any favorite item of clothing that the deceased wanted to be buried in. However, funeral directors state that women are more frequently buried in a nightgown, a wedding gown, or a dress suitable for church. The attire favored by men is a dress suit suitable for the office or church on Sunday. Although most people are buried in their own clothes, funeral directors will sell clothes made specifically for burial. According to Darryl J. Roberts, author of Profits of Death (Five Star Publications, 1997), “professionally manufactured burial clothing is routinely of lower quality (it doesn’t have to survive any washings or dry cleanings!) and often is made open in the back in order to facilitate placing on the body.” In her second book, The American Way of Death Revisited (Alfred A. Knopf, 1998), JESSICA MITFORD rather sarcastically quotes descriptions of merchandise offered in the “Practical Burial Footware” catalog used by funeral directors.
burial methods
Burial methods used worldwide over the ages have included discarding corpses, interment, tree burial, sea burial, suspended coffins, tombs, vaults, pyramids, grottoes, urns, and cremation. The latest burial method, GREEN BURIALS, is gaining popularity in Europe. By studying the various ways in which societies have buried and honored—or failed to honor—their dead, historians learn about a culture’s world views, social organization, and way of life, according to Mike Parker Pearson, author of The Archaeology of Death and Burial (Texas A&M University Press, 2001). In Hawaii, for example, remains of bodies uncovered in the last century have revealed a variety of burial methods, depending on the island and the area of burial and on whether the deceased was a commoner or royalty. And burial methods continue to evolve. The Nordic Business Report (June 4, 2001) reports that Swedish biologist Susanne Wiigh-Masak has found an environmentally friendly form of burial that quickly recycles corpses into soil enricher. “WiighMasak found that cremation emits poisonous gases with unknown effects while conventional burial
burial places 51 takes between 50 and 60 years for the body to fully decompose. In the new method the body is immersed in a bath of liquid nitrogen then transferred into a thin, easily degradable coffin.”
burial mounds
Artificial hills resulting from dirt and sand mixed with gravel and piled upon one or more corpses. After closing the grave on its occupant, soil would be heaped on the stones until it took the shape of mounds. In some types of mounds there are relatively medium-sized and large stones. Many cultures throughout history have used mounds for burial. Ancient burial mounds are visible in the distance from Stonehenge in southern England. Some burial mounds are known to be the tombs of ancient emperors or of members of powerful clans. Many early American Indian tribes buried their dead in mounds, and in some cases, a few remaining burial mounds are the only proof of certain tribes’ existence. They often are the oldest humanmade structures in an area, but many have disappeared over the years. At one time, for example, thousands of burial mounds dotted the landscape of the South Dakota plains, but many hundreds of them have been destroyed through farming and construction activities. Antiquarians in the late 1800s recorded that an Indian burial mound on the East Coast of Florida near Titusville peaked at 35 feet, was about 200 feet in diameter, and contained human bones and a piece of coquina (a soft, porous limestone, composed essentially of fragments of shells and coral) carved in the shape of a turtle. Since then there has been little scientific examination of its contents. Garlinghouse writes that ancient tribal burial mounds “are heavily concentrated along major river systems, flood plains, and minor tributaries. An estimated 10,000 mounds dot the landscape of the Ohio Valley, and nearly every major waterway in Illinois, Indiana, and Missouri is rimmed by clusters of mounds.” Thomas Jefferson was one of the first to scientifically excavate an American burial mound. He carefully searched through the layers of a mound on his property at Monticello near the Rivanna River in an effort to determine who built it. Gar-
linghouse reports, “In his Notes on the State of Virginia, he [Jefferson] concluded that Native Americans were wholly capable of constructing these monuments and, in particular, the Rivanna mound served as a burial place for many generations, a place ‘of considerable notoriety among the Indians’.” His determination was notable because many of that day (and even later) believed American burial mounds could not have been constructed by Indians and instead were evidence of a “lost race” or even the people of Atlantis. But Garlinghouse says, “Today, there is little argument about the origin of the mounds. Few believe a vanished race or mythical beings erected them. Archaeological evidence gathered since 1894 has firmly established their connection with the Native North Americans.” Garlinghouse, Thomas S. “Revisiting the Mound-builder Controversy.” History Today 51, no. 9 (September 2001): 38.
burial places
Individual and collective burial places can reflect and represent in important ways the cultural values and practices of the past that help instruct us about who we are as a people. “Burial places are important because it is on these spots that a people literally becomes one with the land. They reveal attitudes and reflect both fashion and tradition,” according to Anita Howard, University of Wisconsin at Madison. Perhaps nowhere is this better exemplified than among Native Americans. Joe Bruchac, American Indian author, explained in a newspaper article (The Saratogian, November 11, 2002) that Abenake and Mohawk natives buried their dead on high spots because hilltops are closest to the stars, enabling souls to leave Earth and enjoy happy reunions with their ancestors in the heavens. And the American Indians were not alone in appreciating the importance of a good location for burial places. During the dot.com golden days, a newspaper reported fierce competition in San Francisco for water-view burial plots, with prices for a family plot skyrocketing over $100,000. Today, most Americans are buried in CEMETERIES, but a couple of generations ago, in the more rural
52 burial rites landscape, it was common for Americans to be buried on the family homestead, in an area set aside for that purpose. Home funerals and family cemeteries were commonplace in America up until the early 20th century, when professional funeral directors and public cemeteries gradually supplanted the personal rituals. The need to be buried at home goes back through the ages and across cultures. In ages past, it was not unusual for royalty and the gentry (those most likely to travel) or for soldiers to be returned home if they died away from their home bases, even if that meant bringing back only the bones for final burial. Even in today’s more urban society, where families tend to be widely dispersed, when the time comes for a final resting place, the call is likely to be back home, albeit to a cemetery. For example, almost 20 percent of the 7,825 people who died in Collier and Lee counties in southwest Florida in 2001 were transported out of state, according to figures compiled by the Florida Department of Health. The numbers would be even larger were it not for the trend today toward more cremations. Modern families, along with transportation, have created additional burial location challenges. Zaslow explains, “As multiple marriages and blended families become more common, burial decisions are getting more complicated and emotional. The kids often want to reunite mom and dad in death, but the surviving stepparent has other ideas. About 60 percent of states give surviving spouses the right to make burial decisions, followed by the deceased’s adult children, adult grandchildren, parents and siblings. These dilemmas used to be rare but now happen once a week at some funeral homes.” See also TRANSPORTING HUMAN REMAINS. Schmadeke, Steve. “SW Florida’s Largest Air Freight Export? It’s, Well, Bodies . . .” Naples Daily News, March 31, 2003.
Zaslow, Jeffrey. “As More People Remarry, The Family Plot Thickens.” The Wall Street Journal, February 20, 2003.
burial rites
Rituals associated with burial; most frequently refers to the customary religious or other solemn ceremony performed by clergy or funeral professional or family. Military funerals also have their own prescribed rites.
burial-transit permit
The governmental form that usually accompanies a body to its final disposition. It may be attached to the death certificate or it may be a separate document. Depending on state law, a burial-transit permit may be issued by the organization that originates the death certificate, or by a licensed medical practitioner or medical examiner, upon request by a funeral director and after examination of the dead body. If the dead body is shipped by common carrier, the burial-transit permit usually must be enclosed in a strong envelope and attached to the shipping case. These permits provide a way for a state to record where final disposition takes place. Burial-transit permits may also provide valuable information to historians and genealogists. Morgan explains: “A transit permit may contain as little information as the deceased’s name, date of death, the date of transit, and the destination. Others . . . contain extensive information, including the name of the physician signing the death certificate, the date and cause of death, the undertaker and the means of conveyance. These documents could point you to the residence of your ancestor in census or land and property records, to mortuary records, or to the cemetery where he or she was buried.”
Morgan, George C. “Using Burial Permits as Resources.” Available online. URL: http://www.ancestry.com/ library/view/columns/george/829.asp?rc=locale%7E& us=0. Posted November 19, 1999.
C dentists about the anatomy of the body. Among the areas in which cadavers have assisted research are orthopedics and joint reconstruction. In a typical university, a single cadaver may be used for two years by the anatomy lab, which may have four bodies for use by 24 students at any given time. For many students their first contact with cadavers raises many emotions of grief and gratitude, and helps form their attitudes toward death. The American Medical Student Association’s Task Force on Death and Dying sponsors a project that helps students to find ways of expressing these emotions and to say “good-bye” to their cadavers at the end of a term—before the cadavers are disposed of in a humane fashion. With the growing sophistication of computerized images on CD-ROM and the Web, cadavers may become less important in the classroom. Some educators say the digital images are more than adequate for the general practitioner’s needs, with cadavers now needed only for training surgeons and radiologists, but others insist that only the actual cadaver provides the necessary kinesthetic learning and in-depth simulations. In a Newsweek article, Dr. M. Ashraf Aziz, a Howard University College of Medicine associate, is quoted as saying, “When the students encounter the cadaver, they are brought in very, very close contact with this [the preciousness of each individual life], and the memories remain over a lifetime.” According to the American Association of Anatomists, medical schools across the country have seen cadaver donations rise in recent years as the idea becomes more acceptable, most likely due to increased knowledge about the procedure and the value to medicine. Some people donate their bodies for use as research cadavers because of special
cachexia
Any general reduction in vitality and strength of body and mind resulting from a debilitating chronic disease; a loss of appetite and progressive wasting away due to loss of body fat and lean body mass (skeletal muscle) that is common in terminal illness. This wasting away results in dry and cold skin, as well as hair that falls out easily. Family members may have difficulty observing the decline. The family often responds to the problem by trying to coax or convince the patient to eat. But coping with cachexia is not simply a matter of eating more. Even if the person wants to eat, even if he or she tries to eat, even if the person is given nutrients through a stomach tube or intravenously, the condition will not be reversed. Numerous educational interventions are available for patients and families to treat and manage physical and emotional symptoms associated with cachexia in order to improve quality of life. However, these interventions have not been scientifically validated. Cachexia is one of nine ailments approved for medical marijuana usage in Oregon. Cachexia may be somewhat acceptable to patients and families, especially in the final days before death. However, it can interfere with functioning in the weeks and months before death when intervention might prolong independence. Cachexia can serve as a prompt for the physician to discuss end-of-life issues with the patient. Ward, Darrell E. “Coping with Cachexia.” Frontiers 6, no. 3 (Spring/Summer 1999).
cadaver
Dead human or animal body usually intended for dissection by researchers or medical students. For generations, cadavers have been a primary tool for teaching future doctors, nurses, and
53
54 cadaver dogs feelings for a university; others simply want to make the world a better place. Depending on the medical school, bodies are generally kept for two to three years, often in storage for the first year or so until a new class of students starts their studies. Once the students have finished with the bodies, many schools hold a nondenominational memorial service and bury the remains—unless the family requests that ashes be returned—in a university memorial garden. In addition to teaching medical students and aiding science researchers, cadavers contribute to society in other ways. They allow surgeons to learn or practice face-lift techniques; they perform as car crash testing dummies; and they help investigators discover causes of airplane crashes. See also BODY DONATION; GRAVE ROBBING. American Medical Student Association. “Funeral Service for Cadavers.” Available online. URL: http://www. amsa.org/dd/cadavers.cfm. Downloaded May 23, 2003. Green, Carolyn. “Whole Body Donation.” Medical Post, December 5, 2000. Jones, D. Gareth. Speaking for the Dead: Cadavers in Biology and Medicine. Brookfield, Vt.: Ashgate, 2000. Noonan, David. “Is the Cadaver Dead?” Newsweek, June 24, 2002. Roach, Mary. Stiff: The Curious Lives of Human Cadavers. New York: W. W. Norton, 2003.
cadaver dogs
Dogs trained to locate and follow the scent of decomposing human flesh. They are used in crime investigation work and in searching through debris for disaster victims. It was not until the late 1970s that handlers realized certain dogs can be trained to detect human remains long after death, despite burial or attempted concealment. Trained dogs are able to distinguish among human remains, animal remains, and a wide range of other odors that would normally be expected to distract them.
Rebmann, Andrew J., Marcia Koenig, Edward David. Cadaver Dog Handbook: Forensic Training and Tactics for the Recovery of Human Remains. Boca Raton, Fla.: CRC Press, 2000.
Canadian Hospice Palliative Care Association (CHPCA) A nonprofit association whose membership is comprised of individuals and hospice/palliative care programs from all 10 provinces and three territories. It provides leadership in hospice palliative care in Canada. Contact information: Canadian Hospice Palliative Care Association Suite 131C 43 Bruyère Street Ottawa, Ontario K1N 5C8 (613) 241–3663 or (800) 668–2785 (613) 241–3986 (fax)
[email protected] http://www.chpca.net
cannibalism The act or practice of eating the dead bodies of one’s own species. Also called necrophagia. A taboo in modern society, with claims that it both has and has not existed as a ritual practice, archaeological research suggests that cannibalism was once practiced by ancient societies in Africa, North and South America, the South Pacific islands, and the West Indies. Modern governments and missionaries have worked to eradicate any suspected cultural practices of cannibalism, although isolated cases of it for the purpose of self-preservation have been reported. Beth A. Conklin, an associate professor of anthropology at Vanderbilt University who studied the Warí natives in the Amazon rainforest, discovered that at one time the idea of leaving the body of a loved one in the dirt and letting it rot was as repulsive to the Warí as the idea of eating human flesh is to Americans. Cannibalism was a way for them to cope with grief and mourning. Salisbury writes: Conklin concluded that the practice was deeply rooted in the world view of the Warí and their understanding of how memories affect the grieving process. Like a number of other groups in South America, the Warí have rituals designed to help bereaved relatives cope with their sorrow by eliminating things associated with the dead, which provoke sadness by reminding survivors of their loss and also may attract the dead person’s ghost. To loosen attachments between the living and the dead, Warí burn all the dead person’s possessions,
capital punishment 55 including the house he or she lived in. They stop speaking the person’s name and change the appearance of the village and other places where the dead person spent time. “Consuming the body is part of this process as well,” Conklin says. “Far more than we do, the Warí see the body as a place where personality and individuality reside, and so, of all the things that remind you of dead people, the corpse is the strongest reminder. So they believed it was important to transform the corpse in order to help transform survivors’ memories of their dead relative.” This transformation involves developing new images of the dead person joining the animal world. According to their traditional beliefs, the spirits of dead relatives go to an underground world from which they return in the form of wild, pig-like animals called peccaries that are a major source of meat for the Warí. The ancestor-peccaries seek out hunters from their own families and offer themselves to be shot, ensuring that their meat will go to feed the people they love. This special relationship with peccaries is part of a native cosmology centered on ideas about communication and transformations between humans and animals. According to Conklin, the traditional mourning rites of the Warí emphasized helping survivors to gradually stop dwelling on memories of the past and develop new images of the dead rejuvenated as animals who feed the living. Eating the body at funerals affirmed these positive religious ideas. Reconsidering the range of meanings that consuming substances from the human body had for people in the past is important, Conklin says, because it challenges the negative stereotypes of cannibalism that have often been used to denigrate and stigmatize native peoples.
Other anthropologists since the 1970s have denied that cannibalism as a ritualistic behavior has ever actually taken place. The skeptics have produced alternative explanations for what has been offered as evidence of cultural cannibalism. These explanations have included isolated survivalism, false reports due to cultural slander, and invented reports by Europeans during the Spanish Inquisition in order to feel superior to other cultures. All agree that men have eaten men in times of extreme hard-
ship, such as famine or shipwreck, or in cases of “pathological lunatics,” such as Jeffrey Dahmer. Hodgkinson, Thomas. “The Essay: Cannibalism: A Potted History.” Independent, March 17, 2001. Salisbury, David F. “Giving Cannibalism a Human Face.” Exploration, Vanderbilt University. Available online. URL: http://exploration.vanderbilt.edu/news/ news_cannibalism_nsv.htm. Posted August 15, 2001.
capacity
In relation to end-of-life medical care, the ability of the patient to understand, weigh, reason, and appreciate the nature and consequences of health care decisions and to make an informed decision about the risk and benefit of available treatment options. Capacity requires that the person be able to comprehend his options, weigh those options and balance the positives and negatives, and then make a decision that coherently expresses his own values in relation to the options. The patient’s ability to understand other unrelated concepts is not relevant. Capacity is sometimes referred to as COMPETENCY, but it is not the same. Competency is a legal status imposed by the court. ADVANCE DIRECTIVES allow the patient to establish values and treatment preferences to be honored in the future when competency or capacity has lapsed. Capacity may also be considered when health care professionals determine whether or not to withhold the prognosis from dying patients.
capital punishment The use of execution as the consequence for a crime. In 2002, 71 persons in 13 states were executed—33 in Texas; seven in Oklahoma, six in Missouri; four each in Georgia and Virginia; three each in Florida, South Carolina, and Ohio; two each in Alabama, Mississippi, and North Carolina; and one each in Louisiana and California. This was five more than in 2001. Of those persons executed in 2002, 53 were white and 18 were black; 69 were men and two were women. Lethal injection accounted for 70 of the executions; one was carried out by electrocution. Thirty-eight states and the federal government in 2001 had capital punishment statutes. Capital punishment has long been a controversial issue—proponents say it deters crime and saves
56 capital punishment governments money; opponents have moral concerns or argue that every penal system is subject to error and arbitrariness, or that the social resources expended on capital punishment have outrun its benefits. The United States is the only Western nation to still impose capital punishment, with 75 countries (as of March 2001) abolishing it, including those in the European Union. A few countries have retained it for treason and war crimes. Native American tribes have long opposed the death penalty, refusing to allow tribal members to face capital punishment. Federal prosecutors handle serious crimes on American Indian reservations but cannot seek the death penalty unless tribes sign an accord allowing members to face execution. But in 2003, following several high-profile murders and an alarming increase in crime on Navajo land, the Navajo Nation president said he now supports the death penalty for especially violent murders on the reservation and also supports planned public hearings to reconsider the tribe’s long-held opposition. Support today among the Navajos is evenly divided, largely because many younger people do not view tradition as a reason to withhold the death penalty. History of Capital Punishment Capital punishment has been used since ancient times, and was practiced throughout Western Europe from the fall of the Roman Empire until recently. The first capital punishment statutes in the New World were instituted in the Massachusetts Bay Colony in 1636, and could be applied to idolatry, witchcraft, blasphemy, murder, assault, sodomy, adultery, rape, perjury, and rebellion. Fifty years later, William Penn restricted capital punishment to murder and treason. The first protestations in the United States against capital punishment were credited to a Dr. Benjamin Rush, who urged Benjamin Franklin, among others, to develop a penal system that would rehabilitate offenders rather than kill them. Internationally, Cesare Beccaria’s Essay on Crimes and Punishment in 1764 was among the earliest writings against capital punishment. On March 1, 1847, Michigan became the first English-speaking territory in the world to abolish capital punishment, but other states continued it. During the 1930s, more executions occurred
(1,667) than had in any previous decade. By the 1960s, all but 10 states had capital punishment offenses, but opposition against it was growing, with an unofficial moratorium being instituted in 1967. No executions occurred for 10 years until convicted murderer Gary Gilmore was executed by firing squad in Utah in 1977. In 1974 a majority of Roman Catholic bishops went on record opposing capital punishment. Then in 1980 they presented a more detailed statement outlining their reasons for opposing the death penalty. But they acknowledged that a position supporting the use of capital punishment is not incompatible with Catholic tradition. While most bishops, consistent with pastoral statements, oppose the death penalty, 19 percent say they do favor the “death penalty for first degree murderers.” During the 1990s more countries abolished capital punishment, Canada in 1998. In the United States, the debate continued; in 2002, the Supreme Court overturned the death sentences of dozens of convicted murderers, ruling that the death penalty must be imposed by juries and not judges. Today, those opposed to capital punishment are becoming even more vocal as DNA tests prove that many people have been falsely convicted of capital punishment crimes such as rape and even murder. Since 1973 more than 100 people have been released from death row after evidence of their innocence was uncovered. Michael Conlon, writing for the Reuters news agency in July 2003, noted that a quiet change may be taking effect in the middle of the noisy debate over capital punishment: “The number of new death penalty sentences being imposed each year has dropped by nearly half.” Reasons cited for the decline have included reluctance by juries fearful of putting innocent persons to death, increasing costs of death penalty trials, and the minefield of legal challenges that can get prosecutors reversed. Banner, Stuart. “The Death Penalty’s Strange Career.” The Wilson Quarterly 26, no. 2 (April 1, 2002): 70. DeFalco, Beth. “Navajo President Backs Death Penalty.” Associated Press, June 6, 2003. Gelin, Richard J. Politics and Religious Authority: American Catholics since the Second Vatican Council. Westport, Conn.: Greenwood Press, 1994.
caregiver burnout 57 caregiver
In the context of end-of-life care, a caregiver most often refers to the adult child, sibling, spouse, partner, or parent who is responsible for and attends to the personal needs of the dying individual in the home. In a few cases, the caregiver may be a long-time neighbor or friend, or it may be a volunteer. The term caregiver is also used for physicians, nurses, therapists, or social workers who work with long-term patients. Many available programs that deal with the terminally ill person at home require a designated caregiver to ensure proper care for the patient, and may deny care if there is not such a person. In addition to paid professional caregivers, there are over 23 million unpaid caregivers in America, according to the New Jersey Comfort Care Coalition. From their random sample survey, the National Family Caregivers Association (NFGA) determined that more than one-quarter (26.6 percent) of the adult population—or more than 50 million people—provide care for a chronically ill, disabled, or aged family member or friend during a single year. The NFGA also has found that caregiving is no longer predominantly a woman’s responsibility. Men now make up 44 percent of the caregiving population, according to NFGA’s survey in 2000. Estimates three years prior to that put men at only 27 percent. But there are some differences between women and men caregivers. A 2001 AARP study of baby boomer caregivers found men tend to spend less time than women talking to a loved one’s doctors, hiring aides, and helping with personal care. On the other hand, they match women in shopping and running errands and handling paperwork. Men surpass female caregivers in doing home repairs. Edgar writes that male caregivers often encounter biases, even among nurses and health care aides.
Edgar, Julie. “Caregiving’s Changing Face.” Detroit Free Press, December 5, 2002.
caregiver burnout
A condition resulting from chronic stress, characterized by physical and emotional exhaustion and sometimes physical illness. End-of-life caregivers, both professionals and family, face unique demands and stresses. All must cope daily with complex ethical and legal issues and the
devastating impact of watching patients die. Watstein writes, “It is not surprising that emotional responses to these stresses—sometimes referred to as ‘bereavement overload’ or ‘chronic mourning‘— should affect them. “The effects of burnout are both personal and institutional. Burned out caregivers may experience difficulty functioning, psychological distress, and poor health. Where the rate of staff burnout is high, institutions suffer low morale, communication breakdown, internal conflict, decreased productivity, absenteeism, and high turnover. “Strategies to address burnout include creating formal and informal support groups, developing coping and stress management skills, and providing professional development opportunities. All help individuals bolster or renew their inner resources. Institutional responses can also support both patients and staff, without requiring the costly overhaul of established systems. Such institutional responses include restructuring workloads, benefits and time schedules, improving communication at all levels, and acknowledging the difficulties facing staff.” Caregiving can consume every moment of the in-home caregiver’s time. Even in wealthy households, caregivers need help. Depression, exhaustion, money worries, and fears for the future often trouble both the recipient of the care and the caregiver. Studies have found that a caregiver who is under mental or emotional strain is at increased risk for illness and premature death. According to a study in the December 15, 1999, issue of the Journal of the American Medical Association, elderly caregivers with a history of chronic illness themselves who are experiencing caregiving related stress have a 63 percent higher mortality rate than their noncaregiving peers. Scannell warns, “Our hidden epidemic of caregiver stress is likely to expand as the population of baby boomers ages. Already, nearly one out of every four households is involved in caregiving for persons aged 50 or over, according to the National Alliance for Caregiving.” Family Caregiver Alliance. “Taking Care of YOU: Self-Care for Family Caregivers.” Family Caregiver Alliance. Available online. URL: http://www.caregiver.org/factsheets/ taking_care_of_you.htm. Downloaded May 28, 2003.
58 Carlson, Lisa Scannell, Kate. “Hidden Patients—Strain Takes Major Toll on Family Caregivers.” Alameda (Cal.) Times-Star, July 20, 2003. Watstein, Sarah Barbara. “Burnout and AIDS,” in The AIDS Dictionary. New York: Facts On File, 1998.
Carlson, Lisa
Author of Caring for the Dead: Your Final Act of Love, published in 1998, which covers rights and options for dealing with death-care providers and is generally considered the bible of personal burial practices. Carlson has helped consumers to understand their rights and avoid exploitation by the funeral industry at a vulnerable time in their lives. She also lobbies for reform of federal and state laws and regulations and more rigorous enforcement of existing protections.
casket Oblong box or chest in which a corpse or its remains are buried or cremated. Also called COFFIN. Casket is the term used by the American funeral industry; coffin is used in Great Britain. A casket often is the single most expensive item in a traditional, full-service funeral. Caskets vary widely in style and price and are sold primarily for their visual appeal. Typically, they’re constructed of metal, wood, fiberboard, fiberglass, or plastic. Although an average casket costs slightly more than $2,000, some mahogany, bronze, or copper caskets sell for as much as $10,000. There are lower cost alternatives, such as rental of a casket for viewing purposes only. Selecting a Casket When you visit a funeral home or showroom to shop for a casket, the FUNERAL RULE requires the funeral director to show you a list of caskets the company sells, with descriptions and prices, before showing you the caskets. Industry studies show that the average casket shopper buys one of the first three models shown, generally the middle-priced of the three. For this reason, it’s in the seller’s best interest to start out by showing you higher-end models. If you haven’t seen some of the lower-priced models on the price list, ask to see them, but don’t be surprised if they’re not prominently displayed, or not on display at all.
Traditionally, caskets have been sold only by funeral homes. But with increasing frequency, showrooms and Web sites operated by third-party dealers are selling caskets. You can buy a casket from one of these dealers and have it shipped directly to the funeral home. The Funeral Rule requires funeral homes to agree to use a casket you bought elsewhere, and does not allow them to charge you a fee for using it. No matter where or when you are buying a casket, it is important to remember that its purpose is to provide a dignified way to move the body before burial or cremation. No casket, regardless of its qualities or cost, will preserve a body forever. Metal caskets frequently are described as “gasketed,” “protective,” or “sealer” caskets. These terms mean that the casket has a rubber gasket or some other feature that is designed to delay the penetration of water into the casket and prevent rust. The Funeral Rule forbids claims that these features help preserve the remains indefinitely because they don’t. They only add to the cost of the casket. Airtight and watertight caskets do not prevent decomposition. However, if you will be shipping the body to another country, it is important to note that some countries require that the remains be shipped in a sealed casket. Most metal caskets are made from rolled steel of varying gauges—the lower the gauge, the thicker the steel. Some metal caskets come with a warranty for longevity. Wooden caskets generally are not gasketed and don’t have a warranty for longevity. They can be hardwood like mahogany, walnut, cherry, or oak, or softwood like pine. Pine caskets are a less expensive option, but funeral homes rarely display them. Manufacturers of both wooden and metal caskets usually warrant workmanship and materials. Caskets for Cremations Many families that opt to have their loved ones cremated rent caskets from the funeral home for the visitation and funeral, eliminating the cost of buying a casket. For those who choose a direct cremation without a viewing or other ceremony where the body is present, the funeral provider must offer an inexpensive, unfinished wood box or ALTERNATIVE CONTAINER that is cremated with the body.
catacombs 59 Under the Funeral Rule, funeral directors who offer direct cremations may not tell you that state or local laws require a casket for direct cremations, because none do. Special-interest Caskets In recent years, personalized “art caskets” have come into vogue. Some critics see special-interest caskets as classic expressions of baby-boomer selfabsorption and have called them unseemly, but that has not stopped this sub-industry from blossoming. Having a personalized casket has been referred to as the ultimate final statement. One Dallas art casket firm has decorated caskets with images such as Our Lady of Guadalupe, cherubs, the Kiss rock group, Gone Fishing scene, and AIDS awareness ribbons. For the golf fanatic, there’s a Fairway to Heaven casket; for the NASCAR fan, a casket with a checkered flag and the motto, “The Race Is Over.” Those with an irreverent sense of humor can choose the coffin that appears to be a brown paper parcel stamped with bright red letters: “Return to Sender.” The company offers nearly 40 designs and sells 2,500 a year, at an average cost of $3,000. To fill growing orders for personalized caskets, Batesville Casket Company, the largest casket building firm in the United States, in 1997 redesigned its production and distribution processes based on justin-time manufacturing methods. They fill special orders ranging from unusual fabric for a casket’s lining to an uncommon match between a particular exterior treatment and the interior decor, to customized engraving of casket lids.
catacombs
Underground tunnels or cemeteries, with recessed chambers where bodies are buried. Prior to Christianity, Romans practiced cremation. Catacombs were outside the walls of the city, as burial of bodies within the precincts of Rome was forbidden. The first catacombs were burial places for the Jews living in Rome, who retained their native method of burial, and imitated the rockgraves of Palestine by laying out cemeteries in the stonelike stratum of tufa around Rome. Jewish catacombs were laid out and developed before Christianity appeared in Rome. Two large Jewish
catacombs connected with the two chief Jewish colonies, and some smaller ones, also existed. Because the later Christians were regarded as a sect of the Jews, those Jews who were converted by the Apostles at Rome were buried in the catacombs of their fellow countrymen. Historians write that Christian converts of highest rank had their own tombs and permitted their fellow Christians to construct, in connection with these family tombs, places of burial modeled on the Jewish catacombs. Each catacomb would bear the name of its original family, or of the martyr who formed its nucleus. Over the course of 300 years some 50 catacombs, large and small, formed a wide circle around the city, the majority being about half an hour’s walk from the city gate. According to The Catholic Encyclopedia, “The early Christian name for these places of burial was koimeterion, coemeterium, place of rest. When, in the Middle Ages, the recollection of the catacombs passed away, the monks attached to the church of St. Sebastian on the Via Appia kept the ‘coemeterium ad catacumbas’ on this road accessible for pilgrims. After the rediscovery and opening of the other coemeteria, the name belonging to this one coemeterium was applied to all.” Roman catacombs were used as hiding places from persecution, as shrines to saints and martyrs, and for memorial services as well as for interment of the dead. Some of the catacombs were built on four levels, connecting an enormous system of galleries and linking passages with steep, narrow steps. Bodies of the deceased were placed in niches, 16 to 24 inches high by 47 to 59 inches long, cut from the wall of soft volcanic rock. The bodies were fully clothed, wrapped in linen, sprinkled with ointments to offset the decaying odor, and sealed with a slab inscribed with the name of the deceased, date of death, and a religious symbol. The number of graves in the Roman catacombs is estimated at two million, with guesses that if placed in a straight line they would extend the length of Italy. They comprise a space of more than 600 acres. The inscriptions, paintings, graffiti, and other artifacts discovered within the catacombs have aided historians in their studies of early Christianity. Once Christianity was established as the official religion of the Roman Empire, aboveground cemeteries became the custom.
60 catafalque When invading tribes began plundering the catacombs, the popes began transferring the martyrs’ bones to churches and filled in the entrances to the catacombs. They were forgotten until rediscovered by accident in the 1500s. A few small catacombs exist outside Rome, notably at Naples, on Sicily, Malta, and Sardinia, and in North Africa. The Catholic Encyclopedia, Volume 3. “Roman Catacombs.” Available online. URL: http://www.newadvent.org/ cathen/03417b.htm. Updated April 20, 2003.
catafalque A decorated BIER on which the coffin rests in state during a funeral. Also known as a casket standard. Catafalques are used to commemorate the death of high-ranking officials and heads of state. From the 14th through the 16th centuries, catafalques were lavishly decorated with fabrics and ornaments. According to the Grove Dictionary of Art, historical catafalques were “the visual and theological focal point of elaborate obsequies involving prayers, orations, a requiem mass and absolution rites. Their architectural forms and profuse decoration permitted complex iconographic programs that glorified the deceased.”
catafalque party Australian military honor guard mounted over a catafalque during a period of lying in state, during a military funeral in a church, at a memorial or special occasion, or during a memorial service in a church for a recently deceased distinguished personage. A catafalque party consists of four sentries, a waiting member in reserve, and a commander. If a catafalque party is requested to be mounted for an extended period, for example during a lying in state, then a series of watches is divided into vigil periods. A catafalque party must not be senior in rank to the deceased over whom it is mounted. Legend has it that the first catafalque parties guarded important and wealthy people’s coffins from thieves and vandals.
catastrophic death
An actuarial term used to denote a concentration of insurance claims from
such peacetime disasters as hurricanes, explosions, fires, floods, and earthquakes.
Catholicism and death
In the Roman Catholic Church, the body is usually prepared for burial by embalming; this is followed by a requiem Mass and burial, with visitation prior to the funeral. Additional masses may be conducted periodically over the next year. Catholic burial rites are presented by the church’s Order of Christian Funerals, stating, “The Church’s belief in the sacredness of the human body and the resurrection of the dead has traditionally found expression in the care taken to prepare the bodies of the deceased for burial.” The Order of Christian Funerals, a revision and adaptation of the Rite of Funerals, became effective in the United States on November 2, 1989. It gives three types of funeral celebration, corresponding to the three places in which they are conducted (the home, the church, and the cemetery) and according to the importance attached to them by the family, local customs, the culture, and popular piety. This order of celebration comprises the following principal elements: • The first element of the funeral rites is the Vigil or Wake service, which is celebrated in the funeral home in the presence of family and friends, and held in either the afternoon or the evening. • The Funeral Mass is usually celebrated in the morning, and may begin outside the church entrance, with the body of the deceased being first blessed with holy water, evoking the baptism. This is followed by the placing of the funeral pall, a large white cloth, on the casket. Both the sprinkling with water and the placing of the pall remind the faithful of the Baptism in which the person has already died and been raised with Christ. • The final station of the funeral liturgy is the Rite of Committal at the grave site, with the parish priest, deacon, or pastoral associate accompanying the family and friends to the cemetery. Catholics pray for the dead, asking God to take that person’s soul into heaven. Clark explains that those prayers begin even before death, when priests per-
cause of death 61 form the sacrament known as the Last Rites by giving communion—called Viaticum—to the person for the last time, which means, literally, “food for the journey.” Although at one time the Catholic Church did not permit cremation, the rule has changed in modern times but with caveats. “While cremation is now permitted,” the Order of Christian Funerals states, “it does not enjoy the same value as burial of the body . . . the church clearly prefers and urges that the body of the deceased be present for the funeral rites, since the presence of the human body better expresses the value which the church affirms in its rites. However, when extraordinary circumstances make the cremation of a body the only feasible choice, pastoral sensitivity must be exercised by all who minister to the family of the deceased.” The diocese of St. Petersburg, Florida, offers a “hierarchy” of sorts for Catholic funerals. It lists in order of preference those practices deemed acceptable by the Catholic Church for funeral liturgies: First Preference, funeral rites with the body present; Second Preference, funeral rites with the body present and cremation afterward; Third Preference, funeral rites with the cremated remains present. So while permitted, cremation is still uncommon for Catholics. The Catholic Church does not allow cremated remains to be scattered or kept in a home. The diocese of St. Petersburg explains the rationale for this: “The Church believes cremated remains of a body should be treated with the same respect given the human body from which they come. If cremated remains are not treated with honor and dignity, cremation can allow for disrespect of the human body. Scattering the ashes deprives loved ones and descendants of the opportunity to visit the remains where they can pray and reflect upon the life and memory of the deceased. Dividing the cremated remains among family and friends or keeping them in the home seems to diminish the respect for human life and shows a lack of proper respect and dignity for the dead.” See also CAPITAL PUNISHMENT; PURGATORY. Clarke, Elizabeth. “How Different Religions Handle Death of Faith and Forever.” Palm Beach Post, January 4, 2002.
cause of death The injury or disease that results in physical trauma to the body, leading to death. Oftentimes, death may be a result of multiple causes. For example, someone might have cancer, but the direct cause of death will be pneumonia. In recent years, the United States has seen a dramatic shift from the majority of the causes of death being due to infectious disease to being due to chronic disease, largely as a result of advances in treatment and technology. Most state laws require the physician in charge of the care of the patient for the illness or condition that resulted in death to complete the medical certification section on the DEATH CERTIFICATE. The physician is requested to state the diseases or conditions that caused the death and other significant conditions contributing to death. If a death occurs with no physician in charge of the care, the county coroner or the medical examiner may be responsible for determining the cause of death, either at the scene or during a subsequent autopsy. Several causes of death are typically listed on death certificates of elderly decedents. These are termed the “multiple cause of death” listings and are routinely recorded in U.S. national data files prepared annually by the National Center for Health Statistics (NCHS). Increasingly, death is due not to one single disease but to a complex set of interacting pathological processes. In recent years, several organizations, such as the National Institutes of Health, the American Medical Association, and the American Academy of Family Physicians, have expressed concern about the number of inaccurate and incomplete listings of cause of death being put on death certificates. Studies bear out their concern, as explained by Woods: “One analysis of 494 death certificates found that more than 40 percent were improperly completed. Another found that not a single death certificate out of 69 studied listed the correct underlying cause of death.” Accurate and full information regarding cause of death is vitally important, because government officials use the data in deciding what to spend on research for individual diseases. For tabulation purposes, causes of death are coded according to the International Classification of Diseases (ICD), which provides the essential ground rules for the coding and classification of cause-ofdeath data. The ICD was developed collaboratively
62 celebration days between the World Health Organization (WHO) and 10 international centers, one of which is housed at the National Center for Health Statistics. The purpose of the ICD is to promote international comparability in the collection, classification, processing, and presentation of health statistics. The United States is required to use the ICD under an agreement with WHO that has the force of an international treaty. The ICD has been revised approximately once every 10 years to stay abreast with advances in medical science and to ensure the international comparability of health statistics. The 10th and most recent revision, known as the ICD-10, was first used to classify deaths that occurred on January 1, 1999, and after. The previous version, the ICD-9, was used from 1979 through 1998. The ICD-10 is much more detailed, with about 8,000 possible categories for cause of death compared with 4,000 categories in the previous version. Stallard, Eric. “Underlying and Multiple Cause Mortality at Advanced Ages: United States 1980–1998.” North American Actuarial Journal 6, no. 3 (July 2002): 64–87. Woods, Michael. “Causes of Death Need to Be More Accurate.” Toledo Blade, November 20, 2002.
celebration days
Holidays, anniversaries, birthdays, and other personal family events can be very difficult, especially during the first year following the loss of a family member. It can take several years before a date that is particularly relevant to the deceased can be celebrated without renewed feelings of grief and sadness. Grief counselors suggest planning ahead as to the best ways of celebrating these days. Some people choose to make changes in the way they celebrate special days. Others decide to observe these occasions as they did before, but often they cannot follow the usual traditions, and the loss of the absent person will be especially noticed. The AARP Grief Program offers suggestions for helping others through celebration days: • Social and family gatherings can be overwhelming and seeing people is painful. It feels like there is nothing to celebrate when you are in tremendous pain. Some family members particularly affected may choose not to attend. If there is a
religious ritual connected to the event, you might suggest they attend that portion and not attend the “celebration.” • Try making a plan for the days, but know that you can change your mind and do something different. • Bringing up the subject of celebrations after losing a loved one can be hard but it is essential. If you do not do this, individual family members may be operating on different assumptions that could result in misunderstandings. Discuss ways to add a new element to celebrations or start a new tradition. Communicating each other’s thoughts and concerns is vital to prevent those misunderstandings and hurt feelings. • Include the memory of their loved one in some way (like lighting a candle for them). After the event, talk openly about how it went and plan any necessary changes for the next time. For any traditional celebrations following the loss of someone important to that celebration, you will want to continually ask yourself if you are following the tradition because you enjoy it, or because you feel it is something you “must do” or is it being done simply because “it has always been done that way”; and if so, what would be the issues if you changed or even eliminated the traditions. See also ANNIVERSARY REACTION. American Association of Retired Persons. “Helping Others Through Celebration Days.” Available online. URL: http://www.aarp.org/griefandloss/articles/44_a.html. Downloaded June 2, 2003.
cemeteries
Tracts of land set aside for interment of the dead; they may be either private or public. Federal, state, and local governments all have roles in regulating and overseeing funeral homes and cemeteries. Commercial cemeteries are regulated primarily at the state or local level. Cemeteries are regulated by state boards as well as other agencies, including offices of attorneys general and departments of health and insurance. The concept of commercial cemeteries was born in the 20th century, the brainchild of Hubert Eaton, who took over a rundown cemetery called Forest
cemeteries 63 Lawn in Glendale, California, and built it into Forest Lawn Memorial Park (the first cemetery to be called a memorial park), which has grown to five locations in Greater Los Angeles, with a total of around 1,500 acres—and a Forest Lawn “brand” that appears throughout the country. The earliest cemeteries in America were in churchyards, and thus prominently situated in the heart of the community. In the 19th century, when church graveyards began to fill up, health codes and zoning restricted new graveyards to less valuable locations, pushing them to the outer edges of town limits, but still usually owned and maintained by the town. In The American Way of Death Revisited (Alfred A. Knopf, 1998) JESSICA MITFORD writes, “Whether owned by church or municipality, the burial ground was considered a community facility; charges for graves were nominal, and the burial ground was generally not expected to show a profit.” Today’s commercial cemeteries sell not only burial space; they also charge for such extras as perpetual care, vaults, grave markers, flowers, statuary, and more. Thus, the cemetery can end up being the greatest of all final expenses. In a September 1999 report to Congress, the Government Accounting Office illustrated how diverse states are in protecting consumers in their death care transactions, using California, Florida, Maryland, New York, and Texas as examples. These five states differed in their approaches to regulation and oversight of those cemeteries within their jurisdictions, such as nonreligious, for-profit cemeteries. For example, in Maryland the office with regulatory responsibility for cemeteries was administered by a single individual with the authority to perform the numerous functions of the office. In New York cemeteries were regulated by a board consisting of the secretary of state, the attorney general, and the commissioner of health. The selected states also differed in terms of the requirements and restrictions placed on cemeteries, including restrictions on what goods and services cemeteries could sell. In addition, New York was unique among the five states in that it required that cemeteries under its jurisdiction be operated on a not-for-profit basis. In each of the selected states, the state regulatory agencies responsible for cemeteries had jurisdiction over only a fraction of the total number of cemeteries in the state because certain types of cemeter-
ies, such as religious and municipal cemeteries, were exempt from state regulation. Oversight of cemeteries is conducted primarily at the state or local level. The Federal Trade Commission’s (FTC) Funeral Rule applies only to certain cemeteries that sell both funeral goods and services. The FTC offers the following suggestions and warnings when considering cemetery choices: • When you are purchasing a cemetery plot, consider the location of the cemetery and whether it meets the requirements of your family’s religion. Other considerations include what, if any, restrictions the cemetery places on burial vaults purchased elsewhere, the type of monuments or memorials it allows, and whether flowers or other remembrances may be placed on graves. • Cemetery plots can be expensive, especially in metropolitan areas. Most, but not all, cemeteries require you to purchase a grave liner, which will cost several hundred dollars. Note that there are charges—usually hundreds of dollars—to open a grave for interment and additional charges to fill it in. Perpetual care on a cemetery plot sometimes is included in the purchase price, but it’s important to clarify that point before you buy the site or service. If it’s not included, look for a separate endowment care fee for maintenance and grounds keeping. • If you plan to bury your loved one’s cremated remains in a mausoleum or columbarium, you can expect to purchase a crypt and pay opening and closing fees, as well as charges for endowment care and other services. The FTC’s Funeral Rule does not cover cemeteries and mausoleums unless they sell both funeral goods and funeral services, so be cautious in making your purchase to ensure that you receive all pertinent price and other information, and that you’re being dealt with fairly. • All veterans are entitled to a free burial in a national cemetery, along with a grave marker. This eligibility also extends to some civilians who have provided military-related service and some Public Health Service personnel. Spouses and dependent children also are entitled to a lot and marker when buried in a national cemetery. There are no charges for opening or closing the grave, for a vault or liner, or for setting the marker in a
64 charitable gifting national cemetery. The family generally is responsible for other expenses, including transportation to the cemetery. For more information, visit the Department of Veterans Affairs Web site at www.cem.va.gov. To reach the regional VA office in your area, call (800) 827–1000. • In addition, many states have established state veterans cemeteries. Eligibility requirements and other details vary. Contact your state for more information. • Beware of commercial cemeteries that advertise so-called “veterans’ specials.” These cemeteries sometimes offer a free plot for the veteran, but charge exorbitant rates for an adjoining plot for the spouse, as well as high fees for opening and closing each grave. Evaluate the bottom-line cost to be sure the special is as special as you may be led to believe. Cemeteries in Canada have shown trends similar to those in the United States. Waugh writes, “Ethnic and sectarian cemeteries are common in Canada and have restrictions based on memberships. Cemeteries may impose time limits on the use of plots or may reuse a plot for a relative after a specified period of time. The trend away from ostentatious monuments continues, sometimes at cemetery insistence, but also because of high prices for marble. Some memorial parks with special theme areas or ethnic gardens have been established across the country, and costs for their plots include a percentage for perpetual care.” In Mexico City, overcrowding is a major cemetery issue. Bodies interred at any of the city’s 103 public cemeteries after 1975 must be exhumed after a minimum of seven years, to make room for another body. Weissert writes, “An estimated 1.4 million people occupy such temporary graves in Mexico City. Things are so cramped that a market has sprung up in which families willing to evict their loved ones can get thousands of dollars for the space.” Bodies buried before 1975 are allowed to rest permanently. In some cases, families who own a pre-1975 plot are cramming recently departed bodies into the same space. “Gravediggers exhume remains and let relatives choose either to cremate them or put what’s left of the corpse in a small box which is attached to the top of the new coffin.”
In Tokyo, cemetery plots are selling for as much as $86,800 (40-square-feet in size). In July 2003, the city government began taking applications for 50 newly opened spots at the famous Aoyama Cemetery—the first such sale in 43 years. Smaller plots there start at $30,000. In the United States, land value and scarcity is also beginning to play an important role for the future of cemeteries. In Vail, Colorado, for example, several efforts to build a cemetery have been defeated, with opponents saying there was not enough room and it did not fit the resort town’s image. In New York’s Westchester County, cemetery space is disappearing. Rubenstein writes, “Many of the county’s smaller cemeteries, both nonsectarian and those affiliated with a church or synagogue, are running out of space for in-ground burials. And although it is theoretically possible to create new cemeteries in Westchester, it is unlikely that they will be built because of the scarcity and high cost of undeveloped land.” Interment.net is a database that allows the browsing of 3,378,074 cemetery records across 7,144 cemeteries from around the world. Rubenstein, Carin. “Eternal Squeeze.” The New York Times, August 4, 2002. Waugh, Earle. “Funeral Practices.” The 1998 Canadian Encyclopedia. Historical Foundation of Canada. Available online. URL: http://www.thecanadianencyclopedia.com/ index.cfm?PgNm=TCE&TCE_Version=A&SectionId= 638711&MenuClosed=0. Posted September 6, 1997. Weissert, Will. “In Crowded Mexico City’s Cemeteries, Even Eternity Isn’t Always Permanent.” Associated Press Worldstream, May 28, 2002.
charitable gifting
Many people with charitable intentions want to share their good fortune and leave a legacy upon their death. Charitable gifting is a strategy that’s often suggested by estate and financial planners. Perhaps the most significant advantage is that federal estate taxes and probate costs will be reduced because the gifted property is no longer part of one’s estate. Charitable gifting may also reduce state inheritance taxes. Those people with the largest estates are often encouraged to adopt a pattern of charitable gifting for these reasons alone.
childhood grief 65 Among the choices and decisions one has to make when considering a charitable gifting strategy, are what to give and how to give. You would need to consult with a financial adviser, who would likely ask some of the following questions: Should you give cash, appreciated securities, or retirement assets? Should you make the gift outright, in trust, during life, or after death? Should you consider establishing your own private foundation?
Cheyne-Stokes respiration
Abnormal respiration in which periods of weak, shallow, slow breathing alternate with cycles of deep, rapid breathing. The condition is named after Scottish physician John Cheyne (1777–1836) and Irish physician William Stokes (1804–78), who both practiced in Dublin and wrote about the breathing pattern. Typically, over a period of one minute, a 10- to 20-second episode of apnea (temporary cessation of breathing) or hypopnea (slow and shallow breathing) will occur, followed by increasingly deeper and faster breathing. The cycle then repeats itself. Each cycle may last from 45 seconds to several minutes. Cheyne-Stokes respirations occur in congestive heart failure (CHF), more commonly in older patients with CHF, and may also be observed in patients suffering from diseases such as obesity that retard circulation or in patients who have taken drug overdoses, often occurring during sleep. They are seen especially in comatose patients. CheyneStokes breathing is also one of the signs of impending death. It is associated with depression of the respiratory center in the brain.
child death
In general, children are primarily at risk of unintentional injury-related death from: • motor vehicle injuries, which include children as occupants, pedestrians, and bicyclists; • drowning; • fire and burns; • suffocation; • choking; • unintentional firearm injuries;
• poisoning; and • falls. Injury rates vary with a child’s age, gender, race, and socioeconomic status. Younger children, male, minorities, and poor children suffer disproportionately. The majority of unintentional injury-related child deaths occur in the evening hours when children are likely to be out of school and unsupervised. Among American children ages one to four, unintentional injuries were the leading cause of death, followed by birth defects and cancer. From ages five to 14, unintentional injuries, cancer, and homicide were the leading causes of death. Between 1980 and 1997 the death rate declined by almost half for children ages one to four. Declines in deaths from unintentional injury and cancer were the main causes of the overall drop in mortality. The child death rate for African-American children ages one to four remains almost twice that for white children in the same age group (59.2 per 100,000 vs. 31.5 per 100,000), according to 1997 statistics. In 2000 the U.S. death rate for children between ages one and 14 was 27 per 100,000. Of the 10.8 million child deaths worldwide each year, about 90 percent—9.7 million—occur in 42 countries. Six nations account for half of the deaths— India, Nigeria, China, Pakistan, Democratic Republic of Congo, and Ethiopia. According to the World Health Organization, more than 10 percent of those deaths could be prevented if women in poor countries fed their infants breast milk and nothing else for six months. Another 7 percent of those deaths could be prevented if children in malaria-prone regions slept under insecticide-treated mosquito nets.
childhood grief
In the United States, 5 percent of children by age 16 years experience the death of a parent; countless others lose siblings, grandparents, or close friends. In the past, children were thought to be miniature adults and were expected to behave as adults. But when a family member dies, children react differently from adults in the family. The American Academy of Child and Adolescent Psychiatry (AACAP) explains that “Preschool children usually see death as temporary and reversible, a belief reinforced by cartoon characters who ‘die’
66 childhood grief and ‘come to life’ again. Children between five and nine begin to think more like adults about death, yet they still believe it will never happen to them or anyone they know.” In clinical studies, according to Syuber and Mesrkhani, the most commonly encountered issues include fear of being abandoned, fear that other loved ones or themselves might die, guilt over actual or imagined misbehavior, and difficulty in school or in bonding with new caretakers. AACAP warns that when a sibling or parent dies, the child’s shock and confusion is compounded if other family members, who may be so shaken by grief that they are not able to cope with the normal responsibility of child care, are not available to the child, or at least appear to the child to no longer be interested in him or her. They suggest: Parents should be aware of normal childhood responses to a death in the family, as well as signs when a child is having difficulty coping with grief. According to child and adolescent psychiatrists, it is normal during the weeks following the death for some children to feel immediate grief or persist in the belief that the family member is still alive. However, long-term denial of the death or avoidance of grief can be emotionally unhealthy and can later lead to more severe problems.
The funeral itself may be frightening, especially to a young child. When this is the case, the child should not be forced to attend. In its place, AACAP suggests helping the child honor or remember the person in some other way, “such as lighting a candle, saying a prayer, making a scrapbook, reviewing photographs, or telling a story.” On the other hand, a young child who wants to attend the funeral should not be forbidden. Syuber and Mesrkhani write: Excluding children from family grief rituals such as a funeral can be devastating, leading to a sense of isolation or even guilt. Children know that an important event is happening that they are inexplicably forbidden to attend. On the other hand, forcing children to sit in a room with hysterical adults or to kiss a dead body can leave lasting traumatic memories. It is best to let children participate in the decision whether they should attend the funeral. If they
go, someone should be with the child to provide emotional support and to leave with the child if necessary. If possible, this should be a close friend or family member who does not need to attend the funeral and can be fully available to the child.
Unlike adults, bereaved children do not experience continual and intense emotional and behavioral grief reactions. Children may seem to show grief only occasionally and briefly, but in reality a child’s grief usually lasts longer than that of an adult, most likely because a child’s ability to experience intense emotions is limited. Mourning in children may need to be addressed again and again as the child gets older. Because bereavement is a process that continues over time, children will think about the loss repeatedly, especially during important times in their life, such as going to camp, graduating from school, getting married, or giving birth to their own children. Children at different stages of development have different understandings of death and the events near death, and the National Cancer Institute (NCI) outlines the following Children’s Grief and Developmental Stages: Infants Infants do not recognize death, but feelings of loss and separation are part of developing an awareness of death. Children who have been separated from their mother may be sluggish, quiet, unresponsive to a smile or a coo, undergo physical changes (for example, weight loss), be less active, and sleep less. Age two to three years Children at this age often confuse death with sleep and may experience anxiety as early as age three. They may stop talking and appear to feel overall distress. Age three to six years At this age children see death as a kind of sleep; the person is alive, but only in a limited way. The child cannot fully separate death from life. Children may think that the person is still living, even though he or she might have been buried, and ask questions about the deceased (for example, how does the deceased eat, go to the toilet, breathe, or play?). Young children know that death occurs physically,
childhood grief 67 but think it is temporary, reversible, and not final. The child’s concept of death may involve magical thinking. For example, the child may think that his or her thoughts can cause another person to become sick or die. Grieving children under five may have trouble eating, sleeping, and controlling bladder and bowel functions. Age six to nine years Children at this age are commonly very curious about death, and may ask questions about what happens to one’s body when it dies. Death is thought of as a person or spirit separate from the person who was alive, such as a skeleton, ghost, angel of death, or “bogeyman.” They may see death as final and frightening but as something that happens mostly to old people (and not to themselves). Grieving children can become afraid of school, have learning problems, develop antisocial or aggressive behaviors, become overly concerned about their own health (for example, developing symptoms of imaginary illness), or withdraw from others. Or, children this age can become too attached and clinging. Boys usually become more aggressive and destructive (for example, acting out in school), instead of openly showing their sadness. When a parent dies children may feel abandoned by both their deceased parent and their surviving parent because the surviving parent is grieving and is unable to emotionally support the child. Ages nine and older By the time a child is nine years old, death is known to be unavoidable and is not seen as a punishment. By the time a child is 12 years old, death is seen as final and something that happens to everyone.
The NCI also advises that grieving children generally deal with three main issues: Did I cause the death to happen? Children often think that they have magical powers. If a mother says in irritation, “You’ll be the death of me” and later dies, her child may wonder if he or she actually caused the mother’s death. Also, when children argue, one may say (or think), “I wish you were dead.” Should that child die, the surviving child may think that his or her thoughts actually caused the death.
Is it going to happen to me? The death of another child may be especially hard for a child. If the child thinks that the death may have been prevented (by either a parent or a doctor) the child may think that he or she could also die. Who is going to take care of me? Since children depend on parents and other adults to take care of them, a grieving child may wonder who will care for him or her after the death of an important person.
Leavitt cautions that changes in a child’s behavior may be signs of anxiety, and that a pediatrician needs to be contacted if problems such as these persist for more than a month: Preschoolers bedwetting, thumb-sucking, or increased clinginess. School-aged children sleep disturbances, nightmares, poor concentration, aches and pains. Teenagers expressions of anger or sadness, problems with eating and sleeping, loss of interest in activities, new difficulties at school. Any discussion with children about death should include the proper words, such as “cancer,” “died,” and “death.” Substitute words or phrases (for example, “passed away,” “he is sleeping,” or “we lost him”) should never be used because they can confuse children and lead to misunderstandings. American Academy of Child and Adolescent Psychiatry. “Children and Grief.” American Academy of Child and Adolescent Psychiatry. Available online. URL: http:// www.aacap.org/publications/factsfam/grief.htm. Updated November 1998. Leavitt, Lewis. When Terrible Things Happen: A Parent’s Guide to Talking with Their Children. Johnson & Johnson Pediatric Institute. Available online, URL: http://www. jjpi.com. Posted November 7, 2002. National Cancer Institute. “Loss, Grief, and Bereavement.” Available online. URL: http://www.nci.nih.gov/ cancerinfo/pdq/supportivecare/bereavement/patient/. Updated July 9, 2003. Shriver, Maria. What’s Heaven? New York: Scholastic, 1999. Silverman, Phyllis Rolfe. Never Too Young to Know: Death in Children’s Lives. New York: Oxford University Press; 2000.
68 children’s questions and curiosity Syuber, Margaret L., and Violet Hovsepian Mesrkhani. “‘What Do We Tell the Children?’ Understanding Childhood Grief.” Western Journal of Medicine 174, no. 3: 187–191. Wolfelt, Alan D. “Helping Children with Funerals.” The Funeral Directory. Available online. URL: http:// www.thefuneraldirectory.com/helpchild.html. Downloaded June 5, 2003.
children’s questions and curiosity Children generally are far more comfortable talking about death and dying than are adults. According to Partnership for Children, an organization aimed at improving the emotional well-being of children and young people, “Children begin to develop great curiosity about death as soon as they begin to experience make-believe deaths in fairy tales, games and television shows. Children pretend to be dead in games, they kill ‘bad guys’ in video games and often discuss death freely with other children. Children usually talk as easily about death and dying as they discuss sports, favorite toys or foods they like. When someone they love dies, they are saddened by the death but may still have a lot of curiosity about the dead person and talk openly about their feelings. However, when children sense that an adult is uneasy discussing death, they may become uneasy about the discussion themselves.” In their booklet, “Caring About Kids: Talking to Children about Death,” the National Institute of Mental Health (NIMH) explains that young children’s natural curiosity about dead insects, flowers, and animals provides excellent opportunities to relate their questions to people’s deaths. Children may wish to examine the dead insects or animals closely, or they may ask detailed questions about what happens physically to dead things. Although this interest may seem repulsive or morbid to adults, it is a way of learning about death. Children should not be made to feel guilty or embarrassed about their curiosity. Their interest provides an opportunity to explain that all living things die and make room for new living things. This kind of answer may satisfy for the moment, or it may lead to questions about our own mortality. Honest, calm, and simple answers are called for. When talking to a very young child, it is important to keep in mind that only limited amounts of infor-
mation can be absorbed at a time. The child may listen seriously to your answers and skip happily away saying, “Well, I’m never going to die.” The NIMH cautions that you should not feel compelled to contradict the child or think that your efforts have been wasted. You have made it easier for the child to come back again when more answers are needed. David Kessler, writing in The Needs of the Dying (HarperCollins), says it is always best to answer children’s questions and explain about death before someone they love is dying and the situation becomes emotionally charged. “You can teach your child about funerals and rituals when a fish in the aquarium dies.” He says to help the child bury the fish in the backyard. “Show him how it’s done; let him see that we continue to respect bodies even after the soul has flown. If you send the child away, then quickly flush the fish down the toilet, you are teaching the child that beloved things simply disappear. But if you use the fish’s passing as an opportunity to discuss death, to place it in perspective and give the child an opportunity to grieve, you teach him how to grieve and to understand that death is always a part of life.” Boritzer, Etan. What Is Death? Santa Monica, Calif.: Veronica Lane Books, 2000. National Institutes of Health. “Caring about Kids: Talking to Children about Death.” Available online. URL: http://www.cc.nih.gov/ccc/patient_education/pepubs/ childeath.pdf. Posted 1995. Partnership for Children. “Talking to Children about Death.” Availableonline.URL: http://www.partnershipforchildren. org.uk/resources/discussing_death.html. Downloaded June 5, 2003.
choosing to stop eating and drinking
Occasionally a terminal patient will make a deliberate choice to stop taking in food and fluids. Lynn and Harrold explain that the patient may actually say he or she is doing this in order to speed up the dying process. “These are people in the last stages of a terminal disease. They do not suffer from a mental illness or other condition that has affected their reasoning. They are not suicidal in the usual sense of the word. They have concluded that the burden of living has gotten so great that they would rather die sooner.”
classification of deaths 69 The Compassion in Dying Federation lists it as one of the individual choices that can play a major role at the end of life: Another option available to people who are alert and able to make decisions is simply to stop eating and drinking. This also reportedly causes a peaceful and gentle death, though it takes a number of days and a strong determination. Again, this is your right, and the physician should provide sedation and pain medication to ensure comfort. Providing this symptom relief is generally considered ethical and legal because the sedation is given to relieve suffering, not cause death. Stopping eating and drinking is viewed as a variant of stopping other forms of life-sustaining treatment. It is therefore theoretically available to those who are not imminently dying. The process requires substantial self-discipline and usually takes one to three weeks, so there is an opportunity for a change of mind. There also is time for the family to come together and make the kind of psychological and emotional transition that is necessary for grief and adjustment to the loss of their loved one.
The choice to cease nourishment intake may be disturbing to family members and the medical personnel. Lynn and Harrold caution, “When a patient does make such a choice, the family and caregivers do need to be sure that the patient is not suffering from depression or inadequate pain control. Perhaps these conditions could be adequately managed and once under control the patient may no longer want to hasten death. It is very important to consider the conditions that the patient feels are too great a burden and see if they can be relieved. These burdens may be emotional issues such as discord in the family or spiritual issues. “After the emotional, spiritual and symptom management issues have been adequately addressed, the patient may still choose to refuse to eat. If this happens, it usually is in the very last days of the course of the disease. Just as a patient can refuse surgery or chemotherapy that might prolong life, a patient also can refuse to eat. However, finally, the patient’s decision binds everyone else.” Compassion in Dying Federation. “A Gentle Death: Freedom to Choose at Life’s End.” Available online. URL:
http://www.compassionindying.org/gentle_death.php. Downloaded June 5, 2003. Lynn, Joanne, and Joan Harrold. Handbook for Mortals: Guidance for People Facing Serious Illness. New York: Oxford University Press, 1999.
Christianity and death The name Christian covers a broad variety of cultures across all continents, and more than 200 different Christian denominations. Christian funeral rituals may differ among denominations, and even from church to church within a denomination. Christianity believes that life is a preparation for death, and that resurrection brings eternal life to the soul. Christians believe that the soul leaves the body after death, and that if the deceased followed the teachings of Jesus Christ, doing good things while alive, his or her soul will go to heaven. This issue of judgment has two meanings to Christians. First, each person is judged after death according to his or her deeds on Earth. Second, all of mankind will be judged together on the Day of Judgment or Second Coming, when Christ will again appear, this time to take the righteous into Heaven. At a typical Christian funeral, prayers, hymns, and eulogies are offered to remember and praise the person who has died. Many churches have specially written funeral services, as well as special readings, prayers, and hymns. Catholic churches hold a funeral Mass. After the service is performed in a church, the body is transported to a cemetery in a hearse, where a final, brief ceremony is held to remember the dead. The first Christians were buried outside a city, often in CATACOMBS. In time, the wealthy sought burial inside a church, usually under the floor, or in a crypt, preferably close to the altar. As interior space became scarce, churchyards were created. Christianity encourages the generosity of organ and body donation. See also CATHOLICISM AND DEATH; CEMETERIES; PROTESTANTISM AND DEATH.
classification of deaths The system for classifying cause of death, called the International Classification of Diseases (ICD), is revised occasionally to reflect changes in medical practices and new medical knowledge. As each ICD revision results in a
70 clinical death degree of discontinuity in cause-of-death statistics, a ratio of comparability is used to adjust for classification changes in the revisions. The history of the International Classification of Diseases extends back to the late 19th century, when the need for standardizing classification concepts and terminology was recognized by the medical community in Europe. Since 1900 the ICD for mortality has been modified about once every 10 years, except for the 20-year interval between the ICD-9 and ICD-10. Classification of the deaths and injuries that occurred as a result of the events of September 11, 2001, presented CDC’s National Center for Health Statistics (NCHS) with a dilemma. Under the then current classification systems for mortality and morbidity, the World Health Organization’s International Classification of Diseases, Tenth Revision (ICD-10), and the United States’ International Classification of Diseases, Ninth Revision, Clinical Modification (ICD9-CM), deaths and injuries associated with acts of terrorism could not be identified uniquely. For the new terrorism codes to be used for the classification of deaths and injuries, the incident in question must be designated as a terrorist act by the U.S. Federal Bureau of Investigation (FBI), which has jurisdiction over the investigation and tracking of terrorism in the United States. Information on causes of death is recorded on death certificates by physicians, medical examiners, and coroners, and reported to state vital statistics offices. Demographic information is provided by funeral directors, based on information from informants, who are usually family members. How deaths are classified is very important because the compiled statistics are used to determine where research time and funding is spent, and where changes in the law may need to be considered. Anderson, R. N., and H. M. Rosenberg. “Disease Classification: Measuring the Effect of the Tenth Revision of the International Classification of Diseases on Causeof-death Data in the United States.” Statistics in Medicine 22, no. 9 (May 15, 2003): 1551–1570.
clinical death Cessation of heartbeat and breathing, or when spontaneous circulation and respiration ceases (the date and time on the death certificate
when the patient is “declared” dead). A person is clinically dead if he is in cardiac arrest and his pupils do not contract when light is shone into them. Sherwin B. Nuland describes clinical death in How We Die: Reflections on Life’s Final Chapter (Vintage Books): “Clinical death is the term used to encompass that short interval after the heart has finally stopped, during which there is no circulation, no breathing, and no evidence of brain function, but when rescue is possible.” If this stoppage occurs suddenly, as in cardiac arrest or massive hemorrhage, a brief time remains before vital cells lose their viability, during which measures such as cardiopulmonary resuscitation (CPR) or rapid transfusion may succeed in resuscitating a person whose life has seemingly ended; the time is probably no more than four minutes. These are the dramatic moments we read about and see portrayed on our television screens.
closure
When used by family and friends following death of a loved one, it refers to the finalization or wrapping up of everything that can be done for the deceased so they can feel free to move onward with their own lives. In normal deaths, the funeral itself may provide closure. In violent deaths, such as by murder or terrorism, closure may not occur until those responsible for the death are apprehended, tried, and sentenced.
coffin A box or chest for burying remains; also called a CASKET. Coffin is the generic term in English, but casket has been used in America since the mid1800s—the reason for this usually being credited to the funeral industry’s attempt to “prettify” death by giving the coffin a name that at the time was used for containers holding jewels or other valuables. To some people, there is a difference between the two, with coffin meaning a hexagonal container with a specific shape—widest at the shoulders and narrower at the head and feet. Caskets, on the other hand, are rectangular, with straight sides and ends. The coffin shape is ancient and can still be seen as the predominant style in many European countries. According to Delaware Department of Transportation archaeologists, who excavated a colonial burial site, hexagonal coffins were used in America until the mid- to late 19th century. “During the
coma 71 Colonial period, coffin building in rural areas was done by a local carpenter, cabinetmaker, or wheelwright. Before beginning work, the carpenter needed only a few measurements from the corpse. Generally, two measurements were sufficient—the length from head to foot, and the width at the shoulders or elbows. The coffin itself was built of six pieces—bottom, head, foot, two sides, and top or lid, and the only tools required were a few saws, planes, a hammer, and various marking tools.” Delaware Department of Transportation. “Archaeology— An 18th-Century Family Cemetery, Sussex County, Delaware.” Available online, URL: http://www.deldot. net/static/projects/archaeology/cemetery/cemetery.html. Downloaded June 13, 2003.
coffin birth A term used by coroners for a spontaneous birth by a dead pregnant woman. It occurs when the gas that builds up naturally in the abdomen and pelvic area of a decomposing body produces enough pressure to propel the unborn child through the birth canal and out of the corpse. The term no longer receives much usage; it was coined before bodies were embalmed. If a body is properly embalmed, it’s not likely to happen; for this reason, coffin birth is no longer described in medical books. The term became part of the daily news following the disappearance of the pregnant Laci Peterson in California on Christmas Eve, 2002, when several months later her torso washed ashore in San Francisco Bay separately from the body of her unborn son, which was much less decomposed. Experts suggested that a coffin birth may have taken place. When a pregnant woman dies and her body is not embalmed, it can take weeks or even months for a postmortem birth to take place; the Peterson baby appeared to have been “born” in April 2003. ABC News quoted experts as saying, “If someone is pregnant and decomposing in a temperature of 110 degrees, it will happen much more quickly than if they’re decomposing in a temperature of 40 degrees.”
coins placed on the eyes of the dead According to the Museum of Funeral Customs, Springfield, Illinois, this custom arose from the use of coins by
undertakers prior to the late 1800s to gently hold the deceased’s eyelids closed until the muscles and tissues set in a fixed position. “Sometimes, the coins were left in place even though they were no longer needed. Without knowing the exact reason for using the coins, people explained their presence in another way. Harkening back to the ancient [Greek and Roman] mythology, it was believed that the deceased needed money in the afterlife, especially to pay Charon who operated the ferry across the River Styx, which separated the earthly world from the underworld. Other cultures also share the belief that the dead may have to provide a payment so they are thus prepared.”
columbarium A structure, sometimes a VAULT, with niches (small spaces or compartments) for holding urns or other approved vessels containing cremated remains. It may be outdoors or indoors as part of a mausoleum or chapel. In many instances, a columbarium is found underneath a cathedral. Consumers’ Research Magazine cautions that “placement in a columbarium adds to the costs” of a funeral.
coma A state of unresponsive unconsciousness, with total unawareness of self and surroundings. A person in a coma cannot be aroused even by powerful stimulation, and does not respond to external stimuli (such as a pinprick or a shout) or to inner needs (such as a full bladder). Turkington writes, “A patient may remain deeply comatose but alive for many years if the brain stem is still functioning. Once brain damage spreads to the lower brain stem laryngeal function (coughing and swallowing), breathing will begin to deteriorate. Coma may occur in various degrees of severity. In mild forms, the patient may respond to stimuli by speaking a few words or moving a body part. In more severe cases, the patient cannot respond in any way. But even deeply comatose patients may continue to breathe, cough, yawn, blink, or exhibit eye movements. These automatic responses indicate that the lower brainstem, which controls these responses, is still functioning.” Turkington, Carol. “Coma,” in The Brain Encyclopedia. New York: Facts On File, 1996.
72 comfort care comfort care
Distinguished from care with the goal of curing, comfort care seeks primarily to make a patient comfortable even when no cure is possible. Comfort care emphasizes good pain management, patient’s wishes, and adequate spiritual and psychological support at the end of life. Examples of comfort care: medication to relieve pain or fever, oxygen to make breathing easier, keeping the patient clean and dry, turning the patient over, keeping a person’s lips or mouth moist. In their study, Tschann et al. concluded that family involvement before death may reduce the use of technology and increase the use of comfort care as patients die. Sometimes the term “comfort care” is used interchangeably with “palliative care”; some people use “comfort care” only for people near death. See also PALLIATIVE CARE; PALLIATIVE CARE FOR CHILDREN.
Tschann, J. M., S. R. Kaufman, and G. P. Micco. “Family Involvement in End-of-Life Hospital Care.” Journal of the American Geriatrics Society 51, no. 6 (June 2003): 835–840.
communication with the dead Followers of modern Spiritualism believe that communication with the so-called dead in the spirit world is both possible and necessary to learn God’s natural laws. According to Heinen, “Spiritualism often describes itself as a science, a philosophy, and a religion based on the continuity of life as proved through mediumship. It also has been a lightning rod for skeptics and debunkers who are critical of the beliefs themselves, or of unscrupulous practitioners faking sounds and apparitions during séances to take advantage of vulnerable, grieving people.” Interest in the possibility of communicating with the dead is escalating. The National Science Foundation found in its “Indicators 2002” survey that in 1990 18 percent of Americans believed people could telepathically reach out to the deceased. The figure in its most recent survey stands at 28 percent. Virtually all civilizations have had some form of belief in an afterlife. According to the Worldwide Church of God, the idea that the spirits of people who have “passed over” can make contact with the living is popular today mainly because of the modern craze
for “channeling”—part of the fast-growing “New Age” movement, a modern-day mysticism that draws from Buddhism, Hinduism, and Western occultism, among other traditions. Classic channeling—sometimes called trance channeling—is a paranormal experience alleged to be contact between a human being and an entity from the spirit world. Information is communicated to or through a human being from another level of consciousness. A spirit enters the mind of the channel, who becomes its “mouthpiece.” The spirit then offers advice and counsel on everything from medical problems to financial investments to improving one’s love life. Over the centuries, channels have been called by a variety of names: shamans, medicine men, witch doctors, masters, mystics, mediums, and oracles. The famous stage magician Harry Houdini spent 30 years investigating alleged examples of communication with the spirit world. He said he had not “found one incident that savored of the genuine.” He claimed he could duplicate any effect produced in a seance by purely physical means, and he exposed some extremely clever frauds and skillful illusions. Concealed microphones, wires, mirrors, projectors, ventriloquism, sleight of hand, and other ingenious techniques were used to deceive the gullible. But there are serious mediums—or channelers, as they are called today—who have stood up under the most rigorous scrutiny of investigators. Despite meticulous testing, they have given no evidence of any type of fraud. The inventor Thomas Edison conceived the possibility of instrumental communication with the dead. But experimenters had to admit failure in establishing an electronic link with the spirit world—until the late 1950s. In 1959 the Swedish filmmaker and painter Friedrich Jurgenson played back tapes of birdcalls he had recorded in a Swedish forest. To his astonishment, he heard what he believed to be his dead mother’s voice on the tape. This began a series of experiments to record spirit voices. Hundreds of voices have been heard on his tapes. Other researchers claim to have recorded the spirit voices of Churchill, Hitler, Stalin, Tolstoy, and many other famous men and women of history. The voices usually require extreme amplification, and often the
complicated grief reaction 73 language patterns are disjointed and confused. Yet something is unquestionably coming across. Channeling, mediumship, and spiritism are often nothing more than a fraud perpetrated on gullible people. Sometimes it is the channel who is gullible. In some cases, sincere channels may believe they are being used by separate, otherworldly entities, but in actuality are not. Psychic researchers believe that channeling is often a self-generated experience. The channels are simply “going within.” It is their own inner subconscious speaking, not some outside entity. Sometimes it is not a matter of conscious fraud. Heinen, Tom. “More Taking Interest in Spiritualism.” Milwaukee (Wisconsin) Journal Sentinel, September 28, 2002. Worldwide Church of God. “Communication with the Dead: Is It Possible?” Available online. URL: http:// www.wcg.org/lit/booklets/spirit/spirit4.htm. Downloaded June 13, 2003.
Compassionate Friends, Inc., The (TCF) A national nonprofit, self-help support organization that offers friendship and understanding to bereaved parents, grandparents, and siblings. There is no religious affiliation and there are no membership dues or fees. The mission of the Compassionate Friends is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to help others be supportive. The Web site holds regular live chats for those dealing with general bereavement issues, pregnancy loss and infant death, men’s chat, siblings, no surviving children, bereaved one year or less. Members of three or more families who are grieving the death of a child (grandparents, siblings, or other family members) may apply to establish a TCF chapter in their community. Contact information: The Compassionate Friends, Inc. P.O. Box 3696 Oak Brook, IL 60522–3696 (630) 990–0010 or (877) 969–0010 (toll free) (630) 990–0246 (fax)
[email protected] http://www.compassionatefriends.org
Compassion in Dying Federation
Provides national leadership for client service, legal advocacy, and public education to improve pain and symptom management, increase patient empowerment and self-determination, and expand end-oflife choices to include aid-in-dying for terminally ill, mentally competent adults. Contact information: Compassion in Dying Federation 6312 SW Capitol Highway Suite 415 Portland, OR 97239 (503) 221–9556 (503) 228–9160 (fax)
[email protected] http://www.compassionindying.org
competency
A legal term referring to a person’s ability or lack thereof to comprehend. When a person is judged “competent,” it indicates that he or she has the mental status to manage his or her own affairs. The term competence is used to refer to the legal standing of such a person. Only a court can find an individual to be incompetent and assign that person a guardian to manage his or her affairs. If a person is declared legally incompetent, the right to make decisions is lost. A physician who finds that a patient is mentally incapacitated to make his or her own decisions, however, is not required to have a court declare the patient incompetent in order to consult the patient’s living will or authorized decision-maker for medical decisions. The New Jersey Comfort Care Coalition cautions that “some legally incompetent people have the capacity to understand some things, and their feelings and opinions should be respected during any decision-making process.” Competence and capacity or incompetence and incapacity are often used interchangeably, so it is important to determine which someone means. See also CAPACITY.
complicated grief reaction
Prolonged grief lasting longer than 12 months, with specific symptoms of psychological trauma and depression. The psychological trauma symptoms include: intrusive images or thoughts, especially about the deceased person;
74 condolence letters severe emotional reactions (e.g., numbness, crying, startle reaction); depressive symptoms; neglect of adaptive strategies at work or home; poor personal hygiene; low energy; feeling excessively alone and empty; diminished sense of self-esteem; guilt; excessive avoidance of tasks reminiscent of the deceased person; unusual sleep disturbances. Complicated grief reactions require more complex therapies than uncomplicated grief reactions. Adjustment disorders (especially depressed and anxious mood or disturbed emotions and behavior), major depression, substance abuse, and even post-traumatic stress disorder are some of the common problems of complicated bereavement. Complicated grief is identified by the extended length of time of the symptoms, the interference caused by the symptoms, or by the intensity of the symptoms (for example, intense suicidal thoughts or acts). Complicated or unresolved grief may appear as a complete absence of grief and mourning, an ongoing inability to experience normal grief reactions, delayed grief, conflicted grief, or chronic grief. Factors that contribute to the chance that one may experience complicated grief include the suddenness of the death, the gender of the person in mourning, and the relationship to the deceased (for example, an intense, extremely close, or very contradictory relationship). Grief reactions that turn into major depression should be treated with both drug and psychological therapy. One who avoids any reminders of the person who died, who constantly thinks or dreams about the person who died, and who gets scared and panics easily at any reminder of the person who died may be suffering from post-traumatic stress disorder. Substance abuse may occur, frequently in an attempt to avoid painful feelings about the loss and consequent symptoms (such as sleeplessness), and can also be treated with drugs and psychological therapy. Huffman, explains that “a complicated grief reaction is characterized by at least three of the following four symptoms on a daily basis or to a marked degree: (1) intrusive thoughts about the deceased, (2) yearning for the deceased, (3) searching for the deceased, or (4) excessive loneliness. If the first criterion is met, the physician should find out if the patient has four of the following eight symptoms at least daily or to a marked degree: (1)
purposelessness/feeling of futility, (2) sense of numbness or absence of emotional responsiveness, (3) disbelief about the death, (4) sense of life being meaningless, (5) feeling that part of oneself has died, (6) lost sense of trust or control, (7) assuming harmful behaviors of, or related to, the deceased, or (8) excessive irritability or anger about the death. These symptoms must last for at least six months and cause functional impairment to be classified as a complicated grief reaction.” Huffman notes that these criteria do not appear in the Diagnostic and Statistical Manual of Mental Disorders, 4th ed., but, “according to expert opinion, represent a psychiatric disorder with distinctive symptoms and outcomes.” Huffman, Grace Brooke. “Family Physicians Working with Bereaved Patients.” American Association of Family Physicians. Available online. URL: http://www.aafp.org/ afp/20020301/tips/12.html. Posted March 1, 2002. National Cancer Institute. “Loss, Grief, and Bereavement.” Available online. URL: http://www.nci.nih.gov/ cancerinfo/pdq/supportivecare/bereavement/patient. Updated July 9, 2003.
condolence letters At one time, people sent letters of condolence to families who had lost loved ones; today, special “greeting” cards are more commonly sent, although a personal letter of condolence may be considered more meaningful. The military and businesses are most likely to send condolence letters today. After studying thousands of condolence letters and analyzing their structure, The Western Washington University Counseling Center identified seven key components: 1. Acknowledge the loss. 2. Express your sympathy. 3. Note special qualities of the deceased. 4. Recount a memory about the deceased. 5. Note special qualities of the bereaved. 6. Offer assistance. 7. Close with a thoughtful word or phrase. They also suggest three optional components:
coping with the death of a child 75 1. Share your philosophy of life or provide a religious commentary. 2. Share your own grief experiences, but don’t compare them with those of the bereaved. 3. Include a quotation, reading, or historic letter. Western Washington University Counseling Center. “Composing Letters and Notes of Condolence.” Available online. URL: http://www.wwu.edu/chw/counseling/ specific_topics/st_grief/condolence.html. Downloaded June 14, 2003.
Confucianism and death
Confucianism is not a religion in the sense of man relating to the Almighty, but is rather an ethical system and philosophical doctrine teaching man how to get along with his fellow man. A religion of optimistic humanism, its founding goes back to one man, known as Confucius, who was born in China in 550 B.C.E. The teachings of Confucius emphasize love for humanity, with high value given to learning and to devotion to family (including ancestors), peace, and justice. Confucianism holds the view that the “problem” of human life is more important than the “problem” of human death, and so speaks little of death. Added to that, according to Confucianism, is the fact that whether a person lives or dies is determined by the decree of Heaven, and thus beyond our control. Because death is fate, there is no point in worrying about it. Death is the time to rest; a release from the labor of this world. Along with that, Confucianism strongly believes that both life and death should serve morality. Therefore, because our death should have a moral significance, we should spend our life preparing for a moral death by giving our life to a moral cause. And if we live our life altruistically, we will not be worried about death. Confucianism attempts to rise above the negativity and destructiveness others feel about death. Instead, it teaches that even though the physical body will be gone, the person can attain immortality through his or her lasting influence on subsequent generations. Confucius teaches that until one understands fully about life, one cannot understand death. Because Confucianism places more emphasis on responsibility in one’s lifetime, it pays little attention
to the world after death. Life in Confucianism is to fulfill one’s responsibility to society; if that is done, then the person will die “immortal.”
coping with the death of a child A child’s death is particularly tragic, with the grief period likely to be especially intense and prolonged. As Goodman et al. found in their study of the literature, losing a child “eclipses and diminishes” other losses. A young child’s death is usually felt to be unfair. Common thoughts that grieving parents must deal with include: • Children aren’t supposed to die. It’s not natural. • My son (or daughter) never had an opportunity to experience a full life. • My child was innocent and didn’t deserve to die. The National Mental Health Association adds, “A child’s death arouses an overwhelming sense of injustice—for lost potential, unfulfilled dreams and senseless suffering. Parents may feel responsible for the child’s death, no matter how irrational that may seem. Parents may also feel that they have lost a vital part of their own identity.” The issue of coping with loss of a child differs according to the child’s age. As grief therapist Barbara J. Paul explains, “The younger the son or daughter is, the more parents are involved in caring for that child. Daily living and routine is affected and simple tasks can become overwhelmingly painful. Parents feel the enormous emptiness of the home and every aspect of life. “With an adolescent or young adult living at home, parents are still involved with many aspects of their child’s life and family routine. These parents feel strongly about the death occurring just as the young person was beginning to live life. Their children have begun to develop lives separate from home, and parents often look for contact and connection with the son or daughter’s friends.” The death of a young child from disease exacerbates the coping challenge because of the additional issues preceding the actual death. Because children’s bodies do not break down in the same ways as adults’, a terminally ill child may rally for months, if not years. Painful memories of the child’s suffering may be as difficult to cope with as the death
76 coping with the death of a coworker itself; and the fear, anxiety, and depression parents have endured may have already strained family relationships. Loss of an Adult Child Parents who lose an adult child also face special challenges. THE COMPASSIONATE FRIENDS (TCF) organization explains, “The grief and the healing process contain the same elements for all bereaved parents, but for those whose adult child has died there are additional factors which affect their grief. Other people often assume that, because the ‘child’ was an adult, the pain of losing them is less.” Although any bereaved parent can be racked with the guilt of outliving a child, TCF notes that parents who lose adult children to “social problems” such as drug use or alcohol-induced accidents face the double guilt of “what could I have done better to have prevented this.” In coping with these losses, many parents have found it especially helpful to become involved in support groups dealing with the issue involved. By helping others to either prevent or deal with what they or their child have experienced, they feel their child’s loss will at least serve some purpose and be a bit more acceptable. Dealing with the death of an adult child is often especially difficult among the elderly, who have particular problems in coping. “The elderly are less likely to cope as well as young people because of the added years of meaning behind the loss, and the fewer years with which to move on,” according to Kathleen Buckwalter, professor of nursing at the University of Iowa College of Nursing, and a specialist in gerontology. The Compassionate Friends. “The Death of an Adult Child.” Available online. URL: http://www.compassionate friends.org/Brochures/adult_child.htm. Downloaded June 16, 2003. Goodman, M., et al. “Cultural Differences among Elderly Women in Coping with the Death of an Adult Child.” Journal of Gerontology 46 no. 6 (1991): S321–S329. Mehren, E., and H. Kushner. After the Darkest Hour the Sun Will Shine Again: A Parent’s Guide to Coping with the Loss of a Child. New York: Fireside, 1997. Paul, Barbara J. “Losing a Son or Daughter.” AARP Grief & Loss Program. Available online. URL: http://www.aarp. org/griefandloss/articles/16_a.html. Downloaded June 16, 2003.
Rosof, B. D. The Worst Loss: How Families Heal from the Death of a Child. New York: Henry Holt, 1995. University of Iowa Health Science Relations. “Elderly Loss: Treat It with Respect.” Virtual Hospital. Available online. URL: http://www.vh.org/adult/patient/ internalmedicine/prose/elderlyloss.html. Revised December 2003.
coping with the death of a coworker Because people usually spend as much or more time with their coworkers as they do with family or friends, the death of a coworker can profoundly affect employees and their ability to function in the workplace. The sense of sadness will be similar to that of losing a family member or close friend. Because most working people are under age 65, the death of a coworker likely will cause added feelings of unfairness and untimeliness. If they are of a similar age, coworkers may feel vulnerable, frightened, and depressed. The Stanford Help Center offers the following suggestions for coping with the death of a coworker: Be aware of each other. If it appears that someone is having a serious problem coping with the death, express concern and encourage them to seek professional assistance, and have a list of resources available. Accept that work may be affected. You and your co-workers’ job performances and interactions may be affected by the stress. In time, things will return to normal. If the death is suicide, homicide, unexpected, or occurred in the workplace, the emotional trauma experienced will be more severe and the need for outside help will be greater. Contact the family of the deceased. Consider sending cards, flowers, or other gifts, such as a book of memories written by the staff, to a surviving spouse or child. Attend or organize a memorial service. Whether conducted on or off the work site, a memorial service can be another important step for acknowledging feelings and coming to terms with the death.
coping with the death of a parent 77 Consider establishing a memorial at work. Buying a bench or planting a tree are examples of ways to honor the deceased. See also WORKPLACE DEATHS. Stanford Help Center. “When a Coworker Dies.” California State University, Sacramento. Available online. URL: http://www.csus.edu/eapprogr/dies.pdf. Downloaded June 16, 2003.
coping with the death of a friend
Losing a close friend may cause as long and intense a mourning period as losing a close family member. Jan Yager, author of Friendshifts: The Power of Friendship and How It Shapes Our Lives (Hannacroix Creek Books, 1999), says, “A friend is a second self. With each friend we share something special that no one else has. When they die, it’s like losing a part of yourself.” For this reason, it is important to allow yourself to go through the full grieving process. Yager offers the following suggestions: • Memorialize your friend. Do something positive out of the tragedy with mutual friends. • Talk with others about your friend and the loss you feel. • Keep in touch with your friend’s parents or other family members. • Be kind to yourself and recognize that this is a major and powerful loss. • Join a bereavement support group. • Do not underestimate the power of making new friends.
Burby, Liza N. “Coping with a Friend’s Death.” Newsday, January 20, 1998.
coping with the death of a parent
Although everyone knows that one day their parents will die, it does not make it any easier when the time comes. Few are really prepared for the loss. In some instances, friends and associates may criticize the adult who grieves the loss of a parent and feel he or she should get on with their lives. The rationaliza-
tion, especially if the parent is elderly, is usually that the person lived a long, full life or was released from pain and suffering. Such rationalization does not make grief any easier to bear. According to University Hospital, Newark, New Jersey, the intensity and length of the grieving process depends on a number of factors, including the relationship with the parent, the individual’s age, religious beliefs, coping abilities, support systems, and how the loss is perceived as changing his or her life. However, there are common reactions to the death of a loved one. During the first few hours following the death of a parent, the adult child may experience denial, characterized by shock, disbelief, numbness, and anger. He or she may be angry at the doctors who could not save the parent, and may even feel angry at the parent for not taking better care of his or her health. This anger is commonly replaced by guilt and depression. An individual may believe that if she had just done something she could have prevented the death, and minor disagreements that would not normally deserve a second thought can become painful memories. Following guilt, depression sets in, which is the beginning of acceptance, the final stage of grief. As the initial shock of death fades and acceptance sets in, it is common for bereaved children to feel panicky and lost. When a parent dies, many adult children eventually realize that they have not just lost a parent, but also an adviser, role model, and friend. Throughout adulthood, it is not unusual for children to seek their parent’s advice before making large purchases or investments, or even to request counsel on everyday topics like child-rearing, relationships, and health. Without the parent, the adult child may suddenly feel very alone, which can result in feelings of panic, loss, and a possible reoccurrence of depression. Grief counselors such as Saynor and those at GriefLink offer the following suggestions for coping with the death of a parent: • Resist the temptation to dismiss your parent’s death as “timely” or “inevitable.” Although this is one way to rationalize the loss, it does not touch your emotions. • Talk to a caring friend, pastor, or counselor. People often say, “My friends don’t want to hear about this!” All your friends will not, but ask one or two for permission to use them as sounding boards.
78 coping with the death of a partner/spouse • Work at keeping the lines of communication open between you and your siblings. They understand more than anyone what your loss entails. Keep in mind that each member of the family has a personal loss and each will mourn the death of your parent for different reasons and in different ways. • Join a bereavement support group. • Read books on grief, especially when they are about the death of a parent. • Write letters to your parent/parents to express your feelings or as a way of saying goodbye. • Keep a journal as a record of your own journey of grief. • Make a “Memory Book” of photos and mementos, lighting a candle on special occasions, planting a tree or shrub in their memory, visiting special places of significance. • Do something to memorialize your parent: a donation to a favorite charity, a memorial in your family church, a permanent memorial at his or her college or university, or plant a tree in memory of your parent. • Be patient, tolerant, and gentle with yourself as you grieve. You have experienced a significant loss and you need to take time to grieve. The majority of people whose parents die are employed fulltime. A three-day bereavement leave is not enough time to deal with this loss. Be aware of the need to adjust your personal schedule to take time to grieve. • Seek professional help when you feel overwhelmed by your grief or memories. No one has to bear it all alone. Draw on the resources of your faith to sustain you. GriefLink. “Grief Reactions Associated with the Death of a Parent.” Available online. URL: http://www. grieflink.asn.au. Downloaded June 16, 2003. Saynor, John Kennedy. “When Your Parent Dies.” Growing through Grief. Available online. URL: http:// www.thefuneraldirectory.com/parents.html. Downloaded June 16, 2003. The USAA Educational Foundation. “Loss of a Loved One.” Available online. URL: http://www.usaaedfoundation. org/family/coping/cp03/cp03a.htm. Updated October 29, 2002.
coping with the death of a partner/spouse In a study by psychologists Thomas Holmes and Richard Rahe, the death of a spouse ranked as the most severe of all problems that people experience. In addition to being traumatic, the death of a partner or spouse can be especially challenging because it touches all aspects of our lives—physical, mental, emotional, financial, and spiritual. The National Mental Health Association explains, “In addition to the severe emotional shock, the death may cause a potential financial crisis if the spouse was the family’s main income source. The death may necessitate major social adjustments requiring the surviving spouse to parent alone, adjust to single life and maybe even return to work.” Psychologist Helen Greally writes, “Today the need for adaptation to this life event is seen as one of the key factors in coping with the death of a partner or spouse. Adaptation is a process that takes time—how that time is used is very important in bereavement.” Death of a partner during the first 10 years of marriage can present a particular challenge in coping and adapting because not only has the survivor lost a spouse, he or she has also lost the future they were planning as a couple. At the other end of the life cycle, another special challenge exists. An elderly couple who have spent most of their adult lives married to each other may not be able to imagine living in the world without their spouse. It will mean losing a lifetime of shared experiences. And the feelings of loneliness may be compounded by the death of close friends. Greally says, “Both of these bereavements require an enormous amount of coping, but for different reasons.” The bereaved partner/spouse may experience many different emotions; from initial numbness and shock, even when the death was expected, to anger and frustration at the change that has occurred in his or her life, to an often overwhelming sadness at the seeming unfairness of it all. The experts suggest several steps to take in coping with the death of a loved one, which will help get back to a normal routine: • Accept the reality of your loss. • Experience the pain of grief. Recall and reminisce about the deceased even to the point of tears.
coping with the death of a pet 79 • Adjust to the environment in which the deceased is missing; make changes in that environment. • Exercise daily, even if it’s only a 10-minute walk. • Avoid using alcohol, drugs, or sleeping pills as ways of coping. • Reinvest in another relationship. Greally warns that the death of a partner/spouse is more than losing the physical presence of having someone always there. It can also mean the loss of a friend, soul mate, wage earner, and co-parent. Sometimes these losses do not become apparent for a while after the death, so it is important for the grieving partner to find good support in the second and third year following the death. But she cautions, “Choose that support wisely. Don’t let your bereavement experience be dictated by others. This is your grief and you know best how to express it.” Hampton and Russell add that “it is preferable to postpone any major decisions for a year after the death of a mate because the grieving process, which often lasts a year or more, may cloud a survivor’s judgment.” An area of loss not always discussed is the physical side of the relationship, according to Hampton and Russell. “Though it is rarely perceived by others, one of the most devastating losses caused by the death of a spouse is the termination of physical intimacy— hugging, kissing, tender embraces, all exchanged with affection. While sexual activity may be nonexistent for the survivor, children and family can help to fill the void in physical contact by themselves embracing, hugging, and kissing the widow or widower. A touch, a quick pat on the shoulder, an affectionate squeeze, or a peck on the cheek all can communicate love and help to fill the need for affection.” Hampton, Roy F., and Charles Russell. The Encyclopedia of Aging and the Elderly. New York: Facts On File, 1992. Helen Greally. “Living through the Death of Your Partner or Spouse.” The Irish Hospice Foundation. Available online. URL: http://www.hospice-foundation.ie/Leaflet_Death_ of_Partner.htm. Downloaded June 17, 2003.
coping with the death of a pet
As a source of unconditional love, pets can become as important to
people as human members of the family. Unfortunately, because of pets’ shorter life spans, it is likely that pet owners will outlive their animal companions. Losing a pet can bring about profound grief in children and adults alike. Coping with the illness, and loss, of a pet can be physically, emotionally, and financially exhausting. The pet owner’s emotions can run the gamut from sadness and anxiety to denial and anger. If the pet has been debilitated by a fatal or serious disease, and the owner has chosen to have his or her companion euthanized, feelings of guilt will also have to be dealt with. The Humane Society of Indianapolis offers the following suggestions for coping with the loss of a pet: • Talk to your veterinarian, family members, and friends—those who shared your pet’s life with you. • Some families may have a burial ceremony or other celebration or remembrance of their companion animal’s life. • You can also express your feelings creatively through writing or art. • Grief counseling is an option, and there are a growing number of pet-loss support groups. Pet Loss Hotline volunteers, such as those at Washington State University College of Veterinary Medicine, are specifically prepared to help people cope with grief and bereavement in the pending or past loss of a companion pet. Explaining Pet Loss to a Child Although parents will naturally want to protect their children from painful experiences, Feinman says most adults are surprised to find how well most children adjust to the death of a pet if they are prepared with honest, simple explanations: When a pet is dying, it may be more difficult for a child to resolve the grief experienced if the child is not told the truth. Adults should avoid using terms like “put to sleep” when discussing euthanasia of a family pet. A child could misinterpret this common phrase, indicating the adult’s denial of death, and develop a terror of bedtime. Suggesting to a child that “God has taken” the pet might create
80 coping with the death of a sibling conflict in the child, who could become angry at the higher power for cruelty toward a pet and the child. Children are capable of understanding, each in their own way, that life must end for all living things. Support their grief by acknowledging their pain. The death of a pet can be an opportunity for a child to learn that adult caretakers can be relied upon to extend comfort and reassurance. It is an important opportunity to encourage a child to express his or her feelings Feinman, Jeffrey. “Coping with the Loss of a Pet.” HomeVet Natural Pet Care. Available online. URL: http://www.homevet.com/bonding/loss.html. Updated July 3, 1998.
coping with the death of a sibling
Death of a sibling profoundly affects children and has repercussions throughout a child’s life. Children often engage in “magical thinking,” believing they have magical powers. When two siblings argue, it’s not unusual for one to say (or think), “I wish you were dead.” If that sibling were actually to die, the surviving sibling might think that his or her thoughts or statements actually caused the death. The death of a sibling or other child may be especially difficult because it strikes so close to the child’s own peer group. If the child also perceives that the death could have been prevented (by either a parent or doctor), the child may think that he or she could also die. When a sibling dies after a lengthy illness, adolescents, who have resented the sibling for receiving so much attention from the parents while going through the illness, may feel guilty. The question of whether the death of a sibling during childhood or adolescence leads to depression as an adult is not known. However, Sidney Zisook, professor of psychiatry at the University of California at San Diego, says it is clear that what happens after the loss is significant in contributing to or preventing adult depression. “According to current theories of attachment among family members, children, and even adolescents, cannot always tell the difference between themselves and their
loved ones. When the loved one dies, it may feel as if part of the self is lost too. When the family is secure, and the children feel their home offers a comfortable place for them to retreat to when they are hurt, they will probably fare better after the loss of a family member.” Death of an Adult Sibling THE COMPASSIONATE FRIENDS call adult surviving siblings “forgotten mourners,” especially those who live away from the family home. “New family roles may emerge that might not ever have been considered. A surviving sibling may have to replace a brother or sister as the caregiver for elderly parents; another may be named as the guardian for surviving nieces or nephews. Fulfilling these new roles can also cause adult siblings to put off dealing with their own pain and loss as they embark on their personal grief journey. Another aspect of the void may find the survivor feeling abandoned by the sibling whose role has always been that of the dependable ally in times of crisis—ironically, at the time of life’s worst crisis.” Lord offers suggestions for coping with sibling death: • Children may find it easier than parents to discard personal possessions of the deceased. They may also find it easier to “put their grief aside” and find normalcy in school or play. • During the early days of grieving it is helpful for grieving children to have a personal “ally” to provide stability and understanding. This person calms the anxious child and relieves the parents of total responsibility. • Siblings aged six or seven or older should be given all the facts about their brother or sister’s death as they become known. Not being told the truth only enhances a growing sense of being unimportant to the family. • Talk with your surviving brothers and sisters about both pleasant memories of the child who has died as well as unpleasant memories. This will help them to understand that the child who died was not perfect. Placing the dead child on a pedestal can cause great insecurity for surviving siblings.
costs of dying 81 “Adolescents Who Are Not Helped with Grief Suffer Depression as Adults.” Death Care Business Advisor 7, no. 10 (December 19, 2002). Lord, Janice Harris. No Time for Goodbyes: Coping with Sorrow, Anger, and Injustice after a Tragic Death. Ventura, Calif.: Pathfinders Publishing, 1991. The Compassionate Friends. “Death of an Adult Sibling.” Available online. URL: http://www.compassionate friends.org/Brochures/adult_sibling.htm. Downloaded June 17, 2003. Wray, T. J. Surviving the Death of a Sibling: Living through Grief When an Adult Brother or Sister Dies. New York: Three Rivers Press, 2003.
coroners Public officials responsible for investigating any sudden and unnatural death occurring through violence or under suspicious circumstances. The coroner is likely to come under county jurisdiction. The term coroner has been in use since as early as the year 900, depending on the historian; it is a derivation of the word coruner from the root corona, Latin for crown. They were officers of the crown, working for the king. Smith says that “coroners started in the late 12th Century. Their job was to maintain records of criminal justice and take custody of all royal property.” The position has evolved over the centuries; today it may be an elected position or appointed and it may require a medical degree or none at all, depending on state and local laws. Smith explains, “In determining the cause of death, the coroner holds an inquest (from the Latin to seek into) whenever there is doubt. He or she may be assisted by a jury. In several states the coroner, who may or may not be a physician, counts on the MEDICAL EXAMINER, a pathologist with forensic training whose activities may be restricted to postmortem examinations.” The coroner determines the cause of death for the police investigation. Smith, Ian Maclean. “Coroners Provide Essential Community Service.” Virtual Hospital, University of Iowa. Available online. URL: http://www.vh.org/adult/patient/ internalmedicine/aba30/1999/coroners.html. Posted February 1999.
corpse
The dead body of a human being. See also NECROPHILIA; NECROPHOBIA.
corpse flower
Known as Titan arum, a flowering stalk that can grow as high as 10 feet, and produces a bloom that opens to a diameter of three to four feet. Best known for its strong, putrid smell, Titan arum emits an odor that has been compared with the smell of rotting flesh and can be detected from half a mile away. The odor, which is usually strongest at night, is meant to attract pollinators such as carrion beetles and flesh flies that are found in the plant’s native Sumatra, a major island of Indonesia.
Jones, Andrew. “Massive ‘Corpse Flower’ Set for Rare Blooming in U.S.” National Geographic News, June 5, 2001.
cortege
A funeral procession, usually formed at the funeral home or place of worship and proceeding to the cemetery or place of memorial service.
costs of dying A few generations ago, not many people lived much beyond 50 years, and it was unusual to have a lengthy disability before death. Most people died from accidents, infections, or childbirth. The costs of dying were low and mostly covered by the family. Advances in technology have changed all this. Bossarte explains, “The average age of death in the 21st century is 78 years. We are now most likely going to die from cancer, heart disease, stroke or dementia. We will be disabled by our illnesses, on average, more than four years. And dying costs us more because of the length of disability and the costs of interventions and medications to extend life or relieve pain and suffering. Most of us will not be able to pay for our own health care and will rely on Medicare and Medicaid programs.” According to The Wall Street Journal, one in every seven dollars spent on health care is spent during the last six months of life. Figures from 2000 showed that end-of-life costs account for about 10 percent of total health care spending and 27 percent of Medicare expenditures. Others have reported as much as half of all health care dollars are spent in the last six weeks of life. Senior citizens near the time of their death can expect to generate more than $50,000 in medical, funeral, and burial costs, according to figures
82 counseling released in August 2002 by the National Center for Policy Analysis (NCPA). The government will pick up about 65 percent of the cost through subsidized programs such as Medicare and Medicaid, which are funded by taxpayers. When baby boomers begin to retire in a few years, NCPA research shows that the cost of dying will soar. Most of the costs of dying are hidden. According to the NCPA: • Medicare averages the spending of $28,616 on medical bills for seniors in the last two years of life. • Medical costs paid by Medicaid and private insurance average $4,006 and $3,720, respectively. • The deceased and their families can expect outof-pocket medical expenses of $5,723. • Funeral and burial expenses average another $8,000. The Robert Wood Johnson Foundation funded an in-depth critical review of the literature published during the 1980s and 1990s on high-cost illness and methods to reduce these costs, such as hospice care and advance directives for medical care. Among its key findings: • Although changes in medical technology and greater intensity of care have contributed to the overall rise in medical care costs, the cost ratio of seven times higher for those elderly Medicare patients who died than for those who survived has remained constant over past decade. • Costs at the end of life vary widely between different causes of death. Deaths from malignant neoplasms, nephritis, COPD (chronic obstructive pulmonary disease), and chronic liver disease are the principal high-cost causes of death in terms of per capita Medicare payments at the end of life. By contrast, deaths from heart disease and cerebrovascular disease are at the opposite end of the scale. However, these data refer to Medicarecovered services, and do not include costs of longterm care. • One small study suggests that functional status (in addition to age) plays an important role in determining the intensity of care in the last year
of life. It showed that the decedents who got aggressive care were the younger (under 80 years) decedents who were in good functional condition, whereas the frail older old were given mainly supportive care. • Most of the savings were achieved in the last month of life by hospice patients with a stay of less than three months, whereas patients enrolled for more than three months did not save the Medicare program any money, except possibly beneficiaries enrolled for six to seven months, the longest enrollment period. • Only a handful of studies have explored the question of whether advance directives (or DNR orders) lower the terminal medical (usually inpatient hospital) costs of patients who die. To date, however, the findings of these studies are inconclusive. • In the many studies of medical care costs at the end of life, the emphasis has been almost exclusively on high-cost, high-technology care. Largely ignored has been the problem of patients dying in nursing homes. Considering that such patients also have additional medical expenses—for physician and at least some hospital services, and for drugs—it is clear that many patients who die in nursing homes have catastrophic expenses. As the population ages, this group of decedents will become increasingly important and may well pose greater economic problems than the highcost decedents on whom most of the research to date has focused. Bossarte, Raeann. “End of Life.” Senior News 19, no. 11 (November 2000). Robert Wood Johnson Foundation. “Monograph on HighCost Illness at the End of Life.” Available online. URL: http://www.rwjf.org/reports/grr/021577s.htm. Last updated April 1998.
counseling Individuals who continue to suffer from the stresses of grief for a long period of time may find mental health counseling helpful. Getting help when it is needed is a sign of strength and wisdom; appropriate referrals for mental health help can be obtained from a social worker or a physician. Support groups for widows and widowers, parents,
cremation 83 and divorcees are effective for many people. Knowing that others had the same emotional reactions can help participants cope better with their grief stressors. Those grieving for the loss of a child may also find help in appropriate support groups. Kahn, Ada P. “Grief,” in Stress A to Z. New York: Facts On File, 1998.
cremains
After the cremation process, the remains are a combination of ash and bone fragments, which are then processed further to create a uniform powderlike texture. The common term for them is ASHES. As cremating becomes more common, the traditions of what to do with the cremains are changing. Scattering remains is declining in favor of more lasting (and more expensive) alternatives. Among the more creative ways families are “storing” their loved one’s cremains are in cremation benches, jewelry, keepsake urns, sculptures. Other families have paid thousands of dollars to send their cremains into space in order to be scattered there.
cremation
The word cremation comes from the Latin word cremo, which means “to burn,” particularly the burning of the dead. Cremation is a process of reducing the human body to bone fragments using high heat and flame. These fragments are called cremated remains or CREMAINS; they have neither the appearance nor the chemical properties of ASHES, the term most people use for them. These remains can then be buried in a cemetery lot or cremation garden, kept in an URN in a COLUMBARIUM, kept at home, or scattered. Laws vary from state to state as to how and where they may be disposed. Cremation is not a substitute for a funeral. It is simply a method of preparing the deceased for burial and/or memorialization. Most archaeologists agree that cremation began during the early Stone Age, about 3000 B.C.E. It likely was first used in Europe and the Near East, then during the late Stone Age began to spread across northern Europe. By 1000 B.C.E. cremation had become an important part of Grecian burial rites, and became the most common method of dis-
posing of bodies in Greece by 800 B.C.E. and in Rome 600 B.C.E. But the custom was not embraced by early Christians, who considered it pagan, because of their doctrine of bodily resurrection. So as Christianity spread across Europe, burial replaced cremation except in times of plague or war. Modern cremation did not begin until the late 19th century when an Italian, Professor Brunetti, developed the first modern cremation chamber in the 1870s. This triggered a movement toward cremation in Europe and North America, which has continued to the present day. Except for two recorded instances prior to 1800, cremations in North America did not begin until 1876 when Dr. Julius LeMoyne built the first crematory in Washington, Pennsylvania. In 1886 the Roman Catholic Church officially banned cremations. Church members as recently as World War II were excommunicated for arranging them. Most religions today allow cremation except for Orthodox Jewish, Islamic, Eastern Orthodox, and a few Fundamentalist Christian faiths. The Roman Catholic Church lifted the ban forbidding Catholics to choose cremation in 1963. This permission was incorporated into the revised Code of Canon Law of 1983 (Canon #1176), as well as into the Order of Christian Funerals. Nearly all Protestant churches allow for the urn to be present during the memorial service. Most Catholic churches also now allow the cremated remains to be present during the Memorial Mass, although the church prefers that cremation take place after the full funeral liturgy with the body if it is possible. State laws vary, but generally when a deceased body is not cremated within 24–48 hours, it must be embalmed the same as a body to be buried. Roman Catholic law does not allow for the scattering of ashes. “The practice of scattering cremated remains on the sea, from the air, or on the ground, or keeping cremated remains in the home of a relative or friend of the deceased are not the reverent disposition that the Church requires.” (Order of Christian Funerals, Appendix II: Cremations). However, the church does allow burial at sea of ashes that have been placed in an appropriate container that is heavy enough to sink to a final resting place. In addition to religious questions, medical issues also need to be considered when deciding between
84 cremation cremation and burial. As researchers learn more about genetics, documenting and retrieving DNA will become more important in studying, treating, and preventing diseases that tend to run in families, such as Alzheimer’s, cancer, diabetes, heart disease, and multiple sclerosis. The thorough reduction and fragmentation of cremated human remains often leaves little biological evidence of diagnostic value. The number of cremations in North America has increased dramatically in recent years: from 5 percent in 1962 to 20 percent in 1992. In 2000 26 percent of Americans and 45 percent of Canadians were cremated. Based on the past five years’ average percent change, the Cremation Association of North America projects that in 2010, 31 percent of deceased Americans will be cremated and 47 percent of Canadians, and in 2025, 49 percent of deceased Americans. According to the Cremation Society of Great Britain, in the year 2000, cremations took place in 71 percent of all funerals there. In other countries, such as Japan and Scandinavia, cremations reach as high as 95 percent. People choose cremation for a variety of reasons. Because neither an expensive casket nor embalming are required, it is usually less costly, so some choose it for the financial savings. Unless the ashes are buried, there is no cost associated with the purchase and perpetual care of a grave site or tombstone. Also, with less cemetery space available today, some consider cremation due to environmental concerns. Others choose cremation because it allows scattering of the remains in a place of significance to the deceased. In preparation for cremation, the body is placed into a wooden box or casket (container), which is consumed along with the body. When desired, some crematoria will allow a small number of personal items to be placed with the deceased prior to cremation. These items will remain with the deceased and will be consumed during the cremation process. Because of the explosive potential of pacemakers when heated, they must be removed prior to cremation. Radioactive implants may also pose potential health hazards to crematory personnel, and so are removed prior to cremation. Artificial joints are not removed before cremation. The container is placed in a chamber called a retort. Each retort is large enough to hold only one cremation container
at one time. The length of time the cremation process takes depends on the weight of the individual. For an average size adult, cremation takes from two to five hours at normal operating temperatures of between 1,400°F and 2,100°F. After cremation is completed, a cooling period is required prior to the recovery of the cremated remains. All organic bone fragments, which are very brittle, as well as non-consumed metal items are “swept” into the back of the cremation chamber and into a stainless steel cooling pan. All non-combustible items, such as metal from clothing, artificial joints (such as hip joints), bridge work, casket hinges, and jewelry, are separated from the cremated remains. This separation is accomplished through visual inspection as well as using a strong magnet for smaller and minute metallic objects. Items such as dental gold and silver are non-recoverable and are commingled in with the cremated remains. Remaining bone fragments are then processed in a machine to a consistent size and placed into a temporary container, unless a permanent urn has been selected by the family. Cremated remains resemble coarse sand and are whitish to light gray in color. The remains of an average size adult usually weigh between four to six pounds and take up a space of approximately 150–200 cubic inches; remains can weigh from three to nine pounds. Some crematories process the cremated remains in order to reduce the space they require. The remains, in their container, are returned to the family or transported to a location (such as a funeral home or church) specified by the family. When ashes are to be transported across state lines, the airline or other carrier, or the departments of health for the states involved, need to be contacted, because some states regulate the transport of cremated remains. On February 24, 2000, the U.S. Postal Service issued Postal Bulletin 22018 to remind postal employees “that human remains (e.g., an urn with ashes) must be sent as registered mail with return receipt services. Employees who do not enforce this regulation risk putting the Postal Service in the uncomfortable position of losing or delaying these items, possibly at great emotional distress to families of deceased persons.” Cremated remains cannot be sent by overnight express mail, regular mail, or certified mail.
criteria of death 85 In recent years several scandals have hit the cremation industry—the discovery of 339 remains that were not cremated at the Tri-State Crematory in Georgia, the detour of remains from a crematorium to Lynn University’s funeral service program in Florida, and the selling of body parts by Pacific Cremation Care in California. Although such scandals have not slowed the number of cremations, the industry reports that more people now want to accompany the body through the cremation process. To facilitate this, some crematories are adding viewing rooms that overlook the retort. As family members watch, the funeral director opens the cremation box so the family can see that it contains the remains of their loved one, and then they watch as the box is pushed into the retort. Such monitoring of the cremation process has always been possible, but was not often requested. Because of the scandals, requests have increased. Death Care Business Advisor, an industry newsletter, reported in July 2002 that a Texas crematory designed a system that allows families to track the remains. It works like the tracking systems used by United Parcel Service, the U.S. Postal Service, and Federal Express. The system requires the funeral director to use a biological access point, such as a facial scan or fingerprint scanner, to make sure the cremation is carried out on the correct person. The system then tracks when the body is taken to the crematory, who signs it in, who puts it in refrigeration, when it is put into the retort and when the cremains are put in a special locker. The family signs off on it when they get a full report, and can demand to see the audit trail at any time. In 1997 the Cremation Association of North America conducted a survey to collect statistical information on crematory operations in the United States and Canada. Among its findings: • Median age of cremated bodies—74.0 years • Gender—Female 51.9%; Male 48.1% • Race and Ethnicity—Caucasian 88%; African American 6%; Asian 3%; Hispanic 3% • Religious Affiliation—Protestant 58%; Catholic 26%; Buddhist 11%; Jewish 3%; Hindu 2% • Body Cremated in—Alternative Container 80.2%; Wood Casket 8.3%; Cloth Covered Casket 7.2%
• Cremated Remains Disposition—Delivered to Cemetery 40.7%; Taken Home 35.8%; Scattered as Directed 17.8%; Not Picked Up 5.7% • Of Those Delivered to a Cemetery—Buried 56.8%; Placed in Columbarium 25.6%; Scattered on Dedicated Property 15.2%; Placed in Common Grave 2.4% • Of Those Scattered as Directed—Over Water 72.7%; On Land 27.3% • Service Held Prior to Cremation—Yes 67%; No 33% • Memorial Service Held after Cremation—No 56.3%; Yes 43.7% Gale, C. P., and G. P. Mulley. “Pacemaker Explosions in Crematoria: Problems and Possible Solutions.” Journal of the Royal Society of Medicine 7 (July 1995): 353–355. Rutherford, Richard. Honoring the Dead: Catholics and Cremation Today. Collegeville, Minn.: Liturgical Press (2001). Warren, M. W., and J. J. Schultz. “Post-cremation Taphonomy and Artifact Preservation.” Journal of Forensic Sciences 47 (May 2002): 656–659.
crematory
Also called crematorium. An establishment where CREMATION is performed. Some people use it to denote a furnace where a corpse can be burned and reduced to ashes.
crib death
See
SUDDEN INFANT DEATH SYNDROME
(SIDS).
criteria of death Dramatic progress in the development of medical apparatus and of treatments required to support life have made it possible to maintain body functions even after mental functions have ceased irreversibly. In order to deal with the consequent problems, a Harvard University Ad Hoc Committee on the Examination of the Definition of Brain Death in the late 1960s proposed a new definition of death, which has obtained increasing acceptance: the criterion of death has been reached when the recorded brain function has ceased for a 24-hour period. In recent years an additional criterion has been added: death occurs when
86 cryonics circulation within the brain, recorded by one of the modern medical techniques, has ceased. The UNIFORM ANATOMICAL GIFT ACT has been criticized for a lack of criteria for determining the moment of death. As the law stands, one doctor is required to determine the moment of death. This doctor is not allowed to participate in the process of removing or transplanting donor parts. Other countries, such as France, Czech Republic, and Portugal, require two doctors to determine the time of death as a protection for the donor. Some states, including California, Virginia, and Kansas, have included statutes that specify the moment of death as the time of brain death. In Norway, death is defined as the total and irreversible damage of the whole central nervous system. This means that the time of death is some minutes after circulatory arrest. The time lapse may vary from about five minutes up to 45 minutes, depending on the temperature in the brain when the circulation ceased. Weber writes, “The state of New Jersey allows individuals to determine which criteria of death will be applied in their case. If one does not agree with the consensus that death occurs when the entire brain irreversibly ceases functioning, then one may stipulate that his or her death be declared when cardiopulmonary functioning irreversibly ceases.” Roy, F. Hampton, and Charles Russell. “death,” in The Encyclopedia of Aging and the Elderly. New York: Facts On File, 1992. Sardegna, Jill, and T. Otis Paul. “Uniform Anatomical Gift Act,” in The Encyclopedia of Blindness and Vision Impairment. New York: Facts On File, 1991. Weber, Leonard J. “The Patient as Citizen.” Health Progress. Available online. URL: http://www.chausa.org/PUBS/ PUBSART.ASP?ISSUE=HP9306&ARTICLE=A. Downloaded July 13, 2004.
cryonics
Body preservation through the ultra-cold temperature of liquid nitrogen and below—also called cryonic suspension or cryonic stasis or cryopreservation—until a time when it can be resuscitated. Cryonics became a hotly discussed topic following the death of Ted Williams, one of the alltime great baseball players, when his son filed suit to
cryonically preserve the Splendid Splinter’s body. The Williams “preservation” also renewed a feud among scientists over whether the process is quackery or innovation. A spokesman for a Georgia company that freezes human valves and veins for heart surgeries and other procedures, stated in The Atlanta Journal and Constitution that “Right now, it is impossible to effectively cryopreserve a whole organ, let alone a whole body.” Barry Shur, chairman of cell biology at Emory University, added, “To take tissue that has expired—deteriorated, with metabolic decay products and toxins produced—and then freeze it with the intent you could correct the reason for the death in the first place and overcome that by thawing out the tissue has no scientific basis.” Yet families have paid as much as $120,000 to cryopreserve deceased family members. There is also a Washington, D.C.-based Life Extension Society devoted to the cryogenic freezing of members’ bodies when they die. Reel, Monte. “Frozen for the Future: Area Cryonics Buffs Talk of Renewing Life and Wait for Thaw in Public’s Attitude.” The Washington Post, July 22, 2002. Wahlberg, David. “Ted Williams: 1918–2002: Freezing Viewed Skeptically.” The Atlanta Journal and Constitution, July 9, 2002.
crypt
An underground vault or chamber used for burial, especially under a church.
culture and death Culture can be defined as a unified set of values, knowledge, ideas, beliefs, and standards of behavior shared by a group of people. The influence of culture on the meaning and experience of death and dying may be applied to aspects of end-of-life care, such as symptom management, advance-care planning, and grief and bereavement counseling, according to Crawley et al. As the number of cultures within the United States multiplies, health care providers need to be familiar with multicultural attitudes toward death and bereavement. Even though legislation, health regulations, customs, and work rules have greatly influenced how death is managed in the United States, bereavement practices vary in profound
cyanosis 87 ways depending on one’s cultural background. Grief counselors advise that when assessing an individual’s response to the death of a loved one, clinicians unfamiliar with a culture should inquire about customs, beliefs, or cultural norms, and appreciate what is expected or required by the person’s culture. Failing to carry out expected rituals can lead to an experience of unresolved loss for family members. This is often a daunting task when health care professionals serve patients of many ethnicities. The establishment culture in America expects that patients will be told the truth regarding a terminal illness or a poor prognosis. Some ethnic American groups perceive and manage end-of-life issues differently. Surveys show that many ethnic and Native Americans would not want to be told distressing news about their health. As a result, our bias in favor of truth-telling risks alienating these patients and their families. Thomas writes, “Fundamental philosophical differences exist between ‘Western’ thinking and that of terminally ill persons who are African American, American Indian/Native American, Asian Pacific Islander, and Hispanic/Latino. For them, care of the terminally ill focuses on living and prolonging life; Western thinking focuses on helping people cope with their eventual death.” Among the differences among cultures cited by Thomas: • African Americans do not plan for death in the sense of advance directives and living wills. Rather, they tend to utilize home remedies before formal systems and believe that church and family, as opposed to formal providers, should provide service at the terminal stage. • In many Asian cultures it is believed that talking about bad things will produce bad outcomes. Consequently, an Asian-American family may be very reluctant to have a health care practitioner inform the patient of a terminal diagnosis, even though in an American cultural framework the person has a “right to know.”
• Latino/Hispanic Americans highly value receiving services from the family, with the extent and utilization of informal networks varying between different subgroups. Latino/Hispanic elders often believe that if the family cannot provide care, they are not fulfilling their responsibility. Such beliefs reinforce the need to involve the family extensively in the planning and delivery of services. • American Indians/Native Americans rely on the extended family system, especially for tribal groups who still live on reservations. They treat the issue of death and dying in a way similar to other American ethnocultural groups, that is, to speak about death may cause it to happen. Therefore, issues like advance directives often are not discussed. Thomas emphasizes that helping patients to “die well” will not occur “unless we have a better understanding of the role that culture plays throughout the course of one’s life.” Candib, Lucy M. “Truth Telling and Advance Planning at the End of Life: Problems with Autonomy in a Multicultural World.” Families, Systems & Health 20, no. 3 (September 2002): 213–228. Crawley, LaVera M., et al. “Strategies for Culturally Effective End-of-Life Care.” Annals of Internal Medicine 136, no. 9 (May 2002): 673–679. Thomas, Norma D. “The Importance of Culture Throughout All of Life and Beyond.” Holistic Nursing Practice 15, no. 2 (January 2001): 40–46.
cyanosis
A bluish-grayish discoloration of the skin and mucous membranes (such as the lips), caused by a lack of oxygen in the blood. Cyanosis may appear prior to death as the circulatory system becomes impaired. David Kessler, writing in The Needs of the Dying (HarperCollins, 2000), explains that “since our loved ones are usually close to death at this point and are unaware of the cyanosis, it is typically only the caregivers who notice the change. This is a normal part of the dying process.”
D cessation of electrical activity in the brain as determined by EEG; manifestation of rigor mortis. In the past it was customary to attribute nonaccidental death to “natural causes,” which were thought to bring about a termination of life as if by unavoidable destiny and with no particular cause specified. Since the early 1900s, however, death has no longer been thought to happen unavoidably without specific cause. Today, physicians who fill out death certificates usually must enter a specific disease or condition that caused the death. In spite of the long precedent in recording a cause, or causes, for death, enormous advances in medical science in the last 30 to 50 years have made the medical meaning of the term “death” itself increasingly ambiguous. Death used to be signaled when the vital functions of a person, especially breathing and circulation of the blood, had ceased. Today, however, dramatic progress in the development of medical apparatus and treatments required to support life have made it possible to maintain body functions even after mental functions have ceased irreversibly. In order to deal with these problems, a Harvard University Ad Hoc Committee on the Examination of the Definition of Brain Death in the late 1960s proposed a new definition of death, which has obtained increasing acceptance: the criterion of death has been reached when the recorded brain function has ceased for a 24-hour period. In recent years an additional criterion has been added: death occurs when circulation within the brain, recorded by one of the modern medical techniques, has ceased.
Day of the Dead
A festival celebrating the dead in Mexico; it is held the first two days of November. The holiday represents a blend of Catholic and indigenous traditions. Spirits of the dead are believed to return to their homes and to visit for a short time with their families and friends. The first day of November the souls of departed children arrive, and on the second day they are joined by spirits of adults. Families open their homes to visitors, offering them food, drink, stories, memories, and goodwill. To celebrate, the families make altars and place offerings of special food such as “pan de muertos” (sweet bread baked in shapes of skulls and skeletons). A photo of the departed soul is placed on the altar. In some towns, school classes, government employees, and artists compete for the most creative and interesting altar. Sometimes people leave candles and sweets on the graves for dead children. When the candles flicker, it is taken as a sign that the children have come and taken the essence of the sweets. The ancient festival was originally dedicated to the goddess Mictecacihuatl (Lady of the Dead) and was celebrated in late July or early August. The feast was moved to All Hallows Eve by Spanish priests, but the original tone and exuberance, despite the best efforts of those priests, remained the same. The Day of the Dead is also celebrated in Peru, on November 2, when the dead come alive and leave their Andean graveyards with their high walls and gates.
death Permanent cessation of all vital functions; total, irreversible cessation of cerebral function, spontaneous function of the respiratory system, and spontaneous function of the circulatory system; final and irreversible cessation of perceptible heartbeat and respiration. Indicators of death include the cessation of the heart’s action; absence of reflexes;
Roy, F. Hampton, and Charles Russell. “Death,” in The Encyclopedia of Aging and the Elderly. New York: Facts On File, 1992. Watstein, Sarah Barbara. “death,” in The AIDS Dictionary. New York: Facts On File, 1998.
89
90 death agonies death agonies
Muscle spasms that often occur immediately prior to the moment of clinical death. Also called the agonal moment, the term comes from the Greek agon, connoting a struggle. In How We Die: Reflections on Life’s Final Chapter (Vintage Books, 1993), Nuland says, “The dying person is too far gone to be aware of them. Agonal moments and the entire sequence of events of which they are a part can occur in all the forms of death, whether sudden or following upon a long period of decline into terminal illness, as in cancer.” Those other events can include gasping breaths or brief convulsions.
death anxiety
Death anxiety is a potentially disruptive concern about death and dying. It is a multifaceted concept and can include fears about the process of dying, death itself, and what happens afterward. Studies show that the height of death anxiety occurs in people’s 40s and 50s, when they begin to calculate how many years they have left. Bruns compares death anxiety to a deer caught in headlights:
higher on the Fear of the Dead subscale of the Multidimensional Fear of Death Scale (MFODS) than did men. Caucasian participants displayed higher Fear of the Dying Process than did older AfricanAmerican participants. Lastly, older African-American participants reported higher levels of death anxiety on three of the subscales of the Multidimensional Fear of Death Scale (Fear of the Unknown, Fear of Conscious Death, and Fear for the Body after Death) when compared with older Caucasian participants and also tended to accord less social value to the elderly. See also THANATOPHOBIA. Bruns, Daniel. “Matters of Life and Death.” Health Psychology & Rehabilitation. Available online. URL: http://www.healthpsych.com/Lifeanddeath.html. Posted in 1997. Depaola, S. J., et al. “Death Anxiety and Attitudes toward the Elderly among Older Adults: The Role of Gender and Ethnicity.” Death Studies 27, no. 4 (May 2003): 335–354.
deathbed Nowhere is death anxiety seen more clearly than in patients suffering from terminal or potentially terminal conditions. Facing one’s own mortality is a frightening experience. In response to even the possibility of a diagnosis of a terminal condition, some people respond the way a deer does at night to the oncoming headlights of a car. They freeze, and their very inability to act may further jeopardize them. Death anxiety, when experienced, has a way of stopping one in one’s tracks. It shreds the fabric of one’s life, and turns it inside out. In an instant, matters that had seemed important become trivial, and a person can become disoriented by it all.
The last few hours before death; also, the bed on which a person dies.
deathbed statement
Also called dying declaration. Statement made by a person who believes he or she is about to die, concerning the cause or circumstance surrounding his or her impending death. Although hearsay (because the dead person cannot testify in person), a deathbed statement is admissible in court on the theory that a dying person has no reason not to tell the truth.
deathbed visions (DBV) Depaola et al. investigated the relationship among death anxiety, attitudes toward older adults, and personal anxiety toward one’s own aging in a group of 197 older men and women. Negative attitudes toward other older adults were predicted by personal anxieties about aging and death, and, more specifically, fear of the unknown. In addition, several distinctive anxieties were noted for particular subgroups of respondents. Older women scored
A phenomenon whereby a dying person has an awareness of the presence of dead relatives or friends. According to researcher Carla Wills-Brandon, “Deathbed visions are a different phenomenon than after-death visitations. After-death visitations are visions of deceased loved one(s) by people who are not near death. DBVs usually occur when someone is very close to death and they see visions of deceased loved ones who greet them to help the dying make the transition of
death certificate 91 death. These experiences can even take the form of NEAR DEATH EXPERIENCES. DBVs can occur even days before a person dies. Many terminally ill people will experience these visitations to help prepare them for when they cross over to the other side. DBVs also occur to family members in the vicinity of a dying loved one to reassure them that their dying loved one will be safe and will live on.” When Houran and Lange analyzed 49 accounts of deathbed visions from a classic collection, their findings were consistent with the interpretation that deathbed visions are comforting hallucinations. Houran, J., and R. Lange. “Hallucinations That Comfort: Contextual Mediation of Deathbed Visions.” Perceptual and Motor Skills 3, no. 2 (June 1997): 1491–1504. Wills-Brandon, Carla. “Deathbed Visions.” Near-Death Experiences and the Afterlife. Posted online. URL: http://www.near-death.com/deathbed.html. Downloaded June 23, 2003.
death benefit The amount payable to a beneficiary from an annuity or insurance policy when the policyholder dies. Also called the survivor benefit.
death camp
A concentration camp in which those held captive are likely to die or be killed. Also, military prisons having a very high death rate, such as Andersonville in Georgia and Elmira in New York during the Civil War. The term death camp has become synonymous with Nazi concentration camps in which mass executions of Jews were carried out by means of gas; the most notorious camp was at Auschwitz in Poland.
death care industry Name by which the funeral industry prefers to be called, although some are now using a more politically correct “post-life industry.” The term refers to a range of providers of burial goods and services, from the traditional trio of main sectors (funeral homes, cemeteries, and monument retailers) to a variety of subsectors of thirdparty sellers (casket manufacturers, florists, vault suppliers, crematories, pre-need insurance, and even companies that scatter ashes at sea).
According to Hermanson’s research, there are currently in the United States more than 22,000 funeral homes, approximately 115,000 cemeteries, 1,155 crematories, and an estimated 300 casket sellers (which are neither funeral homes nor cemeteries). Changes in the industry include an increase in preneed agreements, cremations, and the number of large chains. In addition, there is a blurring of the traditional distinctions between the funeral and burial industries, and between for-profit and nonprofit cemeteries. Funeral homes and third-party sellers are nearly all for-profit businesses. Most cemeteries are nonprofit; however, many for-profit businesses have close connections with nonprofit cemeteries. Hermanson explains, “Some chains have established a nonprofit corporation as the titular owner of the cemetery to meet statutory requirements. For example, in Oklahoma, all cemeteries are required to be nonprofit, and yet at least 25 are owned by a for-profit chain.” Horn also notes that chains are coming to dominate the $25 billion industry, with three major chains owning 15 percent of the country’s funeral homes and two companies handling two-thirds of all casket and urn sales. Hermanson, Sharon. “The Deathcare Industry.” AARP Public Policy Institute Research Group. Available online. URL: http://research.aarp.org/consume/ib44_ deathcare.html. Horn, Miriam. “The Deathcare Business: The Goliaths of the Funeral Industry Are Making Lots of Money Off Your Grief.” U.S. News & World Report, March 23, 1998.
death certificate A document proclaiming the death of an individual. The death certificate is a civil law document, not a medical science document, and is specific to each state, but based on a national standard form. The death certificate is a public record intended to inform the public and be utilized by a variety of agencies. A death certificate generally indicates the place of death and cause of death, i.e., natural, accidental, homicide, or suicide; it may also list significant conditions contributing to death, but does not usually include the modes or mechanisms of death. Conditions that existed, but
92 death education that did not contribute to death, are not entered. Doctors will usually complete a death certificate, though sometimes coroners are needed to investigate deaths or act in lieu of a physician. Although a legal document, entries on the death certificate are not legally binding for any agency or individual. Evidence may establish that the cause of death was misclassified or that the circumstances of the particular case justify a finding that the death was accidental. One analysis of 494 death certificates found that more than 40 percent were improperly completed. Another found that not a single death certificate out of 69 studied listed the correct underlying cause of death. Experts suggest that the next of kin obtain eight to 10 certified copies of the death certificate, which will be needed as proof of death for closing out legal affairs, such as insurance, Social Security, VA benefits, real estate, or banking. A death certificate also must accompany the body if it is transported to another state. In addition to providing legal proof that a person has died, a death certificate also provides data that public health officials use to measure the nation’s health and help decide on funding amounts for medical research. Information from death certificates is also used by actuaries to determine insurance rates. Guidelines for death certification are established by the National Center for Health Statistics of the Centers for Disease Control and Prevention (CDC) and each state’s health statistics department. The CDC states that “the cause-of death section in the medical-legal officer’s certification is always an opinion. It represents the best effort of the medical-legal officer to reduce to a few words his or her entire synthesis of the cause of death; and a best estimate of the manner of death and the time and date of injury may also be required when neither investigation nor examination of the deceased provides definitive information.” In 2003 the CDC proposed a revision of the U.S. Standard Certificate of Death in order to facilitate electronic gathering of those statistics and make them more useful. The revision proposes gathering nearly 50 pieces of information: decedent’s legal name, sex, Social Security number, age, date of birth, birthplace, residence, marital status, father’s surname, place of death; facility name, city, town,
and zip code; method of disposition, date pronounced dead, time pronounced dead, date of death, time of death, cause of death; was an autopsy performed, were autopsy findings available to complete the cause of death, did tobacco use contribute to death; manner of death certifier (certifying authority identifies the manner or how the deceased died); date of injury, time of injury, place of injury (type of place where injury occurred), injury at work, location of injury (geographic location where injury occurred); description of how injury occurred, if transportation accident, specify; decedent’s education. The 261-page specifications can be downloaded at http://www.cdc.gov/nchs/ data/dvs/dallspec122002-updated.pdf.
death education
Beginning in the 1980s, schools across the country began to offer courses on death and dying. The actual number of such courses is not known, according to Evans and Farberow, because death education is often presented as a part of more-traditional courses. Proponents of death education say it is beneficial and long overdue. Critics, on the other hand, claim such courses are often introduced haphazardly by unqualified teachers and point to cases of negative, damaging end results as information impacts upon young people. Medical textbooks offer little information on end-of-life care, according to a University of California at San Francisco (UCSF) study. Published in the February 9, 2000, issue of the Journal of the American Medical Association, the study found that of the 50 textbooks reviewed, about a quarter had helpful information on likely end-of-life subject areas, but 19 percent gave the subject minimal attention and 57 percent none at all. The textbooks that most lacked end-of-life content were in survey, infectious diseases, AIDS, and oncology. Textbooks with the highest percentage of helpful end-of-life care content were in family medicine, geriatrics, and psychiatry. According to the UCSF authors, medical education typically provides little training in care for the dying, likely contributing to both deficient care for the dying patients and increased anxiety for caring physicians.
death rate 93 Evans, Glen, Norman L. Farberow, and Kennedy Associates. “death education,” in The Encyclopedia of Suicide. New York: Facts On File, 2003.
death investigation Whenever a death is not the result of “natural” causes, the medical examiner or coroner conducts an investigation to “seek out and speak the truth” about a given death. According to John D. Howard, M.D., forensic pathologist and chief medical examiner of Pierce County, Washington, the steps followed in a death investigation are: (1) gather a medical history of the deceased’s prior health and activities and the history of the circumstances immediately surrounding death; (2) gather information about the circumstances surrounding the death from police, doctors, neighbors, etc.; (3) add the investigator or pathologist’s own observations at the scene of injury, death, or place of discovery of the body; (4) perform a physical examination of the body; (5) use directed laboratory and imaging studies such as X-rays, toxicologic analyses, chemical analyses, and histologic examinations.
this was a costly endeavor, the practice was reserved for royalty and high-ranking members of the church. Madame Tussaud of wax museum fame started out making wax death masks of those killed by the guillotine during the French Revolution. After inheriting the wax figure collection of Phillipe Curtius, the doctor who had taught her, she moved to Britain with her collection and in 1835 opened her museum in London. During the 1800s and early 1900s, interest in the new pseudoscience of phrenology (a now abandoned study of the shape of the skull as indicative of different character traits and abilities) combined with more affordable casting materials, such as plaster of paris, to increase the popularity of both life and death masks. By the 1930s, that popularity had run its course.
death penalty A judicial sentence of punishment by execution. See also CAPITAL PUNISHMENT.
death rate death knell A tolling of a bell, such as a church bell, announcing a death.
death mask
Cast made of the face following death. Death masks of one type or another have been used since ancient times. The Egyptians fashioned idealized death masks from thin gold plate and other precious materials, and used them to protect the dead from demons in their afterlife. During the Roman Empire, noble families displayed wax effigies of their ancestors. Death masks were used by Roman actors to play the part of the deceased. Death masks fashioned from the deceased’s actual face were first made out of wax in medieval Europe, when it became customary to preserve the likeness of great personages by making death masks. The face, ears, and neck would be covered with oil, and then covered with liquid wax. Once the wax dried, it would be carefully removed and used as a mold. From the death mask molds, three-dimensional wax images were created to adorn tombs and crypts. As
The estimated number of deaths per 1,000 (usually) in a population occurring in a given area within a specified time. Also called a fatality rate or crude death rate. Although only a rough indicator of the mortality situation in a country for a one-year period, a country’s death rate indicates the current mortality impact on population growth. The World Factbook (Washington, D.C.: Central Intelligence Agency, 2002) gives estimated 2002 death rates per 1,000 population for the following countries: • Australia, 7.25 deaths • Bahamas, 7.49 deaths • Canada, 7.54 deaths • Haiti, 14.88 deaths • Italy, 10.13 deaths • Kuwait, 2.46 deaths • Mexico, 4.99 deaths • Mozambique, 25.13 deaths • United Kingdom, 10.3 deaths • United States, 8.7 deaths
94 death rattle According to the U.S. Census Bureau, the Planetary Death Rate is:
• Seeing a hospital
• • • • •
Research suggests that as people live longer, with death increasingly occurring more in the elderly than in middle age or youth, along with advance warning from chronic diseases, death-related fears have shifted from anxieties over postmortem judgment to fears of the dying process.
1.8 humans per second 106 humans per minute 6,360 humans per hour 152,640 humans per day 55,713,600 humans per year
death rattle
Noisy breathing in some patients who are near death. It occurs as the body’s respiratory and cardiovascular systems begin to fail, leading to a build-up of fluid in the lungs. As the breath passes through this bronchial congestion, when the normal cough reflex is lost, the breath comes out in a rattle sound. If this breathing distresses the family, the doctor may prescribe any of several medications to dry the patient’s secretions and reduce the noise. When this begins, it’s a sign that death will usually occur within 24 to 48 hours. Death rattle is found in about one dying patient in four.
Wildiers, H., and J. Menten. “Death Rattle: Prevalence, Prevention and Treatment.” Journal of Pain and Symptom Management 23 (2002): 310–317.
• Seeing an ambulance
Doctor, Ronald M., and Ada P. Kahn. “death-related fears,” in The Encyclopedia of Phobias, Fears, and Anxieties, Second Edition. New York: Facts On File, 2000. Lester, D., and A. Abdel-Khalek. “The Collett-Lester Fear of Death Scale: A Correction.” Death Studies 27, no. 1 (January 2003): 81–85.
death row The cellblock or building in a prison where those condemned to death await execution. Also called the death house. death sentence
See CAPITAL PUNISHMENT.
deathwatch death-related fears
A fear hierarchy, or arrangement of fears relating to death, from maximum to minimum, is sometimes used during therapy for an individual who has a death phobia. The individual may be asked to name the situation that arouses maximum anxiety; that fear will be given a rating of 100. The situation that causes the least anxiety is given a five. A fear hierarchy or death-related fears for an individual might be: • • • •
Seeing a dead man in a coffin Being at a burial Seeing a burial assemblage from a distance Reading the obituary notice of a young person who died of a heart attack • Driving past a cemetery (the nearer, the worse) • Reading the obituary notice of an old person • Being inside a hospital
A vigil kept beside a dying or dead person. Also, one who guards a condemned person before execution.
deathwatch beetle
The common name for a beetle family, Anobiidae, which makes a clicking or ticking sound as it burrows into wood. At one time, the sound was superstitiously thought to foreshadow the death of someone in the house where it is heard. Literary critics have identified “the death watches in the wall,” to which the narrator in Edgar Allan Poe’s “The Tell-Tale Heart” hearkened “night after night,” as the deathwatch beetle.
death wish A desire for self-destruction believed to drive certain people to consistently put themselves into dangerous situations. A wish to die among the terminally ill may be an expression of depression, suicidal intent, or coping. A 2002 German study of
dehydration benefits 95 an elderly population indicated that the wish to be dead was mostly associated with the occurrence of a major depression, self-rated higher depressivity, higher age, female gender, and negative life conditions such as living in a nursing home.
death with dignity A natural death allowed to occur humanely with no attempt made to prolong life by artificial means. The concept arose in reaction to the ability of modern medical technology to maintain vital functions in, without improving the condition of, persons who are at the point of death.
decomposition
The breakdown of the body following death. Without treatment, such as refrigeration or embalming, tissue decomposition begins immediately. Refrigeration is a necessity that protects family and friends, the crematory operator, and the general public from potential health hazards. Neither embalming nor airtight and watertight caskets nor grave liners nor burial vaults prevent decomposition of the body over a period of time. Within two days, microorganisms (bacteria, enzymes, and fungi) that live in the intestines begin the process of decay by dissolving the internal organs. They produce gas, which bloats the body before it eventually escapes. The face darkens and liquids escape the nose and mouth. The tongue swells and the abdomen begins to turn a greenishyellow color. Within one week, the flesh can become liquid-like under the skin, and can fall off if touched. Eventually the skin blisters and fills with fluid or gas. After about a month, the body is extremely decayed—hair and nails can be easily pulled out, the trunk will be swollen to twice its size. If the weather is warm and humid, putrefaction may set in within a day, but when left in a very cold area or storage space, may be retarded for several months. Decomposition is optimal at temperatures ranging between 70 and 100 degrees Fahrenheit, and slowed below 50 degrees or above 100 degrees. Bodies found in a moist area may develop a waxy substance from the decomposition of body fat, known as adipocere. It makes the body float in water and can preserve the internal organs. Heat accelerates the decomposing, but very dry air may
produce mummification, in which the body tissues dry and harden. Decay is about eight times faster in the air than underground. Obese individuals will decay faster, as will people who died of bacterial disease or congestive heart failure. Decomposition is delayed in deaths from bleeding because blood provides a channel for the spread of the putrefactive organisms within the body. It tends to be more rapid in children than in adults, but slow in unfed newborn infants because of the lack of bacteria within their intestines. Heavy clothing and other coverings will speed up putrefaction by retaining body heat. Injuries to the body surface promote decomposition by providing portals of entry for bacteria; plus, the associated blood provides an excellent medium for bacterial growth. After normal burial, the rate at which the body decomposes will depend to a large extent on the depth of the grave, the warmth of the soil, the efficiency of the drainage, and the permeability of the coffin. The restriction of air, in deep burials, particularly in clay soil, will retard decomposition, but never prevent it altogether. Buried in well-drained soil, an adult body is reduced to a skeleton in about 10 years, and a child’s body in about five years. Graveliners and other burial containers will slow the process a bit, but will not prevent it. An old rule of thumb says one week of decomposition in air is equivalent to two weeks in water, which is equivalent to eight weeks buried in soil, given the same environmental temperatures. Pounder, Derrick J. “Postmortem Changes and Time of Death.” University of Dundee. Available online. URL: http://www.dundee.ac.uk/forensicmedicine/llb/timed eath.htm. Downloaded July 14, 2004.
dehydration benefits It is natural for the dying person to lose appetite and thirst, resulting in dehydration. Increasing evidence suggests that patients who are allowed to die without artificially supplied fluids die more comfortably than patients who receive such treatment. Clinicians note that natural dehydration results in metabolic changes that are believed to produce a sedative effect on the brain just before death, thus decreasing the need for pain medication. In addition, withholding or minimizing
96 delayed grief hydration can have the desirable effect of reducing bronchial and oral secretions. Because there would be less pulmonary congestion, coughing would diminish. Less fluid in the body results in less frequent urination, and in turn, less risk of skin breakdown and bed sores. Less fluid in the body means less pressure on tumors, and hence less pain for the patient. See also ARTIFICIAL HYDRATION AND NUTRITION (AHN).
delayed grief
A type of abnormal grief that occurs when grief reactions are inhibited, suppressed, or postponed for longer than two weeks. Also referred to as a form of complicated or unresolved grief. The bereaved may feel and exhibit little distress at the time of his or her loss and continue calmly engaged in everyday activities. After some time (days, weeks, or even years, in extreme examples), the grief reaction is triggered, perhaps by another loss of a loved one, or by something as apparently trivial as the loss of a personal object. At this juncture the full array of grief symptoms may emerge, although they may be organized around the more recent loss or lost object, rather than the underlying, unresolved grief issue. Because adult children often must take a responsible role following the death of a parent, it is not uncommon for their own grief processes to be delayed.
dementia Dementia is a chronic confusional state. Although around 70 different conditions can cause dementia in the middle and later years, Alzheimer’s disease is the most common, representing 60 percent of older persons who are irreversibly demented. This progressive disorder is characterized by losses of memory, intellectual and language ability, and general competency over a period averaging six to 15 years and ending in death. AHRQ research shows that adults of various ages whose current health states ranged from well to terminally ill differed in their perception of hypothetical health states as being worse than death. For example, 66 percent of younger well adults rated permanent coma as being worse than death, compared to only 28 percent of nursing home residents. However, the proportions of adults rating dementia as being
worse than death were similar among all groups, ranging from 18 to 31 percent. Patients were more likely to accept life-sustaining treatment for states they considered better than death than for states they considered worse than death. More adult patients would refuse treatment if they had only dementia with a terminal illness than if they had only dementia. Kass-Bartelmes, Barbara L., and Ronda Hughes. “Advance Care Planning: Preferences for Care at the End of Life.” Department of Health and Human Services, Public Health Service Agency for Healthcare Research and Quality. Available online. URL: http://www.nih.gov/ninr/ news-info/endria.pdf. Downloaded July 14, 2004.
denial Denial, often accompanied by feelings of isolation and loss, is the first stage people go through upon learning they are dying, according to ELISABETH KÜBLER-ROSS. At least partial denial occurs in almost all patients, Kübler-Ross believes—not only during the early stages of illness or immediately following an explicit diagnosis, but also later on from time to time. She notes that denial functions as a buffer after unexpected shocking news, allows the patient to collect him- or herself, and, with time, mobilize other less radical defenses. Denial is temporary and is replaced by partial acceptance. Kübler-Ross adds that denial maintained until the end does not necessarily bring increased distress, but that most patients do not maintain it too long. Denial is also a part of the grieving process for survivors. Cunningham writes that denial is especially an early stage of adolescent grief. “Teenagers, in particular, may show little signs of grieving in the beginning. This numbness or form of denial is an important coping mechanism and should be respected.” Byrne echoes this advice: “Denial is usually temporary and will be soon replaced by partial acceptance. Denial is healthy because it serves as a ‘buffer’ against shocking news, allowing individuals time to collect themselves and form other defenses to the news. A period of isolation may follow denial when people refuse to accept what has happened.” In another context, Kenneth Kramer, professor of comparative religious studies at San Jose State University in California, has been quoted as saying,
diamonds from cremated remains 97 “We are in denial about death. Americans are extreme in their masking and disguising anything that has to do with death. This is characteristic of industrial cultures obsessed with material belongings. We feel we have a lot to lose.” Byrne, Beverly. “Grief and the Adolescent.” Texas A&M University, July 3, 2002. Cunningham, Linda. “Grief and the Adolescent.” TAG: Teen Age Grief, Inc. Available online. URL: http:// www.thevine.net/~tag/grief.html. Downloaded March 3, 2003. Watstein, Sarah Barbara. “denial and terminal illness,” in The AIDS Dictionary. New York: Facts On File, 1998.
depression A mental state characterized by a pessimistic sense of inadequacy and hopelessness, a despondent lack of activity and sluggish feeling; depression is common in both the dying and the bereaved. Depression is the fourth stage people go through upon learning they are dying, according to ELISABETH KÜBLER-ROSS. In studies, depression has occurred in 50 percent of those patients without impaired consciousness, increasing in their final two weeks of life. Depression in the terminally ill may result from a preexisting emotional disorder, loneliness (especially among the elderly from multiple personal losses), unbearable suffering, medication sideeffects, or the illness itself. It can be treated with medication and psychotherapy. Selective-serotonin reuptake inhibitors (SSRIs) are usually preferred for treatment of depression because they have a relatively rapid onset of action and fewer side effects, compared with tricyclic antidepressants. An SSRI acts by blocking the reuptake of serotonin so that more serotonin is available to act on receptors in the brain. Periyakoil and Hallenbeck explain that grief and depression present similarly in patients who are dying. “Conventional symptoms (e.g., frequent crying, weight loss, thoughts of death) used to assess for depression in these patients may be imprecise because these symptoms are also present in preparatory grief and as a part of the normal dying process. Preparatory grief is experienced by virtually all patients who are dying and can be facilitated
with psychosocial support and counseling. Ongoing pharmacotherapy is generally not beneficial and may even be harmful to patients who are grieving. Evidence of disturbed self-esteem, hopelessness, an active desire to die and ruminative thoughts about death and suicide are indicative of depression in patients who are dying.” In the bereaved, depression may be a symptom of COMPLICATED GRIEF REACTION, marked by a failure to return to levels of performance or states of emotional well-being enjoyed prior to the loss. Casarett et al. explain the difference between depression and grief in the bereaved: “Physicians may find it difficult to distinguish grief from depression because feelings of guilt, thoughts of death, and psychomotor retardation can be features of both conditions. However, symptoms caused by depression typically begin later, after one to two months of bereavement, and persist for several months after the loss. In addition, depression is the more likely diagnosis when symptoms are constant. Prominent suicidal thoughts, profound changes in appetite or sleep, or substantial decreases in function are also markers of depression. None of these criteria are absolute, but they should prompt consideration of antidepressant therapy or referral to a psychiatrist.” Casarett, David, Jean S. Kutner, and Janet Abrahm. “Life after Death: A Practical Approach to Grief and Bereavement.” Annals of Internal Medicine 134, no. 3 (February 6, 2001): 208–215. Periyakoil, Vyjeyanthi S., and James Hallenbeck. “Identifying and Managing Preparatory Grief and Depression at the End of Life.” American Family Physician 65, no. 5 (March 1, 2002): 883–890.
diamonds from cremated remains Among the options available today for disposing of cremated remains (CREMAINS), or in this case, utilizing those cremains, is to have them fashioned into diamonds, which can then be set in jewelry or other memorial pieces. How is this possible? The body is made of carbon. Diamonds are also made of carbon. So it is not too surprising that enterprising individuals finally connected the dots and figured out how to make synthetic diamonds from cremated remains— a Chicago company called LifeGem, with its first
98 direct burial “diamonds” being completed in early 2003. Each human body contains enough carbon to yield 50 to 100 high-quality diamonds of varying sizes, from 1⁄4 to 1 carat. The process takes 16 weeks, and after the carbon is collected during the cremation, the remaining ashes are returned to the family. Diamonds produced by the company sell for $2,095 for a quarter-carat gem up to $9,995 for three-quartercarat diamonds, with discounts for multiple gems created from the same remains—or about the same cost as a traditional funeral. More than 150 funeral homes in 27 states and Canada were already offering the service during the company’s first year. According to the company, it is possible to create a diamond from previously cremated remains, but it is much more difficult to collect the necessary carbon. About half the company’s requests for information concern people’s pets.
direct burial
Also called immediate burial. The body is buried shortly after death, usually within one day and in a simple container. No viewing or visitation is involved, so no embalming is necessary. A memorial service may be held at the graveside or later. Direct burial usually costs less than the traditional, full-service funeral. Costs include the funeral home’s basic services fee (which includes taking care of the paperwork), as well as transportation and care of the body, the purchase of a casket or burial container and a cemetery plot or crypt. If the family chooses to be at the cemetery for the burial, the funeral home often charges an additional fee for a graveside service. Federal Trade Commission. “Funerals: A Consumer Guide.” Available online. URL: http://www.ftc.gov/bcp/ conline/pubs/services/funeral.htm. Downloaded July 14, 2004.
direct cremation The body is cremated shortly after death, without embalming. The cremated remains are placed in an urn or other container. No viewing or visitation is involved, although a memorial service may be held, with or without the cremated remains present. The remains can be kept in the home, buried or placed in a crypt or niche in a cemetery, or buried or
scattered in a favorite spot. Direct cremation usually costs less than the traditional, full-service funeral. Costs include the funeral home’s basic services fee, as well as transportation and care of the body. A crematory fee may be included or, if the funeral home does not own the crematory, the fee may be added on. There also will be a charge for an urn or other container. The cost of a cemetery plot or crypt is included only if the remains are buried or entombed. Funeral providers who offer direct cremations must also offer to provide an alternative container that can be used in place of a casket. Federal Trade Commission. “Funerals: A Consumer Guide.” Available online. URL: http://www.ftc.gov/bcp/ conline/pubs/services/funeral.htm. Downloaded July 14, 2004.
dirge
A song or hymn of mourning composed or performed as a memorial to a dead person. When first used in English from its original Latin, the word was dirige and referred to the chanting or reading of the Office of the Dead as part of a funeral mass. In Middle English, it was shortened to dirge and thereafter took on a more general use for a mournful funeral hymn or lament.
disaster death A disaster is a condition or event of significant destruction, disruption, or distress to a community. The highest natural disaster death toll in U.S. history was caused by the Galveston, Texas, hurricane of 1900, which killed an estimated 6,000 people. The most recent man-made disaster, the terrorist attacks of September 11, 2001, resulted in about 3,000 deaths. McKechnie writes that following disasters such as these, families that have suffered loss may experience any of the following: • Increased irritability, arguments and family discord, including domestic violence • Clinging, acting out, and regressive behavior by children • Illness and psychosomatic problems for adults and children
donor quilts 99 • Exhaustion • Decreased intimacy • Increased alcohol consumption and/or substance abuse • Survivor’s guilt Communities that have been hit by disasters typically perform rituals, set up shrines, or establish other memorials in order to help the community as a whole deal with the trauma and recover psychologically from the violence. McKechnie, Heather. “After Disaster . . . Steps You Can Take to Cope in Stressful Situations.” The Funeral Directory. Available online. URL: http://www.thefuneraldirectory. com/afterdisaster.html. Downloaded July 3, 2003.
discounted grief Lack of nominal or negligible social validation of a loss by others. Also known as marginalized grief. The Compassionate Friends explains that following the death of an adult child, parents’ grief is often discounted. “If the adult child dies as the result of an accident or an illness, parents are often told (while being comforted by friends or family) that they should be grateful that their child lived as long as he or she did.” The feeling of some is that because the parents had their child for 25, 30, or 40 years, their grief is lessened. Discounted grief also occurs when the adult child dies from a cause that makes others uncomfortable or judgmental regarding the cause of death. Discounted grief can also occur when someone loses a pet. The pet owner will be grieving, but others may not consider a pet as “worthy” of such mourning. The Compassionate Friends. “Death of an Adult Child.” Available online. URL: http://www.compassionate friends.org/Brochures/adult_child.htm. Downloaded June 16, 2003.
DNA retrieval and storage
DNA, formally known as deoxyribonucleic acid, is found in most body cells and is responsible for making up the gene markers that determine heredity. Presently more than 10,000 diseases have been linked to heredity. As a
result, a person’s DNA can reveal much about her genetic predisposition to many illnesses. Also, because each person’s DNA is unique it is used to conclusively verify identity and heredity linkage. Scientists believe DNA research will provide even more information in the future that will enhance and extend the quality of human life. Dr. Linda Randolph, medical services director of GeneOptix, Inc., and president of Genetic Resources Medical Group of Los Angeles: “The field of medical research is rapidly discovering new disease and disorder links almost on a daily basis. DNA preservation can provide families with a genetic autopsy capability. Future testing will allow us to pinpoint the genes responsible for certain disorders and all for the predictive testing of the children of the deceased.” As science discovers more and more information about genes and how they work, documenting one’s genetic makeup is becoming increasingly important. Making this decision prior to cremation is critical; once cremation has taken place, DNA retrieval is no longer an option. After a body is buried, it is very difficult, if not impossible, to retrieve enough DNA to obtain a complete DNA profile. Many funeral firms now offer a DNA retrieval and storage program. Some diseases affected by this are: Alzheimer’s, asthma, cancer, heart disease, muscular dystrophy, diabetes, blindness, multiple sclerosis, and cystic fibrosis. DNA Connections offers a list of DNA retrieval service providers at http://www.dnaconnections.com.
doctor-assisted suicide
See
PHYSICIAN-ASSISTED
SUICIDE.
donor quilts
The American quilt has become an art form that captures the spirit and emotions of its creators, as well as a vehicle for interpreting our connection between the past and present. In that fashion, many support groups for bereaved families of organ and tissue donors make remembrance quilts as a way for families to be involved in something tangible concerning their loved ones and the gift of life they chose to make. Following the death and organ donation of a loved one, the donor’s family is invited to participate by making its own
100 do-not-resuscitate (DNR) orders “memory square” or “patch.” Completed quilts are then displayed at various support group meetings, hospitals, health fairs, and community gatherings to remind people that organ transplants depend on the generosity of donors. In the Wisconsin Donor Network’s quilt project, for example, families are encouraged to share their feelings about making the square and can include comments about the quilt square’s design. These are compiled into a booklet, which accompanies the quilt at public displays.
do-not-resuscitate (DNR) orders
Instructions from the patient, or the patient’s surrogate, to the physician not to resuscitate a patient who goes into cardiac or pulmonary arrest and appears to be near the cessation of vital functions. DNR is, in effect, recognition of the futility of attempting to keep a person with terminal illness alive with advanced life support systems. A specific DNR order on a patient’s chart is part of the prescribed medical treatment plan and must have a physician’s signature. It is usually written for patients who are terminally ill, suffering from an end-stage condition, or who are in a persistent vegetative state. Such an order can be made effective both within and outside a hospital setting. DNR orders come under state law and can usually be revoked at any time either orally or in writing, by physical destruction, by failure to present it, or by orally expressing a contrary intent by the patient or the patient’s health care surrogate. In many states, physicians may issue the order. However, a DNR order is always discussed with the patient, family, and doctor before it is formalized. DNR also acknowledges that “death with dignity” may best be served in some people by not using extraordinary means to keep them alive. DNR implies that if a resuscitation attempt is made, the patient could be revived. An order somewhat more precise than DNR, Do Not Attempt Resuscitation (DNAR) indicates resuscitation efforts should not be attempted regardless of expected outcomes of those efforts. Agency for Healthcare Research and Quality (AHRQ) research shows that care at the end of life sometimes appears to be inconsistent with patients’ preferences to forgo life-sustaining treatment—and patients may receive care they do not want. For
example, one study found that patient preferences to decline cardiopulmonary resuscitation (CPR) were not translated into DNR orders. CPR is a procedure frequently addressed in DNR orders. Another study found that patients received life-sustaining treatment at the same rate regardless of their desire to limit treatment. Related to DNR orders are Do Not Intubate (DNI) orders, which instruct that no breathing tube will be placed in the throat in the event of breathing difficulty or respiratory arrest. Either DNR or DNI orders may be given separately (a patient may have a DNR order but not a DNI order or vice versa), but in most cases they are ordered together. Anyone setting up DNR/DNI orders needs to check with his or her state regulations for guidance. Agency for Healthcare Research and Quality. “Advance Care Planning: Preferences for Care at the End of Life.” Department of Health and Human Services. Available online. URL: http://www.ahrq.gov/research/endoflife/ endria.htm. Posted March 2003.
Dover Air Force Base
Located in Delaware, Dover Air Force Base is the home of the Charles C. Carson Center for Mortuary Affairs, the military’s only stateside mortuary. The mortuary staff prepares the remains of fallen U.S. soldiers, sailors, airmen, and marines as well as government officials and their families stationed in Europe and Southwest Asia. Following mass casualty events, specialists at the base assist with the identification of the remains. Normal procedures include dental record checks, fingerprints, and bone analysis. DNA samples can be taken and forwarded to other facilities for evaluation. Remains are inspected, identified, and prepared with the utmost dignity and respect as expeditiously as possible for return to next-of-kin and final burial arrangements. The mortuary is the only one of its type in the continental United States and the largest maintained by the Department of Defense.
dowry death In most parts of India, the bride’s family gives cash, jewelry, and household effects to the groom at the time of marriage. Thousands of brides are killed each year—most often burned alive
dying trajectory 101 in their kitchens—when their families refuse or are late on dowry payments. The deaths may be caused by the grooms but frequently are carried out by the grooms’ families. There were nearly 7,000 dowry deaths recorded in India in 2001, the most recent statistics, according to Dr. Ranjana Kumari, director of the Center for Social Research in New Delhi. But she adds that for every case of dowry violence or murder registered, an estimated 100 go unreported. Chandhoke, Deepali. “Dowry Death: Legal Redressal against the Offense of Dowry Deaths.” Available online. URL: http://www.indianwomenonline.com/ womenhome/Serious/law/dowry/dowrybot.asp. Downloaded July 5, 2003. Duff-Brown, Beth. “Indian Woman Draws Attention to Dowries.” Associated Press, May 15, 2003.
While people with a terminal disease such as cancer generally follow an expected course, or “trajectory,” people with chronic diseases go through periods of slowly declining health marked by sudden severe episodes of illness requiring hospitalization, from which the patient recovers. This pattern may repeat itself over and over, with the patient’s overall health steadily declining, until the patient dies. For these individuals there is considerable uncertainty about when death is likely to occur. Patients who suffer from chronic conditions such as stroke, dementia, or the frailty of old age go through a third trajectory of dying, marked by a steady decline in mental and physical ability that finally results in death. Patients are not often told that their chronic disease is terminal, and estimating a time of death for people suffering from chronic conditions is much more difficult than it is for those dying of cancer. See also BODILY DETERIORATION AS DEATH APPROACHES; DYING TRAJECTORY.
dressing of the corpse
Dressing the body is usually included in the funeral home’s basic services. Costs can be reduced by dressing the deceased in a favorite outfit instead of costly burial clothing. In the Sikh religion, the family usually prepares the body for disposal themselves, bathing it and dressing it in clean clothes. See also BURIAL CLOTHES.
durable power of attorney
Also known as a This document allows the patient to designate a surrogate, a person who will make treatment decisions for the patient if he or she becomes too incapacitated to make such decisions. HEALTH CARE PROXY.
dying declaration dying process, the
See DEATHBED STATEMENT.
The dying process can be described in terms of duration and shape. Duration refers to the time involved between the onset of dying and the arrival of death. Shape designates the course of the dying process (i.e., whether one can predict how the process will advance, and whether the approximate timing of the death is expected or unexpected).
National Cancer Institute. “Loss, Grief, and Bereavement.” National Cancer Institute. Available online. URL: http://www.nci.nih.gov/cancerinfo/pdq/supportivecare/bereavement/patient. Updated July 9, 2003.
dying trajectory
Individuals who are dying do not move toward death at the same rates or in the same ways. Different causes of death are associated with different patterns of dying. These patterns, referred to as “dying trajectories,” indicate the path of the individual’s dying experience. Attitudes and behaviors of people caring for the patient are strongly influenced by the perception of the patient’s dying trajectory. Trajectories will also affect the types of emotional responses and coping mechanisms patients and their families will display, as well as the interventions that will be initiated. For these reasons, the purpose of understanding one’s dying trajectory is to anticipate and implement appropriate interventions. Watstein describes the dying trajectory as “A graphic representation of the dying process. Time is recorded along the horizontal axis and nearness to death along the vertical axis. The condition of a dying individual is plotted across time, with the resulting curve being the dying trajectory.”
102 dyspnea The following examples of trajectories have been described: • The “gradual slant” characterized by a long slow decline, sometimes over a period of years. • The “downward slant” represented by a rapid decline toward death in which the chronic phase of the illness is either short or nonexistent. • The “peaks and valleys” trajectory, in which there are alternating patterns of remission and relapse. • The “descending plateaus” trajectory, indicated by long, slow periods of decline followed by restabilization. Patients in this trajectory must repeatedly adjust to different levels of functioning. Uncertain trajectories are more difficult to cope with than certain trajectories, since ambiguity generates anxiety and is often more difficult to cope with than certainty. See also DYING PROCESS, THE.
National Cancer Institute. “Loss, Grief, and Bereavement.” Available online URL: http://www.nci.nih.gov/ cancerinfo/pdq/supportivecare/bereavement/patient. Updated July 9, 2003. Watstein, Sarah Barbara. “Dying Trajectory,” in The AIDS Dictionary. New York: Facts On File, 1998.
dyspnea Difficult or labored breathing. An uncomfortable awareness of such breathing is a common symptom at the end of life. For dying patients, dyspnea is one of the most feared and most distressing symptoms. Caregivers with a calming presence can help patients stay calm when they are stressed by labored breathing.
E
E Believing that man will be resurrected after death to live forever, death was merely a transitional stage along the way to a better life in the next world. The Egyptian Book of the Dead describes the travel of the soul into a next world without coming back to Earth. In order for the soul to function properly, the body must remain intact. When the body is in good condition after burying it, the soul returns to it again. Because of the importance of keeping the body in good shape, along with the need to prepare for the ensuing journey, the Egyptians embalmed and mummified the dead, plus provided ample provisions for the afterlife. This was seen as a continuation of the existence before death. The Florida International Museum describes the preparation:
Education for Physicians on End-of-Life Care (EPEC) Supported by a grant from the Robert Wood Johnson Foundation, EPEC’s purpose is to train practicing physicians on the essential clinical competencies required to provide quality end-of-life care. The EPEC curriculum, developed by the American Medical Association, covers key competencies for all physicians who care for patients at the end of life. The course covers fundamental skills in palliative care, ethical decision making, symptom management, communication, and psychosocial aspects of care at the end of life. Contact information: The EPEC Project Northwestern University School of Medicine (NUMS) 750 North Lake Shore Drive Suite 601 Chicago, IL 60611 (877) 524–EPEC (toll-free) (312) 503–EPEC (312) 503–4355 (fax)
[email protected] http://www.epec.net
When a person died, the priests recited prayers and a final attempt was made to revive the deceased. The body was then washed and purified in a special shelter called an ibu. The body was then taken to the wabet, which was the embalmer’s workshop. A cut was made in the left side, and all the organs were removed and stored in containers known as canopic jars. The body was then packed with a salt called natron for a period of forty days. After the forty days had passed, the insides were filled with linen or sawdust, resin and natron. The body was wrapped in bandages with jewelry and amulets between the layers. A portrait mask was placed over the head of the deceased by the Chief Embalmer, who wore a jackal mask to represent Anubis. The wrapped body, or mummy, was put into a coffin
Egyptians, ancient
Some authors have described the ancient Egyptians as being obsessed with death, but others say that is a misconception. According to the Sheridan Libraries at Johns Hopkins University, “In reality they were a people consumed by a passion for life. The Egyptians believed that their journey through life and past death paralleled the journey of the sun. Birth and death could be equated to sunrise and sunset. Both the sun and the soul of the deceased needed to traverse the dangers of the Underworld in order to be reborn again.” Herodotus, the Greek historian, tells us the Egyptians were the first people to believe that the soul is immortal.
The mummification process took about 70 days, after which the body was placed in a decorated coffin and buried. The Egyptians were very careful to bury the dead a long way from water, laying the dead in tombs with the necessary food, drink, and
103
104 elegy clothes to help the dead lead a happy life after resurrection. They believed that the size of the burial chamber increased or decreased after interment, depending on the virtue of the deceased. It was believed that once in the afterlife, the person would continue the occupations of this life, so everything required was packed in the tomb along with the body. Writing materials were often supplied along with clothing, wigs, hairdressing supplies, and assorted tools, depending on the occupation of the deceased. Smaller models of occupational tools rather than full-sized ones would likely be placed in the tomb because models were cheaper and took up less space. Once in the afterlife, the model tools would be magically transformed into the real thing. The Egyptians painted idealized scenes from daily life on the walls of their tombs: scenes of agricultural work such as harvesting crops, tending cattle and fishing, scenes of artisans at their work, including gold workers and boat-builders, and domestic scenes of banquets with musicians, dancers, and guests. The scenes represented the hoped for afterlife, in which there were fertile fields and harmony and happiness at home; representing it in the tomb was thought to ensure an ideal existence in the next world. Food was provided for the deceased and should the expected regular offerings of the descendants cease, food depicted on the walls of the tomb would be magically transformed to supply the needs of the dead. St. Petersburg Times. “Splendors of Ancient Egypt Educational Guide.” Available online. URL: http://www2.sptimes. com/Egypt/Egypt.5.html. Downloaded July 5, 2003.
elegy
A poem mourning someone or something that has been lost; a lament for the dead.
embalm
To preserve a dead body from decay; although embalming only delays the decaying process, it does not stop it. The embalming process replaces blood with preservative chemicals and also serves to disinfect the body of the deceased. This treatment allows the body to be displayed for several days after death for viewing and funeral pur-
poses. Without treatment of embalming or refrigeration, decomposition begins immediately. Embalming techniques evolved in two eras: ancient (begun by the Egyptians) and modern (developed by Dr. Frederic Ruysch, who occupied the chair of anatomy at Amsterdam, Holland, from 1665 to 1717). The ancients, from Egyptians to Persians, Greeks, Peruvians, Aztecs, and early North American Indians, used various cleansing agents and oils, such as wine, melted bitumen, sweet balsam, aloes, myrrh, or other spices; then wrapped the body in cloth or coated it in wax or salted it. According to the Museum of Funeral Customs (Springfield, Illinois), the process of embalming that we know today dates to Europe in the 17th century; however, the technique did not come to America until 1840. “The process wasn’t used on a broader scale until the time of the American Civil War in 1861 when it became necessary to treat remains and prepare the dead for transportation to their distant homes for burial. Abraham Lincoln’s body was embalmed, and his body was viewed by millions over a twenty-day period in 1865. We believe that the success of his embalming contributed to proving the benefits and effects of the treatment. Embalming was used more widely in the late 1870s as a means of allowing family members a longer period of time before interment was necessary.” Canada and the United States are the only two nations that regularly practice embalming. Many funeral homes require embalming if you are planning a viewing or visitation. But embalming generally is not necessary or legally required if the body is buried or cremated shortly after death. Eliminating this service can save hundreds of dollars. Under the Funeral Rule, a funeral provider: • may not provide embalming services without permission • may not falsely state that embalming is required by law • must disclose in writing that embalming is not required by law, except in certain special cases • may not charge a fee for unauthorized embalming unless embalming is required by state law • must disclose in writing that you usually have the right to choose a disposition, such as direct
employees’ needs as end-of-life caregivers 105 cremation or immediate burial, that does not require embalming if you do not want this service • must disclose in writing that some funeral arrangements, such as a funeral with viewing, may make embalming a practical necessity and, if so, a required purchase
airlines will accommodate religious objections if the casket is a sealed one. See also EGYPTIANS, ANCIENT; MUMMIFICATION. Baris Funeral Home. “What Is Embalming & How Is It Done.” Available online. URL: http://www.baris.net/bfh/ embalm.html. Downloaded July 14, 2004.
Embalming involves the following process, as described by the Baris Funeral Home: To begin the embalming process, a small incision is usually made on the remains right side of the lower neck. It is at this position that two of the largest circulatory vessels are located; the carotid artery and the jugular vein. Incisions are made in both vessels, and a tube connected to the embalming fluid pump is placed into the carotid artery. Another tube is placed into the jugular vein; this is called a drain tube. The basic theory is to pump embalming fluid into the artery, which will cause the blood to return through the veins and flow outside the remains for disposal. Many fluids have a slight dye added to them, which gives the remains a pinkish glow, and also acts as a guide for the funeral director, making it visible for him to see the fluid as it travels through the remains. This type of embalming is known as arterial embalming. The next step, called cavity embalming, is the application of full strength fluid to the internal organs of the remains. A small incision is made just above the navel, and a long needle called a trocar is placed inside the abdominal and thoracic cavities of the remains. The funeral director aspirates both the abdominal and thoracic cavities. Aspiration is the removal of blood and other bodily fluids, through suction. A suction pump, either water or electric powered is used to remove these fluids. The trocar is then attached to a gravity fed system, which causes full strength fluid to be put into each organ, causing a more thorough disinfection and preservation of the remains All incisions are then sutured closed.
Muslims do not allow embalming. Traditional Jewish beliefs also do not allow embalming but reformed Jewish funerals do, especially if the body is to be viewed at a wake. Shipping a body to another state may mean that the body will have to be embalmed, although most
employees’ needs as end-of-life caregivers Caring for terminally ill relatives, most of whom are elderly parents, is a new challenge for employees and a new reality for American business. In the 1980s, American businesses adapted their human resources policies to accommodate the needs of workers with young children. Now, many of those same workers face a new responsibility: providing care for an older parent, relative, or friend. Just as childcare did, the growing need for eldercare presents employers with workers who must juggle multiple demands on their time and energy. A 1989 survey of 3,658 employees in a major Southern California company revealed that 23 percent of their employees were providing eldercare. A similar study in 1990 for the National Association of Area Agencies on Aging found that 32 percent of their employees were caregivers. This is expected to increase in the future due to the growth of older population, smaller family size; and an increase in the two-earner households. The stresses of caring for long-term, terminally ill family members affect employee productivity. One independent survey revealed that • 56 percent of respondents said they were less productive at work. • 51 percent said they had to take time off during the work day for eldercare. • 30 percent reported being absent for a full day to deal with eldercare matters. • one in four households are helping an elder. And in a survey done by the National Alliance for Caregiving in 1997, 10 percent of caregivers had to give up work entirely. The Centers for Medicare and Medicaid Services offers several suggestions for helping employees who are end-of-life caregivers:
106 end-of-life care • Provide employees with information about community groups and caregiver organizations such as area agencies on aging, hospitals, senior centers, faith-based organizations, disease-specific organizations, and local universities or community colleges or cooperative extension programs. • Raise awareness of the importance of advance directives, supplying information on how to make decisions and offering assistance when employees face the death of a loved one. • Offer flex-time, shortened work weeks, a modified daily schedule, or telecommuting based on need. • Provide supportive benefits such as dependent life insurance, long-term care insurance covering spouse and parents/parents-in-law, flexible spending accounts/dependent care accounts, group legal/financial plans, cash subsidies for services for older relatives, travel discounts for long-distance caregiving, hospice inclusion in company-sponsored health insurance, access to Employee Assistance Programs (EAPs) for counseling and support. • Instill supportive policies such as paid sick leave that can be used for end-of-life care, paid family leave, leave without pay options, compressed work options, job-sharing, employee leave-sharing, gradual return to work policies, funeral and bereavement leave policies longer than three days. Centers for Medicare & Medicaid Services. “When Employees Become Caregivers: A Manager’s Workbook.” Available online. URL: http://cms.hhs.gov/partnerships/ materials/caregiversresources/default/asp. Posted 2002.
end-of-life care
When a patient’s health care team determines that a terminal disease, such as cancer, can no longer be controlled, medical testing and treatment often stop. But the patient’s care continues. The care focuses on making the patient comfortable. The patient receives medications and treatments to control pain and other symptoms such as shortness of breath, anxiety, depression, loss of appetite, nausea, and constipation. Some patients remain at home during this time, while others enter a hospital or other facility. Either way, services are
available to help patients and their families with the medical, psychological, and spiritual issues surrounding dying. A HOSPICE often provides such services. The time at the end of life is different for each person. Each individual has unique needs for information and support. The patient and family’s questions and concerns about the end of life should be discussed with the health care team as they arise. According to a report of a study by the Robert Wood Johnson Foundation released in 1995, a need exists for discussion and physician education in the area of health care at the end of life. Persons near death and their family members often experience extreme stress because of use or nonuse of medical procedures and lack of communication with their health care practitioners. Also in 1995 the American Medical Association established the Task Force on Quality of Care at the End of Life, “To aid physicians in identifying when in the care-giving process, a transition in care needs may occur, and to identify actions that can be taken to improve the quality of life for those facing the end of life.” In 2002 LAST ACTS, a coalition of nearly 1,000 organizations including the American Hospital Association, the American Medical Association, and the American Nurses Association, released a first-ofits-kind national study that graded each state’s handling of end-of-life care. The study examined legal framework in states for making decisions about one’s death, the number of deaths at home, the extent and use of hospice programs—which the coalition called the “gold standard” for end-of-life care—pain management and control programs, and training in end-of-life care. No state did well in all the categories. Nearly all the states had low grades in hospice care use, specifically in the number of people over age 65 who used hospice care and the length of time in the program. Among their recommendations for improving end-of-life care, Stubbs and Pearson suggest: 1. Families need more information about the dying process and access to realistic accounts of what lay caregiving can entail.
entombment 107 2. Those who would support families dealing with the death of a loved one need to acknowledge two important characteristics of the caregiver’s experience: first, caregivers are often shocked by their loved one’s deteriorating health, and second, the caregiver’s experience takes place within the context of intimacy. 3. A more flexible timetable (than death expected in six months) should be built into the legislation that regulates the hospice benefit—one that better reflects the uncertainty of this situation, and helps a family begin the hospice process earlier. 4. The concepts of palliative care vs. acute care and their impact on the end of life need to be more fully understood by the public at large and within the professional community. 5. More in-patient hospice or palliative care beds within hospitals and/or nursing homes are needed. Casteel, Chris. “Study Rates State on Palliative Care.” The Daily Oklahoman, November 19, 2002. Kahn, Ada P. “end-of-life care,” in Stress A to Z. New York: Facts On File, 1998. National Cancer Institute. “End-of-life care: Questions and Answers.” National Cancer Institute. Available online. URL: http://cis.nci.nih.gov/fact/8_15.htm. Downloaded July 14, 2004. Stubbs, Margaret, and Cynthia Pearson. “Family Caregivers and the Dying: The Invisible Ordeal.” Presented to the annual meeting of the National Women’s Studies Association, Boston, Mass., June 14–18, 2000.
and more options in the treatment of medical conditions, including the choice between treatments of varying risks and benefits, the choice to undergo elective surgery, and the choice of non-treatment. Patients often overestimate the benefits and underestimate the risks of a treatment. The decisions that health care providers make may be different than those of the patients and family, suggesting the need for a mutual decision-making process. While some patients want to be actively involved in clinical decision-making, others prefer a passive role. Little is known about what patients and their families view as important information to help them make a decision, or how best to inform them about bad news and how to then proceed to discussion of treatment options. Some health care providers encourage advance care planning to preserve the autonomy and wishes of the patient at the end of life. One of the most difficult decisions to be made at the end of life is whether or not to discontinue life-sustaining treatment. Despite widespread support of advance care planning, less than 20 percent of patients complete an advance directive. The decision for the discontinuation of treatment can result in conflict among patients, family members, and/or health care professionals. Factors that can influence the patient’s decisionmaking process include the symptoms of pain, fatigue, and depression, and economic and social factors, including the perception of burden.
Endowment Care Fund End-of-Life Choices
See HEMLOCK SOCIETY.
Money collected from cemetery property purchasers and placed in trust for the maintenance and upkeep of the cemetery.
end-of-life decision making
Rapidly occurring advancements in science and health care technology are generating new decision-making issues for health care professionals, patients, and their families. Patients can now choose between treatments with varying risks and benefits, choose to omit treatment, and participate in advance care planning for health care decisions. There is evidence that some patients want more knowledge and want to be involved in the clinical decision-making process. Patients are facing more
end-stage condition An irreversible condition that is caused by injury, disease, or illness, which has resulted in progressively severe and permanent deterioration, and for which, to a reasonable degree of medical probability, treatment of the irreversible condition would be ineffective.
entombment grave.
The ritual placing of a corpse in a
108 epitaph epitaph
An inscription on a tombstone or monument in memory of the person buried there. Also can refer to a short literary piece or summary statement to remember a deceased person.
equivocal death Post-suicide term concerning the “psychological autopsy.” An equivocal death is one in which the cause is uncertain or unclear. The psychological autopsy procedure often makes possible a decision as to the cause of death. This usually proves therapeutic for grieving survivors. Evans, Glen, Norman L. Farberow, and Kennedy Associates. “Equivocal Deaths,” in The Encyclopedia of Suicide, 2nd ed. New York: Facts On File, 2003.
estate planning A primary purpose of estate planning is to distribute your assets according to your wishes after your death. Successful estate planning transfers your assets to your beneficiaries quickly and usually with minimal tax consequences. The process of estate planning includes inventorying your assets and making a will and/or establishing a trust, often with an emphasis on minimizing taxes. Estate planning is not only for the wealthy. If your assets are worth $1 million or more, estate planning may benefit your heirs. Even if your estate is not likely to be subject to federal estate taxes, estate planning may be necessary to be sure your intentions for disposition of your assets are carried out. Roy and Russell outline the basic elements of estate planning: First, an attorney should be consulted when drawing up a will, or to determine if an existing will meets current federal and state law. Second, the beneficiaries should be decided upon—spouse, children, relatives, charities, churches, colleges and schools, museums, public art galleries, musical foundations, etc. Third, the information needed for making a will should be organized: beneficiaries’ names and addresses, Social Security numbers, birth dates; a list of assets and obligations should be compiled; property that is held jointly or individually should be specified; life insurance companies, policy types, and value of policies should be identified. Fourth,
the possibility of using trusts for taxes as well as to assure the safety and security of funds left to others should be considered. Fifth, an attorney should be consulted to determine if joint ownership of property, like an automobile, home, or boat makes sense—generally it does, but not always. Sixth, an executor should be named. Seventh, specific items, such as jewelry, antiques, and art works, should be willed. If necessary, an inventory of specific bequests to individuals or institutions should be drawn up. Last, instructions for final matters—arrangement for the funeral, cremation or interment, or other important considerations—should be left. Roy, F. Hampton, and Charles Russell. “Estate Planning,” in The Encyclopedia of Aging and the Elderly. New York: Facts On File, 1992.
ethical dilemmas Health care professionals have an ethical obligation to protect life and to relieve suffering. Autonomy, nonmalfeasance, beneficence, and justice are accepted moral principles governing the behavior of health care professionals within society. Technological and medical advances have created a conflict between the application of these moral principles and certain kinds of medical treatment at the end of life, such as hydration and tube feeding. The tension between which moral principle takes precedence in which situation creates the conflict.
ethics
A system or set of moral principles. Also, the rules of conduct recognized in respect to a particular class of human actions or governing a particular group, culture, or profession, such as medical ethics. According to experts, 90 percent of the cases that hospital ethics committees discuss deal with end-of-life issues. See also BIOETHICS.
eulogy
A speech of praise given by a member of the family, clergy, a close personal friend, or a business associate of the deceased. The eulogy is not lengthy, but offers praise and commendation and reflects the life of the person who has died.
euthanasia 109 euphemisms for death
Euphemisms are expressions that make difficult or emotional situations more tolerable. They are used to soften the reality of what is being communicated, sometimes by the use of humor. Perhaps no “situation” has a longer list of euphemisms than death and dying. Among the more common euphemisms for death are: at rest bite the dust breathed her last brought down the curtain buy the farm cashed in cash in your chips checked out croaked curtains deceased departed this life ended his days end of the line expire give up the ghost gone go to heaven go to one’s just reward go to the happy hunting ground go to the last roundup heard the trumpet call his number’s up kick the bucket laid to rest left the building left us meet one’s maker meet the Grim Reaper on one’s last legs passed on pay the piper pushing up daisies ran out of time returned to dust singing with the angels six feet under sleep with the fishes walked the plank
euthanasia
Also known as mercy killing. The word “euthanasia,” as derived from its original Greek context, means an easy or painless death. It is used to refer to the hastening of a suffering person’s death. In recent years, two types of euthanasia are usually mentioned in professional discussions of termination of life. One is typed as “active” or direct or voluntary, i.e., where life is ended by “direct” intervention, such as administering a lethal dose of a drug with the competent patient’s full, informed consent. The other is called “passive” or indirect, i.e., where death results from withdrawal of life-support or life-sustaining medications. Involuntary or nonvoluntary active euthanasia involves a physician engaging in an act to end a patient’s life without that patient’s full informed consent. Dr. Christiaan Barnard, who received international acclaim and recognition for pioneering work in heart transplant surgery, wrote in Good Life, Good Death: A Doctor’s Case for Euthanasia and Suicide that: “Indeed, even though many doctors will not admit it, passive euthanasia is accepted medical practice—a common occurrence in wards where patients live out their final hours.” Evans and Farberow explain further: Most people’s notion of euthanasia is best described by the term “mercy killing,” or active intervention to end life. The layman is often uninformed about the concept of passive euthanasia. So-called mercy killings rose 10 times in the 1980s, say co-authors Derek Humphry and Ann Wickett in The Right to Die: Understanding Euthanasia. This, compared to any five-year period since 1920. The authors, husband and wife, are co-founders of the Hemlock Society in Los Angeles, California. Humphry and Wickett’s book, Jean’s Way, is Humphry’s account of helping his critically ill first wife take her own life. Humphry also published the first U.S. guide to “selfdeliverance,” Let Me Die Before I Wake, in 1981; it was revised in 1984 and 1987 but is now out of print. In 1935, the British Voluntary Euthanasia Society was formed, followed by the founding in 1938 of the Euthanasia Society of America. In 1980, the World Federation of Right-to-Die Societies was founded, with 27 groups from 18 countries joining.
The question of whether a physician should assist patients with an intolerable terminal condition to
110 execution end their life has been debated since the practice of medicine began with Hippocrates. The debate surrounding PHYSICIAN-ASSISTED SUICIDE and voluntary euthanasia still rages. Essinger notes that American society appears to be ready for the legalization of physician-assisted suicide and euthanasia. “A 1991 General Social Survey conducted by the National Opinion Research Center asked the following question: When a person has an illness or disease that cannot be cured or is in a permanent vegetative state, do you think doctors should be allowed by law to end the patient’s life by some painless means if the patient and his or her family request such measures? More than 70 percent of those queried responded ‘yes.’ A Gallup poll in 1994 indicated that 65 percent of the U.S. public is in favor of allowing doctors to help the terminally ill end their suffering. In a Harris poll conducted in 1999, 73 percent of respondents agreed that physicians should, without penalty, be allowed to assist the terminally ill with their death.” But physicians are more polarized in the debate, largely because of the Hippocratic Oath they have taken, which states, “I will neither give a deadly drug to anybody if asked for it, nor will I make a suggestion to this effect.” Strong religious beliefs can also affect their arguments. Essinger, who surveyed a random sampling of more than 1,100 Tennessee physicians, comparing results to other states, explains the challenge of legalizing euthanasia: The Tennessee study, performed in the “buckle of the Bible Belt,” is a replication of the Washington study in the Northwest and the South Carolina study in the South, thus representing three geographic regions of the country. When physicians were asked whether a situation might arise in which they themselves would administer a lethal overdose, only 25 percent of Tennessee physicians responded that they would participate in euthanasia (58 percent in Washington and 29 percent in South Carolina). If the polarized attitudes of physicians in these states are near exemplary of those among physicians in other states, it will be difficult at best to formulate and implement laws and policies concerning assisted death and euthanasia.
A Dutch study reported in the July 26, 2003, issue of the British Medical Journal found that death by euthanasia may cause less grief for family and friends than a natural death does. The researchers proposed as possible reasons: they had time to prepare and talk about the death, and they had the chance to say goodbye to their loved one. Euthanasia is legal in the Netherlands, where about 3,000 people choose to die by that method every year— about 80 percent of whom have cancer. The researchers noted that there were important demographic differences between the families choosing euthanasia and those where their loved ones died of natural causes. Friends and family members of the euthanasia patients averaged more education, were less religious, and were made up of more cousins, inlaws, and friends. The death by natural causes group contained more children and siblings. Essinger, Douglas. “Attitudes of Tennessee Physicians toward Euthanasia and Assisted Death.” Southern Medical Journal 96, no. 5 (2003): 427–435. Evans, Glen, Norman L. Farberow, and Kennedy Associates. “Euthanasia,” in The Encyclopedia of Suicide, Second Edition. New York: Facts On File, 2003. Humphry, Derek, and Ann Wickett. The Right to Die: Understanding Euthanasia. New York: HarperCollins, reprint, July 1987.
execution
Putting a condemned person to death. It is also used to describe unlawful premeditated killing of a human being, such as in gangland or Mafia executions. Hanging was the predominant method of execution in this country until quite recently, having been brought to America from England by the early settlers. In 1967 two sociologists estimated that some 16,000 people had been executed by hanging in America. It was inexpensive and easily carried out. However, it could also be very painful, requiring up to twenty minutes for a prisoner to strangle to death. Some were decapitated. In the late 19th century, the “long drop” was introduced. This method of hanging uses a formula that determines the length of the rope to be used based on the weight of the prisoner. The fall is made long enough to break the prisoner’s neck so that he will die almost immediately.
executor 111 Despite improvements in the method, hanging fell out of favor in most jurisdictions. Many bungled executions were reported and hanging became associated with illegal lynchings. Also, the centralization of capital punishment facilitated the use of such methods as electrocution and lethal gas that were not feasible at the local level. Two states, New Hampshire and Washington, currently provide for hanging as an option. Since 1976, three inmates have been executed by hanging: two in Washington, and the last, in 1996, in Delaware. In 1888 New York became the first state to adopt electrocution as its method of execution. William Kemmler was the first man executed by electrocution in 1890. Eventually, 26 states adopted electrocution as a “clean, efficient and humane” means of execution. Today, only Nebraska requires electrocution; nine others offer it as an option. It is the second most common method of execution utilized in the modern era (since 1976). Utah has provided for death by firing squad since territorial days in 1854 (along with hanging and beheading). Nevada also gave inmates the choice of the firing squad or hanging beginning in 1911. Only one inmate was ever executed by shooting in Nevada (in 1913 by an “execution machine” consisting of three pre-aimed rifles) before the state switched to lethal gas. Shooting was also the penalty imposed by the military for deserters in time of war, but has been used only once since the Civil War (Private Eddie Slovik, 1945). Three states (Utah, Idaho, and Oklahoma) provide for execution by firing squad today. Since 1976, there have been only two executions by firing squad, both in Utah, the last in 1996. Nevada was the first state to adopt lethal gas in 1921; it was seen as an improvement over hanging, firing squad, and electrocution because it was less violent and did not disfigure or mutilate the body. Eleven states adopted lethal gas, including three that had previously used electrocution. Five states currently have statutes providing for lethal gas, although none retain it as their only method. Eleven inmates have been executed by lethal gas in the modern era (since 1976). In 1977, Oklahoma became the first state to adopt lethal injection as a means of execution, although it would be five more years until Charles
Brooks would become the first person executed by lethal injection in Texas on December 2, 1982. Today, 37 of the 38 states that have the death penalty use this method of execution. When lethal injection is used, sodium thiopental, an anesthetic that puts the inmate to sleep, is injected first. Next flows pavulon or pancuronium bromide, which paralyzes the entire muscle system and stops the inmate’s breathing. Finally, the flow of potassium chloride stops the heart. Death results from anesthetic overdose and respiratory and cardiac arrest, while the condemned person is unconscious. One potential problem with lethal injection is that medical ethics preclude doctors from participating in executions. Thus, the injections are often performed by inexperienced technicians or orderlies. According to the Death Penalty Information Center, “If a member of the execution team injects the drugs into a muscle instead of a vein, or if the needle becomes clogged, extreme pain can result. Many prisoners have damaged veins resulting from intravenous drug use, and it is sometimes difficult to find a usable vein, resulting in long delays while the inmate remains strapped to the gurney.” Contact information: Death Penalty Information Center 1320 18th Street NW 5th Floor Washington, DC 20036 http://www.deathpenaltyinfo.org See also CAPITAL PUNISHMENT. Florida Corrections Commission. “Executions in the U.S.— A Brief History.” Available online. URL: http://www. fcc.state.fl.us/fcc/reports/methods/emushist.html. Downloaded July 14, 2003.
executor The person responsible for settling the estate of a person who has died. In addition to filing the deceased’s will with the probate court, the executor must see to it that all taxes and any claims against the estate are paid; following which, he or she distributes any assets to the beneficiaries. Any U.S. citizen over the age of 18 who hasn’t been convicted of a felony can be named the executor of a will. Some people choose a lawyer, accountant, or
112 exhumation financial consultant because of his or her expertise. Others choose to appoint a spouse, adult child, relative, or friend, especially if the estate is small. Generally, a family member or friend expects little or no pay for settling the estate and is anxious to get things settled quickly and smoothly.
Metlife Consumer Education Center. “Being an Executor.” Available online. URL: http://www.pueblo.gsa.gov/ cic_text/money/executor/executor.htm. Downloaded July 14, 2003.
exhumation Hughes, Theodore E., and David Klein. The Executor’s Handbook: A Step-By-Step Guide to Settling an Estate for Personal Representatives, Administrators, and Beneficiaries, Second Edition. New York: Facts On File, 2001.
buried.
Digging up a corpse that has been
F failure to thrive
fear of death or dying
Vague terminology borrowed from pediatrics to describe a clinical syndrome in the elderly indicated by a gradual decline in physical and/or cognitive function. Other terms commonly used are “wasting away” and “sundown syndrome.” Its most common symptoms include weight loss, decreased appetite, malnutrition, and inactivity, often accompanied by dehydration, depression, dementia, impaired immune function, and low serum cholesterol. Failure to thrive occurs in both acute and chronic forms, leading to impaired functional status, morbidity from infection, pressure sores, and increased mortality. Failure to thrive has been defined as “an unexplained decrease in function, structure or metabolic process occurring in excess of that expected for age.” But even that is not accepted by everyone. Roubenoff and Harris note, “At this time, there are no commonly accepted definitions for either the ‘failure to thrive’ syndrome or for the newly described syndrome of sarcopenia (loss of muscle mass or strength). This lack of a common definition makes it difficult to contrast study results and understand the etiology of these syndromes.” With early intervention to prevent further progression, failure to thrive can be managed by primary care physicians and health care providers such as social workers and dietitians. Untreated, it can lead to premature death.
See THANATOPHOBIA.
feast of the dead
A ceremony held in certain cultures to honor departed ancestors. For example, the Japanese feast of the dead is called obon season, at which time filial duty is fulfilled by welcoming the spirits of one’s ancestors for an annual return in which their souls are “fed,” then setting them free at the end of the season in the Floating Lanterns Festival. Another example: During Samhain, the Celtic connection to our Halloween and a feast of the dead, it was believed the dead could, if they wished, return to the land of the living for this one night, to celebrate with their family, tribe, or clan. See also DAY OF THE DEAD.
fetal death Technically, the loss of a fetus at any stage is a fetal death. However, in an attempt to separate spontaneous abortion from later pregnancy loss, both the World Health Organization and the American College of Obstetricians and Gynecologists (ACOG) recommend that statistics for fetal death include only deaths occurring in utero in which the fetus weighs 500 g (1.1 pounds) or more. ACOG also recommends including deaths occurring at 22 weeks’ gestation or after (other groups use gestation of 20 weeks). Although this definition of fetal death is the one used most frequently in the medical literature, it is by no means the only definition in use, even in the United States. The National Center for Health Statistics, a part of the Centers for Disease Control and Prevention, periodically updates the Model State Vital Statistics Act and Regulations to assist states in developing vital statistics laws. They recommend reporting fetal
Roubenoff, R., and T. B. Harris. “Failure to Thrive, Sacropenia and Functional Decline in the Elderly.” Clinics in Geriatric Medicine 13, no. 4 (November 1997): 613–622. Verdery, R. B. “Failure to Thrive in Older People.” The Journal of Nutrition, Health & Aging 2, no. 2 (1998): 69–72.
113
114 final details deaths that occur in fetuses weighing 350 g or more or in fetuses at 20 weeks’ gestation or older. This policy is not followed uniformly, and substantial differences exist between states. In addition, not all states interpret the number of weeks of gestation in the same manner. In 1997 the fetal death rate in the United States was 5.8 deaths per 1,000 births. This rate has been steadily decreasing during the past 50 years. Worldwide, the fetal death rate varies considerably, depending on the quality of available medical care. In the United States, the fetal death rate is higher in Hispanic and African-American populations than in other populations. The rate also is higher in women older than 35 years and continues to increase with advancing age. This group is at increased risk because of the higher incidence of medical problems in the mother and because of the higher risk of genetic abnormalities in the fetus. Motor vehicle accidents are a serious threat to developing fetuses. Each year more fetuses than infants die from motor vehicle accidents, according to a report from the University of Pittsburgh’s Center for Injury Research and Control, which looked at the nearly 15,000 fetal death certificates from 16 states from 1995 to 1997. Any fetus over 20 weeks of gestation that died either from direct trauma or maternal trauma was included in the study. Of the 240 traumatic fetal deaths, 82 percent were due to motor vehicle accidents. Once adjusted for the rest of the country, the researchers estimate there are more than 370 motor vehicle-related fetal deaths per year. This compares to an average 180 motor vehicle-related infant deaths per year. “Fetal Deaths.” The Medical Herald, March 2002. Lindsay, James L. “Evaluation of Fetal Death.” eMedicine Textbooks. Available online. URL: http:// www.emedicine.com/med/topic3235.htm. Updated May 14, 2002.
final details Immediately following the death of a family member, the grieving family must attend to what is euphemistically called the “final details”— perhaps to soften the more crass “financial arrangements.” The American Association of Retired Persons (AARP) has prepared a booklet to guide
those who must handle the myriad of final details during the first few months following a death. Their guide is available at no cost from: AARP Grief and Loss Program 601 E Street NW Washington, DC 20049 http://www.aarp.org/griefandloss/articles/70_a.html Basically, it suggests and goes into detail about the following steps: Step 1. Collect the necessary papers Before you can file for various benefits and take care of other financial matters, you will need to collect a variety of documents. Step 2. Contact insurance companies In addition to life insurance, check to see if other forms of insurance covered the deceased. Some loans, mortgages, and credit card accounts are covered by credit life insurance, which pays off account balances. Contact each insurance company about how to claim the policy benefits. Step 3. Notify Social Security You will need to notify the Social Security Administration if the deceased was already receiving Social Security. When applying for survivor’s benefits, you will need to have birth, death, and marriage certificates, Social Security numbers, and a copy of the deceased’s most recent federal income tax return. Step 4. Claim benefits Veterans, Social Security, and employee benefits may be available to you. Unions and other professional organizations provide benefits as well. Step 5. Begin probate Probate is the court-supervised process of paying the deceased’s debts and distributing the estate to the rightful beneficiaries. Jointly owned property, property in trust, and assets with a designated beneficiary (life insurance, 401[k], pensions) do not go through the probate process. If the deceased did not have a will, state law will determine how the deceased’s assets and property will be distributed to family members. The court will appoint a personal representative or the person named in the will as executor to manage the deceased’s affairs. Contact the probate court in the state where the deceased lived for details.
flowers 115 financing end-of-life care
Financing end-of-life care has become a complex and increasingly important issue for state and federal governments, largely due to the recent shift in age demographics. In their report, sponsored by the Robert Wood Foundation, Austin and Fleisher note: “As the number of individuals in need of end-of-life care grows with each passing year, the challenge of providing that care will become more difficult. The health care system, especially those sectors devoted to end-of-life care, will face increasing economic and labor-force stresses in coming decades as a result of elderly Americans living longer than they have in the past. The Medicare and Medicaid programs will bear the brunt of this strain.” Currently the following systems pay for end-of-life care in the United States: Medicare Medicare is the largest funding source for end-of-life care, serving more than 80 percent of people who die in the United States each year. Approximately one-quarter of Medicare’s annual budget is spent on its beneficiaries’ last year of life. Medicaid Approximately 20 percent of Medicare decedents are also Medicaid beneficiaries. Medicaid expenditures for hospice care vary dramatically among states. Private Sector Private sector payers offer a wide range of end-of-life benefits and funding mechanisms, which vary from state to state— often even within one commercial insurance company. Informal Caregivers A significant amount of health care for the dying is paid out of people’s pockets. Some informal caregivers leave their jobs to provide care to terminally ill family members, which can be financially devastating. The report’s authors explain that because the current payment system is siloed (multiple departments, and sections within departments, running different programs, have different and competing— although often duplicated— information and paperwork requirements), it does not promote a continuum of care at the end of life, but integrating funding sources may offer one solution to the challenge of providing comprehensive, cost-efficient, high-quality care. “The challenge for policymakers
is to develop an innovative financing model that captures the Medicare and Medicaid reimbursements for dual-eligibles and to supplement that financing model with private funding. Such financing could come from commercial payers or individual out-of-pocket reimbursements to create a single pool of dollars for a broad-based end-of-life care program.” Austin, Bonnie J., and Lisa K. Fleisher. Financing End-of-Life Care: Challenges for an Aging Population. AcademyHealth. Available online. URL: http://www.hcfo.net/pdf/ eolcare.pdf. Posted February 2003.
Five Wishes at Work
A low-cost and easy-to-use legal document that helps employees and their families plan for difficult elder-care and end-of-life issues. Developed by the nonprofit organization Aging with Dignity, Five Wishes addresses physical, emotional, and spiritual needs of the seriously ill and dying. Designed for use in workplaces large or small, the program consists of a LIVING WILL, which enables people to express their preferences for the person to make care decisions for them, medical treatment they do or do not want, how they want people to treat them, and what they want their loved ones to know. A DURABLE POWER OF ATTORNEY for health care allows people to choose someone to make decisions if they become unable to do so. Employers offering the benefit receive sample e-mail messages, newsletter articles, and flyers to help announce the program. The cost for companies to offer Five Wishes is $1 per person. Five Wishes meets the legal requirements of 35 states and the District of Columbia. Information is available from: Aging with Dignity P.O. Box 1661 Tallahassee FL 32302 (850) 681–2010 (850) 681–2481 (fax) http://www.agingwithdignity.org
flowers Flowers have a long association with death and funerals. Floral offerings were originally intended to gain favor with the spirit of the
116 forensic anthropology deceased. Archaeologists have found shallow graves dug by hand or crude tools, with flowers carefully placed on the body of the deceased. Thera writes, “According to Buddhism, flowerwreaths are essential in order to show the impermanence of life. Just as the beautiful flowers decay and fade away, so life too is shown to decay and fade away. When flowers decay no one likes them. They are thrown away. Similarly after death no one likes the decaying body. This understanding comes when one sees flower-wreaths at a funeral. If flower-wreaths are absent at a funeral, that understanding hardly occurs.” Sending a floral tribute continues to be an appropriate way of expressing sympathy to the family of the deceased. Flowers express a feeling of life and beauty and offer much comfort to the family. Funeral floral etiquette dictates that:
to 40 percent, and it has, according to trade sources, gone down steadily since then. By 1995 sales had further declined to 14 percent of what was now a $14 billion industry. While the floral industry has no statistics on how many flower shops are owned by undertakers, one can assume that the “arrangement” (or a markup) continues to be a sideline source of income for the mortuary. All Funeral Flowers. “Funeral Etiquette.” Available online. URL: http://www.allfuneralflowers.com/funeral etiquette.php. Downloaded July 18, 2003. Thera, Ven. D. Mahinda. “Buddhist Points Misunderstood.” Metta Net-Lanka. Available online. URL: http://www. metta.lk/english/buddhist-points.htm. Downloaded July 19, 2003.
forensic anthropology
• Floral baskets or living plants are appropriate when the sender had a closer relationship to the bereaved than to the deceased; usually sent to the bereaved’s home or workplace. • Sympathy baskets, sent to the funeral home or the bereaved’s home, are appropriate when sent by family or by those who had a deeper or formal relationship with the deceased. • Floral wreaths, crosses, and sprays are appropriate when sent by anyone acquainted with the deceased. The exception to this would be associations that would like to honor the deceased for service during his lifetime. • Lid arrangements and casket covers are traditionally reserved for family members. That said, the use of flowers at funerals appears to be declining as more and more families request that donations to specified nonprofit organizations or religious funds be made “in lieu of” flowers. In The American Way of Death Revisited (1998), Jessica Mitford writes: Funeral flowers accounted for 65 to 70 percent of the cut-flower industry’s revenue in 1960, and many funeral homes either had an ownership interest or a commission “arrangement” with the local florist. By 1970 the market share had dropped
The application of the science of physical anthropology to the legal process. The identification of skeletal, badly decomposed, or otherwise unidentified human remains is important for both legal and humanitarian reasons. Forensic anthropologists identify human remains and assist in the detection of crime. Forensic anthropologists frequently work in conjunction with FORENSIC PATHOLOGIST, odontologists (forensic dentists), and homicide investigators to identify bodily remains and discover evidence of foul play and/or the time lines of death, burial, and so on. In addition to assisting in locating and recovering suspicious remains, forensic anthropologists work to suggest the age, sex, ancestry, stature, and unique features of a decedent from the skeleton. Age can be determined by examining the wear to joints and other body parts. Gender can be determined through the pelvis bone and skull. Forensic anthropologists help identify individuals who died in mass disasters, wars, or due to homicide, suicide, or accidental death.
forensic pathologist
The application of analytical methods, including the AUTOPSY, in order to discover the cause and manner of death of a deceased person so that proper legal action can be taken. Not all doctors who perform autopsies are forensic pathologists; however, in complex cases, forensic pathologists are usually consulted.
fraud in the funeral industry 117 forensic toxicology Evaluation of various bodily fluids for the purpose of discovering whether a person was under the influence of any drug at the time of death.
Foundation of Thanatology The Foundation of Thanatology was established by Dr. Austin H. Kutscher in 1967 to stimulate and organize educational, scientific, and humanistic inquiries into the psychological aspects of: dying, reactions to death, loss, and grief; and recovery from bereavement. Contact information: Foundation of Thanatology Columbia-Presbyterian Medical Center 630 West 168th Street New York, NY 10032 (718) 601–4453 (718) 549–7219 (fax) http://www.lifethreat.org
fraud in the funeral industry Any industry will have its periodic thieves and charlatans, and the funeral industry has had its share. But they are isolated cases and are eventually caught, prosecuted, and fined or jailed, often by people within the industry itself. When consumer groups talk about funeral “fraud,” they are most concerned with over-zealous salesmen and a stretching of the truth in advertising that causes bereaved families to spend much more money than they either want or need to spend. Although the Federal Trade Commission (FTC) does try to monitor the funeral industry, watchdog groups warn that the FTC has so limited a staff that they are unlikely to go after cases of non-compliance unless reported by the public first. In 2000 a U.S. Senate hearing exposed a small but alarming pattern of corruption and consumer fraud. Although relatively few consumer complaints about the funeral industry are submitted, testimony before the committee suggested many problems may go unreported. A California official said his state has only two inspectors to keep tabs on 890 funeral homes. After a six-month investigation, Consumers Digest concluded that pre-need plans are especially fraught with potential for fraud:
At least $20 billion is currently invested in pre-need funeral and cemetery plans, with no way of telling how much of it is invested safely. Cemeteries are among the most loosely regulated of public entities. Badly managed or fraudulent pre-need programs are bilking tens of thousands of older citizens out of millions of dollars, but the Federal Trade Commission’s (FTC’s) FUNERAL RULE—the only federal law covering the industry—does not monitor pre-need funding or direct sales from cemeteries. While the vast majority of death-care firms are handling preneed funds honestly, at least $50 million in preneed funds have been stolen or reported missing nationwide. Although many states are improving their laws, the key weakness of most of the new legislation is that little funding is being set aside for auditing and enforcement to stop future theft.
Among the instances of funeral home fraud that Horn documents in her exposé are exorbitant markups of caskets, hearses, flowers, and vaults; bribing clergy in exchange for a recommendation from the pulpit; and sending gifts to nurses who alert them to dying patients so they can step in immediately and lead the grieving family to think they are the ones who are “supposed to” take the body and prepare it. Young separates typical illegal or highly unethical practices within the funeral industry (substitution of merchandise, bait and switch, charging for services not needed) from “subtle persuasion”—the funeral director’s technique for increasing your desire to spend more. “If the funeral director uses phrases like, ‘This is the final tribute you can give to your father,’ or ‘You only have one chance to do this right for Mom,’ bells and whistles should go off in your head. You are being told that you should think nothing of spending more money.” The Federal Bureau of Investigation (FBI) offers these tips on avoiding funeral and cemetery fraud: • Be an informed consumer. Take time to call and shop around before making a purchase. Take a friend with you who may offer some perspective to help make difficult decisions. Funeral homes are required to provide detailed price lists over the phone or in writing. Ask if their lower priced items are included on their price list.
118 functional death • Be informed about caskets before you buy one. It is a myth that funeral providers can determine how long a casket will preserve a body. • Research funeral home service fees when shopping for products elsewhere. Some of these charges are prohibited by the Federal Trade Commission. • You should know that embalming is not legally required and that a casket is not needed for direct cremations. • Do not be pressured by high-priced pitches from funeral industry vendors. • Require all proposed plans and purchases to be put in writing. • Remember to carefully read contracts and purchasing agreements before signing. Find out if agreements you sign can be voided, taken back, or transferred to other funeral homes. • Before you consider prepaying, make sure you are well-informed. When you do make a plan for yourself, share your specific wishes with those close to you. Horn, Miriam. “The Deathcare Business: The Goliaths of the Funeral Industry are Making Lots of Money Off Your Grief.” U.S. News & World Report, March 23, 1998. Mitford, Jessica. The American Way of Death Revisited. New York: Alfred A. Knopf, 1998. Wasik, John F. “Fraud in the Funeral Industry.” Consumers Digest 34, no. 5 (September–October 1995): 53–59. Young, Gregory W. The High Cost of Dying: A Guide to Funeral Planning. Buffalo, N.Y.: Prometheus Books, 1994.
functional death Vital organs no longer operate naturally; no heart beat or respiration, with vital functions being sustained by artificial means. funeral A ceremony held in conjunction with the burial or cremation of a dead person, often religious in nature. William Lamers, one of the first physicians to develop a hospice program in the United States, defined the funeral as “an organized, purposeful, time-limited, flexible, group-centered response to death.” As far back into history as we can explore, human beings have mourned the
death of loved ones with some type of ceremonial leave-taking. But today’s American and Canadian funeral is much different from the ceremony of only a few generations ago. In the past, funerals tended to be very plain, usually held in the home after family and friends prepared the body, and followed by a short drive to the local church cemetery for burial in a plain pine box. As Schvaneveldt writes, “This is in dramatic contrast to the modern funeral that is carried out by professionals who transform the dead body into a living memorial.” Today’s funeral ranks among the most expensive purchases many consumers will ever make. An average basic funeral cost $5,020 in 1998, up 5 percent from the previous year, although “extras” like flowers, obituary notices, acknowledgment cards, or limousines can add thousands of dollars to the bottom line. Many funerals run well over $10,000. Funeral and burial expenses have risen faster than inflation since 1990. A traditional funeral today includes a casket, preparation and transportation of the body, use of facilities for viewing and/or services, a religious rite and graveside service, the services of a funeral director, an outer burial container, and various ancillary items such as death certificate and flowers. Burial costs will likely not be included in the funeral costs. But “traditional” may not be for long. As the baby-boomer generation approaches the age when they are coming to grips with their own mortality, they are changing funerals much as they have changed every other market they have encountered. Cullen writes, “The funeral is getting a makeover as a growing number of Americans have begun thinking outside the box, so to speak, about how they want to say goodbye to their loved ones. Not for them the weepy, organ-heavy ceremonies of their parents and grandparents. Funerals today are less about mourning a death than about celebrating a life. Custom-made coffins reflect the departed’s devotion to NASCAR or deep-sea fishing. Harleys or Corvettes lead processions in place of hearses. Wakes are staged as garden parties and feature professionally made biopics of the deceased. Cremated remains are fashioned into jewelry, fused into artwork, and stuffed into fireworks for those who want an exit with a real bang. There’s not a cookie-cutter
funeral parlors/homes 119 funeral anymore.” In response, she says, funeral directors have become more like event planners, complete with prop rooms and talk about their “production quality.” See also DEATHCARE INDUSTRY; FUNERAL SERVICE CONSUMER ASSISTANCE PROGRAM; MEMORIAL SERVICE.
(802) 865–8300 (800) 765–0107 (toll free) http://www.funerals.org
Cullen, Lisa Takeuchi. “What a Way to Go: Death-Defying Rites Are Making Funerals More Personal and—Dare We Say It?—More Fun.” Time, July 7, 2003. Funeral Consumer Alliance. “Twelve Reasons People Spend ‘Too Much’ for a Funeral.” Available online. URL: http:// www.funerals.org/personal/toomuch.htm. Downloaded July 18, 2003. Mansell, John S. The Funeral: A Pastor’s Guide. Nashville, Tenn.: Abingdon Press, 1998. Schvaneveldt, Jay D. Remembering at Death: Funeral and Related Rituals. Logan: Utah State University, 1989.
funeral director One whose business is the management of funerals. The more modern term for UNDERTAKER. Also called mortician.
See also MEMORIAL SOCIETY.
funeral homes
See FUNERAL PARLORS/HOMES.
funeral leave
See BEREAVEMENT LEAVE.
funeral mass
See MASS OF CHRISTIAN BURIAL.
funeral board
Each state except Colorado and Hawaii has a funeral board or agency that regulates funeral directors. About half the states have some sort of cemetery regulation.
Funeral Consumers Alliance (FCA) A federation of consumer information societies dedicated to protecting a consumer’s right to choose a meaningful, dignified, affordable funeral. These societies are nonsectarian, nonprofit, educational organizations that were started in the late 1930s (known as memorial societies) because of two influences: the depression and the increasing cost of funerals due to the use of embalming and more elaborate manufactured caskets. There are now approximately 115 group members located throughout the United States; the number fluctuates because all groups are volunteer run. Until 1980 Canadian groups were also members of FCA, but broke off after the U.S. Federal Trade Commission laws changed, making the American funeral industry regulation too disparate for FCA to continue to be a single organization for both Americans and Canadians. Contact information: Funeral Consumers Alliance 33 Patchen Road South Burlington, VT 05403
funeral parlors/homes Immigrants arriving in America took up residence in the large cities and lived in small apartments. When those families experienced the death of a family member, they had no parlor in which to hold the wake. In response to that need, businessmen in the large cities opened funeral parlors that families could rent for their wake and funeral. In the outlying communities, the tradition of home-based wakes and funerals continued until the early 1900s when undertakers began offering their homes for wakes and funerals—and thus was born the American funeral home. In the beginning, the funeral “business” took place on the ground floor of the undertaker’s home, with his family residing on the upper floors. Eventually, as the industry changed and the “undertaker” became a mortician or funeral director, providing more of the services (embalming, flowers) themselves rather than simply arranging that these all get done, the funeral home’s space requirements grew in order to accommodate embalming rooms, casket display areas, chapels, and so on. The modern funeral home may still look like a “home,” but it is usually a multifaceted business. Those early funeral parlors or homes were established during a time when death happened earlier
120 funeral planning in life and often at home, so people were more accustomed—and more comfortable—with it. During the past generation, when both longer lifespans and more geographically spread families—with the elderly living apart from the family in some kind of assisted living facility—have led to a distance from death and the dying, people are not as quick to accept funeral homes in their neighborhoods. Founders of some planned cities, such as Reston, Virginia, for example, “forgot” to even include cemeteries. In some more “fastidious” suburbs such as Fairfax, Virginia, only a handful of funeral homes are allowed, in part, Whoriskey writes, “because officials, in their zeal to protect prosperous enclaves from every unpleasantness, have excluded the business of death from much of the county. Funeral homes are increasingly viewed as objectionable.” Moore, Rob. “The American Funeral.” Clay County Genealogical Society, Center Point, Indiana. Available online. URL: http://www.ccgsilib.org/american_ funeral.html. Downloaded July 17, 2003. Whoriskey, Peter. “Fairfax Code Keeps Death at a Distance.” Washington Post, December 28, 2002.
funeral planning Many couples and families avoid the subject of death, leaving the funeral decisions to others. If death follows a lengthy terminal illness, there will be time for thoughtful funeral planning. But too often, death is sudden and unexpected. With no planning ahead of time, the bereft family is especially susceptible to poor decision-making and high-pressure sales tactics of the deathcare industry. According to Funeral Consumers Alliance, lack of planning is a primary cause of high funeral costs. “When Mom dies, it may be altogether too easy to say, ‘I want one just like Dad’s funeral,’ without looking at the actual cost. Many people feel so devastated and overwhelmed at a time of death that they leave all funeral planning to the funeral director. That’s like giving them a blank check.” The Federal Trade Commission offers funeral planning guidelines, including: Thinking ahead allows you to choose the specific items you want and need and compare the prices
offered by several funeral providers. It also spares your survivors the stress of making these decisions under the pressure of time and strong emotions. You can make arrangements directly with a funeral establishment or through a funeral planning or memorial society—a nonprofit organization that provides information about funerals and disposition but doesn’t offer funeral services. If you choose to contact such a group, recognize that while some funeral homes may include the word “society” in their names, they are not nonprofit organizations. One other important consideration when planning a funeral is where the remains will be buried, entombed or scattered. In the short time between the death and burial of a loved one, many family members find themselves rushing to buy a cemetery plot or grave—often without careful thought or a personal visit to the site. You may wish to make decisions about your arrangements in advance, but not pay for them in advance. Keep in mind that over time, prices may go up and businesses may close or change ownership. However, in some areas with increased competition, prices may go down over time. It’s a good idea to review and revise your decisions every few years, and to make sure your family is aware of your wishes. Federal Trade Commission. “Funerals: A Consumer’s Guide.” Available online. URL: http://www.ftc.gov/ bcp/conline/pubs/services/funeral.htm. Posted June 2000. Funeral Consumers Alliance. “Twelve Reasons People Spend ‘Too Much’ for a Funeral.” Available online. URL: http://www.funerals.org/personal/toomuch.htm. Downloaded July 18, 2003. Young, Gregory W. The High Cost of Dying: A Guide to Funeral Planning. Buffalo, N.Y.: Prometheus Books, 1994.
funeral pyre Wood heaped for burning a dead body as a funeral rite. Used since ancient days, the funeral pyre continues today in certain cultures, especially in Asia, as a form of public cremation and religious ceremony. Constance Jones explains in
funerary mounds 121 R.I.P. (HarperCollins, 1997) that “bodies placed on funeral pyres are usually covered in some way. Aboriginal Australians painted bodies with red ocher. The Babylonians covered bodies with cloth that could easily catch fire and then placed them in clay coffins inside the funeral pyres.” Until outlawed by British colonial rulers, Hindu Indian widows were coerced by their in-laws to throw themselves upon their husbands’ funeral pyres in a ritual suicide known as suttee. Today’s Hindu women perform a symbolistic suttee by prostrating themselves on their husband’s funeral pyre until just prior to its lighting.
Many funeral providers offer various “packages” of commonly selected goods and services that make up a funeral. But when you arrange for a funeral, you have the right to buy individual goods and services rather than having to accept a package that may include items you do not want. Also, according to the Funeral Rule, if state or local law requires you to buy any particular item, the funeral provider must disclose it on the price list, with a reference to the specific law; the funeral provider may not refuse, or charge a fee, to handle a casket you bought elsewhere; and a funeral provider that offers cremations must make alternative containers available.
Funeral Rule
Funeral Service Consumer Assistance Program (FSCAP) A nonprofit consumer service designed
A federal regulation issued in 1984, then updated in 1994, that protects consumers; it is enforced by the Federal Trade Commission (FTC). Not every state has adopted the rule, so where not enforced by state regulations, any complaints must go to the federal level. Lisa Carlson, in Caring for the Dead, says, “Generally, however, the FTC acts only when there’s a pattern of mischief, not on single violations or on behalf of individuals. It is nevertheless important to send copies of any complaints to the FTC.” The Funeral Rule requires funeral directors to provide the buyer itemized prices in person and, if asked, over the phone. The rule also requires funeral directors to give other information about their goods and services. For example, if you ask about funeral arrangements in person, the funeral home must give you a written price list to keep that shows the goods and services the home offers. If you want to buy a casket or outer burial container, the funeral provider must show you descriptions of the available selections and the prices before actually showing you the caskets.
to help people understand funeral service and related topics and to help them resolve funeral service concerns. FSCAP service representatives and an intervener assist consumers in identifying needs, addressing complaints, and resolving problems. FSCAP does not arbitrate disputes or have enforcement or disciplinary authority to govern any aspect of funeral services, including pre-need. The program is recognized by the U.S. Federal Trade Commission. Free brochures on funeral related topics are available. Contact: Funeral Service Consumer Assistance Program P.O. Box 486 Elm Grove, WI 53122–0486 (708) 827–6337 (800) 662–7666 (toll-free) (262) 789–6977 (fax)
funerary mounds
See BURIAL MOUNDS.
G on the following scales: Atypical Responses, Despair, Anger/Hostility, Guilt, Loss of Control, Rumination, Depersonalization, Somatization, Loss of Vigor, Physical Symptoms, and Optimism/Despair. No significant differences were found on the scales of Denial, Social Desirability, Social Isolation, Death Anxiety, and Loss of Appetite. But Gilbert does see drawbacks with thinking in terms of “women’s grief” and “men’s grief,” largely because that viewpoint rarely reflects the reality of life. “More realistically, what exists is gender-based tendencies. A more accurate statement would be that ‘Men, in general, tend to be more. . . . while women tend, in general, to be more . . .’”
gas chamber
Instrument of execution consisting of a sealed chamber into which lethal poison gas is pumped. In 1924 the use of cyanide gas was introduced in Nevada, which was looking for a more humane way of executing its inmates than by hanging. When pumping the gas into the prisoner’s cell while he slept did not work (because the gas leaked from his cell), the gas chamber was developed. When first used, deaths took anywhere from two to 11 minutes. Today, five states (Arizona, California, Maryland, Missouri, and Wyoming) authorize lethal gas as a method of execution, but all have lethal injection as an alternative method. A federal judge in California ruled in 1994 that the gas chamber is an inhumane method of punishment and thus outlawed the practice in California. Currently, lethal injection is administered in California unless the inmate requests the gas chamber.
Chen, J. H., et al. “Gender Differences in the Effects of Bereavement-Related Psychological Distress in Health Outcomes.” Psychological Medicine 29, no. 2 (March 1999): 367–380. Schwab, R. “Gender Differences in Parental Grief.” Death Studies 20, no. 2 (March–April 1996): 103–113.
gender differences in grief
In her course on “Grief in a Family Context,” Kathleen R. Gilbert, Ph.D., Indiana University, notes that “until the past few decades, little attention was paid to gender as a factor in grief and grieving. ‘Normal’ grief was assumed to follow a particular pattern.” However, she says, gender and gender role expectations are now recognized as important factors in grief. In their study of 150 widows and widowers, Chen et al. concluded that there appear to be gender differences in the levels of psychological symptoms resulting from bereavement and in the effects of bereavement on subsequent mental and physical health for widows and widowers. Schwab examined gender differences in the grief of parents who lost their child, using the Grief Experience Inventory. Results showed that the mothers’ scores were significantly higher than those of fathers
genocide Systematic killing of a racial, ethnic, cultural, or political group. The horror of the Holocaust of World War II, when Hitler set about exterminating the Jews, propelled the nations of the world to declare genocide a punishable crime under international law. On December 9, 1948, the United Nations General Assembly adopted the Convention for the Prevention and Punishment of the Crime of Genocide. “Genocide” was a new word, coined after the events of World War II.
ghost Generally considered to be the visible disembodied soul of a dead person; also called specter, apparition, or phantom. The belief in ghosts is 123
124 ghost sickness ancient and widespread. Although most religions do not officially acknowledge the existence of ghosts, Boston College philosophy professor and Christian writer Dr. Peter Kreeft, author of Everything You Ever Wanted to Know about Heaven (Ignatius Press, 1990), writes, “There is enormous evidence of ‘ghosts’ in all cultures. . . . Even taking into account our penchant to deceive and be deceived, our credulity and fakery, there remain so many trustworthy accounts of ghosts—trustworthy by every ordinary empirical and psychological standard—that only a dogmatic prejudice against them could prevent us from believing they exist.” According to Leslie Spier, University of New Mexico, “In cultures that worship ancestors, ghosts are not considered ancestral dead, but identities who are impersonal, unidentifiable, unpredictable, inimical, or malignant. Such acts as ridding houses of the spirits of the dead or foiling ghosts, are common, but they are magical acts rather than rites of worship and reverence.” Some individuals fear ghosts because they are supernatural phenomena and involve a fear of the unknown. Doctor and Kahn explain, “The fear of ghosts may have been planted in the minds of primitive man because of concern about the afterlife of deceased relatives. Dead ancestors, who were worshiped in many early cultures as gods or near-gods, were thought to be easily angered. Gifts and ceremonies were necessary to sustain their goodwill and decrease hostilities the dead were believed to bear toward the living. Belief in and fear of ghosts was furthered by desires for a pleasant afterlife, a heaven or Elysian fields, accessible to some but not all spirits. Criminals and witches were condemned to walk the earth rather than enter a restful existence after death. The spirits of murder victims or individuals who had been buried improperly could not rest in peace until the wrong had been righted. Burial customs and rituals indicate a desire to keep the spirits of the dead away from the living.” Doctor, Ronald M., and Ada P. Kahn. “Phasmophobia,” in The Encyclopedia of Phobias, Fears, and Anxieties, Second Edition. New York: Facts On File, 2000.
ghost sickness A culture-bound syndrome described in DSM-IV as a preoccupation with death
and someone who has died, sometimes associated with witchcraft; frequently observed among members of many American Indian tribes. Symptoms include nightmares, weakness, anxiety and feelings of danger, poor appetite, dizziness and fainting, hallucinations, loss of consciousness, confusion, feelings of futility, and a sense of suffocation. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). Washington, D.C.: American Psychiatric Association, 1994.
good death A “good death” is one that is free from avoidable distress and suffering for patients, families, and caregivers. A good death is also in general accord with the patients’ wishes and reasonably consistent with clinical, cultural, and ethical standards. Dr. Tony Back, University of Washington and VA Puget Sound Health Care System, says a good death is more than proper medical treatment. “What people choose when they think about a good death for themselves is often beyond what medicine can provide—for instance, an affirmation of love, a completion of important work, or a last visit with an important person. As a physician, I can’t always make those things happen.” In one study of 77 physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members, the consensus drawn was that a good death involves health care providers who attend to the patient’s fears of dying in pain, the participation of patients in decision making, patients knowing what will happen during the dying process and afterward, and a sense of completion by spending meaningful time with loved ones and paying attention to spiritual beliefs. A recurring theme was the importance of treating the patient as a unique, whole person and not a disease or case. According to Thomas, whether or not a person dies a “good death” can have a profound effect on the family. “For many cultures, how the surviving members cope with the grief and loss of the death experience is based on their perception of whether or not the deceased had a good death. For many in the African-American community, the concept of good death refers to whether the individual was able
grave liner 125 to have some control over the dying process and bring orderly closure to the end-of-life experience.” Back, Tony. “End-of-Life Issues.” Ethics in Medicine, University of Washington School of Medicine. Available online. URL: http://eduserv.hscer.washington.edu/ bioethics/topics/eol.html. Downloaded July 20, 2003. Thomas, Norma D. “The Importance of Culture Throughout All of Life and Beyond.” Holistic Nursing Practice 15, no. 2 (January 2001): 40–46.
bottom, but once the casket and liner or vault are in place, only two or three feet of dirt will be between them and the ground level. “Double depth” graves, for the interment of two people, are allowed in many cemeteries, where one casket is placed in the grave at an approximate depth of seven feet. When a second interment is required, the second casket is placed on top of the first casket at standard depth. The Web site “Find a Grave” (http://www. findagrave.com) allows visitors to virtually search for the graves of famous people as well as those of their own family and ancestors.
Grace Project, The
A collaboration of individuals and organizations working to promote high-quality end-of-life care for terminally ill inmates in prisons and jails. Historically, end-of-life care has not been a high priority for correctional facilities because of the low number of inmates who face their final days in confinement. But the AIDS epidemic, followed by the passage of tough sentencing laws, compounded by the shear growth in incarceration, has dramatically increased the number of deaths occurring in prison. More than 2,500 prisoners died of natural causes in state and federal correctional facilities in 1998. With longer sentences and limited use of medical parole and compassionate release, the number of terminally ill inmates is expected to grow as the older inmates age in place. Contact Information: Volunteers of America—National Office 1660 Duke Street Alexandria, VA 22314–3427 (800) 899–0089 (703) 341–7001 (fax)
[email protected] http://www.graceprojects.org
grave A place for the burial of a corpse, especially beneath the ground. When a grave is marked by a protective or memorial structure it is often referred to as a TOMB. The depth of a grave is governed more often by cemetery regulations than by state law. The “six feet under” description of a grave goes back to a time in our history when people were not buried in grave liners or vaults, and sometimes not even in caskets. Six feet was considered deep enough to prevent animals from digging up the grave. Today, a grave may be six feet deep at the
graveclothes
The clothes or dress in which the dead are buried. See also BURIAL CLOTHES; SHROUD.
grave liner
Also known as a burial container, a grave liner or burial VAULT is commonly used in a traditional, full-service funeral. The vault or liner is placed in the ground before burial, and the casket is lowered into it at burial. The purpose is to prevent the ground from caving in, especially during the first year after burial when the soil compacts significantly, then as the casket deteriorates over time. A grave liner is made of reinforced concrete and covers only the top and sides of the casket. The Federal Trade Commission warns that state laws do not require either a vault or liner, and funeral providers may not tell you otherwise. “However, keep in mind that many cemeteries require some type of outer burial container to prevent the grave from sinking in the future. Neither grave liners nor burial vaults are designed to prevent the eventual decomposition of human remains. It is illegal for funeral providers to claim that a liner or vault will keep water, dirt or other debris from penetrating into the casket if that’s not true.” Carlson adds that Jewish and Muslim cemeteries, honoring their tradition of returning to the earth, rarely require a grave liner or vault, and warns also about potential deceptive sales policies. “A grave liner is about half the price of a coffin vault, but many funeral directors claim they ‘stock’ the vaults only.” Carlson, Lisa. Caring for the Dead: Your Final Act of Love. Hinesburg, Vt.: Upper Access Books, 1998.
126 grave marker grave marker
Something placed in remembrance of the dead at the grave. Grave markers may be temporary, such as a plaque or stake to mark the grave while a more permanent marker is bring made, or permanent, such as a GRAVESTONE (HEADSTONE or footstone), cross, bench, statue, or tombstone. Originally, grave markers were simply piles of stones, with another stone added by each person who visited the grave site. Without the buildup of stones, the elements would gradually make the grave site difficult or impossible to find. Around the eighth century B.C.E., the Greeks used large decorated pots to mark graves. Old cemeteries tend to have upright grave markers; new cemeteries (post1960) tend to have flat bronze markers on a stone or cement base.
grave robbing The fear of the desecration of burial sites is both ancient and widespread, as expressed by the care with which the Egyptians prepared and protected the bodies of their dead from all harm. The late-18th-century shortage of cadavers for legitimate medical research and dissection posed a problem for scientists and students, some of whom took to grave robbing for their corpses. In 1789 New York passed a law making it possible for doctors to obtain cadavers without resorting to body-snatching. A similar bill was passed in London in 1832. Many African Americans were victims of a grave-robbing ring that clandestinely supplied medical students at the Medical College of Georgia, Augusta, with illegal cadavers during the 19th century, the grave robbers receiving $10 to $20 per body. Seabrook writes, “Many blacks, especially the poor, avoided medical help during the grave-robber era because they feared getting bad treatment, dying and being dissected. That fear prompted them to rely more on African-based folk remedies than on conventional medicine. Even today, that legacy lingers, and may be why many AfricanAmericans, especially the elderly, distrust the medical establishment.” Grave robbing for mercenary purposes dates back at least as far as the ancient Egyptians, when grave robbers looted the relatively fresh tombs of the pharaohs and lower nobility looking for valuables that were buried with the dead for their journey
into the netherworld. Koop adds that, similarly, the plunder of Peru’s relics began with the Spanish conquest and has become part of Peru’s culture. “For centuries, ancient Peruvian graves full of archaeological treasures were seen as mines to exploit and only in the last 30 years has legislation sought to control the traffic. In 1938, in the greatest known plunder of the century, the owner of Batan Grande, a hacienda 30 miles north of Sipan, used a bulldozer to break open a pyramid and is said by witnesses to have extracted 15 potato sacks full of gold artifacts.” Koop, David. “Grave Robbing Is Link to Underground Trade.” Associated Press, 1997. Seabrook, Charles. “The Body Snatchers of Augusta.” The Atlanta Journal and Constitution, March 8, 1998.
gravestone
A stone placed on a grave to mark it, often bearing an inscription listing years of birth and death, name, and perhaps an EPITAPH. According to the Connecticut Gravestone Network, the earliest grave markers used in many first settlements of America were made of wood or simple fieldstone. The larger cities, for example Boston, Massachusetts, and Newport, Rhode Island, had established communities with large populations that would support economically a full-time business of making or providing coffins and gravestones. Most gravestones were made by stonemasons or quarry holders who also traded in architectural features such as foundation stone for buildings and bridges, mantels, doorjambs and fireplaces. In cities like Boston and Newport, the works of craftsmen like the Stevens family were well known and are found all the way down the coast to Charleston, South Carolina. These eloquent and elaborately carved slates were often shipped to other ports to fill the need for those who could afford to do so. Poorer local folk would do with what they could until a man of skill would join their community or at least would pass through and stay long enough to fill some orders. The Stevens shop of Newport is the oldest established gravestone carving business in America—still producing slate memorials as it did in the 1600s. But most gravestones today are engraved using state-of-the-art laser etching.
Greeks, ancient 127 gravestone rubbing The practice of using various materials to obtain the relief impression of lettering, carving, or designs from a gravestone. Gravestone rubbing is believed to have originated with the ancient Chinese who used “temple rubbing” as a way of communicating the “written word” and is considered a forerunner to the printing press. Gravestone rubbings create a useful record of family information and funerary symbolism. Sometimes a rubbing becomes the only permanent reproduction of gravestones that deteriorate over time or because of vandalism. For this reason, gravestone rubbing has become popular among genealogists and folklorists as well as historians. Ornate gravestones from the Victorian era are especially “desirable” for rubbing. However, gravestone rubbing is becoming controversial—even outlawed in some places, in order to prevent further damage to the gravestones. A leaflet, “Gravestone Rubbing for Beginners,” is available from: Association for Gravestone Studies 278 Main Street Suite 207 Greenfield, MA 01301 (413) 772–0836
[email protected] See also SYMBOLISM ON GRAVESTONES. Karrick, Katie. “What Is a Gravestone Rubbing?” America Online Members. Available online. URL: http://members.aol.com/TombView/rubbings.html. Downloaded July 21, 2003.
graveyard
A tract of land used for burial. Graveyards became CEMETERIES about the same time undertakers became funeral directors, as Americans began distancing themselves from things death related and the industry cooperated by changing the nomenclature. As cities expand into the suburbs and swallow up rural countryside, early church and family graveyards are “found” and cause road rerouting or building replanning, particularly in the South. Amon explains that in 1623, the Virginia House of Burgesses passed a law requiring large plantations to have graveyards, eliminating the need for large
community and church plots. That same idea was passed on to smaller plantations and family farms, with the model following into the early 20th century. Other states have the similar challenge of finding and mapping centuries-old graveyards—sometimes without markers or overgrown with vegetation—to protect them from developers who have no way of knowing they are there. Amon, Michael. “Reclaiming Forgotten Family Graveyards.” The Washington Post, July 8, 2001.
Greeks, ancient Many Greeks died because of childhood diseases, making the average life span only 25 years, although many Greeks lived to age 80. Much of what we know about the ancient Greeks comes from their burials, as they often buried dead people with some of their possessions and marked graves with carved gravestones. Graveyards were outside the walls of a city to keep wandering spirits away from the living The ancient Greeks believed in reincarnation, enclosing information in the tomb of the deceased regarding negotiating the underworld. They also placed coins under the tongues of corpses for Charon, the boatman who took them across the river Styx to the land of eternity, and enclosed honey cakes next to the bodies in their tombs as an offering to Cerberus, the three-headed dog who guarded the entrance to HADES. The dead were often buried with some of their belongings, such as jewelry, perfume, pots of make-up, and tools for spinning and weaving for the women; weapons for the men. Interment was delayed three days to prevent premature burial, then the procession to the burial tomb was followed by wailing mourners with the wealthy sometimes hiring extra people to follow the procession, weeping and wailing and tearing at their hair and clothes (a sign of mourning to the Greeks). The wealthiest would have private family tombs, with the walls and floors decorated with mosaic tiles. Cremation came into practice about 300 B.C.E., after which ashes of the dead were buried in a jar or container made of marble. Richer families would then set up a tombstone, which would be decorated with pictures or inscriptions about the person. Families visited graves once a year
128 green burials for special prayers and offerings to the dead of food, wine, and oil, and to tend to the graves.
green burials Also called woodland burials or green funerals; an environmentally sensitive burial option popularized in Britain. Green burial grounds, which are located in woodland or meadows, are kept as wild and as natural as possible, with memorials and headstones not permitted, although memorial trees or shrubs can usually be planted or indigenous stones placed, to mark the graves. Burial locations may be mapped with a GIS (geographic information system), allowing future generations to locate an ancestor’s final resting place. In a green burial, no toxic embalming fluids are used, and the body is buried in a coffin made from biodegradable materials, such as willow or chipboard, or a “lovely woollen shroud.” Proponents add that traditional cemeteries must be cared for using air-polluting lawn mowers, fertilizers, and weed killers. A green cemetery also protects and preserves open space from future development. The green funeral option continues to grow in popularity in England, with about 200 woodland burial sites around the country. The United States has been slow to follow; cynics say this is due to the lower profits for the deathcare industry, but consumers must buy into the concept of no embalming and less protection for the body. The first green cemetery in the United States was Ramsey Creek preserve, in Westminster, South Carolina, with its first burial in 1998. Other states offering or in the process of establishing green burial sites include Florida, Colorado, California, New York, Washington, and Wisconsin. American green cemeteries are more likely to allow headstones than are those in England. The Natural Death Centre is a charitable project launched in Britain in 1991 to help people arrange environmentally-friendly funerals. Its Web site URL is http://www.naturaldeath.org.uk. The center lists U.S. and Canadian green burial information and resources at http://www.naturaldeath.org.uk/ USAandCanadaResources.htm Smith, Nancy. “Greener Ways to the Great Beyond.” Mother Earth News. Available online. URL: http://www. motherearthnews.com/index.php?page=rec&id=2052. Posted April 2003.
grief
A normal but intensely powerful, painful, and stressful emotional reaction caused by the loss of a loved one or of something with very important personal significance in an individual’s life; grief is a type of suffering and a symptom of BEREAVEMENT. An ACUTE GRIEF REACTION may come considerably after the loss or traumatic event, or it may not come at all in the manner expected. Although the expression of grief is unique to each individual, there are recognized STAGES OF GRIEF that include some common characteristics. Many people who have experienced loss say that it can take up to two years to adjust and get on with life. However, overwhelming feelings of loss do recur. In the long run, a positive attitude can help overcome depressed feelings and the stresses of adjustment. A support system often influences how well an individual adjusts after a period of grief. The recovery process may be accelerated with friends and family nearby. Widowed persons with no relatives and few friends seem to have the most difficult time adjusting to the death of a loved one. Some parents who have lost an infant try to have another baby within a few years; however, the feeling of loss of the first one never really goes away. See also COMPLICATED GRIEF REACTION; PREPARATORY GRIEF. Kahn, Ada P. “Grief,” in Stress A to Z. New York: Facts On File, 1998.
grief counseling and therapy Most of the support that people receive after a loss comes from friends and family, although doctors and nurses may also be a source of support. For people who experience difficulty in coping with their loss, grief counseling or grief therapy may be necessary. Grief counseling helps mourners with normal grief reactions work through the tasks of grieving. It can be provided by professionally trained people, or in self-help groups where bereaved people help other bereaved people. All of these services may be available in individual or group settings. The goals of grief counseling include: • Helping the bereaved to accept the loss by helping him or her to talk about the loss
grief industry 129 • Helping the bereaved to identify and express feelings related to the loss (for example, anger, guilt, anxiety, helplessness, and sadness) • Helping the bereaved to live without the person who died and to make decisions alone • Helping the bereaved to separate emotionally from the person who died and to begin new relationships • Providing support and time to focus on grieving at important times such as birthdays and anniversaries
the physical and emotional pain of grief, adjusting to life without the loved one, and emotionally separating from the loved one and going on with life without him or her. It is important that these tasks are completed before mourning can end. In grief therapy, six methods may be used to help a mourner work through grief: 1. Develop the ability to experience, express, and adjust to painful grief-related changes. 2. Find effective ways to cope with painful changes.
• Describing normal grieving and the differences in grieving among individuals
3. Establish a continuing relationship with the person who died.
• Providing continuous support
4. Stay healthy and keep functioning.
• Helping the bereaved to understand his or her methods of coping
5. Reestablish relationships and understand that others may have difficulty empathizing with the grief they experience.
• Identifying coping problems the bereaved may have and making recommendations for professional grief therapy Grief therapy is used with people who have more serious grief reactions. The goal of grief therapy is to identify and solve problems the mourner may have in separating from the person who died. When separation difficulties occur, they may appear as physical or behavior problems, delayed or extreme mourning, conflicted or extended grief, or unexpected mourning (although this is seldom present following lengthy terminal illnesses such as cancer deaths). Grief therapy may be available as individual or group therapy. A contract is set up with the individual that establishes the time limit of the therapy, the fees, the goals, and the focus of the therapy. In grief therapy, the mourner talks about the deceased and tries to recognize whether he or she is experiencing an expected amount of emotion about the death. Grief therapy may allow the mourner to see that anger, guilt, or other negative or uncomfortable feelings can exist at the same time as more positive feelings about the person who died. Human beings tend to make strong bonds of affection or attachment with others. When these bonds are broken, as in death, a strong emotional reaction occurs. After a loss occurs, a person must accomplish certain tasks to complete the process of grief. These basic tasks of mourning include accepting that the loss happened, living with and feeling
6. Develop a healthy image of oneself and the world. Not everyone needs grief counseling. Several researchers have recently concluded that people who share their thoughts and feelings following the death of a loved one do not adjust to the loss any better than those who do not, and people can quite successfully on their own find ways of coping with loss. Psychologist Robert A. Neimeyer goes so far as to say that grief counseling and therapy are “typically ineffective, and perhaps even deleterious, at least for people experiencing a normal bereavement.” He does add, “On the other hand, there is some evidence that grief therapy is more beneficial and safer for those who have been traumatically bereaved.” Large, Elizabeth. “There May Not Be a ‘Best’ Way of Dealing with Grief.” Funeral & Estate Planning Guide. The Union Leader, April 11, 2003. National Cancer Institute. “Loss, Grief, and Bereavement.” National Institutes of Health. Available online. URL: http://www.nci.nih.gov/cancerinfo/pdg/supportivecare/bereavement/patient/. Posted July 9, 2003. Neimeyer, Robert A. “Searching for the Meaning of Meaning: Grief Therapy and the Process of Reconstruction.” Death Studies 24, no. 6 (September 2000): 541–558.
grief industry The name used by many—a bit derisively—to cover the recent media-driven emergence of grief counseling services, from counselors
130 grief reaction to therapists to self-help authors to psychologists to psychiatrists. Following national tragedies, such as the Oklahoma City bombing, Columbine shooting, and World Trade Center attacks, the grief industry appeared to bloom, as 24-hour cable TV and corporations by the dozen called on their services. Although professional grief counseling can be of immense help to certain individuals, authors caution that not all counseling is competent—or needed. Yale psychiatrist Sally L. Satel, who is also a senior associate at the Ethics and Public Policy Center, writing in The New York Times, calls it “the commodification of grief.” She writes: The Grief Industry is apparently booming: bereavement books, grief chat rooms, expensive workshops in grief education and exams for certification. You need us, the experts say. But do we? Most people, in fact, are quite resilient and don’t need registered experts to deal with anguish. Are our priests and rabbis not up to the task? Are our families’ instincts to comfort not keen enough? The deployment of counselors—a well-meaning effort, I wholly grant you—sends an odd message: that people are too fragile to soothe and strengthen themselves. Add to the tyranny of experts the tyranny of the news media and you have an unholy therapeutic alliance. While grief counselors push people toward open self-expression, the microphones are on and the cameras rolling. Making agony so public is unlikely to help their “clients.”
grief reaction Reaction to grief is the feeling of loss and anxiety an individual experiences when a crucial bond is disrupted. Many individuals call into play their own defense mechanisms. These mechanisms may help an individual cope with the pain of the loss. Normal grief reaction may be characterized by physical reactions, feelings of emptiness, preoccupation with images of the deceased, guilt feelings, or change in activity patterns. Thus, grief reactions can be psychological, emotional, physical, or social. Psychological/emotional reactions can include anger, guilt, anxiety, sadness, and despair. Physical reactions can include sleep difficulties, appetite changes, somatic complaints, or illness. Social reactions can include feelings about taking
care of others in the family, the desire to see or not to see family or friends, or the desire to return to work. As with bereavement, grief processes are dependent on the nature of the relationship with the person lost, the situation surrounding the loss, and one’s attachment to the person. Kahn describes these grief reactions this way: Numbness is a pervasive feeling that enables the mourner to get through the first few days following the death of the loved one; it may last from a few days to a few months. Hallucinations are also common among the recently bereaved; in some cases, they believe that the dead person walks into the room or they see him or her in a crowd. In the case of a deceased infant or child, a parent may hear his or her cry or voice. As the initial feeling of numbness begins to wear off, the individual may feel anger and despair and feel overwhelmed by the circumstances; these feelings can lead to depression. Physical symptoms are fairly common, including headaches, insomnia, or gastrointestinal complaints. Attempted suicide is an abnormal expression of grief, but is not uncommon. There may be an increase in use of tranquilizer drugs and alcohol at this time. The individual may experience intense feelings of helplessness. Questions arise: “Could I have prevented this from happening? Why wasn’t I powerful enough to do something more?” Such thoughts are part of the human condition. People like to feel that they are in control at all times, and with grief they feel the loss of that control.
As a result of a classic study following the Coconut Grove nightclub fire in Boston in 1942, five normal stages of grief reaction were defined as: initial shock, intense sadness, withdrawal from the environment, protest of the loss, and finally, a gradual resolution of the loss. Doctor and Kahn add, “There is a higher death and illness risk for individuals for a year after they lose a spouse.” Not every psychologist believes the long-held truth that people must confront their feelings about the death of a loved one to adjust to the loss, that those who do not are simply repressing their emotions. Columbia University professor George
guilt 131 Bonanno argues that there is no evidence for that assumption. In his study, almost half of the bereaved showed no real symptoms of depression after the loss; they had simply adjusted to their loss quickly and got back into the stream of things. Other studies have essentially agreed with Bonanno’s findings, yet some scientists continue to argue that these apparently quick-to-adjust subjects are “just depressed and don’t know it.” Bonanno, George. “Resilience to Loss and Chronic Grief: A Prospective Study from Pre-loss to 18 Months PostLoss.” Journal of Personality and Social Psychology 83, no. 5 (November 2002): 1150–1164. Doctor, Ronald M., and Ada P. Kahn. “grief reaction and grief resolution,” in The Encyclopedia of Phobias, Fears, and Anxieties, Second Edition. New York: Facts On File, 2000. Kahn, Ada P. “grief,” in Stress A to Z. New York: Facts On File, 1998. Large, Elizabeth. “There May Not Be a ‘Best’ Way of Dealing with Grief.” Funeral & Estate Planning Guide. The Union Leader, April 11, 2003.
grieving process, the
Those who work with grieving people talk about bereavement being a process people must work through before they can focus on the future. They do not mean that it is necessarily an orderly progression, but rather a series of emotions to deal with. According to the World Health Organization, a helpful model is to think of four tasks to be completed by the bereaved person:
of the loss. They try to find and bring back the lost person and feel ongoing frustration and disappointment when this is not possible. 3. Disorganization and despair family members feel depressed and find it difficult to plan for the future. They are easily distracted and have difficulty concentrating and focusing. 4. Reorganization See also STAGES OF GRIEF.
Grim Reaper
Death personified as a tall, solemnlooking old man or a skeleton wearing a long black cloak and cowl over its face, and carrying a scythe with which he cuts off people’s lives as though he were harvesting grain. He is said to appear at the moment of death to escort the newly deceased to the realm of the dead. Sometimes, the Grim Reaper is pictured afoot; other times, he appears sitting upon a large black horse. Mythologists and ethnographers who study contemporary cultures debate the Grim Reaper’s origins, but he is generally believed to have sprung from ancient Greek and/or Roman mythology.
• “letting go” of the deceased and moving on.
guardianship Adult guardianship is a legal relationship between a court-appointed individual or program (the “guardian”) and an individual who is found by the court to be incapacitated (the “ward”) due to dementia, developmental disability, stroke, brain injury, chronic mental illness, or other causes. A court may grant guardianship for end-of-life decisions such as refusing or consenting to medical treatment, and making a will. The National Guardianship Organization is located at 1604 North Country Club Road, Tucson, AZ 85716; http:// www.guardianship.org.
The National Cancer Institute describes the grieving process as having four phases:
guilt
• accepting the reality of the loss • the patient possibly feeling numb • experiencing the pain of grief • adapting to the world without the deceased
1. Shock and numbness family members find it difficult to believe the death; they feel stunned and numb. 2. Yearning and searching survivors experience separation anxiety and cannot accept the reality
Occasional feelings of guilt over failure to do something, or self-accusations over small incidents, are typical and normal emotions for the bereaved—and it does not always have a realistic basis. Cunningham explains, “Most people who grieve experience some level of guilt. We put ourselves through the If onlys: If only I could have
132 guilt prevented the death; If only I hadn’t had that argument; If only I had said ‘I love you.’” Some studies have shown that when children experience the death of a close relative, such as a brother, sister, or parent, they often feel guilty. While most of us experience some guilt when we lose a loved one, young children in particular have difficulty understanding cause-and-effect relationships. They think that in some way they caused the death; maybe their angry thoughts caused the person to die. Some children may view death as a punishment: “Mommy died and left me because I was bad.” Feelings of guilt can be particularly strong in teens, Cunningham says, but she cautions that it is usually a transitory stage. “Arguments are a part of family life, especially during adolescence. Because of this fact, teenagers often experience extreme feelings of guilt or take on responsibility for the death in some way. It is important that we do not try to ‘fix’ their grief. Most teens simply need to tell you what they are feeling and, in time, the guilt, with good support, can diminish.” Evans and Farberow write that survivors of suicide are also especially prone to feelings of shame, guilt, and self-blame. “The act itself immediately raises obvious questions for them, such as ‘Why?’ and ‘What could I have done to prevent it?’” For this reason, bereavement after suicide is often pro-
longed and difficult, and the issues it raises can last a lifetime. Similarly, those who assist in a loved one’s voluntary death may suffer debilitating guilt and a prolonged and complicated bereavement. According to THE COMPASSIONATE FRIENDS, parents who lose their adult children also struggle with guilt. “Most bereaved parents experience guilt for having outlived their child. When adult children die as the result of suicide, drug use, driving drunk, AIDS, or other causes that are associated with a social stigma, many parents often experience an even more intense sense of guilt for not having realized that their child was having serious difficulties. Parents often wonder what they could have done differently to prevent the situations that may have caused their child’s death.” Some feelings of guilt go beyond normal grief, such as persistent and intrusive feelings of guilt (or thoughts that one should have died along with the deceased loved one) are more characteristic of depression than normal bereavement. Cunningham, Linda. “Grief and the Adolescent,” TAG: Teen Age Grief, Inc. Available online. URL: http://www. thevine.net/~tag/grief.html Downloaded March 3, 2003. Evans, Glen, Norman L. Farberow, and Kennedy Associates. “survivor guilt,” in The Encyclopedia of Suicide, Second Edition. New York: Facts On File, 2003.
H Hades
hallucination A false or distorted perception generated in the mind, such as seeing people when no one is there (visual hallucination) or hearing voices when no one is around (auditory hallucination). Research shows that especially for people recently bereaved, it is not an uncommon experience to hear the voice of or have a vision of the deceased person. Although common in the early stages of grieving, such perceptions usually disappear after a short time. In a Swedish study of 50 people in their seventies who had recently lost spouses, post-bereavement hallucinations or illusions were very frequent and considered helpful. Half of the subjects felt the presence of the deceased (illusions); about one-third reported seeing, hearing, and talking to the deceased (hallucinations). Hallucinations also are common among the dying themselves, and may be considered a symptom of the “confusion” stage of dying. These deathbed visions have been documented as including deceased relatives, angelic beings, and the perception of symbolic borders or limits, including water and heavenly gates; and have been interpreted as being comforting to the dying.
Hades was the Greek god of the underworld; his equivalent in Roman mythology was Pluto. His domain—the kingdom of the dead— became known also as Hades, which was separated from the land of the living by the river Styx. The newly dead were ferried across the Styx by the ferryman Charon, whom they paid with the coins that had been placed in their mouths when they were buried. Hades was guarded by the fearsome dog Cerberus, so Greeks also had honey cakes buried with them as a bribe to get by Cerberus.
Halloween
In Babylonian times, the day we now call Halloween marked the time when the dead came back to life, according to Colgate professor Anthony Aveni, an archaeoastronomist who specializes in the study of ancient rites, rituals, and customs. According to Aveni’s research, over the centuries Halloween has held a significant place in many cultures and lands: • Alexandrian Egyptians laid out food for the dead and fastened oil lamps to the eaves of their houses to commemorate them. • Ancient Romans threw black beans at “spirits” in hopes that they would accept the beans instead of carrying off living family members.
Grimby, A. “Bereavement among Elderly People: Grief Reactions, Post-bereavement Hallucinations and Quality of Life.” Acta Psychiatrica Scandinavica 87, no. 1 (January 1993): 72–80. Houran, J., and R. Lange. “Hallucinations That Comfort: Contextual Mediation of Deathbed Visions.” Perceptual and Motor Skills 84, no. 3, part 2 (June 1997): 1491–1504.
• The ancient Celts considered it a time when the gates between the living and the dead opened. Bonfires burned to attract dead relatives and to scare those who might do harm. See also ALL HALLOWS’ DAY/ALL HALLOWS’ EVE.
Halo Nurses Hallowmas
A program founded in 1994 by Eileen Machan, a former oncology nurse at Akron
See ALL SAINTS’ DAY.
133
134 hanging General Medical Center in Ohio. She felt that she was unable to devote sufficient time listening to her patients’ concerns because she was busy with other nursing duties. To help with this need, she decided to call on a pool of retired nurses, soon to be known as “Halo Nurses.” Halo Nurses help patients and families alleviate anxiety associated with hospitalization, plus deal with end of life issues. These nurses sit, listen and encourage patients, support the family (or caregiver), and assist them in gaining the skills they need to help their loved one and themselves through their crisis, and generally provide companionship and emotional support to patients. In most hospitals, Halo Nurses are retired nurses who have been specifically trained in stress management using therapeutic listening, relaxation techniques, and guided imagery.
A method of execution where a 3 ⁄4- to 1inch rope (called a hangman’s noose) is put around a person’s neck and the person falls through a trap door built into a wooden frame or gallows. Until the 1890s, hanging was the primary method of execution used in the United States. Hanging is still allowed in Delaware and Washington, although both have lethal injection as an alternative method of execution. The last public hanging in America occurred on August 14, 1936, in Owensboro, Kentucky. At one time, attending a hanging was a way of standing with the community against the criminal, a means of showing the seriousness with which one took crime and its consequences. But public revulsion of the spectacle had started brewing. Then, when reporters from around the country attended and later wrote about what they called the “carnival in Owensboro,” an embarrassed state of Kentucky abolished public executions. Other states soon followed that policy. Hanging is also a common method of suicide. According to data released by the National Center for Health Statistics, a division of the Centers for Disease Control and Prevention, in the year 2000 hanging, strangulation, and suffocation was the secondmost common method of suicide, with 19.4 percent of all suicides that year in that category. Among men, it was the secondmost common method (20.0 percent) after firearms (61.2 percent). Among
hanging
women, it was the third most common method (16.7 percent) after firearms (37.2 percent) and poisoning (30.6 percent). See also AUTOEROTIC DEATHS; SUICIDE.
hara-kiri A ritualistic suicide involving selfdisembowelment on a sword; once practiced in Japan but declared illegal in 1868. The abdomen was cut horizontally, a vertical thrust was made, and a friend provided decapitation. The custom used to be reserved for the nobility and military warriors. It was generally commanded by the government to certain disgraced officials as a form of sanctioned punishment whereby the individual should die by his own hand rather than be beheaded.
hastening death
Term used in discussions of terminally ill patients who experience much pain that cannot be relieved and who may request from medical staff assistance in hastening their deaths. Quill et al. contend that “Terminal sedation and the voluntary cessation of eating and drinking may be legally acceptable alternatives to PHYSICIAN-ASSISTED SUICIDE for the few patients whose suffering cannot be made tolerable with standard palliative interventions. Physicians should not violate their fundamental values when faced with such patients but should make patients aware of the full range of available alternatives to prolonged, intolerable distress.” McNeil quotes Dr. Quill as explaining that the starving body releases endorphins as it breaks down its own tissue for energy “and it’s not unpleasant.” In some of these situations, doctors may administer pain medication with the intention of relieving pain and with the possible unintended secondary effect of hastening death. Such measures allow a more passive role in hastening death than the more active ASSISTED SUICIDE. In a survey of Tennessee physicians, regardless of their overall positions on EUTHANASIA and physician-assisted suicide, 44 percent agreed and 34 percent disagreed that hastening death should be restricted to adult patients. In a 2003 Oregon study, 102 of the 429 hospice care nurses who were mailed questionnaires replied that they had cared for at least one patient who chose to hasten death by declining food or fluids. Some
Hawaiian Native burial customs 135 physicians oppose giving patients the option of starvation because they fear that many doctors are incompetent at recognizing clinical depression, as opposed to gloom, in the dying. See also TERMINAL SEDATION. Essinger, Douglas. “Attitudes of Tennessee Physicians toward Euthanasia and Assisted Death.” Southern Medical Journal 96, no. 5 (2003): 427–435. McNeil, Donald G., Jr. “Reports on Fasting Add to Euthanasia Debate.” International Herald Tribune, August 1, 2003. Quill, Timothy E., et al. “The Debate over PhysicianAssisted Suicide: Empirical Data and Convergent Views.” Annals of Internal Medicine 128 (April 1, 1998): 552–558.
hauntings
Repeated materialization of unexplained sensory phenomena, such as sounds or smells or HALLUCINATIONS, attached to a particular place. Most such incidences involve noises, such as footfalls or rustlings or animal sounds, or odors such as that of flowers or perfume or burned wood, or tactile sensations, such as a cooling breeze or pricking of the skin. Hauntings may be periodic or continual, during a short time period or spread out over centuries. No scientific explanations exist for why or how hauntings occur, but the popular belief is that most hauntings involve ghosts of the dead. Stories of long-time hauntings proliferate in Great Britain and in older American cities such as Savannah, Georgia.
Hawaiian Native burial customs
Death has always been an important event for Native Hawaiians, with burial of the remains—often in secret caves—treated respectfully, as the Hawaiians have traditionally revered the bones of the dead, to them a symbol of immortality. Bones were the last important place in which the soul existed. Hiding the bones was very important, especially for royals and chieftains, in an attempt to keep their spirit from being stolen. When the person died at home, someone had to guard the body until the proper person came to perform a ritual cleansing. Fullard-Leo explains that bereaved relatives and friends would mourn by weeping profusely, chant-
ing eulogies, and sometimes “hacking” away their hair on the sides of their head, knocking out a tooth, or scarring their skin with burning twigs—all with the intention of showing that even though the pain was great, their grief was greater. She writes, “Corpses were treated with respectful ceremony in preparation for interment, as it was believed the bones, the iwi, of the dead held great mana, divine power, that contributed to the natural order of life, and could benefit whomever possessed his ancestor’s bones.” In 1825 William Ellis, a mate on Captain James Cook’s voyage among the islands, described the importance of bones in his journal: “These bones were either bound up with cinet, wrapped in cloth, and deposited in temples for adoration, or distributed among the immediate relatives, who, during their lives, always carried them wherever they went.” How and where the body or, sometimes, only the bones were buried varied from island to island and among social rankings. Kings were likely to have arm or leg bones preserved and hidden in caves—always under secrecy of nightfall. Commoners might be buried in sand dunes, in the ground near their homes, or in burial caves. Corpses might be buried in a supine position; they might be bent into a fetal-type position, as described by the historian Malo: “A rope was attached to the joints of the legs then being passed about the neck, was drawn taut until the knees touched the chest. The body was then done up in a rounded shape and at once closely wrapped in tapa and made ready for burial.” Although burial caves have been found on every Hawaiian island, many had already been looted— sometimes by major museums and treasure-hunters from around the world—before the proper authorities could preserve and account for their contents. But since passage of the NATIVE AMERICAN GRAVE PROTECTION AND REPATRIATION ACT, Native Hawaiians have been able to arrange the return of many ancestral remains and re-inter their bones “at night and under strict secrecy.” Fullard-Leo, Betty. “Sacred Burial Practices.” Coffee Times. Available online. URL: http://www.coffeetimes.com/ feb98.htm. Posted February 1998.
136 headstone headstone A stone that is used to mark a grave, usually made of bronze, marble, granite, or limestone; so named from its customary placing at the head of the buried corpse. In some eras, both a headstone and footstone were common. See also GRAVE MARKER; GRAVESTONE; SYMBOLISM ON GRAVESTONES.
health care proxy A medical power of attorney by which the patient appoints a trusted person to make decisions about his or her medical care if he or she cannot make those decisions. It may also be called a DURABLE POWER OF ATTORNEY. In many cases, the spouse or other next-of-kin would automatically be able to make these decisions, but in situations where a person prefers a non-family member to do this, a health care proxy is the answer. Some experts who have dealt with end-of-life issues recommend the designation of a health care proxy who clearly knows and respects one’s wishes, rather than relying on a LIVING WILL. However, others caution that even health care proxies have potential for problems. Talan writes, “Increasingly, end-of-life cases are being decided in courtrooms . . . nationwide there have been about 10,000 trial court decisions, most of them health care proxy disputes. About 60 to 70 cases have resulted in appellate court decisions since the late ’70s.” Watstein cautions that a health care proxy also “gives the person named visitation rights in the hospital and access to the patient’s medical records. People are generally advised to sign an ADVANCE DIRECTIVE in conjunction with a health care proxy as the best guarantee of realizing their wishes for treatment under particular circumstances.” Talan, Jamie. “When Death Needs a Plan.” Newsday (New York, N.Y.), March 11, 2003. Watstein, Sarah Barbara, and Stephen Stratton. “Health Care Proxy,” in The Encyclopedia of HIV and AIDS, Second Edition. New York: Facts On File, 2003.
hearse
A vehicle for carrying a coffin to a church or a cemetery; also called a funeral coach or funeral service vehicle. Today’s hearse is usually a black limousine looking much like any other limousine. The
earliest American funerals utilized family and friends acting as pallbearers to carry the coffin to the graveyard. Then simple wagons were used, and later more ornately carved wooden boxes were used and pulled by horses. Traditionally, black hearses have been used for adults and white for children. When motor vehicles became popular, hearses naturally became motorized, although in the beginning many people would not allow their deceased loved ones to be carried in the “motorcars,” so funeral homes had to maintain both horse-drawn and motorized hearses for a period of time.
heaven In many religions, heaven is seen as the home of God, angels, and the souls of those who have gained salvation or of the just. Also called paradise, Nirvana, the promised land, Eden, and Shangri-la. Most see heaven as a place in which the soul will live with God “bathed in perfect love and peace.” It has also been described as “the place where nothing ever goes wrong.” Although Jews, Christians, and Muslims may envision the details differently, they all agree that it is the home of one God, a perfect place where the those who die here on Earth go to live forever. According to a Newsweek poll, 76 percent of Americans believe in heaven, and, of those, 71 percent think it is an “actual place,” but beyond that different views appear. “Nineteen percent think heaven looks like a garden, 13 percent say it looks like a city—and 17 percent don’t know.” Most theologians will say that heaven is symbolic, but Miller finds that most people continue to think of heaven in terms of what they want. “That’s why dog-lovers think they will be reunited with their pets in heaven, and the poor think of heaven as a place where they’ll never have to work.” See also AFTERLIFE. Miller, Lisa. “Why We Need Heaven.” Newsweek. 12 August 2002: 43–51.
heirlooms Material possessions that have been in a family for multiple generations. Attorneys who deal with WILLs and other end-of-life issues note that competition for family heirlooms and memen-
Hinduism and death 137 tos can strain good will—sometimes more than battles over money.
hell
The underworld; for some religions, the opposite AFTERLIFE destination from HEAVEN. Christians believe it to be the abode of Satan and the forces of evil, where sinners (or those who have not accepted Christ as their savior) suffer eternal punishment— the home of the damned. In the early days of America, preachers exhorted their listeners to follow the path of righteousness or be forever damned in hell; it was the primary message of the day. But historians say that the threat of hell as a final resting place is beginning to fade among today’s preachers; instead, the emphasis is on the positive, on how high a place one will reach in heaven. When people do think of hell, they likely envision either fire or darkness. See also HADES. Woodward, Kenneth. “Why We Need Hell, Too.” Newsweek, 12 August 2002: 52.
Hemlock Society In July 2003 this group changed its name to End-of-Life Choices. A nonprofit association of people who support the right of dying patients to choose suicide if they wish, the Hemlock Society was founded in 1980 by Derek Humphry, whose book Final Exit stirred up controversy by evaluating various methods of suicide. Today the society has more than 30,000 members in about 70 chapters and community groups around the country. Their goal is to legalize PHYSICIANASSISTED SUICIDE. The original name was taken from a poisonous plant. Hemlock is believed to be the poison drunk by Socrates in 329 B.C.E. Information: End-of-Life Choices P.O. Box 101810 Denver, CO 80250–1810 (800) 247–7421 (toll-free)
[email protected] http://www.hemlock.org or http://www.endoflifechoices.org
hereafter
Life after death. See also AFTERLIFE.
heroic measures A term used by patients and providers to characterize a number of high technology medical interventions that may be applied, usually regardless of a patient’s condition. Often that may involve significant discomfort and expense to the patient. Depending on the condition of the patient and the circumstances, these measures may include cardiopulmonary resuscitation (CPR), respirators, kidney dialysis, organ transplantation, extensive surgical procedures, electric shock, chemotherapy, and intravenous nourishment or feeding tubes. In many instances, these measures are not “heroic,” but do heal and restore the patient to health. But in some situations, technology may be applied thoughtlessly, lengthening the dying process while adding suffering and expense for the patient and family.
high brain death The loss of brain functions that define a person—decision making, passions, and reason. See also BRAIN DEATH.
Hinduism and death With nearly 820 million Hindus, mostly in India and Nepal, Hinduism is the world’s third-largest religion, although it is considered more a “life code” than a structured religion. A Hindu looks at death as “the great journey.” The Hindu belief in reincarnation—that each of us is born again and again in a life cycle—shapes both their philosophy of death and their funeral ceremonies. Because they expect to be born again, Hindus do not look upon death as despondently as others; instead, it is a most exalted human experience, with the quality of death as important as one’s quality of life, so it is important to die peacefully when one’s time comes. Traditionally, that has meant that Hindus most often die at home among the comfort of loved ones. Even when a Hindu must die in a hospital, the family keeps the traditional vigil until the soul departs while reading scripture, praying, and singing hymns—even if against hospital policy. Funeral Rituals and Mourning Once death occurs, an elaborate set of rituals is conducted, mostly by relatives, to ensure a proper
138 Hispanic Americans/Latinos and death rebirth. These funeral rituals represent celebration more than the remembrance of other religions and cultures. The body is immediately laid on the floor, with a small flame lit near it. Hindus believe that at death, the soul leaves the body but continues to inhabit the home due to its attachment to family and friends, and now needs a resting place—thus the flame becomes that resting place. Rituals continue for 12 days and include preparation of the body by the eldest son or some other designated person. In India, the bathed and dressed body is carried on a stretcher to the FUNERAL PYRE (ideally within 24 hours of death), where the eldest son lights the fire. In the United States, the body is usually carried by ambulance or hearse to a crematorium, where the eldest son will push the button on the crematory to symbolize the lighting of the funeral pyre. Only the men attend cremations. Infants are not cremated, but are buried. Following cremation, the CREMAINS are collected and then carried or sent to India for depositing in the holy Ganges River. In the United States and Canada, they may be placed in an auspicious river or the ocean, along with garlands. On the 10th day following death, after a night of prayer, the flame that is holding the soul is carried out to sea, as a sign to the soul to break all attachments with its former life and begin its journey forward to a new one. On the 31st day following death, a memorial service will be held, which includes the purification of the home by a priest (but this may also be done by some on the 11th day following cremation). Gaijatra is an annual Nepalese Hindu ritual in which the children and grandchildren of people who have died over the past year participate, in the hope of aiding the souls of the dead to find their way to heaven. The festival, called the “parade of cows,” lasts for a week during August/September. Every family who has lost one relative during the past year must participate in a procession through the streets of Kathmandu leading a cow. If a cow is unavailable, then a young boy dressed as a cow is considered a fair substitute. In Hinduism, a cow is regarded as the most venerated among all the domestic animals. Hindus believe that the deceased during their journey to heaven cross a legendary river by holding onto the tail of a cow. Family members of those who died
during the past year offer fruit, bread, beaten rice, curd, and money to those participating in the procession, including the cows. Hindus believe that autopsies are disturbing to the still aware soul, and thus should be avoided unless required by law. They also do not allow embalming unless it is required by law. See also BUDDHISM AND DEATH. Adhopia, Ajit. “Hindus Prepare for Death from Childhood.” The Toronto Star, September 2, 2000. Crawford, S. Cromwell. Dilemmas of Life and Death: Hindu Ethics in North American Context. Albany: State University of New York Press, 1995.
Hispanic Americans/Latinos and death Even though Hispanic Americans are generally lumped together for medical and demographic studies, their roots spread out to several different countries and cultures, and encompass all races. The major countries of origin, according to a Strategy Research Corp. study in 2000, are Mexico (58.6 percent), Puerto Rico (7.3 percent), Cuba (6.6 percent), El Salvador (5 percent), Dominican Republic (4.2 percent), Colombia (3 percent), Guatemala (2.3 percent), and Argentina (1.5 percent). From these origins have come specific beliefs and traditions concerning death, dying, and end-of-life issues. Religious beliefs or practices about the end of life are common among racial and ethnic groups, and for many Hispanics, according to The Hastings Report, “Death is determined by God’s will, and suffering is an integral part of the process. Family members and friends offer prayers at the bedside, at a home altar, and in church. Candles may be kept burning twenty-four hours a day as a means of continuous worship. Clergy and lay visitors are common in the hospital and at home.” In a study published in the Journal of the American Medical Association, researchers reported that elderly Mexican Americans were less likely than elderly African Americans and European Americans to believe that a patient should be told of a terminal prognosis and less likely to believe that the patient should make decisions about the use of life-support technology. Mexican Americans were said to be more likely than the other two groups to believe
Hispanic Americans/Latinos and death 139 that the family and not the patient should make end of life decisions. Cultural Beliefs and Traditions End-of-life experts have stated that in some Hispanic groups, there’s a tendency to equate open discussion of death with loss of hope. Families may want to shield their loved one from serious diagnoses. A California study found that first-generation immigrants regarded talking about advance planning as taboo because this would be a bad omen, but that second- and third-generation residents were much more open about the topic. In a 1995 study of elderly Los Angeles residents, 65 percent of Mexican Americans said that they would not want to be told if they had a fatal illness. Perhaps nowhere is the ignoring of impending death more evident than in the hospice arena. In 2000 only 2 percent of all hospice patients in the United States were Hispanic. But much of this hospice non-use has been said to arise from Hispanics thinking that hospice is an institution that violates the tradition of caring for dying relatives at home, and Latino/Hispanic elders often believe that if the family cannot provide care, they are not fulfilling their responsibility. In 2002 a Boca Raton hospice received grants of more than $1.1 million to help break down misconceptions among South Florida Hispanics about end-of-life hospice care. Various studies have shown that the deep sense of being part of a family network strongly influences end-of-life decisions among Hispanics. Among these findings: The valuing of family considerations over individual or community needs is nearly universal. Relatives of Hispanics also participate in the physical and spiritual care of the dying, and many travel considerable distances to do this. Hispanic family members are nearly always willing to provide personal care, but they may be unwilling to provide technical care unless extensive teaching is provided. In some Hispanic families, pregnant women do not provide personal care or attend the funeral. Children sometimes are shielded from involvement in care of the dying, but they also may have great responsibility. According to one hospice chaplain, many Latinos do not know that hospice care provides whatever is needed so that people can die at home among loved ones, keeping alive
ancient values about the importance of family involvement at the end of life. According to the Hastings Center Report, “Many Mexican Americans and other Hispanics also adhere to a family-centered model of medical decisionmaking. One survey found that 45 percent of elderly Mexican Americans believed that the family, not the patient, should be the primary decisionmaker in terminal care. Mexican-American men are often expected to provide for and be in charge of their families.” In a May 1997 report, The Quest to Die with Dignity, issued by American Health Decisions of Appleton, Wisconsin, responses for the Hispanic group showed they are • split in their trust of physicians; • more comfortable with discussions about death; • more likely to agree that physicians should initiate end-of-life discussions; • most likely to support mandatory living wills; • always agree that age should never be a factor in making end-of-life decisions; • more likely to agree that quality of life is important in making end-of-life decisions; and • likely to support physician-assisted suicide. Organ donation is an end-of-life issue often misunderstood by Hispanic Americans, according to Frates and Garcia Bohrer, who note that the low rate of organ donation among Hispanics is of increasing concern to the transplant community at a time when the Hispanic population is growing rapidly, especially in southern California. When OneLegacy, the nation’s largest organ procurement organization, commissioned a series of in-depth individual interviews with Spanish language-dominant Hispanics to identify barriers and motivators to organ and tissue donation, they found “a common reticence to speak of or make plans for either their own or a family member’s death and lacked knowledge of procedures surrounding donation (whether consenting or being a donor themselves).” Some respondents did not understand that organ donation takes place after death, expressing fears that declaring themselves donors would put them at risk of being allowed to die so that their organs could be
140 holidays and other “marker dates” recovered. Other attitudinal barriers included the wish to die with all body parts intact and reluctance to have another person’s organ in their bodies. Leading Causes of Death According to the National Women’s Health Information Center, the four leading causes of death among Hispanic/Latina women are the same as for African-American women: heart disease, cancer, stroke, and diabetes. Among Hispanic/Latina women, mortality rates from several diseases— including stroke; chronic obstructive pulmonary disease; and cancers of the respiratory system and breasts—are lower than those of Caucasian women. Mortality rates from HIV/AIDS and homicide, however, are significantly higher for Hispanic/Latina women than Caucasian women. In the United States, Hispanic youth are victims of homicide at less than half the rate of AfricanAmerican youth (23.7 per 100,000 compared to 61.2 per 100,000), but nearly three times the rate of non-Hispanic whites (8.2 per 100,000). Frates, J. and G. Garcia Bohrer. “Hispanic Perceptions of Organ Donation.” Progress in Transplantation 12, no. 3 (September 2002): 169–175. LaMendola, Bob. “Hospice Targets Hispanics.” Sun-Sentinel, September 4, 2002. Hastings Center. “Race, Ethnicity, and Culture.” The Hastings Center Report 33, no. 2 (March 2003): 539+.
holidays and other “marker dates”
See ANNIVER-
SARY REACTION; CELEBRATION DAYS.
holidays of the dead
Rather than looking upon death solely as the final page of life and therefore something to keep one’s distance from, as many Americans view it today, some cultures see death as the beginning of a new chapter in life, and thus a life event to be embraced and celebrated. For example, many Mexicans and Mexican Americans observe Día de los Muertos, the DAY OF THE DEAD, which celebrates life and the people who have passed away. The Korean holiday Chusok also pays tribute to the dead. Also known as Korean Thanksgiving, Chusok falls in August or September and is
a time to remember ancestors. Koreans eat food with family and friends, plus honor the dead by going to graveyards and taking food for the deceased.
home burial With the typical cost of a funeral climbing to between $6,000 and $10,000, many American families are retreating to a simpler time when families and the community handled their burial needs without the assistance of professional funeral directors. For some, do-it-yourself funerals or burials are chosen more for the personal aspect. Carlson explains that families who have handled death arrangements privately share a feeling of spiritual and emotional fulfillment. “For many, it has facilitated the grieving process by keeping the family involved. Some have felt they were better able to ‘let go’ when the time came.” Home burials do require an examination of local zoning ordinances, but according to Carlson, for those with land in rural or semi-rural areas, home burials usually are possible. Where land is not available, or where zoning will not allow home burials, people are compromising by handling the funeral services themselves and some or all of the preparation, then opting for GREEN BURIALS in land set aside for that purpose. In her book, Carlson has a stateby-state overview of requirements for death certificates, transportation and disposition permits, burial, and cremation, as well as medical schools for body donation, location of crematories, and other information of help. Only six states place limits on families who want to take charge of the process: Connecticut, Indiana, Louisiana, Michigan, Nebraska, and New York, according to an article in Mother Earth News. Carlson, Lisa. Caring for the Dead. Hinesburg, Vt.: Upper Access Books, 1998. Davis, Lisa. “A Tomb of One’s Own.” SF Weekly, December 11, 2002. Kerkstra, Patrick. “Bringing the Dearly Departed Home: A Reborn Backyard Trend.” Philadelphia Inquirer, October 26, 2002. Morgan, Ernest. Dealing Creatively with Death: A Manual of Death Education and Simple Burial, 14th Edition. Hinesburg, Vt.: Upper Access Books, 2001.
homicide 141 Smith, Nancy. “Greener Ways to the Great Beyond.” Mother Earth News. Available online. URL: http://www. motherearthnews.com/index.php?page=rec&1d=2052. Posted April 2003.
home health care
The need for home health care has grown along with the improvement of medical science and technology. Many treatments that could once be done only in a hospital can now be done at home. Also, home health care is usually less expensive and can often be as effective as care in a hospital or skilled nursing facility. And just as important, most patients and their families prefer to stay at home rather than be in the hospital or a nursing home. Watstein cautions that home health care “can also be fragmented, erratic, poorly administered and supervised, and literally out of control. Successful home care must carry into the home setting the team approach that characterizes hospital care, in which case the family and other caregivers must be part of the team in a way that they are not in an institution.” Because most home health care is temporary and part-time, caregivers need to learn how to identify and care for possible problems, like confusion or shortness of breath. When someone receives home health care, the home health staff teaches caregivers about medication, wound care, therapy, and managing stress. Medicare Parts A and B cover part-time skilled nursing care, physical therapy, home health aide services, medical social services, durable medical equipment (such as wheelchairs, hospital beds, oxygen, and walkers) and medical supplies, and other services, as long as certain conditions are met. These services are given by a variety of skilled health care professionals at home. The home health staff provides and helps coordinate the care and/or therapy order by the doctor. Along with the doctor, home health staff create a written care plan. The home health staff keeps the doctor up-to-date on how the patient is doing and updates the care plan as needed. Examples of skilled home health services include: wound care for pressure sores or a surgical wound; respiratory care, like oxygen or a nebulizer; patient and caregiver education; intravenous or nutrition therapy; injections.
Examples of personal care and support services include: help with basic daily activities like getting in and out of bed, dressing, bathing, eating, and using the bathroom; help with light housekeeping, laundry, shopping, and cooking. It is important to note that “home care” is different from HOSPICE care, which also usually takes place in the home. Hospice care focuses on the comprehensive treatment of dying patients, while home care treats the physical symptoms of people, many of whom will recover from their illness. Those patients receiving home health care for illnesses that later become terminal may then qualify for hospice care. Watstein, Sarah Barbara, and Stephen Stratton. “home health care,” in The Encyclopedia of HIV and AIDS. New York: Facts On File, 2003.
homicide Unlawful premeditated killing of a human being. On an average day in the United States, 53 persons die from homicide. Despite a decline in homicide numbers and rates, the homicide rates for teenagers and young adults (ages 15 to 24) remain high and are the second leading cause of death of these age groups, according to the National Center for Health Statistics (NCHS). The Indiana Department of Public Health has stated that “public health professionals must determine what and why certain social and environmental factors place people at risk for violent crimes endangering health. These factors include poverty, discrimination, lack of increased education, and lack of employment opportunities.” In relation to victims, studies show that elderly persons, females, and children continue to be the main targets of both physical and sexual assaults, which are frequently carried out by individuals they know. According to the U.S. Department of Justice, from 1976 to 1999, 76.3 percent of homicide victims were males, and 23.7 percent were women. During that same period, males committed 87.7 percent of homicides and women committed 12.3 percent of homicides. Males are three times more likely to be killed and eight times more likely to kill than females are. Most homicide offenders are between the ages of 14 and 24. In 1999, there were 16,889 homicides in the United States.
142 horsemen of the Apocalypse In the United States, African-American and Hispanic youth are victims of homicide at much higher rates than whites. In 1999, African Americans aged 20 to 24 years had a homicide rate (61.2 per 100,000) that was more than twice the rate of their Hispanic counterparts (23.7 per 100,000) and nearly eight times the rate of their white counterparts (8.2 per 100,000). In the Native American Indian/ Alaska Native community, it is estimated that 75 percent of female Native American Indian and Alaska Native homicide victims are killed by someone they know. Intimate partner violence is on the rise within this population.
horsemen of the Apocalypse
Allegorical figures in the Bible’s New Testament Book of Revelation. The rider on the white horse has many interpretations—one is that he represents Christ, another, war, and yet another, conquest; the rider on the red horse is war (or slaughter); on the black horse is famine; and on the pale horse, death.
hospice
A concept of care originating in England with the purpose of easing the dying process for terminally ill patients. In Europe, especially in Great Britain, the term hospice is also given to the residential facility itself, where such care is usually provided. Typically, Ammer writes, the European hospice is “in a pastoral setting where the terminally ill may live out their days in peaceful surroundings. Such hospices are based on the medieval ‘hospitality houses’ from which the term is derived, shelters maintained by religious orders that took in strangers, travelers and the indigent sick.” In the United States, while the care itself is based on the same model, the location of that care is diametrically opposite. In-patient care, whether provided by a licensed hospital, licensed skilled nursing facility, or the hospice’s own in-patient facility, is kept to a minimum. A major goal of American hospice care is to enable the patient to die at home in the comfort of his or her own surroundings without being separated from family and friends, which is accomplished by providing regular home visits by nurses and physicians. When a patient is unable to be cared for in his or her home, some hospices have facilities in which they can house the patient. Many
hospices now contract with nursing homes and hospitals to provide hospice-type care for dying patients in the institution’s facilities. Basically, hospice provides health care and support services to individuals and their families when they are facing life threatening illnesses. Hospice workers consult with patients and their medical teams on ways to experience the end of life with dignity. Hospice care dispenses with curative care and maximizes COMFORT CARE (reducing or suspending pain and other troubling symptoms, rather than treating with the intent of curing) for the whole person, including medical, emotional, social, psychological, and spiritual measures to maximize not only the physical comfort of the dying patient, but also his or her dignity and emotional well-being. It is for all age groups, including children, adults, and the elderly during their final stages of life. Officially, hospice care is characterized by the following features: 1) the patient’s disease is terminal (approximately six months or less until death) and no aggressive efforts to prolong life are used; 2) the patient and family are treated as an integrated unit; 3) services are provided by an interdisciplinary team with in-patient and home care components coordinated; 4) hospice care services are available 24 hours per day, seven days per week; and 5) pain control and psychological well-being are prominent goals. Hospice promises compassionate care and improvement (over existing medical practices) in quality of life for the dying person and the family. Much of the enthusiasm for hospice care came from the assumption that it would be less costly while still being effective. Thus, in 1982, Congress passed a bill to cover hospice under Medicare. To qualify for Medicare coverage, hospices are required to include nursing care, medical social services, physician services, counseling, short-term in-patient care, medical appliances and supplies, homemaker/home health aide services, and rehabilitation therapy. History of Hospice Although the hospice concept dates to ancient times, neither the current British nor American hospice movements began until the 1960s. The name hospice was first applied to the care of dying patients by Mme. Jeanne Garnier who founded the Dames de Calaire in Lyon, France, in 1842. The name was next introduced by the Irish Sisters of Charity when they
hospice 143 opened Our Lady’s Hospice in Dublin in 1879 and St. Joseph’s Hospice in the Hackney borough of Greater London (1905). At that time, a hospice was a religious center dedicated to caring for seriously ill and dying patients. The first use of hospice as specialized comfort care for dying patients was in 1967 by physician Dame Cicely Saunders, who combined the medieval notion of service to the dying with the modern science of pain management, symptom control, and grief counseling, and founded the first modern hospice, St. Christopher’s Hospice, in a residential suburb of London. Saunders then introduced the idea of specialized care for the dying to the United States during a 1963 visit to Yale University. Her lecture, given to medical students, nurses, social workers, and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care. In 1965, Florence Wald, then dean of the Yale School of Nursing, invited Saunders to become a visiting faculty member of the school for the spring term. And in 1968, Wald took a sabbatical from Yale to work at St. Christopher’s and learn all she could about hospice. The first hospice in the United States, the Connecticut Hospice, began providing services in March 1974. It was funded by the National Cancer Institute for its first three years.
• Two to 5 percent of hospice patients improve and go off hospice care.
Statistics and Demographics • In 2002 more than 885,000 Americans living with a life-limiting illness were served by the nation’s hospice providers, according to data collected by the National Hospice and Palliative Care Organization from its provider members. This represents an increase of almost 15 percent over the estimated 775,000 patients served in 2001. The median, or average, length of stay in 2002 also rose to 26 days, up from 20.5 days in 2001; the mean rose from 48 to 51 days.
Paying for Hospice Care Insurance coverage for hospice care is available through Medicare, Medicaid, and most private insurance plans. The National Hospice and Palliative Care Organization (NHPCO) reports that in 2000 at the time of admission, approximately 79 percent of hospice patients claimed Medicare as their payment source, 13 percent private insurance, 5 percent Medicaid, 3 percent alternative sources, and 1 percent self-pay.
• Although more beneficiaries are choosing hospice care, many are doing so closer to the time of death, according to the General Accounting Office. Their numbers showed that the average period of hospice use declined to 59 days in 1998 from 74 in 1992. Half of hospice users receive care for 19 or fewer days and care for one week or less is common.
1. Medicare Medicare is the largest payor for hospice services. Medicare regulations require that most of the patient’s care be provided in the home setting, with short stays in an in-patient facility. Those who qualify for hospice care under Medicare can get medical and support services, including nursing care, medical social services, doctor services, counseling, medical equipment
• Hospice use is more common in some demographic groups than others. Some 20 percent of white beneficiaries who died in 1998 elected hospice care, compared to 15 percent of black beneficiaries who died that year. Hospice use has grown at a fairly consistent rate across most demographic groups, so users today are similar to those in 1992. The distribution of enrollees by race has remained steady—89 percent are white. The proportion who are women has climbed to 54 percent from 50 percent. But use of services by people age 80-plus grew faster than that of younger groups. Nearly half (47 percent) of Medicare hospice enrollees were age 80-plus in 1998, up from 35 percent in 1992. Hospice Service Providers and Associations Between 1984 and 2002, the number of hospice programs certified by Medicare increased from 31 to 2,265. The Hospice Association of America notes that there are also an estimated 200 volunteer hospices in the United States. Less is known about the hospices that do not participate in the Medicare or Medicaid programs, as the rules and regulations for licensure vary by state. For full contact information on the major hospice associations in the United States, plus the major hospice providers, see Appendix V.
144 hospice (such as wheelchairs or walkers), medical supplies (such as bandages and catheters), drugs for symptom control and pain relief, and homemaker services. To be eligible to receive the Medicare hospice benefit, a patient must have two physicians certify that, if the patient’s terminal illness were to run its usual course, the patient would have a life expectancy of six months or less. The patient must also sign a statement choosing hospice care instead of routine Medicare-covered benefits for the terminal illness; and must receive care from a Medicareapproved hospice program. Medicare will still pay for covered benefits for any health problems that are not related to the terminal illness. Medicare for hospice care will not pay for treatment to cure a terminal illness; care from a hospice or other provider not set up by the originally approved hospice; room and board. Medicare pays the hospice for hospice care. The patient pays no more than $5 for each prescription drug and other similar products. (The hospice can charge up to $5 for each prescription for outpatient drugs or other similar products for pain relief and symptom control.) The patient also pays 5 percent of the Medicare payment amount for inpatient RESPITE CARE. For example, if Medicare pays $100 per day for inpatient respite care, the patient will pay $5 per day. A patient can stay in a Medicare-approved hospital or nursing home up to five days each time he or she gets respite care. There is no limit to the number of times one can get respite care. The amount the patient pays for respite care can change each year. A patient can receive hospice care as long as his or her doctor certifies that he or she is terminally ill and probably has less than six months to live. If the illness goes into remission, the patient would go off hospice at the end of that period of care. Then, should the patient’s disease state once again become eligible for hospice care, the patient’s doctor would recertify that he or she is terminally ill. 2. Medicaid Medicaid is designed to help public aid recipients and people whose incomes are higher than public aid eligibility limits, but who meet other criteria and cannot pay for medical services. Currently, 43 states and the District of
Columbia provide hospice coverage to their Medicaid beneficiaries, although that number does change from year to year. 3. Private Insurance Most private insurance companies include hospice care as a benefit; some also pay for general home care. Hospice is also covered by most HMOs and other managed care organizations. Military personnel and their dependents are covered for hospice under CHAMPUS (Civilian Health and Medical Program for the Uniformed Services). According to the Hospice Association of America, hospices continue to rely heavily on grants and community support to fund unreimbursed care and hospice services for patients with little or no insurance. Problems with Hospice A report released in January 2003 by the LAST ACTS organization in Washington, D.C., found that states are doing little to encourage terminally ill patients to seek hospice care, or to do so earlier in their illness to take the greatest advantage of hospice benefits. In their brief, “Hospice Care—Part II: Barriers to Hospice Care and Some Proposed Policy Solutions,” Community-State Partnerships (C-SP) discuss numerous problems and possible solutions with the current state of hospice care. Among the problems they cite: • More than 80 percent of people eligible for Medicare do not know it offers a hospice benefit. • Those who eventually receive hospice usually suffer too long from uncontrolled pain and symptoms before being referred to hospice. • The average Medicare hospice patient’s length of stay has decreased from 70 days at the Medicare Hospice Benefit’s (MHB) inception in 1983 to about 36 days in 2000, with more than half of hospice patients staying less than 25 days and more than one-quarter staying less than a week. • Since 1998, nearly one-and-a-half times as many hospices have been going out of business annually than opening their doors. • The MHB pays for hospice services for people with terminal illnesses but limits eligibility to those with
hospital care 145 prognoses of six months or less. In general, this makes hospice more accessible to patients dying of cancer, but less accessible to many who have terminal illnesses with lengthier or less predictable courses, such as AIDS, Alzheimer’s disease, and progressive, fatal organ disease. • Nursing home residents at the end of life sometimes have a difficult time accessing hospice care because of confusing and burdensome requirements surrounding hospice care delivered in long-term care facilities. Community-State Partnerships proposes policy changes to improve access and financial viability, some of which are: Rethink hospice reimbursement, such as making MHB’s per diem reflect true costs, paying a higher rate for the higher cost first and last days, adopting a policy for those whose costs of care lie outside the average, and reexamining the Medicaid hospice expense benefit. Reevaluate eligibility requirements, such as the requirement that hospice recipients forego any curative treatment, even the “long-shot” attempts to control cancer, for example. Because families want to be able to continue to take the chance that their relative may be that “one in a hundred” whom a new treatment might help live longer, they will generally not elect hospice. Educate physicians and beneficiaries, such as through Medicare funding seminars and continuing education courses to clarify hospice benefit regulations and to publicize existing policies that few physicians know about, including their ability to recertify hospice patients who survive longer than expected. Better consumer information about all existing Medicare-funded end-oflife care choices, including the MHB, could be provided to beneficiaries, 80 percent of whom are unaware of the MHB. Doctors and attorneys, who play an intimate role in end-of-life care planning, should be included. Future for Hospice In a series of articles during 2003, Hospice Management Advisor, an industry newsletter, forecast several areas where hospice is making inroads and could
further its attempts to guarantee access to all dying Americans. These include: • Skilled nursing facilities, citing “overwhelming support among consumers for the rights of terminally ill residents to remain in these facilities and for the role of hospices in helping residents achieve that goal, according to the results of recent focus group research.” • Simultaneous care, which means “offering seriously ill patients the compassionate support of hospice or palliative care while they are still pursuing ‘aggressive’ curative, disease-modifying, or even experimental treatments.” • Intensive care, noting that “any dying patients end up in the ICU after an unexpected event such as an accident or flare-up of a serious, chronic illness.” Ammer, Christine. “Hospice,” in The New A to Z of Women’s Health, Fourth Edition. New York: Facts On File, 2000. Beresford, Larry. “Hospice Trends.” Hospice Management Advisor, March, April, May 2003. Centers for Medicare & Medicaid Services. Medicare Hospice Benefits. Available online. URL: http://www.medicare. gov/publications/pubs/pdf/02154.pdf. Revised July 2002. Last Acts Campaign. “Hospice Care—Part II: Barriers to Hospice Care and Some Proposed Policy Solutions.” Available online, URL: http://www.lastacts.org/files/ publications/hospice2.pdf. Downloaded July 16, 2004.
hospital care The use of hospitals for terminal care of acutely ill older persons has been questioned on the grounds of cost and ethics. Enormous amounts of public funds, through Medicare and Medicaid, are spent annually on care for older adults hospitalized for terminal care. Even though hospitals may be the most appropriate place for acutely ill elderly, the risks of hospitalization are high in terms of cost and iatrogenic illness, such as hospital-based infections, disorientation, and bed sores. Although recent legislative and policy changes toward skilled nursing facilities, hospice, and home health care have led to reduced use of hospitalbased services, the hospital remains a major component of the health care system for the terminally ill, especially the elderly. Older persons are hospitalized
146 hospitalization insurance at a rate four times greater than the rate for younger persons. The average length of stay for persons over 65 years of age is 30 percent longer than for persons between 45 and 65 years of age. In their state-by-state report issued in January 2003, the LAST ACTS organization in Washington, D.C., found that although the number of organized palliative care programs in hospitals is increasing, such programs are not yet the norm. Nor do a sufficient number of hospitals offer pain management programs and HOSPICE services.
hospitalization insurance Insurance that pays all or part of a patient’s hospital expense. Also called health insurance, health coverage, or simply hospitalization. One national study found that, over a 17-year follow-up period, adults who lacked health insurance at the outset had a 25 percent greater chance of dying than did those who had private health insurance—health insurance being a key to having access to high-quality health care. In another study (see SUPPORT) of patients hospitalized with life-threatening medical conditions so severe that half of the patients were expected to die within six months, even with hospitalization insurance, nearly a third of the families of those patients lost all or most of their savings. Another 29 percent of the families reported losing their family’s major source of income. “Care without Coverage: Too Little, Too Late.” Institute of Medicine, Committee on the Consequences of Uninsurance, National Academy of Sciences, Washington, D.C., May 2002. Available online. URL: http://www.nap.edu/ openbook/0309083435/html. Downloaded July 16, 2004.
humor and death As incongruous as it may appear, humor plays an important role in the death arena—from several perspectives: • Humor helps the grieving. Explaining that grief leads to stressful changes within the body, Wooten writes, “Finding humor in a situation
and laughing freely with others can be a powerful antidote to stress.” • And noting how humor has helped him deal with several personal losses, Klein adds, “Humor will frequently rear its head during the strangest of times. It is nature’s way of giving us a perspective on a situation and allowing us to rise above it. Humor helps us keep our balance when life throws us a curveball.” • Humor helps the medical and police staffs who must deal with death on a nearly daily basis. Boes and Van Wormer explain, “Gallows humor, which takes its name from the genre of jokes about a condemned man about to be hanged on the gallows, proposes an illogical, incongruous response to the most hopeless of situations and offers the person a triumph of sorts. For example, when offered a last cigarette, the doomed man may say, ‘No thanks, I just quit yesterday.’ Or, while the inmate on death row is being weighed, he asks, ‘Y’all starting a Weight Watchers program around here?’ Gallows humor represents more of a broad philosophical attitude than a particular repertoire of jokes; it is a way to maintain sanity under insane circumstances.” In his essay, Sexton quotes a cardiologist as saying, “Most people, if they understood the codes we mask it in, would probably be really offended by the kind of morbid humor that goes on between medical staff. It’s not that we’re callous people, or evil, it’s just that we have to find some way of coping with these emotional events. Humor is one way that we can do that.” Klein, Allen. The Courage to Laugh: Humor, Hope, and Healing in the Face of Death and Dying. New York: Jeremy P. Tarcher, 1998. Sexton, James. “The Semantics of Death and Dying: Metaphor and Mortality.” ETC.: A Review of General Semantics 54, no. 3 (1997): 333+. Van Wormer, Katherine, and Mary Boes. “Humor in the Emergency Room: A Social Work Perspective.” Health and Social Work 22, no. 2 (May 1997): 87–93. Wooten, Patty. “Humor: An Antidote for Stress.” Holistic Nursing Practice 10, no. 2 (January 1996): 49–56.
I occur on-site for fear that the death would be equated with neglect. Often to avoid potential legal, ethical, and medical complications facilities have found it easier to send all dying patients out of the facility.” In his USA Today article, McMahon writes, “Many older inmates die in prison without any family or friends to pay for a funeral or burial. As a result, corrections officials often become funeral directors, cemetery operators and grief counselors in addition to health care providers.” In its report, the Criminal Justice and Corrections Council, Florida Corrections Commission, notes that more inmates today are dying in prison due to AIDS and the imposition of longer prison sentences. More than 2,500 inmates died of AIDS and other natural causes in 1997. Not all elderly or terminally ill inmates are suitable for release. In response to these conditions, some correctional systems have adopted a formal HOSPICE program. In 1998 the National Institute on Corrections (NIC) conducted a survey on formal hospice programs. According to the study, all 12 programs were governed by specific policies concerning admission procedures, special privileges for terminally ill inmates (relaxed visitation, who is considered “family,” special diets), housing options, and DO-NOTRESUSCITATE ORDERS. In addition, operational issues come into play, such as: the use of inmate volunteers; the appropriateness of an interdisciplinary approach that would allow team members to include administrative or security staff, chaplains, mental health staff, medical personnel, social workers, dietitians, recreation staff, pharmacists, and volunteers; the evaluation of the impact of links with outside hospice programs; and the provision of hospice services to the families of the inmates.
imminent death
Used when death is close at hand; often included in ADVANCE DIRECTIVES or LIVING WILLs to describe when certain treatment options may or may not be implemented. It is important to note that the term is open to interpretation, and not all states define imminent death equally. Some states define it as the point when death assuredly will come within a few hours or days, regardless of efforts to avoid it. Other states will include with “imminent death” any condition that may be terminal but for which death may not come for some time. Another definition that is sometimes used: Two doctors agree that regardless of the application or withdrawal of medical treatment death is likely to occur within hours or days. Because the ability to predict imminent death is not always easy, it has lead to terminology such as “the terminal phase of a terminal illness.”
incarceration of terminally ill Along with the aging of the general population has been a concurrent aging of the prison population, which, coupled with a fourfold increase in the U.S. prison population since 1980, is having a profound effect on the prison system, as the nation’s correctional institutions struggle to provide appropriate care for dying offenders. The number of elderly in America’s prisons is now 7.5 times as large as it was only one generation ago. With longer sentences and limited use of medical parole and compassionate release, the number of terminally ill inmates is expected to grow as the 85,000 federal and state inmates age 50 and over “age in place,” according to Ratcliffe. May adds, “Traditionally, there has been great discomfort and reluctance in allowing death to
147
148 infant death According to the NIC study, institutions cited the following advantages and disadvantages of their hospice programs:
allow the U.S. Department of Justice to begin collecting data from prisons, police lockups, and police departments.
Advantages:
Florida House of Representatives, Criminal Justice and Corrections Council. “An Examination of Elder Inmate Services: An Aging Crisis: National Institute of Corrections. Videoconference. Available online. URL: http://www. nicic.org/Resources/supplemental/PubDetails.aspx? recordID=219. Posted 1999. GRACE Project. “Incarceration of the Terminally Ill: Current Practices in the United States.” Volunteers of America. Available online. URL: http://www.graceprojects.org/ graceprojects/Incarceration%20of%20Terminally %20Ill%20-final%2 0_3-12-01_.pdf. Posted 2001. National Institute of Corrections. “Hospice and Palliative Care in Prisons.” Available online. URL: http://nicic.org/ pubs/1998/014785.pdf. Posted September 1998. May, J. P. “Improving the Quality of End-of-Life Health Care within a Managed Care Model.” Presentation at First National Conference on Death and Dying in Prisons and Jails, New York, N.Y., November 16, 1998. McMahon, Patrick. “Aging Inmates Present Prison Crisis.” USA Today, August 11, 2003. Ratcliff, Margaret. “Dying inside the Walls.” Innovations in End-of-Life Care 2, no. 3 (May–June 2000).
• Compassionate program in a difficult setting • Death with dignity • Improved continuity of care • Inmate volunteers say this is an enriching experience • Improved inmate morale concerning health care • Improved relationships with family members for both staff and offenders • Cuts down on trips to outside hospital • The program has been cost-effective because it has been implemented without increase in staff or funding • Decreased custodial problems • Good public relations • Team management concept has improved overall cooperation and communication Disadvantages: • Inmates not wanting to accept terminal diagnosis, distrustful of staff • Staffing requirements and expensive full-time employees (FTEs) • Need better links to community hospice program • Misperceptions by security staff of the mission and value of hospice in a prison setting • Staff turnover • Security issues sometimes override hospice management issues The GRACE Report notes that although “natural causes” continues to be the largest category of inmate deaths, data that further describe those natural causes are not currently collected nationally, and are “difficult to obtain at the state level.” When NIC conducted its 1998 survey, it found that most departments of correction do not keep complete data on the placement of terminally ill inmates. But that is due to change. When Congress passed the Deaths in Custody Care Act of 2000, it allocated funds to
infant death Infant deaths are defined as deaths of children under one year of age. The infant death rate (deaths among infants per 1,000 live births) continues to be one of the most widely used indicators of the overall health status of a community. The leading causes of death during the first 28 days of life are birth defects, premature delivery, low birth weight, and pregnancy complications. Deaths after the first 28 days are related to events experienced in infancy, including SUDDEN INFANT DEATH SYNDROME (SIDS), birth defects, injuries, and homicide. During the 20th century, U.S. infant mortality rates (IMRs) declined by 90 percent; however, many of the largest U.S. cities continue to have high IMRs compared with national rates. From 1995 to 1998, cities with the highest infant mortality rate across all races and ethnicities were Memphis (15.4 per 1,000 live births), Detroit (14.4), Washington, D.C. (14.2), Norfolk (14.0), and Birmingham (13.8). Studies of U.S. infant mortality by region document
infant death 149 persisting geographic disparities and differences across racial/ethnic groups. Racial disparity in IMRs has not been explained fully by differences in socioeconomic status. Black infants born to college-educated parents have higher IMRs than white infants born to parents of similar educational background; this difference is attributed to a higher rate of very low birth weight. Education of the mother does not confer the same level of protection against infant mortality among black women as it does among white women, suggesting that a complex interaction of social, environmental, and biologic factors that are experienced uniquely by black women might account for the disparity. Racial segregation is an important macrolevel predictor of greater black-white infant mortality differences in 38 U.S. metropolitan statistical areas, independent of differences in median income. Despite higher poverty and lower education rates, Hispanic infants have higher birth weights and their IMRs approximate those of white infants. This finding is consistent with previous studies and contradicts common assumptions about poor, underserved minority groups. Cultural practices, family support, selective migration, diet, and genetic heritage are possible contributing factors. Furthermore, U.S. Hispanics are a heterogeneous group, and IMRs are higher among Puerto Rican infants. In Philadelphia, 79 percent of Hispanic births were by Puerto Rican mothers, possibly explaining the higher IMR in that city (12.0 death rate). The findings of a Centers for Disease Control and Prevention report released in 2002 indicate that although infant mortality decreased among all races during the two decades between 1998 and 2000, the overall black-white gap for infant mortality widened. The lack of progress in closing this gap is a consequence both of the persistence of a two- to threefold risk for low birth rate and very low birth rate among black infants compared with white infants, and of smaller reductions in birth weight-specific mortality rates over time among black, very-low-birth-rate births compared with white, very-low-birth-rate births. If these trends persist, the report concludes, the national health objectives to eliminate racial disparities in lower birth weight births will not be met. In the report Healthy People 2010 Objective, the Department of Health and Human Services set an infant death rate
of 4.5 as the target national objective rate to be met by the year 2010. The report stresses that prevention strategies must focus on reducing low birth weight and very low birth weight births to eliminate racial disparities in infant mortality. “During the last decade, these disparities have decreased, not because of reductions in low birth weight births among blacks but because of increases in low birth weight births among whites. Research should be aimed at preventing preterm delivery and associated factors (e.g., infection, medical complications of pregnancy, or poor prenatal care), and the promotion of effective and culturally sensitive intervention programs. Strategies to reduce black-white disparities also should address disparate reductions in specific medical conditions that lead to infant death.” Department of Health and Human Services, 2000 Infant Mortality Facts: • African-American infant mortality rates are more than twice that of white. • American Indian/Alaska Native infant mortality rates are 45 percent higher than that of whites. • Native Hawaiian and other Pacific Islander infant mortality rates are 31 percent greater than that of whites. • Asians have a lower infant mortality rate than whites. • Substantial ethnic/racial group disparities exist. • Some American Indian communities have infant mortality rates that approach twice the national average. • There are subgroups in the Hispanic community that have infant mortality rates higher than their overall group rate would indicate. • The greatest racial and ethnic disparities are seen in the following causes of death in infants: disorders relating to preterm birth and unspecified low birth weight; respiratory distress syndrome; infections specific to the prenatal period; maternal complications of pregnancy; and sudden infant death syndrome. • The rate of SIDS among African Americans, 1.6 deaths per 1,000 live births, is twice that of whites. • Asians have the highest proportion of infant deaths from birth defects.
150 informed consent informed consent
Consent given for a course of treatment, surgical procedure, or diagnostic test after being informed fully about its possible benefits and risks. Consent is a legal requirement, and a patient (or legal proxy) must be given enough information about the procedure, alternatives, and the competence of the medical team so that he or she can make an informed decision. In addition, the patient must also have full CAPACITY for understanding the benefits and risks, with his or her judgment not impaired at the time of consenting. Prior to the 1970s, the doctor-patient relationship was based on what the doctor considered to be best for the patient; there was no legal or ethical requirement for the patient to be provided with the details in order to give approval. But society’s increasing awareness of human rights has shifted the earlier doctor “paternalism” toward patient rights and the patient’s autonomy. Crawley et al. note that “the emphasis on patient autonomy and informed consent that is common in U.S. health care and bioethics is alien to many. Among some cultural traditions, disclosure of a serious diagnosis and decisions about treatment are sometimes made through discussions with family members, not the patient. The cultural belief is that families should spare patients the suffering that accompanies the responsibility of decision making.”
Crawley, LaVera M., et al. “Strategies for Culturally Effective End-of-Life Care.” Annals of Internal Medicine 136, no. 9 (May 7, 2002): 673–679. Watstein, Sarah Barbara, and Stephen Stratton. “informed consent,” in The Encyclopedia of HIV and AIDS, Second Edition. New York: Facts On File, 2003.
inheritance Inheriting money or property can be bittersweet. On the one hand, the assets received may be greatly needed, and knowing someone cared enough to leave you even a portion of their personal estate is heartwarming; on the other hand, if the inheritance came from a close friend or relative, spending it may reopen the feelings of loss and lead to a negative emotional response. Unless the grieving stages have been completed, the inheritance may exacerbate those feelings of guilt or anger. Experts caution that if such feelings are
attached to the inheritance, it is better to wait until they are no longer an influence before making investment or purchasing decisions. In August 1997 Money magazine reported that 58 percent of Americans ages 30–59 can expect to receive an inheritance worth an average of $125,000. According to Worth magazine, which carried several articles dealing with the good and bad of inherited wealth in its March 2003 issue, during the next 50 years, families will give their heirs an astounding $25 trillion—the largest transfer of wealth in history. If inheriting money and property can be bittersweet, allocating that inheritance can lead to even more confusion and bitterness. According to psychologists, parents often do not realize that their children (even adult children) will equate the equality of the inheritance with the equality of their parents’ love. Parents may have good reasons for leaving unequal amounts—for example, a daughter who has helped support an aging parent for years might get more, or a child who has stayed away from the family for decades, may receive less. But if parents do not discuss these decisions with their children, the scenario is ripe for resentment. Even discussing it ahead may lead to problems. Goodnow writes, “Elderly parents can be traumatized by their children’s pre-inheritance squabbles, just as young children are harmed by parental bickering.” Some lawyers suggest that parents explain their distribution of money, property, mementoes, and heirlooms via a videotape that can be played in the lawyer’s office when the will is read. Some lawyers sense that bickering is on the rise as spendthrift baby boomers come to depend on legacies from “the saving generation” to bail them out of debt. Special family circumstances are cause for special considerations when making inheritance decisions— such as when second or succeeding marriages are involved, or where adoptions have occurred. Experts say special care needs to be taken when second marriages are involved. “Never assume the second spouse will take care of the children of the first marriage,” according to an attorney quoted by Goodnow. Widows who are willing to continue raising stepchildren need to be specifically provided for and it should not be assumed that they will be covered. As for situations involving adopted children, Adamec and Pierce say, “Although it would seem
interaction with health care team 151 logical that a child adopted by nonrelatives would inherit from the adoptive parents and not from birthparents (and indeed this is true in most cases), there are many ramifications of the laws regarding inheritances, and statutes vary from state to state. It is best to review current state law and consult an attorney in the event of a question or a desire to provide an inheritance for an adopted-away child.” (Two legalistic terms used when discussing inheritance are adopted-away and adopted-in. An adoptedaway child is a child who is born to a family and then leaves the birthparents because of adoption. An adopted-in child is a child that enters a family by adoption.) Estate taxes on inheritance may be kept to a minimum by establishing a trust or giving gifts during one’s lifetime. Attorneys and accountants need to be involved in this pre-planning. See also LEGACY. Adamec, Christine, and William L. Pierce. “inheritance and adoption,” in The Encyclopedia of Adoption, Second Edition. New York: Facts On File, 2000. Goodnow, Cecelia. “Greed, Misunderstanding and Lack of Communication Can Combine to Create a Clash of Wills.” The Seattle Post-Intelligencer, July 14, 2003.
became used for regular disposal of dead bodies during the Mesolithic period (10,000 to 6,000 years ago), when small tools came into use. Then during the late Bronze Age, inhumation by the ancient Greeks and Romans changed to CREMATION—except for wealthy Roman infants, who were usually buried. In time, inhumation grew in popularity until it completely replaced cremation.
initiatives to improve care at the end of life Before 1997, end-of-life research received little attention. Since 1997 there has been an explosion of initiatives to improve care at the end of life. As the science of end-of-life develops and currently funded studies are completed, it will be possible to further inform health care professionals and the public about the best practices for preventing suffering and improving quality of life at the end of life. People with life-limiting conditions can benefit as the science develops and our understanding of the unique aspects of care at the end of life improves. Knebel, Anne R. “Research Initiatives to Improve End-ofLife Care.” Geriatric Times Available online. URL: http:// www.geriatrictimes.com/g021221.html. Posted December 2002.
inhibited grief
A type of abnormal grief wherein the bereaved appears to not be affected by his or her loss because the typical feelings associated with grief are not expressed. Psychiatric symptoms, especially depression, may occur, but the link with the recent bereavement may not be recognized either by the patient or the doctor. Some controversy exists as to whether inhibited grief is a valid category of grief. Some experts feel that including such a category assumes that every bereaved person must experience grief, and they assert that it is possible for some individuals not to grieve for certain losses, such as those who feel abandoned or who were abused by the deceased, or where intense religious beliefs may deflect any presumed “requirement” for a grief reaction.
inhumation The ritual placing of a corpse in a grave. Also called interment. Inhumation first
inquest
From the Latin “to seek into,” an inquiry to determine the cause of an unexpected death, where there is any doubt as to its cause. The coroner holds the inquest, and he or she may call upon a medical examiner and or a jury for assistance.
insurance
See ACCIDENTAL DEATH AND DISMEMBER-
MENT INSURANCE; HOSPITALIZATION INSURANCE; LIFE INSURANCE.
interaction with health care team During end-oflife care, it is very important that patients and their families understand the choices and ramifications of those choices, as well as have input in decisions being made. “Timely and compassionately provided information empowers patients and families to make informed end-of-life decisions and avoids
152 interment painful, forced decisions during such critical times,” according to Tuttas. In order to do this, there must be interaction with the health care team responsible for the patient’s care. In a Duke University study to find out how well physicians discuss end-of-life care with patients, researchers found that: • The conversations were short (five to six minutes). • Physicians did most of the talking. • Only half of the time, when terms such as “life support” were used, did the physician provide further explanation of what the term actually means. • Only extreme scenarios were discussed. • The values and feelings of the patients were not explored, although they did arise, per the patient, during the interaction. • Frequently, the topic of advance directives was mentioned, although 45 percent of physicians did not instruct the patient about how to actually obtain a written document. • All of the patients expressed that they were glad to have discussed the topic with the physician. Culture plays an important role during interaction between patient and health care team. Thomas describes a case where a home health nurse initiated conversation with an African-American woman with terminal cancer about nursing home placement, but out of the presence of the woman’s daughter, son-in-law, and grandchildren. The nursing agency was perplexed when the very angry daughter called the agency and demanded a different nurse. “They did not understand either the reluctance of African Americans and other ethnic/racial minorities to place family in nursing homes, or the importance of such decisions being made from a family/collective perspective.” See also CULTURE AND DEATH. Thomas, Norma D. “The Importance of Culture Throughout All of Life and Beyond.” Holistic Nursing Practice 15, no. 2 (January 2000): 40–46. Tulsky, J. A., et al. “Opening the Black Box: How Do Physicians Communicate about Advance Directives?” Annals of Internal Medicine 129, no. 6 (September 15, 1998): 441–449.
Tuttas, Carol A. “The Facts of End-of-life Care.” Journal of Nursing Care Quality 16, no. 2 (January 2002): 10+.
interment
See INHUMATION.
inurnment
Putting ashes into an urn.
Islam and death
Islam is practiced by about 20 percent of the world’s population, concentrated in North Africa, the Middle East, South Asia, and some areas of Southeast Asia. It is one of the fastest-growing religions in the United States today. According to one recent survey, there are 1,209 mosques in America, well over half founded since 1980. Between 17 and 30 percent of American Muslims are converts to the faith. For followers of Islam, called Muslims, death is not final—it is just another stage of life, a transition between life on this Earth and the beginning of a life hereafter. Muslims consider death more of a separation from the physical body, which will be brought back to life on the Day of Judgment and, if God wills, be reunited with his or her family once again. Muslims believe that everyone has a soul. They believe that after a person dies, his or her soul goes to a world between life and death and waits there for the Day of Judgment, at which time all the souls who did good things in life—the just—will go to a paradise of gardens where rivers flow with milk and honey, and the souls who did bad things in life—the unjust—will go to hell. Followers of Islam believe that no toxins should be introduced into a body after death, including chemicals for EMBALMing, which is discouraged. The body is to be washed, wrapped in cloth, and after prayers, buried on the same day as the death. Islam accepts autopsy but only when its usefulness is demonstrated or it is legally mandated. Muslims are against EUTHANASIA. They believe that all human life is sacred because it is given by Allah, and that Allah chooses how long each person will live. Human beings should not interfere in this. Similarly, suicide is not considered a “justified” reason for killing. “Do not take life, which Allah made sacred, other than in the course of justice” (Qur’an
Islam and death 153 17.33). The Qur’an, pronounced and often spelled in English “Koran,” is a book of sacred writings of Islam revealed by God to the prophet Mohammed during his life at Mecca and Medina, and dictates how Muslims will live their lives. As death approaches, the close family and friends try to support and comfort the dying person by whispering the call to prayer into the dying person’s ear. The idea is that the last word a Muslim should hear is Allah, reinforcing his commitment to God. Funeral Rituals and Mourning Cremation is not permitted. In preparation for the required burial, the eyelids are closed, the body is ritually washed with scented water by members of the family, then dressed in a seamless white shroud, and then taken to the mosque, where the community gathers to perform a special prayer. For Muslims, paying respects to the dead is an obligation for everyone in a community, regardless of whether each person knew the deceased. In Islam, burial must occur as quickly as possible following death, within 24 hours if at all possible. Interment must be done in an Islamic cemetery. Among traditional Muslims, only men may attend burials. Unless local laws require caskets, wrapped bodies are put directly into the ground for burial. The body is laid on its right side and always positioned to face Mecca, the direction of all Muslim prayers. The right hand is also placed under the head and the head turned toward the east. Funeral services are short and include a question about whether the deceased owed any debts or if anyone held any grudges against the person. If so, these must be forgiven before burial in order to free
the spirit. The family of the dead has a responsibility to fulfill any debts he had as soon as possible, although anyone may pay a dead person’s debts. Muslims believe that the payment of outstanding debts can benefit the dead by relieving them from some of the punishment due to them for their negligence in repaying. Men typically carry the casket, a plain pine box, to the grave site while reciting verses from the Qur’an. Family and friends at the burial each put a shovel-full of dirt in the grave and say a prayer. After burial is completed, mourners say a final prayer at the grave. Sometimes, they return to the mosque for another gathering. The Muslim grave is marked by raising its top level of dirt above surrounding grounds. A stone may be used to mark its location, but no writings are allowed. Buildings or other forms of structures are not allowed on top of the grave. Traditionally, three days later, more family and friends visit the home of the dead to recite verses from the Qur’an, eat together, and then pray. Mourners are supposed to maintain contacts and courteous relationships with close relatives and close friends. Charity, fasting, prayers, and pilgrimage are often performed on behalf of the dead. Visiting the graves is recommended for the living to remember death and the Day of Judgment. Clarke, Elizabeth. “How Different Religions Handle Death of Faith and Forever.” Palm Beach Post, January 4, 2002. Islamic Paths. “Death in Islam.” Available online. URL: http://www.islamic-paths.org/Home/English/ Issues/Death/TOC.htm. Downloaded July 16, 2004.
J two-note preparatory riff to alert his fellow musicians. At this point, the drummers begin to play what has become known as the ‘second line’ beat.” The band now begins its return home, followed by members of the lodge, family, friends, and then other celebrants, who have become “affectionately known as the second line.” The music becomes more lively, even joyous, and the parade of mourners wave elaborately decorated umbrellas “that seem to be more about styling and profiling than protection from nature’s elements.” As the band marches along, people who are able fall in “behind the band, next to the band, between the band members, affecting the body language of a dance, a strut, a ‘booty bounce’ to the music of the second-line beat.” Traditional jazz funerals began to change in the 1970s, according to Marsalis. Although the jazz funeral remains an important part of New Orleans black culture, the younger brass band members are straying away from the traditional music; the stately march to the grave site is not as often a part of the event, with livelier music beginning at the church door; and the newer bands are no longer attached to social and pleasure clubs. “Moreover,” he writes, “jazz funerals were traditionally for musicians and club members; today they are for anyone who can pay for them.”
jazz funerals
A tradition of New Orleans, where jazz is the fabric of life and a funeral is a major celebration of a life. The roots of the jazz funeral date back several centuries to West Africa, where secret societies assured fellow tribesmen that a proper burial would be performed at the time of death. To accomplish this guarantee, resources were pooled to form what many have labeled an early form of insurance. When slaves from these areas were brought to America, the idea of providing a proper burial to fellow brothers and sisters remained strong. As time passed, these very same concepts that were rooted in African ideology became one of the basic principles of the social and pleasure club. The social and pleasure club guaranteed proper burial conditions as did many fraternal orders and lodges to any member who passed. These organizations were precursors to the concept of burial insurance and debit insurance companies. The practice of having music during funeral processions was added to the basic African pattern of celebration for most aspects of life including death. As brass bands became increasingly popular during the early 19th century, they were frequently called on to play processional music. Eileen Southern in The Music of Black America wrote, “On the way to the cemetery it was customary to play very slowly and mournfully a dirge, or an ‘old Negro spiritual’ such as ‘Nearer My God to Thee,’ but on the return from the cemetery, the band would strike up a rousing, ‘When the Saints Go Marching In,’ or a ragtime song such as ‘Didn’t He Ramble.’” This tradition has continued through the years. During the mournful walk toward the cemetery, the mood is somber and there is little or no improvisation. After the burial ceremony has been completed, Marsalis explains that the lead trumpeter “sounds a
Marsalis, Ellis L. Jr. “New Orleans Jazz Funerals.” American Visions 13, no. 5. (October–November 1998): 19+. Touchet, Leo, and Vernel Bagneris. Rejoice When You Die: The New Orleans Jazz Funerals. Baton Rouge: Louisiana State University Press, 1998.
Judaism and death Judaism is the oldest of the world’s four great monotheistic religions (believing in one god) and is also the smallest, with around 12 155
156 Judaism and death million followers around the world. About 2.8 million, or 51 percent, of Jewish Americans follow Judaism. In Europe, about 2.5 million Jews live mostly in France, England, Russia, and the Ukraine. Jews are divided according to their beliefs and practices. Orthodox Jews follow the original teachings and traditions of the faith closely. Reform Jews (a movement begun in Germany in the early 1800s) have adapted their faith and customs to modern life, and incorporated the discoveries that modern scholarship has made about the early Jews. Conservative Jews fall somewhere between Orthodox and Reform Jews. Death and mourning customs and rituals vary among these groups. Jews do believe in an afterlife, although the specifics have changed through history. Orthodox Judaism teaches that the body will eventually be resurrected by God. Today’s more liberal Jews do not believe in resurrection, although many still believe in an afterlife for the soul. The Jewish heaven has two gates, with angels keeping watch over them. When the righteous person approaches the gate, angels remove his burial garments and clothe him in appropriate robes and crowns for entry into heaven. Jewish law forbids any kind of EUTHANASIA or HASTENING DEATH, whether initiated or carried out by medical staff, the dying patient, or the patient’s family. Even though nothing can be done to shorten life, Jewish law does not require doctors to make the dying process last longer than it would naturally. Thus, if a Jewish patient is being kept alive by a ventilator, and would die naturally without it, it is permissible to switch off the ventilator. Orthodox Judaism does not accept the concept of BRAIN DEATH and defines death as the absence of respiration, cardiac, and brain function. Jewish law does not allow cremation because this would not allow the body to be returned to God in the best possible condition. Also not allowed are autopsies, organ donation, or embalming. If an autopsy is required by law, a rabbi must be consulted. The process of embalming is a desecration of the body, and thus not allowed—and usually not needed because traditional Jews do not hold the WAKE or viewing so common with Christian funerals. Friedman explains that along with embalming, applying cosmetics to the deceased is also not
allowed, but notes that until the 18th century, most Jewish deaths occurred in the home and not in the nursing home or hospital. “Back then there was ample time to view the deceased and say goodbye before the ritual washing began.” She says that part of the secularization of Jewish funerals is the concept of viewing “and reflects the culture in which we live”—such as family having to fly in from Los Angeles or Miami. “With the popularization of viewing, many American Jews have accepted embalming” even though it is forbidden by Jewish law. Funeral Rituals and Mourning The body must be buried as soon as possible, ideally within 24 hours. Jewish funeral customs revolve around respect for the body, beginning with never leaving it alone. Until burial, it is watched over by a guard called a shomer, who recites Jewish psalms. In preparation for burial, the body is washed in a ritualistic manner, then dressed in a white or muslin shroud without knots or bows. Friedman explains, “The idea is that nothing should inhibit the body’s return to the earth and that everyone, regardless of his or her station in life, should be equal in death.” Burial takes place in a simple wooden coffin, using wooden pegs for nails. In some places, and where allowed, the body is buried without a coffin. To begin the funeral, mourners recite the kaddish, a memorial prayer not about death, but rather an affirmation of life and faith in God. One ritual, called Keriah, involves the tearing of a black ribbon or garment of each mourner as a symbol of mourning and grief. Orthodox Jews continue to tear their clothing on the left hand side (over the heart) following death of a parent, and on the right side when mourning other relatives. But Reformed or Conservative Jews are more likely to tear a black ribbon that is pinned to their clothes. During the actual burial, family and friends help fill in the grave, traditionally using the back of a shovel, with the reason given ranging from a show of respect and honor to the dead, to an indication of a reluctance to perform this ritual. Immediately upon returning from the cemetery, the shiva candle is lit to mark the beginning of the seven days of mourning. The seven immediate family members (mourners) who sit shiva are the mother and father, son and daughter, brother and
Judaism and death 157 sister, and husband or wife. Other family members and friends come by to comfort the mourners, and they bring food with them. Traditionally, all mirrors in the home are covered during shiva, and these seven mourners do not show any signs of vanity; they do not wear leather shoes, put on makeup or shave, bathe unnecessarily, wear new clothes, cut their hair, have sexual relations, conduct business, or participate in entertainment. They sit on low seats to symbolize submission to God’s will and their being brought low in grief, and recite the kaddish daily. For 30 days following their loss, mourners do not attend weddings or other events that have music. The son or daughter of the deceased do not attend such events for a full year. Friedman writes, “Many Jewish customs relating to death can be traced to law, but others reside in
myth and folklore.” For example, she explains that the covering of mirrors, overturning chairs and breaking pots was supposedly to discourage the soul from returning home. And the “opening and closing of a window immediately following a death is said to allow the departing soul to exit.” Customs vary as to when one may visit the grave site. In Israel, people go on the day they finish sitting shiva. Others wait a month, and some do not go for 11 months. Similarly, the tombstone unveiling may occur 30 days after burial or 11 months later. Clarke, Elizabeth. “How Different Religions Handle Death of Faith and Forever.” Palm Beach Post, January 4, 2002. Friedman, Stacia. “The Afterlife: An Exploration of Jewish Death and Bereavement Rituals Is Helping Baby Boomers Face Their Own Mortality.” Inside 17, no. 3 (September 30, 1996): 81+.
K Kevorkian, Dr. Jack (1928–
murder. They did, and on April 13, 1999, he was found guilty and sentenced to 10–25 years in prison. He is serving his sentence at Thumb Correctional Facility, Lapeer, Michigan.
)
Michigan pathologist and ASSISTED SUICIDE pioneer, who made it his mission to convince the medical community and lawmakers that people have a right to avoid a lingering, painful death by ending their own lives with help from physicians who can ensure that they die peacefully. In 1990 he was present at the death of Janet Adkins, a 54-year-old Portland, Oregon, woman with Alzheimer’s disease. Her death using Kevorkian’s “suicide machine” occurred in his 1968 Volkswagen van in Groveland Oaks Park near Holly, Michigan. For the next eight years, he admitted to assisting in 100 deaths, while managing to avoid legal penalties; he was prosecuted several times, but either acquitted or set free due to a mistrial. But in late 1998 he crossed from passive to active EUTHANASIA when he gave a man a lethal injection, rather than simply providing the man the means to kill himself, and videotaped the act for broadcast on national TV, daring prosecutors to charge him with
Kübler-Ross, Dr. Elisabeth (1926–2004)
American psychiatrist who was born in Switzerland, studied medicine at the University of Zürich, and became a pioneer in the field of THANATOLOGY. Her influential On Death and Dying (1969) mapped out a fivestage framework to explain the experience of dying patients, which progressed through DENIAL, ANGER, BARGAINING with God, DEPRESSION, and ACCEPTANCE. A prolific writer, Kübler-Ross’s work has had lasting significance among the medical community, who have generally become more responsive to the needs of dying patients and their families. She is also one of a handful of people credited with pioneering the American HOSPICE movement.
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L well below the 60 days considered necessary for people to get maximum benefit. In fact, dying patients commonly have the support of hospice care for less than a week.
Last Acts
A national coalition of more than 1,000 organizations whose main thrust is an education campaign to improve care for people who are dying and their families. Last Acts serves as a clearinghouse for sharing information and ideas at the national, state, and local levels, while providing a forum for discussion, collaboration, and broad dissemination of new information. The honorary chair of Last Acts is former first lady Rosalynn Carter. Last Acts is funded by the Robert Wood Johnson Foundation and Partnership for Caring. On November 18, 2002, Last Acts released the first-ever “report card” on end-of-life care for the United States. The state-by-state analysis, Means to a Better End: A Report on Dying in America Today, graded all 50 states and the District of Columbia on eight key elements of end-of-life care. Most states earned Cs, Ds and even Fs on the majority of the criteria. Among the report’s findings:
• Hospital end-of-life care services Though the number of organized palliative care programs in hospitals is increasing, such programs are not yet the norm. Nor do a sufficient number of hospitals offer pain management programs and hospice services. • Care in intensive care units (ICU) at the end of life Nationwide, 28 percent of Medicare patients who die are treated in ICUs in their last six months of life. The rate varies widely, even within individual states. Patients in ICUs typically are subjected to heavy use of technology. This may be at the expense of attention to comfort or against expressed treatment preferences—often expressed as “I don’t want to die hooked up to machines.” • Persistent pain among nursing home residents Nearly half of the 1.6 million Americans living in nursing homes have persistent pain that is not noticed and not adequately treated.
• State advance directive policies Some states’ laws include confusing language or create bureaucratic hurdles that make it difficult for citizens to express their preferences or to designate appropriate surrogate decision-makers.
• State pain management policies All states have laws addressing the use of controlled substances. Some are effective, but others create formidable barriers to good pain management.
• Location of death Although research shows that 70 percent of Americans would prefer to be at home with loved ones in their final days, only about 25 percent die at home. Where people die—in a hospital, a nursing home, hospice, or at home—depends on the state or community where they live and the health care resources available there. Research has shown that these factors outweigh patient preferences.
• Number of physicians and nurses certified in palliative care Palliative care training for the nation’s physicians and nurses lags far behind the needs of the aging U.S. population. This is true for medical and nursing students, as well as for the hundreds of thousands of professionals already in practice.
• Rate of hospice use Hospice care is a “gold standard” for end-of-life care. However, hospice is not widely used in most states. Furthermore, the average length of stay in hospice has dropped to
Last Acts does have its detractors. A coalition of people with chronic disabilities has voiced displeas-
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162 last hours of living ure at Last Act’s spinoff organization, called Last Chapters, which is included in its Web site and features articles and essays detailing the complexities of “living with dying.” Included among these articles are stories of people living with Parkinson’s, Crohn’s disease, and rheumatoid arthritis—diseases that may be lifelong, but are not terminal in themselves. People with such diseases are concerned that labeling such persons as “dying” sends a message counter to the long-standing work of the disability community to communicate the potential of living, working, and contributing even with such disabilties.
last hours of living
With fewer than 10 percent of us dying suddenly, the vast majority can expect to die after some time period of illness, with gradual deterioration until an active dying phase at the end. In their handbook for physicians, Emanuel et al. caution that most people have little or no actual experience with those last hours of life and thus base their expectations on an exaggerated sense of what dying and death are like, “based on media dramatization and our vivid imaginations.” The authors stress to physicians and nurses that if managed well, the last hours can lead to significant personal and family growth; but if managed poorly, life closure may be incomplete, suffering may occur unnecessarily, family distress may continue long after the patient’s death, and those who watch may worry that their own death will be similar. See also BODILY DETERIORATION AS DEATH APPROACHES; DYING PROCESS; DYING TRAJECTORY; EDUCATION FOR PHYSICIANS ON END-OF-LIFE CARE (EPEC). Emanuel, L. L., C. F. Von Grunten, and F. D. Ferris. “Last Hours of Living.” The Education for Physicians on Endof-life Care curriculum, Institute for Ethics, American Medical Association. Available online. URL: http://www. ama-assn.org/ethic/epec/download/module_12.pdf. Posted 1999.
last rites
Rites performed in connection with a death or burial. Also a sacrament of the Roman Catholic Church once called extreme unction or “the last anointing.” With Vatican (Council) II and the reform of the liturgy, the sacrament for the
dying is known as Viaticum, or the reception of the Eucharist for the last time.
laws
The federal funeral law, called the FUNERAL RULE, is enforced by the Federal Trade Commission and primarily addresses disclosure of prices and other consumer concerns by funeral directors. Most states and local jurisdictions have laws regarding funerals and burial. To find out what those requirements are, one should contact the appropriate licensing agency, which is often the Department of Health, or the state attorney general. In 2003 the General Accounting Office (GAO) conducted a study of state funeral laws. The GAO report found that third-party sales of funeral goods are largely unregulated, that few states require regular cemetery inspections, and that a broad disparity exists in both the way states regulate various segments of the death-care industry and the mechanisms in place to enforce such regulations. According to the report, while funeral homes themselves are generally regulated and licensed, other businesses providing death-care services, such as crematories, cemeteries, and funeral-goods salesman are not.
leading causes of death
Data released by the National Center for Health Statistics showed the 10 leading causes of death in the United States for 2001 as: 1. 2. 3. 4. 5. 6. 7. 8. 9.
Heart Disease Cancer Stroke Chronic Lower Respiratory Disease Accidents Diabetes Pneumonia/Influenza Alzheimer’s Disease Nephritis, nephrotic syndrome, and nephrosis (kidney-related) 10. Septicemia (blood poisoning) (See also table of “Leading Causes of Death by Population Group” in Appendix III. It lists 2001 census
legislation related to end-of-life care 163 figures for American Indian/Alaska Native, Asian American, Black or African American, Hispanic or Latino, Native Hawaiian and Other Pacific Islander, Multiracial, White, Men, and Women population groups.)
legacy Something handed down or left behind by the deceased for future generations. Typically, a legacy is thought of as concrete, material items, such as money, life insurance, or real estate, but a legacy may also be a philosophy or belief system, spirituality, or even the fun of a playground for children in an urban ghetto. ELISABETH KÜBLER-ROSS’s legacy has been said to be: “to have transformed the way the medical community thinks.” See also INHERITANCE. Boyles, Denis. “Lasting Impressions.” AARP 45w, no. 5 (September/October 2002): 80–87.
legal issues in end-of-life care
Although most end-of-life decisions would appear to be personal in nature, with only family, doctor, and clergy involved, some of the most central issues related to end-of-life care and decision-making are governed by state or federal laws. Some decisions might be defensible under ethical principles, but they might not be permissible under legal provision. Among the issues that may be governed by law rather than, or along with, personal decision are: prescription pain medication such as OPIATES/OPIOIDS; DO-NOTRESUSCITATE ORDERS; ADVANCE DIRECTIVES; ASSISTED SUICIDE; LIVING WILL; PATIENT SELF-DETERMINATION ACT; and INFORMED CONSENT.
legislation related to end-of-life care
A few bills introduced during the 108th Congress (2003–04) focus on end-of-life care: • Advanced Directives and Compassionate Care Act Mandates portability for advance directives, i.e., states would have to honor advance directives filled out in any other state. Directs the Department of Health and Human Services (HHS) and Centers for Medicare & Medicaid Services (CMS)
to develop standards for evaluating end-of-life care. Establishes an Advisory Committee on Endof-Life Care to advise the secretary of HHS and the CMS administrator. Funds a 24-hour hotline for information, referral, and direct assistance to patients and families dealing with end-of-life care. Awaiting introduction in the 108th Congress (S. 2489 in the 107th Congress). • Lifespan Respite Care Act (S 538 HR 1083) Authorizes grants to promote a coordinated system of accessible respite care services for family caregivers of individuals with special needs. Authorizes funds for recruiting and training respite care providers and volunteers. Authorizes $125 million for Fiscal Year (FY) 2003; $150 million for FY 2004; $175 million for FY 2005; $200 million for FY 2006; and $225 million for FY 2007. Introduced March 5, 2003. Approved unanimously (21–0) by the full Senate Health, Education, Labor and Pensions (HELP) Committee on March 19, 2003. Passed by the Senate on April 10, 2003. • Medicare Payment Restoration and Benefits Improvement Act of 2003 (HR 26) Allows for Medicare coverage of hospice consultation services when a patient is diagnosed with a terminal illness. Establishes a rural hospice demonstration program. Increases by 10 percent the reimbursement rate for hospices in frontier areas. Introduced January 7, 2003. • Rural Communities Hospice Care Access Improvement Act of 2003 (S. 114 HR 754) Removes the 20 percent inpatient limitation under the Medicare program on the proportion of hospice care that certain rural hospice programs may provide. Introduced January 9, 2003. • Health Care Coverage Expansion and Quality Improvement Act of 2003 (S. 10) Contains “continuity of care” provisions stipulating that, if a health insurance contract is terminated or switched, certain patients may remain under the care of their current health care provider(s) and the new plan must reimburse those providers even if the providers are not participating in the new plan. Defines “terminally ill” patients as among those who must be given the option of remaining under the care of the provider(s) currently treating
164 lie in state the terminal illness. These patients may continue receiving services from current providers for the remainder of their lives. Introduced January 7, 2003.
lie in state
To be displayed formally to the public before burial; an honor reserved for heads of state, government leaders, and a few who die as national or state heroes. Sometimes the body is placed in a glass-topped coffin; in any case, the position of the casket will allow members of the public to walk past it and pay their respects. Typically, the casket will be placed on a bier, and nearby may be an honor guard, display flowers, and draped flags.
life after death
See AFTERLIFE.
life expectancy The average number of years people live. The dictionary defines life expectancy as “an expected number of years of life based on statistical probability,” a probability that is calculated by examining the survival rate for a specific population (for example, everyone born in 1925 or everyone born in 1990), and then using that as the probability that people in that population will live to a particular year. Americans’ life expectancy hit an all-time high of 77.4 years in 2002, up from 77.2 in 2001 and 77 in 2000, and increased for both men and women as well as whites and blacks. For men, life expectancy increased from 74.3 years in 2000 to 74.4 years in 2001; for women, life expectancy increased from 79.7 years to 79.8 years. Record high life expectancies were observed in 2002 for both men and women, and for African Americans and whites. Roy and Russell explain that “over the centuries average life expectancy has increased from about age 20 in ancient Rome some 2,000 years ago (death in childhood and youth were common there owing to the lack of sanitation and medical knowhow) to about age 40 at the time that the pilgrims came to America. Between the time of the pilgrims and 1900, life expectancy in America grew slowly to about age 47. After the turn of this century it exploded with an increase to 75 years, an unprece-
dented jump of almost 30 years between 1900 and 1975.” Increases in life expectancy since 1960 have been due in part to better medical control of cancer, heart disease, and stroke. Although life expectancy in the United States was the highest ever in 2002, infant mortality increased from a rate of 6.8 infant deaths per 1,000 live births in 2001 to a rate of 7.0 per 1,000 births in 2002, the first year since 1958 that the rate has not declined or remained unchanged. The 2002 Centers for Disease Control and Prevention report, released in February 2004, attributes the rise in infant mortality to an increase in neonatal infant deaths (infants less than 28 days old), particularly infants who died within the first week of life. However, there was a continued decrease in late-term fetal deaths, defined as 28 or more weeks of gestation. Three causes of death accounted for most of the increase in infant mortality: congenital anomalies (birth defects), disorders related to short gestation and low birth weight, and maternal complications of pregnancy. Deaths from sudden infant death syndrome (SIDS) declined between 2001 and 2002, continuing a long-term downward trend. The report cited 27,977 infant deaths nationwide in 2002, up from 27,568 in 2001, out of about 4 million births each year. The report tracked more than 130 causes of infant death, but more detailed information was scheduled to become available in 2004 when linked birth and death records were to be analyzed by the National Center for Health Statistics. Overall, death rates for the total U.S. population dropped in 2002. The national age-adjusted death rate decreased slightly from 855 deaths per 100,000 population in 2001 to 847 deaths per 100,000 in 2002. There were declines in mortality among most racial, ethnic, and gender groups except for American Indians (both males and females) and nonHispanic white females, whose death rates remained unchanged from 2001. Among the nation’s leading causes of death, there were declines in mortality from heart disease (3 percent), stroke (nearly 3 percent), accidents/ unintentional injuries (nearly 2 percent), and cancer (1 percent). The biggest decline in mortality among the leading causes of death was for homicides—down 17 percent. That number had increased sharply in 2001 due to the September 11 terrorist
life-prolonging decision making 165 attacks. Excluding the September 11 deaths, the decrease from 2001 to 2002 would have been 3 percent, which still reflects a continuing downward trend in homicides that began in 1991. There has also been a continued decline in the preliminary age-adjusted death rate from HIV/AIDS, which dropped 2 percent between 2001 and 2002. HIV mortality has decreased approximately 70 percent since 1995, but remains the fifth leading cause of death for people ages 25 to 44. Mortality rates increased for some leading causes of death, including Alzheimer’s (up 5.8 percent), influenza and pneumonia (up 3.2 percent), high blood pressure (up 2.9 percent), and septicemia or blood poisoning (up 2.6 percent). In February 2004, the Canadian Population Health initiative released a report, Improving the Health of Canadians, which stated that the top 20 percent of income earners in Canada live, on average, about five years longer than the lowest 20 percent. The aboriginal, consistently among the poorest of the poor, can expect to live, on average, 10 years less than a non-native, and infant mortality rates in Indian and Inuit communities are three times the national average. Between 1971 and 1996, income has risen considerably and the life expectancy of Canadians in all income groups has also risen, with the life expectance of the poor about the same today as it was for the rich 25 years ago. Centers for Disease Control and Prevention. Deaths: Preliminary Data for 2002. Available online. URL: http://www. cdc.gov/nchs. Posted February 2004. Roy, F. Hampton, and Charles Russell. “life expectancy,” in The Encyclopedia of Aging and the Elderly. New York: Facts On File, 1992.
life insurance
Proceeds paid to named beneficiaries when the insured person dies. There are two basic kinds of life insurance: term and permanent. Term insurance covers the insured for a specified length of time. It pays a benefit only if the insured dies during that term. Mortgage insurance is a typical use for term insurance. Permanent insurance— including whole, ordinary, universal, adjustable, and variable life—is protection that can be kept in force for as long as you live. Permanent life insur-
ance accumulates a cash value, which can be borrowed against. Any such loans must be paid back with interest or the named beneficiaries will receive a reduced death benefit. Once the insured has died, the beneficiary or executor of the estate needs to contact the insurance agents or companies holding coverage on the deceased. The companies’ contact information will be printed on the policies; the agents’ business cards may be attached to the policies. Each company will want the original life insurance policies or policy numbers, plus a certified copy of the death certificate. Once a company has verified that the necessary premiums to keep the policy “in force” were paid to the date of death (or to completion if it is, for example, a whole life 20-year-pay policy), the life insurance company should promptly pay the benefits, assuming that everything is in order and the policy has been in effect for at least two years. (Once the policy is at least two years old, it is in the “incontestable period” and must be paid, except in extraordinary circumstances.) If death occurs within the two-year contestable period, it may still pay off in full, but the company has the right to investigate whether all information provided when the policy was started, especially regarding the deceased’s health at that time, was accurate. Even if premiums on the policy were not currently being paid, the policy may have enough cash value to keep it in force for a period of time, so it is always a good idea to check out any life insurance policies found among the deceased’s possessions. According to insurance companies, processing a standard policy death claim should take only one to four weeks from the time the insurer’s claims office has all the needed paperwork.
life-prolonging decision making At some time, when a person is suffering a lingering death with no hope of cure, the decision will have to be made by the medical team, the patient, and family or designated proxy whether to use whatever means are available to prolong the patient’s life, or whether to simply keep the patient as comfortable as possible and let nature take its course. Such decisions are equally difficult for the medical staff and the family. In 1998, the British Medical
166 life support systems Association’s Medical Ethics Committee published guidelines in this area. Among its suggestions: • Where there is reasonable doubt about its potential for benefit, treatment should be provided for a trial period with a subsequent prearranged review. If, following the review, it is decided that the treatment has failed or ceased to be of benefit to the patient, consideration should be given to its withdrawal. • Before a decision is made to withhold or withdraw treatment, adequate time, resources, and facilities should be made available to permit a thorough and appropriate assessment of the patient’s condition including, where appropriate, the patient’s potential for self-awareness, awareness of others, and the ability intentionally to interact with them. This should involve a multidisciplinary team with expertise in undertaking this type of assessment. • The benefits, risks, and burdens of the treatment in the particular case should be assessed. • Although ultimately the responsibility for treatment decisions rests with the clinician in charge of the patient’s care, it is important, where nonemergency decisions are made, that account is taken of the views of other health professionals involved in the patient’s care and people close to the patient, in order to ensure that the decision is as well informed as possible. • Even where their views have no legal status, those close to the patient can provide important information to help ascertain whether the patient would have considered life-prolonging treatment to be beneficial. • Good communication, both within the health care team and between the health team and the patient and/or those close to the patient, is an essential part of the decision making. Wherever possible, consensus should be sought among all those consulted about whether the provision of life-prolonging treatment would benefit the patient. • Decisions to withhold or withdraw conventional treatment, on the basis that it is not providing a benefit to the patient, should be made by the clinician in overall charge of the patient’s care following discussion with the rest of the health care team
and, where appropriate, those close to the patient. Where the clinician’s view is seriously challenged and agreement cannot be reached by other means, review by a court would be advisable. British Medical Association. “Withholding and Withdrawing Life-Prolonging Medical Treatment: Guidance for Decision Making.” Available online. URL: http:// www.bmjpg.co.uk/withwith/contents.htm. Updated April 24, 2001.
life support systems Medical procedures or interventions that, when applied to an individual, aid, support, or replace a vital function of the body that has been seriously damaged. Such techniques include artificial pacemakers, internal defibrillators, dialysis machines, respirators, and artificial means of providing nutrition or hydration. The use of life support systems to postpone the moment of death— also called life-sustaining treatment—or to maintain the individual in a state of permanent unconsciousness sometimes raises such ethical issues as the QUALITY OF LIFE, EUTHANASIA, and the right to die, and has been the subject of much legal and moral debate. Some people specify their wishes concerning prolonged artificial life support, especially should they be in a PERSISTENT VEGETATIVE STATE, in a LIVING WILL. A HEALTH CARE PROXY is another legal means of ensuring that a person’s wishes regarding artificial life support are respected, even if the person is unable to communicate those wishes.
living trusts A legal arrangement created during a person’s lifetime, which lets that person control the distribution of his or her estate. The key element of a living trust is that it can be changed or revoked at any time during the donor’s life. The way it works is that you transfer ownership of your property and your assets into the trust. You can serve as the trustee or you can select a person or an institution to be the trustee. If you are the trustee, you will have to name a successor trustee to distribute the assets at your death. The advantage of a living trust is that, properly drafted and executed, it can avoid probate because the trust owns the assets, not the deceased. Only
living will 167 property in the deceased’s name must go through probate. After January 1, 2004, a husband and wife with a properly drafted set of trusts can pass $3 million down to their children without paying any federal estate taxes. The possible disadvantage of a living trust is that poorly drawn or unfunded trusts can result in additional costs and endanger one’s best intentions. Living trusts can be revocable or irrevocable. The most popular type of trust is the revocable living trust, which allows the individual to make changes to the trust during his or her life. Revocable living trusts avoid the often lengthy probate process but, by themselves, do not provide shelter for assets from federal or state estate taxes. When an irrevocable living trust is set up, ownership of the assets is turned over to the trustee. The trust becomes, for tax purposes, a separate entity, and the assets cannot be removed, nor can changes be made by the grantor. This type of trust often is used by individuals with large estates to reduce estate taxes and avoid probate. However, if the grantor names himself or herself as trustee or is entitled to trust income, the tax benefits would generally be lost. The Better Business Bureau cautions that many consumers have lost thousands of dollars by buying living trust kits that turned out to be virtually worthless. Better Business Bureau, New York. What You Need To Know about Living Trusts. Available online. URL: http:// www.newyork.bbb.org/seniorsolutions/pdfs/bbb_srsol_ trusts.pdf. Downloaded August 28, 2003. Federal Trade Commission. Living Trust Offers: How to Make Sure They’re Trust-worthy. Available online. URL: http:// www.ftc.gov/bcp/conline/pubs/services/livtrust.pdf. Posted July 2000. NOLO Law Center. “Living Trust FAQ.” NOLO Law Center. Available online. URL: http://www.nolo.com/lawcenter/ ency/index.cfm. Downloaded August 28, 2003.
living will An ADVANCE DIRECTIVE that tells what life-sustaining medical treatment a person does or does not want if he or she is not able to make his or her wishes known, such as during a terminal state of unconsciousness. For example, a person who does
not want to be kept on a ventilator if he can no longer breathe on his own can direct that such a procedure not be performed. Or a person may state in her living will that she not be fed through a tube if such a procedure is being done only to prolong her life. Under certain conditions, it permits doctors to withhold or withdraw life support systems. In the absence of a living will, medical care decisions are generally made by a spouse, guardian, health care agent, or a majority of parents and children. But if family members and doctors have difficulty deciding on medical care, the matter could be decided in court. Other names for this type of document include “directive to physicians,” “health care declaration,” or “medical directive.” Regardless of what it is called, this document’s purpose is to guide family and doctors in deciding how aggressively to use medical treatments intended to delay death. Only 36 percent of Americans have a living will, according to a 2004 survey by the legal Web site FindLaw (http://www.findlaw.com). FindLaw offers the following suggestions for creating a living will: • Make sure your living will conforms to your state’s laws. A living will must meet specific legal requirements. For example, some states require it contain specific language and be signed in the presence of two qualified witnesses as well as certified by a notary public or a clerk of the superior court. • Make clear, consistent choices. To be effective, the document should specify not only whether you want extraordinary life-saving measures, but also whether you wish to receive pain medication, artificial nutrition, or hydration. • Store extra copies. Keep the original in a place where family members can easily find it. If your state law allows, you may wish to sign several copies, have each witnessed and certified, and give an original to the appropriate people, such as family members and family physicians. However, if you change your mind and revoke or change your living will, make sure you destroy all originals and copies. • Appoint a health care agent. You may wish to designate a specific person as your health care agent by signing a health care power of attorney or general durable power of attorney document.
168 livor mortis The health care agent will then have the authority to carry out your wishes and make decisions regarding your care. • Review your living will if you move. A living will may not be valid if you move to another state. If you spend a significant amount of time in another state, you may want to sign a living will for each state. However, in some states, this may invalidate previously signed living wills. • Consult an estate-planning attorney. Living wills and powers of attorney may be invalidated or contested if there are errors or problems in conforming to state law.
when touched, indicates that lividity is not yet permanent, which indicates that death likely occurred between two and 10 hours ago. See also ALGOR MORTIS; RIGOR MORTIS.
local death
Death of a part of the body or of a tissue by necrosis, such as gangrene.
Last Acts. Thinking Ahead: Advance Planning for End-Of-Life Care. Available online. URL: http://www.lastacts.org/ files/misc/THINKINGAHEAD.pdf. Downloaded July 16, 2004.
loneliness A common feeling experienced during bereavement. In a Swedish study of the elderly where one spouse had died, feeling lonely was the most persistent problem during the first year following loss of the spouse. Loneliness is also commonly experienced by the dying and can lead to depression. In a 2002 study of patients dying in nursing homes, 21 percent experienced loneliness.
livor mortis
long-term care
Also known as lividity or hypostasis—the pooling of blood in the “dependent parts” or lowest points of the body after circulation ceases. It refers to the dark purple or maroon color that develops after the heart stops and no longer churns the blood; heavier red blood cells settle downward from the plasma by gravity. Livor mortis begins immediately following death, and is visible within a couple of hours. It settles in permanently within eight to 10 hours. Livor mortis is one of several factors investigators look at when trying to determine time, location, and cause of death. Although typically lividity has a purple or reddish-purple color, lividity in deaths from exposure to the cold is bright pink. In deaths from carbon monoxide poisoning, lividity is a cherry red; in other types of poisoning, a chocolate brown. Cyanide poisoning results in lividity described by different authors as pink, scarlet, and violet. The lividity does not occur where the body is in contact with something; thus, a body lying on its back will show lividity in the small of its back and its neck, but not in parts of the body directly touching the ground, which helps determine if a body has been moved after death. Similarly, if a body is found lying on its back, but the lividity appears on the front or one side, then the corpse has been moved since death. Skin that shows lividity, but pales to white
A residence in which some level of personal care is provided, with stays varying from several weeks to many years, including the rest of one’s life. Among long-term care facilities are assisted living, rehabilitation centers, and nursing homes. Today, long-term care may also apply to home health care and homemaker services. People who require long-term care have chronic illnesses or disabilities that do not require the intensive supervision and acute care provided in hospitals. Their health condition, however, makes them heavily dependent on others for supervision or assistance with activities of daily living. Not all people receiving long-term care are elderly, but the majority are.
long-term care insurance Long-term care is expensive: A nursing home stay costs $50,000 to $100,000 a year, according to Tom Scully, Administrator, Centers for Medicare & Medicaid Services, Department of Health and Human Services, in his report to the Senate Finance Committee on July 17, 2003. The average stay in a nursing home is 2.6 years with the total cost averaging $137,500. Although such care is subsidized by the federal Medicare program and the federal/state Medicaid program, Medicare is time-limited, and to qualify for Medicaid, one must “spend down” assets. Since
long-term care insurance 169 the mid-1970s, an alternative to financing long-term care is long-term care insurance, but experts caution that such insurance coverage is not for everyone. Long-term care policies can be purchased on an individual basis and, increasingly, through group plans offered by employers. Most pay a fixed dollar amount—$50 to $250 a day—for the time period chosen by the policyholder. Premiums are lower the younger age at which one begins paying; plus, because insurers will not cover preexisting conditions, waiting until one is older to take out such a policy may be too late if a long-term disease such as Alzheimer’s has already been diagnosed. Because of its cost, experts say long-term insurance makes most sense for people with at least $75,000 in assets, who do not have children or other relatives who can help out with long-term care, and who can pay a mini-
mum of $1,000 and more likely closer to $2,000 per year in premiums without touching money needed for regular current living expenses. If begun when a person is in his or her 40s, these premiums may have to be paid for as long as 40 years before the need for long-term care occurs. Kaiser Family Foundation. “Private Long-Term Care Insurance: Who Should Buy It and What Should They Buy?” Kaiser Family Foundation. Available online. URL: http://www.kff.org/insurance/6072-index.cfm. Downloaded July 16, 2004. Richard, Alexander, ed. “Avoiding Fraud When Buying Long-Term Care Insurance: A Guide For Consumers And Their Families.” The Consumer Law Page. Available online. URL: http://consumerlawpage.com/article/ insure.shtml. Downloaded August 30, 2003.
M the funeral liturgy and join with the bereaved family in the celebration of the funeral rites by serving at the altar and, if needed, helping with the distribution of communion. Prior to the reformation of the Roman Catholic liturgy following the Second Vatican Council (1962–65), it was called the Requiem Mass. Among other changes, black vestments are no longer required; in their place, white or purple may be worn, and flowers are permitted.
managed care
Systems used to manage the use of health care services, including a review of medical necessity, incentives to use certain providers, and case management. Managed care has effectively formed a “go-between” brokerage or third party arrangement by existing as the gatekeeper between payers and providers and patients. Usually a reference to a managed care organization is referring to the entity (such as health maintenance organization or HMO) that manages the risk, contracts with providers, is paid by employers or patient groups, or handles claims processing. Each managed care plan is different. Some require health care to be provided at specific locations or by particular doctors, and if it is not, they may not pay as many benefits.
maternal mortality At the beginning of the 20th century, for every 1,000 live births, six to nine women in the United States died of pregnancyrelated complications. From 1900 through 1997, the maternal mortality rate declined almost 99 percent to less than 0.1 reported death per 1,000 live births (7.7 deaths per 100,000 live births in 1997). Significant disparities between black and white mothers exist in regard to maternal mortality. Black women face a higher risk of maternal mortality, regardless of the level of prenatal care received during their pregnancy. In 1998, black mothers were four times as likely to die from pregnancy complications as white mothers; the mortality rate due to pregnancy complications for black mothers was also more than three times the rate for Hispanic mothers. Between 1993 and 1997, maternal mortality rates for American Indian/Alaska Native, Hispanic, and Asian and Pacific Islander mothers were higher than the rates for non-Hispanic white mothers, although lower than the rates for non-Hispanic black mothers. The rates were: among American Indians/Alaska Natives, 12 maternal deaths per 100,000 live births; among Asian/Pacific Islanders, 11 deaths per 100,000 births; and among Hispanics, 10 deaths per 100,000 births. There were slightly more than seven deaths per 100,000 live births
man-made death Term used for preventable deaths of large numbers, such as death from war or political violence. Some researchers call for man-made death to be monitored, nation by nation, to expose to public view national responsibility for a major loss of human life and thereby encourage its reduction. markers
See GRAVE MARKER; GRAVESTONE.
Mass of Christian Burial
Also called Funeral Mass or Mass for the Dead. Roman Catholics celebrate the Mass at the time of death as an expression of their faith in God’s abundant mercy and in Jesus Christ, and their hope in the resurrection of the dead. Family members may choose the Scripture reading for the Mass, cover the casket with the PALL, place Christian symbols on the casket (crucifix, Bible), and present the bread and wine at the preparation rite. Members of the parish community also participate in
171
172 mausoleum among white mothers, but almost 30 deaths per 100,000 live births to black mothers. When examined by nativity, foreign-born Asian and Pacific Islander and Hispanic mothers have pregnancyrelated mortality rates higher than their U.S.-born counterparts. Foreign-born Latino mothers were 50 percent more likely to die of pregnancy complications—nearly 12 per 100,000 versus a death rate of eight per 100,000 for U.S.-born Hispanic women. Foreign-born Asian and Pacific Islander mothers, however, have maternal mortality rates that are twice as high as the rates for U.S.-born Asian and Pacific Islander mothers.
mausoleum A large, freestanding, and aboveground burial chamber. The name mausoleum comes from a large temple-like structure built as a final resting place for King Mausolus of Caria, in Asia Minor, by his wife Artemisia following his death in 353 B.C.E. Located in the ancient city of Halicarnassus, his mausoleum is now regarded as the fifth of the Seven Wonders of the Ancient World. The pyramids of Egypt and the Taj Mahal in India are other examples of ancient mausoleums. Prior to that time most people were buried in the ground and soon forgotten, with a few being cremated and their remains left unmarked. Except for those rulers who had reached godlike status, people gave little thought to memorializing the dead. But the idea of a mausoleum caught on with royalty, who were the only ones with the land and the wealth to erect mausoleums. Then Queen Victoria, while mourning her beloved Albert, made cemeteries and memorialization fashionable, hastening the evolution of modern mausoleums. Keister writes, “Most importantly (for the establishment of the community mausoleum) were the folks in Spain who figured out a way to make above ground burial affordable to the masses. Examples of their tidy invention, wall vaults (also known as oven vaults and side vaults), may be seen in the cemeteries of New Orleans. Society tombs expand the idea of wall vaults. These tombs, composed of multiple crypts, were built by fraternal organizations, such as the Elks or other ‘protective and benevolent associations.’” A community mausoleum is a large building designed to provide above-ground entombment for a large number of people. Sharing the costs of the
mausoleum with other individuals makes it more affordable than a private mausoleum. Crypts are designed to hold casketed remains. Following a casket entombment, the crypt is sealed, and a granite or marble front is attached. Niches will accommodate urns containing cremated remains. Following an urn entombment, a niche front of granite, marble, bronze, wood, or glass is attached. With the growing shortage of available land for cemetery use, mausoleums are becoming more utilized because they allow for a maximum number of entombments in a minimum amount of space. In most cases, the cost of community mausoleum entombment is comparable to the costs of interment in a lot with an upright monument. Keister, Douglas. “A Brief History of the Community Mausoleum.” Cemetery Junction. Available online. URL: http://www.daddezio.com/cemetery/articles/ mausoleum.html. Posted April 5, 1999.
Medicaid
Government sponsored health- and long-term care insurance for those who do not qualify for MEDICARE, or who cannot afford to pay costs that are only partially covered by Medicare insurance. Medicaid is a major source of financing for end-of-life care, covering long-term care costs in nursing homes and at home, plus HOSPICE care, whereas Medicare does so only in exceptional circumstances and for a limited number of days. Individuals who exhaust their income and property resources while personally paying for long-term care become eligible for Medicaid. As The Wall Street Journal has reported, for years, thousands of middleclass and even affluent retirees—terrified that longterm and end-of-life health care costs could wipe out their savings—have transferred their assets to relatives in order to qualify for Medicaid. But with Medicaid having become the largest cost item on some states’ budgets, and with states facing their worst financial crises in decades, more and more states are initiating legislation that would make it harder for residents to shelter assets, plus are being more aggressive in recouping some of the money after an individual dies. For example, a new law in 2003 allows Massachusetts to recoup Medicaid money by selling the jointly owned homes of elderly recipients after they die, which critics complain
Medicare 173 could make it harder for elderly parents to pass their homes on to their children. Prior to this new law, the marital home had been treated as off-limits to creditors or governments. A second measure allows the state to also tap decedents’ life insurance policies to recoup Medicare costs. Medicaid eligibility criteria and benefits vary from state to state. Medicaid does not cover PALLIATIVE CARE as a separate benefit. Palliative care is available under the hospice benefit but only for beneficiaries who have a prognosis of death within six months and who agree to give up “curative treatment” for their terminal condition. Higgins, Michelle. “Getting Poor on Purpose.” The Wall Street Journal, February 25, 2003. Tilly, Jane, and Joshua Wiener. “Medicaid and End-ofLife Care.” Washington, D.C.: The Urban Institute. Available online. URL: http://www.lastacts.org/files/ publications/medicaid.pdf. Downloaded July 16, 2004.
medical care at the end of life
See ADVANCE CARE
PLANNING.
medical examiner A pathologist who has special training in death investigation and legal autopsies, who works for the government. A small city or rural area may not have a medical examiner, and may rely solely on a CORONER. In some states or small towns, the local doctor also functions as a medical examiner or coroner. Each state sets its own laws regarding medical examiners; for example, medical examiners in Virginia must investigate the following deaths: death by trauma or injury, by violence or poisoning, by accident, by suicide, by homicide, sudden death when the decedent was in apparent good health, sudden death as an apparent result of fire, and death unattended by a physician; death in jail, prison, any correctional facility, police custody; alleged SUDDEN INFANT DEATH SYNDROME (SIDS) of a child under 18 months; and any suspicious, unusual, or unnatural manner of death.
medical futility
Medical futility refers to interventions that are unlikely to provide any real improvement in the patient’s overall condition, prognosis, or
comfort level. Physicians may refuse to order procedures that are deemed to be medically futile, even though the patient or family may request the procedures. Whether or not to proceed with “futile” treatment often becomes an ethics decision to be decided case by case. Some health care providers feel that treatment of terminally ill patients may be considered futile if the likelihood of success is 20 percent or below. Most health care providers feel that treatment should be given only for the benefit of the patient and not for benefit of the family or health care practitioner, or based on cost. The patient’s culture and religion sometimes play a role in determining whether to initiate or continue with any given treatment that may be considered futile. Historically, the patients’ rights movement has focused on the right of an individual to refuse unwanted medical treatment. Recently, debates about medical futility, treatment rationing, and managed care have caused patients’ rights advocates to examine the flip side of patient autonomy— the right to request treatment. There are some ethicists and health care professionals who believe patient autonomy has gone too far and should be limited. According to these professionals, people should not have the right to request treatment that is inappropriate or futile.
medical intervention
A diagnostic or treatment activity undertaken for the primary purpose of preventing, improving, or stabilizing a medical condition. Activities that are primarily custodial, or part of normal existence, or undertaken primarily for the convenience of the patient, family or practitioner, are not considered medical interventions.
medical power of attorney A legal document that allows an individual to choose a person or persons to be his or her proxy for medical decisions when he or she becomes incapacitated. See also HEALTH CARE PROXY.
Medicare A federal health insurance program administered by the Centers for Medicare & Medicaid Services (CMS), formerly known as Health Care Financing Agency, or HCFA, for people 65 years or
174 Medicare + Choice older, certain people with disabilities under 65 years of age, and people with end-stage renal disease (permanent kidney failure requiring dialysis or a transplant)—the nation’s largest payer of care for the elderly. Medicare has two parts: Part A, which is hospital insurance, and Part B, which is medical insurance. End-of-life costs account for 27 percent of Medicare expenditures. According to the National Center for Policy Analysis (NCPA), Medicare averages the spending of $28,616 on medical bills for seniors in their last two years of life. Currently, Medicare pays only for hospice care when a person has six months or less to live. The Medicare Hospice Benefit, originally enacted by Congress in 1982, has enabled more than 6 million Americans to receive high-quality end-of-life care through 2003. In 2002, national experts in end-of-life care called unanimously for a major overhaul of Medicare’s payment structure for dying Americans. They pointed out that Medicare spends an immense amount of money on expensive, painful, and futile life-prolonging care, while spending little for pain relief, quality of remaining life, and emotional support for patients and their families. They also noted that new evidence from some small-scale model programs suggests that Medicare can deliver much better care for dying Americans while not raising program costs. And, finally, they called for the federal government to launch large-scale demonstration programs within Medicare to determine whether findings from the smaller-scale studies hold up when applied to the general population. On December 8, President George W. Bush signed the Medicare Prescription Drug, Improvement and Modernization Act of 2003 into law. Although much debate surrounded this complex and extensive legislative reform, particularly related to prescription drug coverage, the National Hospice and Palliative Care Organization pointed out that the Medicare Hospice Benefit remained intact and was not altered. Additionally, new provisions are included that will improve access to hospice. Designed to provide comprehensive coverage to Medicare recipients who are terminally ill, the Medicare Hospice Benefit will continue to be treated as a “carve out” for all Medicare programs, including the new Medicare Advantage program. This will assure all Medicare beneficiaries access to high-
quality hospice care regardless of which Medicare program they select. Additional provisions to further strengthen the services hospices provide to dying Americans and their families include: Contracting Provisions, Section 946 Medicarecertified hospices will be allowed to contract with other Medicare-certified hospices for core services. This will help hospices provide core services when faced with situations such as more patients than anticipated staffing shortages. The contracting proposal will help hospices provide coverage for traveling patients. This became effective upon enactment. Nurse Practitioners, Section 408 Nurse practitioners, not employed by a hospice, will be allowed to continue following their patients who elect hospice care. This became effective upon enactment. Hospice Educational Consultation, Section 512 Effective January 1, 2005, this allows for a onetime hospice consultation service for terminally ill Medicare beneficiaries. The service, which must be provided by a physician who is either the hospice medical director or an employee of a hospice program, would involve an evaluation of the individual’s pain and symptom management needs, counseling regarding end-of-life issues and options for obtaining care, and advising the individual regarding advance care planning. A Rural Hospice Demonstration Project, Section 409 A CMS-developed project would establish three rural demonstration sites that would provide hospice care in residential facilities of 20 beds or less for beneficiaries who are unable to receive hospice care in their home. The demonstration sites would provide care inside the facility and not in the community. This demonstration project would be conducted over a period of not more than five years.
Medicare + Choice
Medicare health plans offered by private companies that contract with the MEDICARE program. Such plans may provide benefits like coordination of care or reduction of out-ofpocket expenses. Some plans may offer additional
memorial service 175 benefits, such as prescription drugs. There are two types of Medicare + Choice plans available in many parts of the country. To find a list of plans available in any area, look at the Medicare Personal Plan Finder at http://www.medicare.gov. In 2003, health insurers who provide Medicare + Choice plans announced that they would drop about 40,000 elderly and disabled members during 2004 because government funding had not kept pace with rising health care costs.
Medigap insurance Also known as Medicare supplement insurance; private health insurance policies that cover some of the costs not covered by the original MEDICARE plan. Medigap has 10 standard plans called Plan “A” through Plan “J,” each with a different set of benefits. Medigap policies vary by state.
memento mori Memorial Day
See SYMBOLS OF DEATH.
On May 5, 1868, Maj. Gen. John A. Logan, head of an organization of Union veterans—the Grand Army of the Republic—established Decoration Day as a time for the nation to decorate the graves of the war dead with flowers and declared that it should be observed on May 30, a date when flowers would be in bloom across the country. The first large observance was held that year at ARLINGTON NATIONAL CEMETERY. Prior to this, local springtime tributes to the Civil War dead had already been held in various places. Approximately 25 towns have claimed connection with the origin of Memorial Day, many of them in the South where most of the war dead were buried. In 1966, Congress and President Lyndon Johnson declared Waterloo, New York, the birthplace of Memorial Day. There, a ceremony on May 5, 1866, honored local veterans who had fought in the Civil War. Businesses closed and residents flew flags at half-staff. By the end of the 19th century, Memorial Day ceremonies were being held on May 30 throughout the nation. State legislatures passed proclamations designating the day. The army and navy adopted regulations for proper observance at their facilities. It was not until after World War I, however, that the
day was expanded to honor those who have died in all American wars. In 1971 Memorial Day was declared a national holiday by an act of Congress, though it is still often called Decoration Day. It was then placed on the last Monday in May. Many southern states also have their own days for honoring the Confederate dead.
memorials
In the traditional sense, memorials are objects or structures established in memory of a person or event. Traditional forms of war memorials include statues, obelisks, triumphal arches, and other commemorative structures, whose sole purpose is to serve as a memorial. Since World War II, such structures have increasingly been giving way to “living memorials”—useful projects such as community centers, libraries, forests, and even highways marked in some fashion, usually with plaques, as memorials. Impromptu memorials set up by strangers to remember people who die as a result of tragedy are a recent phenomenon and growing trend. Montgomery writes that these are “physical and public expressions of a community’s grief, whether the community is a neighborhood or a nation. They’re most often built with flowers, photographs, and candles. Some people have left balloons, greeting cards and notes.” Psychologists consider this public expression of grief to be a meaningful way of responding to tragedy. Such spontaneous memorials are powerful because they have the “spontaneity of raw, pure emotion,” according to Maya Lin, who designed the Vietnam Veterans Memorial.
Newsweek. “The Art of Honoring the Dead.” Available online. URL: http://msnbc.msn.com/id/3068030. Posted 2002. Montgomery, Christine. “Impromptu Memorials Salve Communal Grief: On-site Tributes the Trend as Pain, Tragedy Hit Home.” The Washington Times, August 5, 1997.
memorial service A ceremony commemorating the deceased, without the body present. Whereas funerals center on the death and loss of a person, memorial services emphasize the individual’s life. Memorial services are commonly held by the family following BODY DONATION or tragedies where body
176 memorial society retrieval is not possible. Also, memorial services are sometimes held on anniversaries of deaths. Some families prefer a private church or graveside service for immediate family, with a memorial service to celebrate the life of the deceased held later at a church or other public place that will accommodate a wider circle of friends and colleagues. In many religions, a memorial service is held following cremation or at specified times following death. During memorial services, the deceased is usually honored through a celebration of his or her accomplishments, often with specially selected poetry or music reflecting something of the person’s life or interests. Today, many view a memorial service after cremation or quick burial as preferable to the standard funeral. Instead of having to deal with the myriad details of a larger funeral, the immediate family can instead concentrate on the more pressing needs of body disposition and family decisions. Later—perhaps a week or even longer—friends, co-workers, and out-of-town relatives can gather for a memorial service that serves many of the same functions of a funeral, but relatively free of the time pressures of the funeral. A memorial service can be held without the funeral director—in a church, in the home, in a park—often at a place of significance to the deceased. A memorial service generally involves less expense than a funeral, and can be held in a greater variety of locations. Funeral Consumers Alliance. “Planning a Memorial Service.” Available online. URL: http://www.funerals.org/ personal/memorial.htm. Downloaded September 16, 2003.
memorial society A nonprofit, co-op membership organization that provides information about funerals and body disposition, but is not part of the state-regulated funeral industry, thus does not offer funeral services itself. Most often a memorial society is formed by a church or ministerial association, by labor, civic, or educational groups, or by concerned individuals. Although some funeral homes may include the word “society” in their names, they are not nonprofit organizations. Memorial societies are run by volunteers who conduct local price surveys and negotiate discounts
with cooperating funeral homes to arrange set prices for members. They also make referrals to businesses offering price breaks on options such as viewings, memorial services, scattering of ashes, flowers, monuments, and cemetery plots. Traditionally, memorial society members have preferred cremation, but some now offer a choice of a simple, traditional funeral in place of cremation. Most memorial societies prefer people to join in advance, but some accept enrollment of a deceased person by family members after a death has occurred. As many as 200 of these societies exist in the United States and Canada (the numbers fluctuate because they are volunteer run). Most charge a one-time low membership fee. Memorial societies originally organized as the Continental Association of Funeral and Memorial Societies, later became the Funeral and Memorial Societies of America; currently, FUNERAL CONSUMERS ALLIANCE is the umbrella organization. According to Consumers’ Research Magazine, “These societies cooperate with funeral directors, sometimes by having actual contracts with them and sometimes by advising their members of some firms that provide inexpensive services. The societies can also assist in making arrangements for donations and can offer information on legal requirements and death benefits. They do not arrange or direct funerals, pay for funerals, or choose a specific funeral director for you.” Memorial societies have been at the center of efforts to assure consumer protection through both the Federal Trade Commission and state legislatures. Funeral Consumers Alliance maintains a listing of member memorial societies searchable by state at http://www.funerals.org/directry.htm. Castaneda, Laura. “Cutting the Cost of Funerals: Planning Saves Money and Stress.” The San Francisco Chronicle, January 13, 1997. The Center for the Study of Services. “How to Cut Funeral Costs.” Consumers’ Research Magazine 78, August 1, 1995: 24–27.
men and grief
Grief can be particularly difficult for men who have been taught since childhood to be strong, not to cry, and not to exhibit emotions lest they look like sissies. Because they tend to bot-
Middle Ages and death 177 tle up their feelings, men have been called the silent grievers. In her book, What to Do When a Loved One Dies, Eva Shaw writes, “Because the grief is, at times, suppressed, it is never ‘processed’ and resolved. Some men grieve their entire lives.” Such unresolved grief has been suggested as one reason for the higher death rate among widowers from suicide, accidents, strokes, and heart disease than among married men of the same ages. Both the inability to express emotion and a reluctance to seek support inhibit men’s grief. The AARP Grief and Loss Programs cautions, “Grieving men who bottle up their feelings may appear to others to be adjusting well. Instead, they could be suffering alone, unable or unwilling to seek the support of friends, family, or community groups.” Grief experts explain that how men grieve is significantly linked to their expected role in society. Despite many changes in our society, it is still part of a man’s role to do nearly all of the dangerous, unhealthy, and life-threatening work. For example, 95 percent of deaths and permanent disabilities from workplace injuries are male, according to the Novant Health Employee Assistance Program. Men are generally still expected to protect their wives, children, and the community, which expectation often inhibits any outward showing of grief. Novant suggests the following ways in which grieving men can help themselves: • By showing courage in allowing themselves to experience the painful emotions of grief (rather than pushing them underground) • By communicating clearly to others their need to be alone and to deal with their feelings in private • By not shutting others out, but keeping communication open in their relationships • By tuning in to their bodies (because feelings that have built up can often be discovered there and released into experience) • By consciously using rituals and activity through which to express and work with their grief • By slowing down and making time for being reflective and to connect with their grief (making time to grieve in order for there to be time to heal) • By staying close to reliable friends and talking to them
• By making time to garden or be out in the natural environment • By keeping up good health through moderate exercise, good food, and plenty of sleep, and not consuming too much alcohol Shaw adds that traditionally men have thrown themselves into their jobs following loss of loved ones, and, not having resolved their grief, often show aggression while driving or working with tools and have little patience with coworkers or customers. Family, friends, and coworkers may withdraw when these men are “too busy” or “always so darned crabby,” yet their very busy-ness and crabbiness may be a crying out for help. AARP Grief and Loss Programs. “Men and Grief.” Available online. URL: http://www.aarp.org/griefandloss/ men.html. Posted 2001. Golden, Thomas R. Swallowed by a Snake: The Gift of the Masculine Side of Healing, Second Edition. Gaithersburg, Md.: Golden Healing Publishing, 2000. Novant Health. “Understanding Grief.” Available online. URL: http://www.novanthealth.org/eap/daily_issues/ grief_loss.jsp. Downloaded September 18, 2003.
mercy killing
Often confused with ASSISTED SUImercy killing is the unrequested taking of another’s life in order to save that person further suffering, according to Evans and Farberow. “Mercy killing is usually an act of desperation and despair, and often the life-taker is on the verge of emotional collapse from the stress that comes from caring for and watching over a loved one who is terminally ill. Pushed to such limits, the life-taker at some point feels compelled to hasten death—by whatever means—because no one else will.” See also EUTHANASIA.
CIDE,
Evans, Glen, Norman L. Farberow, and Kennedy Associates. “assisted suicide,” in The Encyclopedia of Suicide, Second Edition. New York: Facts On File, 2003.
Middle Ages and death
The Middle Ages covered the period in European history that followed the fall of the Western Roman Empire (C.E. 476–600) and
178 midwifing a death lasted into the 15th century or the beginning of the Italian Renaissance (historians variously place the end of the Middle Ages somewhere between 1453 and 1500). Anxiety about death reached a peak in the Middle Ages, stimulated by numerous plagues, epidemics, wars, and the short life spans of this period. During the Middle Ages, death and dying were more visible in the Western world than they are today. Aiken notes that “publicly viewed executions, mortal skirmishes involving ordinary people, and mass epidemics that claimed the lives of thousands were common occurrences. No one knew when death might strike or even if it might happen before the day was over.” Because people of the Middle Ages were so intimately connected with death, they tended to see it as a natural course and conclusion of their life on this Earth. Great importance was placed on a man’s knowing that he was about to die. Through outer signs or through intuitive inner knowing, the man became aware of his impending death and followed prescribed ritual and behavior. Golden writes, “Men (and women) had a sizable fear of sudden and unexpected death because it would rob them of the experience of their final ritual. There was a sense of pride that men had in being able to anticipate the time of their death. This was made somewhat easier by the lack of ‘good’ medical care. Most major illnesses were fatal, and thus when someone became severely ill it usually meant that they were dying. This made it somewhat easier to predict with some accuracy the time of approaching death.” People frequently organized final rituals in their own bedrooms. Aiken explains, “These rituals were attended by family members, physicians, priests, and perhaps legal representatives clustered around the bedside of the dying person. During these rituals, which could last for days, grief was expressed, and personal, religious, and legal matters were discussed. This encouraged dying persons to put their worldly affairs in order so they could then die in peace with the knowledge that their last wishes would be honored.” During the late Middle Ages, the church became the unifying institution, leading to a tremendous boom in religious discussion of death and the afterlife. Also in the late Middle Ages, the human skeleton or a decayed corpse was used to personify death.
Aiken, Lewis R. Dying, Death and Bereavement. Mahwah, N.J.: Lawrence Erlbaum Associates, 2001. Aries, Phillippe. Western Attitudes toward Death: From the Middle Ages to the Present. London: Marion Boyars Publishers Ltd., 1994. DuBruck, Edelgard E., and Barbara I. Gusick, editors. Death and Dying in the Middle Ages. New York: Peter Lang Publishing, 1999. Golden, Thomas R. Swallowed by a Snake: The Gift of the Masculine Side of Healing, Second Edition. Gaithersburg, Md.: Golden Healing Publishing, 2000.
midwifing a death
The process of guiding a person through the dying process, utilizing massage, touch, reminiscences, and other soothing techniques. It is a term frequently used by people who prefer to have their loved ones die at home rather than in hospitals, where they feel they can better guide or “midwife” them through the passage to the next life. According to Mortuary Management (May 2000), San Francisco now has its own “Zen hospice,” which trains “professional death companions,” with its graduates called “midwives for death.” In another context, “midwifing through the dying process” has also been used as a euphemism for PHYSICIAN-ASSISTED SUICIDE.
military deaths Although military service is inherently stressful and at times dangerous, mortality rates among active duty military personnel are significantly lower than those in the general U.S. population, according to a 10-year National Center for Health Statistics (NCHS) study. A Medical Surveillance Monthly Report notes that such a finding is not surprising because servicemembers are selected for military service based on their past medical histories and their health at the time of military induction. In addition, all servicemembers have free medical care—both preventive and curative—included as part of their benefits package. Also, those who develop life threatening medical conditions are likely to be discharged from active service prior to their deaths (e.g., through medical disability retirement). The NCHS study found that from 1992 through 2001, 8,570 servicemembers died while on active duty (overall mortality rate: 57.38 per 100,000 ser-
miscarriage 179 vicemembers per year). Of the military services, the air force had the lowest overall mortality rate (42.89 per 100,000 per year) and the marines had the highest (71.89 per 100,000 per year). During the surveillance period, mortality rates generally declined. The decline of mortality rates overall was largely attributable to declines in each of the services in accident-related deaths. More than half (53 percent) of all active duty deaths were attributable to accidents, and more than one-fourth of all deaths resulted from intentional acts (suicide, 20 percent; homicide, 6 percent; hostile action and terrorism, 1 percent). Illnesses (18 percent) and undetermined/pending circumstances accounted for the remainder. Certain burial benefits or payments for survivors are provided whether the in-service death is due to combat, accident, or disease. The serviceperson’s immediate family qualifies for a $6,000 cash “death gratuity” to meet the immediate needs of the survivors. The government will reimburse a family $6,900 for burial costs. A spouse and children qualify for what’s called dependency and indemnity compensation. A spouse receives a tax-free flat-rate annuity for life of $948 a month and dependent children receive $237 per month, plus proceeds from any applicable life insurance, which most military members carry at the highest level ($250,000). Some benefits change or end if a surviving spouse remarries. Burial benefits include a gravesite in any VA national cemetery with available space, the opening and closing of the grave, perpetual care of the grave at no cost to the family, a government headstone or marker, a burial flag, and a Presidential Memorial Certificate. See also VETERANS BURIAL BENEFITS. Wilson, Abigail Garvey, and Marsha Lopez. “Mortality Trends among Active Duty Personnel, 1992–2001.” MSMR: Medical Surveillance Monthly Report 9, no. 1 (January 2003): 6–11.
military funeral honors The Department of Defense (DoD) provides military funeral honors at the burials of veterans. When requested, funeral honors can be given at any cemetery—private or government-operated. Most funeral directors make
those arrangements with DoD on behalf of family members. Although military funeral honors are a longstanding tradition, it was not until 1999 that the rights of veterans and the responsibilities of the federal government were written into law. That law, which took effect January 1, 2000, was the National Defense Act of 2000 (Public Law 106–65). Under this new law, at a family’s request, every eligible veteran will receive military funeral honors, to include the presence of a military funeral honors detail, which will oversee folding and presenting the U.S. flag and playing TAPS, either by a high-quality recording or by a bugler. The law defines a military funeral honors detail as consisting of two or more uniformed military persons, with at least one being a member of the veteran’s branch of military service. DoD provides an information kit to funeral directors to help them make arrangements. The same procedure for requesting military honors is followed when burial is at a national cemetery. The Department of Veterans Affairs (VA) staff at national cemeteries will help, when necessary, to facilitate a request to DoD for funeral honors at VA national cemeteries. Veterans organizations may provide military funeral honors or may assist the military members rendering the honors. A few VA national cemeteries are served by veterans groups that regularly provide funeral honors. The military funeral custom of firing three rifle volleys has been said to have its roots in superstition—to frighten evil spirits away from the grave. Another reason that’s been given is that it’s a recreation of the act of firing three volleys to signal the end of a temporary truce called to allow each side to clear its dead and wounded from the battlefield. See also VETERANS BURIAL BENEFITS.
miscarriage
The interruption or loss of any pregnancy before the fetus is viable (capable of living). In common usage, however, a spontaneous or natural abortion is usually called a miscarriage, and the term ABORTION is reserved for induced or elective abortion, that is, the intentional termination of a pregnancy. Ammer, Christine. “abortion,” in The New A to Z of Women’s Health, Fourth Edition. New York: Facts On File, 2000.
180 Mitford, Jessica Mitford, Jessica (1917–1996)
A political rebel and later journalistic muckraker who changed the funeral industry. The daughter of the Second Baron Redesdale, Mitford was born in Burford, Oxfordshire, England, in 1917. In 1939, she and her first husband, Esmond Romilly, a nephew of Winston Churchill, immigrated to the United States. After the outbreak of World War II, Romilly joined the Canadian Air Force and was killed during a bombing raid. In 1943, Mitford married the radical lawyer Robert Treuhaft, and they moved in 1948 to Oakland, California. As a trade union lawyer in Oakland, Treuhaft became aware of the financial problems that deaths caused in working class families. In an attempt to reduce the high costs of funerals, he established the Bay Area Funeral Society, a nonprofit undertaking service. In 1963 Treuhaft and Mitford wrote together the best-selling book, The American Way of Death (1963). However, only Mitford’s name appeared on the book cover as the publisher argued that “co-signed books never sell as well as those with one author.” In The American Way of Death, Mitford exposed the avarice and commercialism of the American funeral industry at that time, demonstrating that death practices in the United States were among the most costly and elaborate in the world, and that funeral expenses had been rising faster than the general cost of living. Although bitterly denounced by the industry itself, the book was Mitford’s most successful—partially because of the irony and wit she employed to show in minute detail the many unnecessary services the bereaved were sold at a time of their greatest vulnerability, such as “practical” shoes for the corpse. Even though the funeral industry attacked her ideas and her political history in an attempt to discredit her in their fight against what they called the “Mitford syndrome,” the book remained atop The New York Times best-seller list for several months. Spurred by the public outcry because of Mitford’s exposé, the funeral industry did begin to reform its sales practices, and eventually the Federal Trade Commission set up the FUNERAL RULE. At the time of her death, Mitford had nearly finished a complete revision of her long out-of-print book with the intent of showing that, far from being reformed, the industry had become more
pernicious than ever in its assault on American values and wallets. The American Way of Death Revisited (Random House, 1998) was published 35 years after the original edition and contained new chapters on, among other things, prepayment (“Pay Now—Die Poorer”) and the new multinational corporations (“A Global Village of the Dead”), as well as a jaundiced look at the failure of the Federal Trade Commission to enforce the laws that the original edition of this book helped bring about.
molecular death The death of individual organs and tissues of the body after circulation ceases. Different tissues die at different rates depending on their oxygen requirements. Thus, within four minutes of the blood supply to the brain ceasing, the central nervous system is irreversibly damaged.
monument A tombstone or memorial of granite, marble, or other natural stone that stands upright above the surface of the ground. In related context, monuments have been defined as any structure, statue, tombstone, building, tablet, or sign erected to perpetuate or commemorate the memory of a person or persons, or an event. See also GRAVE MARKER; MEMORIALS.
morbidity
The number of cases of a particular disease occurring in a single year per specified population unit. It may be calculated on the basis of age groups, gender, occupation, or other population group. Data for nationally notifiable diseases reported to the Centers for Disease Control and Prevention by the 50 states, New York City, the District of Columbia, and the U.S. territories are collated and published weekly in the Morbidity and Mortality Weekly Report.
morgue A place to store bodies until they are identified, autopsied, or transferred to a funeral home for burial. Some hospitals and nursing homes have temporary morgues. In most states, the county maintains a morgue, which may include an autopsy
mourning cards 181 suite, a separate forensics autopsy suite, a freezer for long-term body storage, a refrigeration unit, and a special viewing room to allow police investigators, state’s attorneys, and medical personnel involved in a case under investigation to view the autopsy.
moribund
Medical term to describe a patient who is in a dying state; near death.
mortality statistics The ratio of deaths in an area to the population of that area; expressed per 1,000 per year. The Centers for Disease Control and Prevention (CDC) receives weekly mortality reports from 122 cities and metropolitan areas in the United States within two to three weeks from the date of death. These reports summarize the total number of deaths occurring in these cities/areas each week. Data are published weekly in Table IV of the Morbidity and Mortality Weekly Report. Knowing mortality rates for diseases and other causes is important because it helps set priorities for government-funded studies and legislative initiatives.
mortician
Another name for a FUNERAL DIRECTOR or UNDERTAKER. According to JESSICA MITFORD, writing in The American Way of Death Revisited (Knopf, 1998), mortician as a replacement for undertaker was first used in the trade journal Embalmers Monthly in its February 1895 issue, but was denounced in such newspapers as the Chicago Times, which refused to use it in 1932, “not for lack of sympathy with the ambition of undertakers to be well regarded, but because of it. If they haven’t the sense to save themselves from their own lexicographers, we shall not be guilty of abetting them in their folly.”
mortuary A building or room where dead bodies are kept before burial or cremation. Funeral homes are mortuaries.
mourners, hired or professional Throughout history, various cultures have used professional mourners to participate in funeral rituals in order to
emphasize the family’s grief and to augment the number of mourners. In Ancient Egypt, for example, the wealthy might hire professional mourners, who were usually women, to walk in the funeral procession—wailing, tearing at their hair, gnashing their teeth, chanting dirges, and generally representing the sorrow of the family. In Victorian England, professional mourners were called “mutes” and were hired to walk in the funeral procession, looking suitably melancholy.
mourning
The process by which people adapt to a loss; a display of GRIEF as defined by one’s culture and society. According to Doctor and Kahn, mourning practices may influence anxiety and even depression: “Mourning practices differ between cultures, and the process of grief influences the occurrence of depression. For example, in some societies, religion promises continued interaction with the deceased and the possibility of reparation for whatever wrong may have been done. However, acceptance of loss may be inhibited, if customary rites and beliefs lose significance in rapidly acculturating groups. Whether mourning leads to depression depends on the degree of ambivalence of the individual’s relationship to the lost person or object. Such relationships are affected by the interaction between parent and child, and particularly the relationship of the father to child in patriarchal, traditional societies, which differs from that in most Western cultures.” See also MOURNING RITUALS AND CUSTOMS. Doctor, Ronald M., and Ada P. Kahn. “cross-cultural influences on anxiety,” in The Encyclopedia of Phobias, Fears, and Anxieties, Second Edition. New York: Facts On File, 2000.
mourning cards Also called memorial cards, mourning cards were sent to family, friends, and neighbors during the Victorian era to invite them to the funeral; many were kept as remembrance keepsakes. According to Kerstens, a typical mourning card of the period was black with gilt (gold leaf) printing, and had a dove at the top holding a sign reading “In Loving Remembrance of.” In later years
182 mourning quilts of the period, a mourning card might have had a photo of the deceased attached. Because mourning cards included the deceased’s birth and death dates, historians and genealogists often use them to track down official copies of birth and death certificates and even obituaries. Kerstens writes, “Memorial cards, in their 4” × 6” cardstock format, went out of vogue in the early part of the twentieth century. They can still be found today at wakes, containing much the same types of information as their sturdier predecessors. However, modern memorial cards are smaller, are printed on paper, in color, and are sometimes laminated to be kept as a remembrance.” See also VICTORIAN MOURNING DRESS. Kerstens, Elizabeth Kelley. “Funeral Cards.” Ancestry Magazine 19, no. 5 (September/October 1999).
mourning quilts
See QUILTS.
mourning rituals and customs Rituals, such as funerals, wakes, and prayers, help people deal with the grief that comes with the death of a loved one. Michalopoulou and Michalopoulou explain, “Mourning rituals, which include emotional displays of grief and have a programmed mourning period, are said to limit excessive or pathological mourning. They provide a way for people to act and this restores a sense of order and continuity to their lives, which enables the bereaved to adjust to the fact of death.” Each culture, religion, and social group has ways in which individuals convey that they have experienced a loss. Different cultural customs, rituals, or rules for dealing with loss that are followed and influenced by one’s society are also a part of mourning. Yet Cowles, using six focus groups, each consisting of individuals from a specific culture, found that individual, intrapersonal experiences of grief are similar across cultural boundaries. “This is true even considering the culturally distinct mourning rituals, traditions, and behavioral expressions of grief experienced by the participants.” The National Cancer Institute notes that health care professionals need to understand the part that cultural mourning practices may play in an indi-
vidual’s overall grief experience if they are to provide culturally sensitive care to their patients. “In spite of legislation, health regulations, customs, and work rules that have greatly influenced how death is managed in the United States, bereavement practices vary in profound ways depending on one’s cultural background. When assessing an individual’s response to the death of a loved one, clinicians should identify and appreciate what is expected or required by the person’s culture. Failing to carry out expected rituals can lead to an experience of unresolved loss for family members. This is often a daunting task when health care professionals serve patients of many ethnicities.” Clements et al. note, “The cultural makeup of the United States continues to change rapidly, and as minority groups continue to grow, these groups’ beliefs and customs must be taken into account when examining death, grief, and bereavement.” Mourning rituals have existed throughout history, evolving into current day customs. Early cultural rituals included burial rituals to send the dead to their next home, vigils, face-painting, funeral pyres, fasting, and wailing. The wearing of black during a full mourning period is not as customary today as it once was; men in mourning used to wear black armbands and houses were draped in black crepe. In Victorian England, according to Jupp and Gittings, “Christian mourning rituals and the belief in family reunions in heaven helped to reconcile some parents to high infant and child mortality. Moreover, the solace of the private and social memory of the dead was complemented by visible symbols of remembrance such as paintings, photographs and death masks of the deceased, and mourning jewelry.” The Victorians’ strict and elaborate mourning rituals were enumerated in etiquette books, with each community dictating how long the mourning period would be, which varied according to the relationship of the mourner to the deceased. Victorian mourning rituals included covering mirrors, hanging black wreaths on doors to announce their mourning, and the sketching or painting of portraits of the corpses. See also VICTORIAN MOURNING DRESS. Clements, P. T., et al. “Cultural Perspectives of Death, Grief, and Bereavement.” Journal of Psychosocial Nursing and Mental Health Services 41, no. 7 (July 2003): 18–26.
music therapy for the dying 183 Cowles, K. V. “Cultural Perspectives of Grief: An Expanded Concept Analysis.” Journal of Advanced Nursing 23, no. 2 (1996): 287–294. Jupp, Peter C., and Clare Gittings, editors. Death in England— An Illustrated History. Manchester, England: Manchester University Press, 1999. Michalopoulou, A. M., and E. Michalopoulou. “Social Handling of Death.” ICUs and Nursing WEB Journal 12 (October–December 2002).
mummification
Preservation of the body by dehydration of the tissues. Mummification can occur naturally where the air is very dry, such as in a desert or inside a chimney. During the process, the body tissues dry and shrivel, hardening into a leathery, parchmentlike mass of skin and tendons surrounding the bone. During ideal conditions, the natural mummification process may take several weeks. Intentional mummification with the intent of keeping the corpse as intact as possible, is usually associated with the Ancient Egyptians, but similar preservation of the dead was also practiced by ancient Ethiopians, aboriginal inhabitants of the Canary Islands, and by Peruvians 1,000 years prior to being conquered by Spain. According to the Egyptian State Information Service, Ancient Egyptians first practiced mummification through natural means by laying the bodies in hot dry sands, which, with their sodium nitrates, slowed down the decomposition of the body. This natural preservation of the body eventually led to the development of mummification practiced by Egyptians of the dynastic period. However, mummification techniques did not fully develop until the Fifth Dynasty when an elaborate cult of the dead was in full sway. Today, modern mummification can be arranged through most funeral homes. Once the body is mummified, it can be placed in a standard casket or sealed inside a mummiform—a metal container, generally made of bronze, shaped like a body, with the face of the person whose body it holds, called also a “life mask.” Mummification costs from $1,700 (parrot) to $28,000 (large dog) for pets and about $67,000 for humans. Summum, a nonprofit 501 (c) (3) organization in Salt Lake City, Utah, is the only
organization in the world (according to their literature) offering mummification today, with arrangements made through local funeral homes.
music therapy for the dying
Therapy useful for managing symptoms of pain, anxiety, depression, and agitation, common in patients who know they are dying. As early as the sixth century B.C.E., Pythagoras, a Greek philosopher and mathematician (ca. 582–500 B.C.E.), recognized the healing value of music. Modern musical therapy began in earnest in the 1950s, although even after World War I, amateur and professional musicians visited veterans hospitals throughout the country, playing for thousands of veterans suffering both physical and emotional trauma from the wars. This continued after World War II as well. The first music therapy degree program was founded at Michigan State University in 1944. In 1998, the National Association for Music Therapy and the American Association for Music Therapy joined to create the American Music Therapy Association. Halstead and Roscoe explain, “Music is a useful therapeutic intervention that can improve quality of life for dying patients. Physiologic mechanisms in response to carefully chosen musical selections help to alleviate pain, anxiety, and nausea and induce sleep. Expression of feelings enhances mood. Music, a universal language, addresses individual and family needs, thereby assisting patients to achieve a peaceful death.” In fact, studies have shown that listening to music releases endorphins in the brain, which blunt the feeling of pain and affect emotions—promoting relaxation. According to James Schaller, writing in the American Pain Foundation’s newsletter, The Pain Community News, therapeutic music that reduces pain and anxiety includes the following characteristics: instrumental, acoustic instruments, simple texture, slow to medium tempo, unfamiliar, and limited dynamic range. This music should be played softly alone or with other pain reduction modalities. Krout adds that music therapy can also be used in the area of communication. “When loved ones are anticipating the patient’s impending death, they may find it difficult to express feelings, thoughts, and last wishes. Music therapy is a service modality
184 Muslims that can help to facilitate such communication between the family and the patient who is actively dying, while also providing a comforting presence.” Listening to favorite music can provide opportunity for the patient to reminisce and talk about his or her fears about death and dying. Practitioners of music thanatology provide musical comfort, using harp, voice, and a special repertoire of music, at the bedside of patients near the end of life, following a practice developed by Therese Schroeder-Sheker and the Chalice of Repose Project, based in Missoula, Montana. Musicthanatology practitioners study for two years before providing music vigils to help relieve the suffering of dying patients around the world. Anderson, J., et al. “Music to Be Born To, Music to Die To.” British Medical Journal 321, no. 7276 (December 23–30, 2000): 1577–1579. Casura, Lily G. “A Quick Look at Music, Medicine, Death & Dying.” Townsend Letter for Doctors and Patients, December 2002. Halstead, M. T., and S. T. Roscoe. “Restoring the Spirit at the End of Life: Music as an Intervention for Oncology Nurses.” Clinical Journal of Oncology Nursing 6, no. 6 (November–December 2002): 332–336. Iler, John. “Soothing the Soul and Healing the Body with Music.” Clinical Center News, National Institutes of Health, February 2003. Available online. URL: http:// www.cc.nih.gov/about/news/newsletter/2003/feb03/ index.html. Downloaded July 17, 2004. Krout, R. E. “Music Therapy with Imminently Dying Hospice Patients and Their Families: Facilitating Release near the Time of Death.” American Journal of Hospice & Palliative Care 20, no. 2 (March–April 2003): 129–134.
Muslims
According to Sheikh and Gatrad, most Muslims wish to die at home. Factors contributing
to this desire include concerns over difficulties in receiving appropriate pastoral care, problems with having relatives and friends present at the time of death, and the wish to avoid a postmortem examination. Irrespective of the place of death, almost all Muslims will wish for a prompt burial and any attempts by doctors and members of their teams to expedite the process of issuing a death certificate are usually greatly appreciated. See also ISLAM AND DEATH. Sheikh, A., and A. R. Gatrad, editors. Caring for Muslim Patients. Oxford, U.K.: Radcliffe, 2000.
mythology of death Stories created by various cultures that help people imagine what it will be like in the afterlife. Such stories are necessary, according to Collin Hughes, Washington State University, because there is no way for those who have passed away to provide answers to people’s questions about death. “The shade or ghost or phantom or spirit will, in many tales, wander around restlessly; mingle at times (in a kind of ethereal or psychological way) with the living.” Noting that the mythology of death begins as a “call to adventure,” Hughes explains, “The death of a loved one propels the hero into an unknown realm, incites the journey, and eventually may lead a hero to a terrifying confrontation. Heroes confront the ghosts of the past. The journey takes place for a reason; so as to liberate the hero from what haunts him or her. And in turn the hero is revitalized and thus can return to revitalize the community in which he or she lives.” Hughes, Collin. “Mythology of Death.” Washington State University. Available online. URL: http://www.wsu.edu/ ~hughesc/myth_of_death.html. Downloaded October 25, 2003.
N ever, the identities of nearly half of the Union soldiers buried in national cemeteries are unknown. Then in 1873, all honorably discharged veterans became eligible for burial in national cemeteries. New national cemeteries were established in the 1930s to serve veterans living in metropolitan areas such as New York, Baltimore, Minneapolis, San Diego, San Francisco, and San Antonio. In 1973, Congress transferred 82 national cemeteries from the Department of the Army to the Veterans Administration, now the U.S. Department of Veterans Affairs. Joining with 21 VA cemeteries located at hospitals and nursing homes, the National Cemetery System, now the National Cemetery Administration (NCA), comprised 103 cemeteries after the transfer. Today, the National Cemetery Administration is responsible for 120 national cemeteries in 39 states and Puerto Rico, as well as 33 soldiers’ lots and monument sites, comprising nearly 14,000 acres. (Arlington National Cemetery and Soldiers Home National Cemetery are administered by the Department of the Army.) These national cemeteries are listed by state on the VA Web site at http://www.cem.va.gov/ listcem.htm. More than 2.5 million Americans, including veterans of every war and conflict since the Revolutionary War are buried in the VA’s national cemeteries. Generally speaking, veterans and members of the armed forces, World War II Merchant Mariners, and spouses or unremarried surviving spouses and dependents of eligible persons are eligible for burial in a national cemetery. Eligibility for burial benefits can be obtained by calling a Veteran’s Benefits Counselor at (800) 827–1000. Burial benefits available include a gravesite in any of the national cemeteries with available space,
natal loss
Death of an infant through miscarriage, stillbirth, or immediately following birth. Jind explored the post-traumatic effects among 110 parents who had suffered natal loss. One to four weeks post-loss, approximately half of the parents reported that they were never or rarely concerned with attributing responsibility for their baby’s death. The importance of attributing responsibility was associated with several post-traumatic symptoms, as was searching for meaning in the death. Attributions to oneself, others, or God were positively and significantly associated with numerous post-traumatic symptoms. See also FETAL DEATH; INFANT DEATH; MISCARRIAGE; NEONATAL DEATH. Jind, L. “Parents’ Adjustment to Late Abortion, Stillbirth or Infant Death: The Role of Causal Attributions.” Scandinavian Journal of Psychology 44, no. 4 (September 2003): 383–394.
national cemeteries In the summer of 1862, when thousands had already died in only the second year of the Civil War, Congress enacted legislation authorizing the president to purchase “cemetery grounds” to be used as national cemeteries “for soldiers who shall have died in the service of the country.” Fourteen cemeteries were established that year. Soon after the war ended, army crews scoured the countryside to locate the remains of Union soldiers who died in battle. They were reinterred with honor in national cemeteries. By 1870, the remains of nearly 300,000 Union dead had been buried in 73 national cemeteries. Most were located in the Southeast, near the battlefields and campgrounds of the Civil War. Tragically, how-
185
186 National Funeral Directors Association opening and closing of the grave, perpetual care, a government headstone or marker, a burial flag, and a Presidential Memorial Certificate, at no cost to the family. Cremated remains are buried or inurned in national cemeteries in the same manner and with the same honors as casketed remains. However, national cemeteries are filling up across the country as veterans from World War II and the Korean War die at the rate of 1,800 a day. By fall 2003, half of the 120 national cemeteries were no longer open to new casket burials; 33 were closed to all new burials except for family members of veterans already buried there. Because of this, in October 2003, Congress authorized six new national cemeteries in Philadelphia; Birmingham, Ala.; Bakersfield, Calif.; Greenville/Columbia, S.C.; and in Jacksonville and Sarasota, Florida. Five others—in Atlanta, Detroit, Pittsburgh, West Palm Beach, and Sacramento—were scheduled to open by 2005. See also VETERANS BURIAL BENEFITS.
National Funeral Directors Association (NFDA) Founded in 1882, the National Funeral Directors Association is the oldest, largest, and most influential funeral trade association in the world. Its mission is to provide advocacy, education, information, products, programs, and services to help members enhance the quality of service to families—while growing successful businesses. As JESSICA MITFORD wrote in The American Way of Death Revisited, the NFDA “serves its affiliated state groups through bulletins, keeping watch on legislative developments, lobbying activities, advising member firms on methods of cost accounting, and other business procedures.” The FDA also monitors industry statistics, on which it reports more than 21,757 funeral homes in the United States, employing approximately 34,500 licensed funeral directors/ embalmers, and 69,000 additional funeral service and crematory personnel. Of the 2,404,000 deaths in the United States during 2000, approximately 75 percent resulted in earth burial or entombment and 25 percent resulted in cremation. The average cost of a funeral from NFDA’s 2001 General Price List survey was $5,180 for an adult funeral. For more information contact:
NFDA 13625 Bishop’s Drive Brookfield WI 53005 (800) 228–6332 (toll free) (262) 789–1880 (262) 789–6977 (fax)
[email protected] http://www.nfda.org
National Hospice and Palliative Care Organization (NHPCO) The National Hospice and Palliative Care Organization is the oldest and largest nonprofit membership organization representing almost 80 percent of America’s hospice and palliative care programs. NHPCO’s mission is to improve end-of-life care and expand access to hospice, thereby enhancing quality of life for dying Americans and their loved ones. In 2002, NHPCO estimated that more than 885,000 patients were served by the nation’s approximately 3,200 hospices. The National Hospice and Palliative Care Organization, founded in 1978 as the National Hospice Organization, changed its name in February 2000. With headquarters in Alexandria, Virginia, the organization advocates for the terminally ill and their families. It also develops public and professional educational programs and materials to enhance understanding and availability of hospice and palliative care; convenes frequent meetings and symposia on emerging issues; provides technical informational resources to its membership; conducts research; monitors congressional and regulatory activities; and works closely with other organizations that share an interest in end of life care. The NHPCO toll-free Help line—(800) 658–8898—provides free consumer information on hospice care and puts the public in direct contact with hospice programs. For more information contact: National Hospice & Palliative Care Organization 1700 Diagonal Road Suite 625 Alexandria, VA 22314 (703) 837–1500 (703) 837–1233 (fax)
[email protected] http://www.nhpco.org
natural disasters 187 Native American Grave Protection and Repatriation Act (NAGPRA) Enacted in 1990 by Con-
• Unassociated funerary objects: 77,587 (includes many small items, such as beads)
gress, NAGPRA legislation addresses the rights of Native American tribes to archaeological artifacts housed in museums, university collections, or within federal agencies. The legislation requires government agencies and universities to inventory any human remains and/or cultural objects that relate to recognized Native American tribes. The tribes then must be consulted regarding return or reburial of the objects. NAGPRA provides a process for the return of certain Native American cultural items—human remains, funerary objects, sacred objects, or objects of cultural patrimony—to lineal descendants, and culturally affiliated Indian tribes and Native Hawaiian organizations. The act also includes provisions for unclaimed and culturally unidentifiable Native American cultural items, intentional and inadvertent discovery of Native American cultural items on federal and tribal lands, and penalties for noncompliance and illegal trafficking. In addition, NAGPRA authorizes federal grants to Indian tribes, Native Hawaiian organizations, and museums to assist with the documentation and repatriation of Native American cultural items. Although museums and federal agencies are required to keep their own record of repatriations, NAGPRA does not require reporting of repatriations to the secretary of the interior or to the National Park Service. Museums and federal agencies are required, however, to publish notices in the Federal Register when they have determined that Native American human remains, funerary objects, sacred objects, and/or objects of cultural patrimony are culturally affiliated and are eligible for repatriation. The national NAGPRA program compiles statistics twice yearly on the total number of Native American human remains, funerary objects, sacred objects, and cultural objects for which Federal Register notices have been published. Statistics announced in 2003 of Native American human remains and cultural items repatriated since the passage of NAGPRA included
• Sacred objects: 1,185
• Human remains: 27,777 individuals • Associated funerary objects: 558,799 (includes many small items, such as beads)
• Objects of cultural patrimony: 267 • Objects that are both sacred and patrimonial: 644 However, in early 2004, less than one-fifth of the Smithsonian Museum of Natural History’s original collection of 18,000 remains had been returned, and another 90,833 sets of remains in America’s other museums lacked sufficient documentation to ensure their return in the foreseeable future. Not only does the repatriating of remains often take years of scientific study to determine their origins, but some Native American groups do not want the remains while others are involved in disputes over ownership among themselves. See also REBURIAL.
natural death
Pathologists refer to a death as “natural” when it results from a spontaneous or naturally occurring disease or degenerative process, as distinct from a death that results from accident or violence. Proponents of palliative care talk about ways to allow for a natural death as opposed to “resuscitating” or “providing feeding tubes” to keep a patient alive. Still others refer to a natural death as one where the death is orderly and peaceful, with no violence and no mess. Then “The Natural Death Centre,” a charitable project launched in Britain in 1991, supports those dying at home and their caregivers and helps people to arrange inexpensive, doit-yourself, and environmentally-friendly funerals.
natural disasters
According to World Disasters Report 2003, more natural disasters were reported in 2002 than in any year of the preceding decade. Fortunately, 2002’s disasters appeared less deadly than before—24,500 people were reported killed, compared to the decade’s average of 62,000 per year. These figures do not even include data on those killed or affected by war and conflict-related famine or disease. Disasters can be most devastating in the world’s poorest and least developed countries. Of those killed in 2002, just 6 percent
188 near death experiences lived in countries of high human development (HHD). While countries of low human development (LHD) reported the fewest natural disasters during the decade, their death toll is by far the highest. When related to the number of reported disasters, an average of 555 people died per disaster in LHD nations, compared to 133 in countries of medium human development and 18 people in HHD nations. Across the decade, famine remained by far the deadliest disaster, killing at least 275,000 people (nearly half of all reported fatalities). Comparing the decades 1983–92 and 1993–2002, reported global deaths from natural and technological disasters have fallen by 38 percent. Walter, Jonathan, editor. World Disasters Report 2003. Bloomfield, Conn.: Kumarian Press, 2003.
near death experiences (NDE)
Many people who have come close to death have reported having an “experience” or “happening” while they were outside of normal consciousness. A U.S. News and World Report poll found that of the 18 percent of Americans who claimed that they had been on the verge of dying, about one-third, or some 15 million, reported an NDE. White describes several of these reported near death experiences: “People say they traveled through a tunnel, saw a shining light and were overcome with a feeling of serenity, only to be snatched back to mortal life.” Others have described NDEs as leaving one’s body and hovering overhead while being aware of what’s going on below, or meeting deceased family members, or seeing one’s past life flash by. Roy and Russell note, “Individuals who have recovered after reaching a state of clinical death commonly report a pleasant psychological state of emotional warmth, being in the presence of loved ones, and sometimes seeing God or a godlike figure.” Indeed, some who have undergone such an experience have likened it to a religious experience, believing that it proves there is a life after death. Others, particularly those in the scientific community, believe these experiences can be explained by the chemical changes taking place in the brain at times of trauma or closeness to death.
Simpson writes, “The occurrence of near death experiences is not an innovative subject. Parallels have existed as early as the Bible and Plato’s Republic. The NDE was given further consideration in 1975 by Dr. Raymond Moody who initiated an interest from the general public and researchers alike, with his book Life after Life.” Simpson concludes that the number of people who have claimed to have an NDE is “phenomenal and overwhelming. In addition, the numbers of those who have experienced this phenomenon may be underestimated because of the persons’ feeling of insecurity in talking with others about their paranormal incident.” Therefore, she concludes, “It is vital that nurses become aware of the NDE and how to support the client who has had the experience.” Explaining that NDEs share some features with the phenomenon of dissociation, in which a person’s self-identity becomes detached from bodily sensation, Greyson explored the frequency of dissociative symptoms in people who had come close to death. “People who reported NDEs also reported significantly more dissociative symptoms than did the comparison group. Among those who reported NDEs, the depth of the experience was positively correlated with dissociative symptoms, although the level of symptoms was substantially lower than that of patients with pathological dissociative disorders. The pattern of dissociative symptoms reported by people who have had NDEs is consistent with a non-pathological dissociative response to stress, and not with a psychiatric disorder. A greater understanding of the mechanism of dissociation may shed further light on near-death and other mystical or transcendental experiences.” According to Bartholomew, recent medical advances that allow doctors to resuscitate people who previously would have been irretrievably dead have contributed to the increased reporting of NDEs. She notes that initially doctors dismissed such reports as “hallucination, brought on by changes in the dying brain.” However, she says, the paradox that these perceptions “occur during NDEs when there is no functioning brain through which to receive them”—such as when brain surgery patients have been brought to a “standstill”—has scientists “groping for answers.” Among the possibilities: Consciousness may not reside solely in the brain.
necrophobia 189 Bartholomew, Anita. “After Life: The Scientific Case for the Human Soul.” Reader’s Digest (August 2003): 122–128. Greyson, B. “Dissociation in People Who Have Near-Death Experiences: Out of Their Bodies or Out of Their Minds?” Lancet 355, no. 9202 (February 5, 2000): 460–463. Roy, F. Hampton, and Charles Russell. “Attitudes toward Death among the Elderly,” in The Encyclopedia of Aging and the Elderly. New York: Facts On File, 1992. Simpson, Suzanne M. “Near Death Experience: A Concept Analysis as Applied to Nursing.” Journal of Advanced Nursing 36, no. 4 (November 2001): 520–526. White, Gayle. “Living with Death.” The Atlanta Journal and Constitution, April 11, 1998.
nearing death awareness
Term coined by Callahan and Kelly, hospice nurses, in their now classic book, Final Gifts, to describe an altered state of consciousness entered by a dying person, in which the person drifts between both worlds. Most patients who have signs of nearing death awareness are more peaceful after the experience. According to the Hospice of the Florida Sun Coast, people who are experiencing signs of nearing death awareness may: • Appear confused and disoriented • State that they have spoken to those who have already died • Speak to people and see places not visible to you • Describe spiritual beings and bright lights • Talk aloud to people who have died before them, such as their mother, father, or close friend • Make “out of character” statements, gestures, or requests • Describe another world of peace and beauty • Tell you exactly when they will die • Make hand gestures, reach for or hold unseen objects, or wave to unseen beings Family witnessing these behaviors sometimes express concern that their loved one is confused or even hallucinating, but hospice caregivers believe the person is simply beginning to transition from this life. The person may be trying to describe the dying experience or something he or she needs to
do before dying. Among the ways hospice suggests that families can help the dying person ease through this transition are to: • Go along with the patient’s meanderings and thoughts rather than contradicting or putting down what he or she says. These experiences can be very comforting to the patient. • Be there. Simply sit with the person and be open to his or her attempts to communicate. • Listen attentively and sensitively and acknowledge the experiences. • Ask gentle questions about what your loved one is saying or doing, such as, “Who do you see?” “What are you seeing?” and “How does that make you feel?” • Allow the person to share this experience with you. Callahan, Maggie, and Patricia Kelly. Final Gifts; Understanding the Special Awareness Needs and Communications of the Dying. New York: Bantam, 1997 (reprint).
necrophilia An irresistible sexual attraction to or erotic interest in dead bodies. In their review of 122 cases with evidence of necrophilic acts or fantasies, Rosman and Resnick distinguish genuine necrophilia from pseudonecrophilia, and classify true necrophilia into three types: necrophilic homicide, “regular” necrophilia, and necrophilic fantasy. “Neither psychosis, mental retardation, nor sadism appears to be inherent in necrophilia. The most common motive for necrophilia is possession of an unresisting and unrejecting partner. Necrophiles often choose occupations that put them in contact with corpses. Some necrophiles who had occupational access to corpses committed homicide nevertheless.” Rosman, J. P., and P. J. Resnick. “Sexual Attraction to Corpses: A Psychiatric Review of Necrophilia.” The Bulletin of the American Academy of Psychiatry and the Law 17, no. 2 (1989): 153–163.
necrophobia
A persistent and irrational fear of dead bodies. According to Doctor and Kahn, “Individuals who fear looking at dead bodies (human or
190 neocortical death animal) may indirectly fear that they will also die or that there may be some ‘contagion.’ Some necrophobes may also be fearful of disease or injury. This fear extends to looking at cadavers and carcasses of animals. Fear of corpses may be related to a fear of death, and many individuals who fear viewing a corpse also fear going into a cemetery, looking at tombstones, or even attending a funeral.” Doctor, Ronald M., and Ada P. Kahn. The Encyclopedia of Phobias, Fears, and Anxieties, Second Edition. New York: Facts On File, 2000.
neocortical death
A form of brain death resulting in the loss of all of the mental functions that make us fully human beings; a person can be kept in a vegetative state indefinitely after this has occurred.
Volti, Rudi. “brain death,” in The Facts On File Encyclopedia of Science, Technology, and Society. New York: Facts On File, 1999.
neonatal death Death of a live-born infant within the first 28 days of life. Previous generations were more accustomed to infant and neo-natal deaths, when half or more of newborns might die. Women born in the first quarter of the 20th century considered it unlucky to buy baby clothes or furnish nurseries until a baby was born and established as healthy. This was not merely a superstition, but also a psychological defense against the disappointment and grief of losing a newborn, compounded by the visual evidence of the hoped-for child right there in the home. The success of neonatal care over the past 20 years has diminished most of these apprehensions. In 1983, the U.S. neonatal mortality rate for all mothers was 7.1 per 1,000 live births; in 2001, it was 4.5. The highest neonatal death rate is among black or African American (not Hispanic or Latino) mothers (9.0 in 2001); the lowest is among Asian or Pacific Islander mothers (3.1 in 2001). Other 2001 neonatal death rates: Hispanic or Latino, 3.6; white (not Hispanic or Latino), 3.8; American Indian/Alaska Native, 4.2. According to the March of Dimes Birth Defects Foundation, the most common cause of neonatal
death is birth defects, which cause about 25 percent of neonatal deaths. Prematurity and its complications cause about 20 percent of neonatal deaths. The earlier a baby is born, the more likely he or she is to die. Only 5 to 10 percent of babies born at 23 weeks of pregnancy survive, while about 50 percent of babies born at 24 weeks and 80 percent born at 26 weeks survive. Less common causes of neonatal death include problems related to complications of pregnancy; complications involving the placenta, cord, and membranes; infections; and asphyxia (lack of oxygen before or during birth). March of Dimes, “Neonatal Death Fact Sheet.” March of Dimes. Available online. URL: http://www. marchofdimes.com/professionals/681_1196.asp. Posted 2003.
next of kin
A person’s closest living relative or relatives; by legal definition, in a descending order of priority: spouse; adult son or daughter; either parent; adult brother or sister; legal guardian; any other explicitly authorized person. Grief therapist and death educator Barbara J. Paul writes, “For the parents of a married son or daughter, it is often a shock for them to realize that they are not legally the next of kin. All decision-making power is technically in the hands of the spouse.”
Paul, Barbara J. “Losing a Son or Daughter.” AARP Grief and Loss Programs. Available online. URL: http://www. aarp.org/griefandloss/articles/16_a.html. Downloaded November 13, 2003.
niche
Also called a memorial niche. A space in a
COLUMBARIUM, MAUSOLEUM, or niche wall to hold an URN. Many cemeteries now offer niche space in a variety of settings, and some funeral homes also now offer niche space. Niche space may be selected for the placement of an individual urn or as a companion space for multiple urns. Niche fronts are constructed using clear or stained glass, bronze, marble, granite, or wood. Some niche fronts are part of a mosaic wall. Glass-front niches allow for personalization through the placement of photographs and mementos with the urn.
nursing homes 191 nondisclosure
Not telling a dying patient that he or she is indeed dying. Although American medical ethics now generally call for truth telling, our increasingly diverse culture is complicating the issue for physicians. Cochella and Pedersen note, “Surveys show that many ethnic and Native Americans would not want to be told distressing news about their health. As a result, our bias in favor of truth-telling risks alienating these patients and their families.” When the patient is a child or young adult, knowing all hope is lost can be especially difficult to handle. One argument for nondisclosure in such cases is: “Once they know everything there is no way of taking back that knowledge . . . it is something that they will always know and be thinking about on some level every day until they pass away.” On the other hand, Sahler et al. write, “Nondisclosure leads to feelings of isolation and abandonment in the patient. Because there is a ‘secret’ that everyone knows but the child, it becomes impossible to have honest discussions about hope, sadness, fear, or separation. In trying to avoid a moment of exquisite but relatively brief discomfort that the physician might experience if the child becomes disconsolate, the physician actually risks depriving himself or herself of experiencing the personal and professional satisfaction of doing everything, including providing profound comfort.” Legal liability is also a concern for physicians when the family of a terminal patient requests nondisclosure, but Cochella and Pedersen write, “U.S. law and our judicial system’s application of it suggest that, in the appropriate context, physicians are not liable for choosing nondisclosure.”
Cochella, Susan E. W., and Donald M. Pedersen. “Negotiating a Request for Nondisclosure.” American Family Physician 67, no. 1 (January 1, 2003): 209–211. Girgis, A., and R. W. Sanson-Fisher. “Breaking Bad News: Consensus Guidelines for Medical Practitioners.” Journal of Clinical Oncology 13, no. 9 (1995): 2449–2456. Krisman-Scott, Mary Ann. “An Historical Analysis of Disclosure of Terminal Status.” Journal of Nursing Scholarship 32, no. 1 (2000): 47–52. Sahler, Olle Jane, et al. “Medical Education about End-ofLife Care in the Pediatric Setting: Principles, Challenges, and Opportunities.” Pediatrics 105, no. 3, pt. 1 (March 2000): 575–584.
nursing homes
As the American population ages, nursing homes are becoming the most frequent site of death. According to the National Center for Health Statistics, in 1997 more than 20 percent of the aged died in nursing homes. That figure is expected to reach 40 percent by 2020. Other studies have shown that 70 percent of those who die in nursing homes are women; and the older people are, the more likely they are to die in nursing homes. According to a 1993 study, 20 percent of whites, 22 percent of Mexican Americans, and 14 percent of blacks die in nursing homes. Yet nursing homes score even worse than hospitals in polls about where patients would prefer to die. The largest clinical study ever conducted in the United States on decision-making at the end of life showed that almost a third of the patients would rather die than live in a nursing home. An additional third (37 percent) would be either “very unwilling” or “somewhat unwilling” to live in a nursing home. Only one-quarter the participants (26 percent) indicated any willingness at all. Jarvik and Collins write, “Like other parts of the health care system, nursing homes have begun to re-think how people live and die in their facilities. The good nursing homes, say the people who study them, provide the essentials of end-of-life care: attention from people who have grown to love you, who care that you are comfortable, who work to help you keep your dignity and self-worth until the end. When a cure is not possible, they move beyond that to palliative care, controlling pain and symptoms while providing emotional and spiritual support.” It is worth noting the differences between nursing homes and other long-term care facilities, which are sometime confused with nursing homes. Nursing homes Facilities licensed by the state that provide 24-hour nursing care, room and board, and activities for convalescent residents and those with chronic and/or long-term care illnesses. One step below hospital acute care. Regular medical supervision and rehabilitation therapy are mandated to be available, and nursing homes are eligible to participate in the Medicaid program. May be referred to as skilled nursing facility or convalescent home.
192 nursing homes Independent living centers Multi-unit senior housing development that may provide supportive services such as meals, housekeeping, social activities, and transportation. Independent living typically encourages socialization by providing meals in a central dining area and scheduled social programs. The term may also be used to describe housing with few or no services. Assisted living centers Generally state-licensed residential communities with services that include meals, laundry, housekeeping, medication reminders, and assistance with Activities of Daily Living (ADLs). The exact definition will vary from state to state, and a few states do not license assisted living facilities. Assisted living centers are generally regarded as one to two steps below skilled nursing in level of care. Approximately 90 percent of the country’s assisted living services are paid for with private funds, although some states have adopted Medicaid waiver programs. Memory care centers Residential facilities with specially tailored care for residents with Alzheimer’s and other forms of dementia. For example, in some memory care centers, patients are encouraged to bring along with them personal items they feel most connected to—such as furniture, photographs, favorite quilts, or collections— in order to feel comfortable, secure, and less confused. The medical staff typically has been specially trained in the care of the memory impaired.
Memory care centers are most likely to be private and are often church run; for example, residents of a Catholic memory care center in Kansas pay a flat fee of $4,440 a month for room and services. All rooms in the 40-bed center are private. In November 2002, the Department of Health and Human Services and the Centers for Medicare & Medicaid Services (CMS), formerly known as Health Care Financing Agency or HCFA, released quality of care information for nearly 17,000 nursing homes in all 50 states, the District of Columbia, and some U.S. territories. Consumers can view these measures on Nursing Home Compare at http://www.medicare.gov/ NHCompare/home.asp. The site provides detailed information about the past performance of every Medicare and Medicaid certified nursing home in the country, is updated regularly and searchable by state, and has a “Guide to Choosing a Nursing Home” and a “Nursing Home Checklist.” Jarvik, Elaine, and Lois M. Collins. “Living, and Dying in a Nursing Home.” The Deseret [Salt Lake City] News, January 30, 2003. Miller, Susan C., and Vince N. T. Mor. “The Role of Hospice Care in the Nursing Home Setting.” Journal of Palliative Medicine 5, no. 2 (2002): 271–277. Reynolds, K., et al. “Needs of the Dying in Nursing Homes.” Journal of Palliative Medicine 5, no. 6 (December 2002): 895–901.
O • Where the person grew up
obituary
A public notice of a person’s death, typically including a brief biography and traditionally appearing in the local newspaper on a page set aside for that purpose. Obituaries (referred to as “obits” by newspaper people) are usually written—or at least, edited—by the newspaper staff, based on information supplied by the family, funeral home, newspaper files, interviews, and other sources. Although many newspapers still do not charge fees for basic obituary notices, an increasing number do, especially when the deceased has only tangential connections to the newspaper’s primary circulation area—or when the family wants to include information beyond the newspaper’s set style. Some funeral directors charge for providing information to newspapers, while others add a service fee to their cost. According to consumer surveys of funeral expenses, obituary costs for an average funeral are about $300. Typically, newspapers will publish up to 200 words about a person’s life, surviving family members, visitation hours, and funeral service details. When a person was prominent in a community, the newspaper will usually write a longer obituary detailing his or her history and role in the community. Typically, newspapers write obituaries for such people well in advance of their deaths in order to be able to immediately publish full details of the person’s life and accomplishments. Ideally, individuals or their families will also prepare their obituaries well in advance before emotions and stress cause important information to inadvertently be omitted. Among the data to consider including in an obituary are:
• College attended and when • Military service—branch, dates served, where stationed, any notable decorations, rank when discharged • Where the person worked, including what he or she did there • If not a native of the town, when the person moved here • If not living in the town at time of death, when the person moved away and where to • Clubs or organizations the person belonged to locally, even if a while ago, plus any offices held • Church affiliation and activities involved in • Hobbies and interests, especially any he or she was particular adept at or successful in • Recollections of character traits Note: Not all of this information will be allowed in a free obituary. Today, obituaries have a more permanent presence on the Internet. For example: • Legacy.com hosts the online obituary sections of 125 newspapers nationwide in markets of varying sizes. • ObitCentral.com is “the headquarters on the Web for researching obituaries.” • ObituaryRegistry.com offers a national database of current obituaries and death notices. • ArrangeOnline.com offers a national obituary archive of 58,499,482 records (as of November 17, 2003).
• Date and place of death • Date and place of birth, along with parents’ names
193
194 OMEGA—Journal of Death and Dying OMEGA—Journal of Death and Dying A refereed journal edited by Kenneth J. Doka, Ph.D.; brings insight into terminal illness, the process of dying, bereavement, mourning, funeral customs, suicide. Contributions are from professionals in universities, hospitals, clinics, old age homes, suicide prevention centers, funeral directors, and others concerned with thanatology and the impact of death on individuals and the human community. It draws from the fields of psychology, sociology, medicine, anthropology, law, education, history, and literature; serving as a guide for clinicians, social workers, and health professionals who must deal with problems in crisis management, e.g., terminal illness, fatal accidents, catastrophe, suicide, and bereavement. For more information contact:
• Gypsies of eastern Europe—The most common omen of death is the cry of the owl. • Montana Native Indians—Falling stars. • Texas—A runaway mule, a dog howling at midnight, a hen crowing like a rooster, taking off a wedding ring, dreaming of losing all one’s teeth, carrying a hoe in one door and out another, not cleaning one’s shoes before returning from a funeral—all portend a death in the family.
• Tibetan Book of the Dead—If a person presses a finger against his or her eye and does not see light, cups his or her hand over the ears and does not hear a “whirring” sound, or holds his or her arms out in front and they seem to disappear, these are all signs that the individual will die in less than four weeks. Other such signs include suddenly encountering creatures with terrifying forms, experiencing bodily shivers, seeing stars during the day and sunlight at night, or seeing red flowers while riding backward on a donkey in one’s dreams.
On Our Own Terms: Moyers on Dying A fourpart, six-hour television series produced by Public Affairs Television, and presented on PBS by Thirteen/WNET New York in 2000. The four programs consist of: “Living with Dying” (examines the ways in which patients and caregivers are trying to overcome American culture’s denial of death); “A Different Kind of Care” (the evolution of palliative care and its emphasis on patients’ psychological, emotional, and spiritual well-being); “A Death of One’s Own” (the choices surrounding dying, including physician-assisted suicide, terminal sedation, the withdrawal of nutrients and hydration, and the implications for families, institutions and communities); and “A Time to Change” (profiles crusading individuals who offer palliative care to the working poor and the uninsured). The series is available on video tape, plus has associated Web discussion groups, community action, and resources through its Web site at http://www.pbs.org/wnet/ onourownterms/index.html. In response to the landmark series, KQED–San Francisco presented four half-hour companion shows entitled With Eyes Open: Honest discussions about caregiving, grief, difficult decisions and what may lie beyond death. Video tapes, transcripts, and resources are available at the Web site http://www.pbs.org/ witheyesopen/index.html.
• Orkney Islands, off the northern coast of Scotland—A clicking sound inside a house (more likely caused by woodworms); seeing a raven, crow, or owl perched on a rooftop; a rooster crowing at midnight; dreaming of a ship traveling on dry land; dreaming of losing a tooth; the appearance of a white cabbage within the household cabbage patch.
opiates Also called opioids; and the term opioid analgesics has been adopted as a general drug classification. Opiates are powerful drugs derived from the poppy plant that have been used for centuries to relieve pain. They include opium, heroin, morphine, and codeine. Even centuries after their dis-
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omens of death Events or happenings that are believed to warn people that someone is going to die. Every culture and religion throughout history has had its own such forewarnings; a few examples:
Oregon Death with Dignity Act 195 covery, opiates are still the most effective pain relievers available to physicians for treating pain. Although heroin has no medicinal use, other opiates, such as morphine and codeine, are used in the treatment of pain related to illnesses (for example, cancer) and medical and dental procedures. When used as directed by a physician, opiates are safe and generally do not produce addiction. But opiates also possess very strong reinforcing properties and can quickly trigger addiction when used improperly. Opioids are a class of prescription drugs used to treat moderate to severe pain, and include opiates such as morphine and codeine, which are derived from morphine. Opioids are used for compassionate care of the dying, although some physicians hesitate to prescribe them, as van Steenburgh explains: “Physicians face serious issues when it comes to prescribing opiates. Legitimate worries include not only fears about addicting patients to painkillers, but concerns about sanctions for over-prescribing the drugs.” State and local laws often restrict the medical use of opioids to relieve pain, and third-party payers may not reimburse for noninvasive pain control treatments. But according to the National Cancer Institute, under-treatment results when concerns about addiction (psychological dependence) to these drugs is confused with tolerance and physical dependence. Many patients with terminal illnesses such as cancer become tolerant to opioids during long-term therapy. Therefore, increasing doses are necessary to continue to relieve pain, even at the risk of side effects. Pain is a significant problem for patients with advanced lung, head, and neck cancers. Silvestri et al. note that the World Health Organization suggests using moderately potent opioids (codeine, hydrocodone, oxycodone, propoxyphene) as the second step in managing terminal cancer pain after nonopioid analgesics such as acetaminophen or nonsteroidal anti-inflammatory drugs prove inadequate. As step three, for those patients with yet uncontrolled or severe pain, the WHO suggests stronger opioids, like fentanyl or morphine. “Treatment guided by this strategy has demonstrated effective palliation of pain in up to 88 percent of patients with cancer and more than 75 percent of cancer patients who are terminally ill.”
Morphine is the most commonly used opioid in cancer pain management. Other commonly used opioids include hydromorphone, oxycodone, methadone, and fentanyl. The availability of several different opioids allows the doctor flexibility in prescribing a medication regimen that will meet individual patient needs. The most common side effects of opioids include nausea, sleepiness, and constipation. Sleepiness and nausea are usually experienced when opioid treatment is started and tend to improve within a few days. Other side effects of opioid treatment include vomiting, difficulty in thinking clearly, problems with breathing, gradual overdose, and problems with sexual function. Also, opioids slow down the muscle contractions and movement in the stomach and intestines resulting in hard stools, which may be prevented by drinking plenty of fluids along with the doctor’s prescribing a regular stool softener at the beginning of opioid treatment. Endogenous opiates are natural substances produced within the brain or other body tissues that have morphine-like properties, meaning they act on the brain to decrease the sensation of pain. They include endorphins, enkephalins, and dynorphin. See also PAIN MANAGEMENT. Silvestri, G. A., et al. “Caring for the Dying Patient with Lung Cancer.” Chest 122, no. 3 (September 2002): 1028–1036. van Steenburgh, Jason. “Avoiding Trouble When Using Opiates to Treat Patient Pain.” ACP Observer (American College of Physicians), June 2003.
Oregon Death with Dignity Act
Permits a physician to prescribe a lethal dose of medication, which the patient must self-administer. In 1994, Ballot Measure 16, the Oregon Death with Dignity Act, narrowly passed, with 51 percent of the vote, but legal injunctions kept it from being enforced. The 1997 U.S. Supreme Court decision, which kicked the matter of legalizing physician-assisted suicide back to the states, set the stage for another referendum on the issue. In November 1997, Oregon voters approved the same law again—this time with 61 percent of the vote. The major provisions of the law are as follows:
196 organ and tissue donation • The patient must be an adult (18 years of age or older), certified to be of sound mind, and a resident of Oregon. • The patient must be diagnosed with a terminal illness that is predicted to result in death within six months. • The patient must make two oral requests and one written request for physician-assisted suicide, with a waiting period of at least 15 days after the written request before the prescription is given. The written request must be witnessed by two individuals, with at least one of them not a relative or heir. • Only oral medication can be used in the act of assisting the suicide. Because the Oregon law allows a physician to write a prescription for, but not to administer, a lethal substance, the law clearly distinguishes this practice from EUTHANASIA, in which the physician would administer the lethal medication at the patient’s request. A report in the New England Journal of Medicine showed that Oregon doctors wrote 58 prescriptions in 2002 for terminally ill patients who qualified under the voter-approved law, and 38 committed suicide. Most of those who ended their lives were older, well-educated cancer victims, according to the author of the report. The primary reasons cited included loss of independence, a decreasing ability to participate in activities that make life enjoyable, and loss of control of bodily functions. Assisted suicides accounted for 0.1 percent of deaths, far less than the 2 percent to 5 percent experts had predicted when the law was being drafted in the early 1990s. The pattern remained the same in 2003, when 42 Oregonians died by physician-assisted suicide, the highest total in the first six years of the law’s existence. In all, 67 prescriptions for lethal doses of medication were written by 42 Oregon doctors. Of these, 39 died after taking the drug, 18 died of their illnesses, and 10 remained alive at the end of the year. Two patients who took the lethal dose in 2003 had received their prescription the year before, and one had received it in 2001. Again, most users were older, highly educated, and suffered from terminal cancer or amyotrophic lateral sclerosis (Lou Gehrig’s
disease). According to health officials, users are more likely than others to be divorced or never married. Of the 42 doctors who wrote lethal prescriptions in 2003, 27 wrote one, eight wrote two, and six wrote three. One doctor wrote six. Opponents of Oregon’s Death With Dignity Act expressed concern that only 5 percent of patients in 2003 were given psychiatric evaluations. THE COMPASSION IN DYING FEDERATION did advise 33 of the 42 patients. Half the patients became unconscious within four minutes of ingesting the drug and died within 20 minutes. Three patients vomited some of the drug; two died in 20 minutes, and the other in 48 hours—he had ingested only one-third of the intended dose and went into a deep coma within a few minutes. By law, the patient must swallow the drug; it cannot be administered by a doctor. Under Oregon’s Death With Dignity Act, it is legal for a doctor to prescribe a lethal dose to a terminally ill patient of sound mind who requests it orally and in writing, with two witnesses. Another doctor must confirm the patient has a life expectancy of less than six months. See also PHYSICIAN-ASSISTED SUICIDE. The Center for Ethics in Health Care. Oregon Death with Dignity Act: A Guidebook for Healthcare Providers. Oregon Health Sciences University. Available online. URL: http://www.ohsu.edu/ethics/contents.htm. Revised April 24, 2001. Colburn, Don. “Assisted Suicide Total in 2003 Edges Higher.” The Oregonian, March 10, 2004.
organ and tissue donation
The transplantation of an organ from a donor to a recipient following the donor’s death. Organ transplants have become a routine medical practice that has dramatically improved and even saved lives. Advancements in medicine have now made it possible to transplant 25 different human organs and tissues, including corneas, heart, liver, kidney, lungs, pancreas, bone, and skin. Donations may also be used for research related to diseases, disabilities, and injuries. Jackson says that each organ and tissue donor “has the potential of saving and enhancing up to 50 lives, and can take up to eight people off of the organ transplant waiting list.”
organ and tissue donation 197 Watstein writes, “Successful transplantation is increased by matching donors and recipients of the same racial and ethnic groups. The organ recovery process may involve several steps, including obtaining medical examiner approval, obtaining next-ofkin consent, reviewing medical and social history for organ safety, and testing blood to lower the risk of spreading infectious diseases. Once a recovery team surgically removes the organs without disfiguring the body, the organs are evaluated for transplant. People who receive organs are generally selected according to the United Network for Organ Sharing guidelines. There is no cost to the donor family for any organ presentation or donation procedures. Donor cards are legal documents under the UNIFORM ANATOMICAL GIFT ACT. Signing a donor card signifies a donor’s commitment to make a gift of any needed organs and/or tissues for the purpose of transplant, medical study, or education.” As the success rate of transplants continues to increase, more anatomical gifts are needed. The demand for organs and tissues far exceeds the number of those available. In 2001, Secretary of Health and Human Services Tommy G. Thompson launched a national organ donor initiative to encourage Americans to “Donate the Gift of Life,” noting that 15 Americans die each day while waiting for an organ to become available. “More than 75,000 men, women, and children now wait for a transplant . . . Every 16 minutes, another person joins the waiting list.” Frates and Garcia Bohrer note that the low rate of organ donation among Hispanics is of increasing concern to the transplant community at a time when the Hispanic population is growing rapidly, especially in southern California. “OneLegacy, the nation’s largest organ procurement organization, commissioned a series of in-depth individual interviews with Spanish language-dominant Hispanics to identify barriers and motivators to organ and tissue donation. Individuals indicated a common reticence to speak of or make plans for either their own or a family member’s death and lacked knowledge of procedures surrounding donation (whether consenting or being a donor themselves). Some respondents did not understand that organ donation takes place after death, expressing fears that declaring themselves donors would put them at risk of being allowed to die so that their organs could be recov-
ered. Other attitudinal barriers included the wish to die with all body parts intact and reluctance to have another person’s organ in their bodies.” As the demand for organ and tissue donations escalates, many different approaches to increase the supply have been suggested, including controversial means such as paying for organs. Jackson notes, “Current law and practice in the United States rely on altruism as the only motivator for organ donation. Indeed, the 1984 National Organ Transplant Act prohibits any ‘valuable consideration’ to donors for organs.” When considering organ or tissue donation, the Missouri Bar advises: The execution of an anatomical gift is preferably made by the donor, with that intent conveyed to and discussed with family members. While no other individual is legally authorized to revoke a donor’s execution of an anatomical gift, in reality most hospitals, physicians and organ procurement personnel rely on family or next of kin confirmation. This is done in order to avoid potential legal actions, to avoid creating additional stress for the family at the time of a relative’s death, and to avoid any adverse public perceptions which may compromise organ donation programs by discouraging other potential donors. Therefore, to avoid the possibility of having a gift revoked, make certain the appropriate individuals have been informed about your commitment to your personal anatomical donation. By statute, consent to organ and tissue donation is sought from these individuals in the following order of priority: 1. 2. 3. 4. 5.
Spouse Adult Child Parent Adult Sibling Legal Guardian
If any individual in a prior category refuses consent, no organs or tissues will be taken.
No charge is made to the donor’s family for donating organs. Following organ and tissue donation, all the usual funeral decisions still have to be made. Even with the removal of organs and tissues (which
198 ossuary takes only a few hours), the body will not appear damaged in any way, so an open-casket ceremony will still be possible, and there is no delay in funeral arrangements. According to LifeSharers, a nonprofit voluntary network of organ and tissue donors, only about a third of Americans have registered to be organ donors. For a downloadable donor card and brochure on organ and tissue donation, visit http://www.organdonor.gov, or call the Health Resources and Services Administration (HRSA) Information Center at (888) ASK-HRSA or (888) 275–4772. Frates, J., and G. Garcia Bohrer. “Hispanic Perceptions of Organ Donation.” Progress in Transplantation 12, no. 3 (September 2002): 169–175. Jackson, John Zen. “When It Comes to Transplant Organs, Demand Far Exceeds Supply.” New Jersey Law Journal, December 16, 2002.
Watstein, Sarah Barbara, and Stephen E. Stratton. “organ donation,” in The Encyclopedia of HIV and AIDS. Second Edition. New York: Facts On File, 2003.
ossuary
A container (also called a bone box) or room for the bones of the dead; the final resting place of human skeletal remains. Throughout history, in various cultures, the use of ossuaries has been common because of limited space for tombs or cemeteries. Bodies would first be buried, then once a body had become “skeletonized,” the bones were collected and placed in an ossuary, allowing the tomb or cemetery to be reused. One celebrated such site is the Sedlec ossuary in the Czech Republic. In 2002, an ossuary allegedly belonging to St. James the brother of Jesus was brought to public attention; its authenticity was challenged and it was determined the following year to be a modern forgery.
P because of unwarranted fears of addiction, tolerance, or sedation or because of legal concerns is unacceptable.” Agreeing is Ira Byock, author of Dying Well: “Pain and other symptoms of discomfort associated with terminal illness can always be alleviated. The notion that some physical pain associated with dying can not be made more tolerable is simply untrue. Most pain associated with cancer or other incurable illness yields to straightforward treatment. At times, pain or other distressing symptoms prove difficult to treat and absolute comfort can not be achieved, but it is always possible to make symptoms more tolerable. The concept of uncontrollable pain is self-fulfilling. Pain only becomes unmanageable when the clinicians involved give up. Although I realize that the world in which we live is real, and therefore imperfect, as a physician I consciously adopt the attitude that there is no such thing as uncontrollable pain, only pain that has yet to be controlled.” Abrahm concurs: “Patients at the end of life need not have unrelieved pain. Thorough assessment and multidisciplinary treatment can provide comfort with a minimum of adverse effects. Patients and their families can be freed to accomplish their final goals, and the bereaved families can be spared the pain of memories of loved ones who suffered in their final days.” Typically, narcotics such as morphine are used for the most severe pain. For patients who have difficulty swallowing or who wish to avoid needles, pain medication can be administered through patches on the skin or under the tongue. Non-narcotic pain medicine can be given to reduce the amount of narcotic necessary; plus, other medicines, such as antidepressants can increase the effectiveness of narcotics. In his overview of pain management for the terminally ill, Billings makes several points:
pain management
Also called pain control; a state in which physical pain is alleviated and the patient is comfortable. Many patients have pain at the end of life, but, Abrahm writes, “Their discomfort may be either unexpressed or met with skepticism by their physicians. A thorough assessment and tailored treatment plan can keep patients with even the most severe pain comfortable in their final days.” Experts have stated that 95 percent of pain in terminally ill people can be reduced, but studies show that nearly half of Americans die in pain. Appropriate interventions for comprehensive management of physical pain include: opioids, nerve blocks, psychological intervention, guided imagery, implantable devices, palliative radiation, and chemotherapy. Yet pain management continues to be a problem because doctors sometimes worry that prescribing enough pain medication for a dying patient could lead to legal repercussions. The 2002 LAST ACTS report on end-of-life care found that “All states have laws addressing the use of controlled substances. Some are effective, but others create formidable barriers to good pain management.” Revisions to state laws have been suggested as one way to help address the issue. Many authorities in the field do not believe such concerns should interfere with adequate pain management. For example, Quill et al. write, “Modern pain management is generally effective, and good pain relief can usually be achieved with a minimum of side effects by using widely available practice guidelines. Nonetheless, physicians should reassure patients that whatever opioid doses are needed to relieve suffering can and will be used, even if they cause sedation or indirectly hasten death. The patient should be the final guide about whether the level of pain relief is adequate and the side effects are acceptable. Withholding effective pain relief
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200 pain management • Analgesics for chronic pain should be administered as needed to relieve distress, and prescribed “around the clock,” based on their duration of action (usually every four hours for opioids), not when required. When necessary, they must be supplemented by a “breakthrough” or “rescue” dose between the regular administrations. • The analgesics may be supplemented with adjuvants, such as tricyclic antidepressants, anticonvulsants, psychostimulants, and glucocorticoids. All patients receiving opioids regularly require treatment to prevent constipation. An oral, poorly absorbed opioid antagonist, such as naloxone, can be helpful when usual laxatives are not working. • Neuropathic pain is best treated by anticonvulsants and tricyclic antidepressants. Gabapentin is a first-line anticonvulsant drug for neuropathic pain. Tricyclic antidepressants are effective in alleviating neuropathic pain even in patients who are not depressed, while selective serotonin reuptake inhibitors have not shown consistent benefit. • Other drugs for managing pain include !
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Bisphosphonates to prevent and treat bony metastases and associated pain in a variety of cancers, as well as radioisotopes such as strontium New opioid preparations, particularly longacting oral formulations and transdermal delivery systems, that simplify drug administration and may have other advantages Systemically administered local anesthetics, such as parenteral lignocaine (lidocaine) or oral mexiletine, and ketamine for neuropathic pain Psychostimulants to counteract sedative effect of opioids Topical local anesthetics, such as Emla cream (lignocaine and prilocaine), to reduce skin pain from medical procedures Specialized pain relieving procedures, such as nerve blocks and spinal (epidural and intrathecal) analgesia.
Note that other drugs may be given at the same time as the pain medication. This is done to increase
the effectiveness of the pain medication, treat symptoms, and relieve specific types of pain. These drugs include antidepressants, anticonvulsants, local anesthetics, corticosteroids, and stimulants. There are great differences in how patients respond to these drugs. Side effects are common and should be reported to the doctor. Corticosteroids have achieved wide acceptance in the management of patients with cancer pain. They are indicated as adjuvant analgesics for cancer pain of bone, visceral, and neuropathic origin. Adverse effects include neuropsychiatric syndromes, gastrointestinal disturbances, proximal myopathy, hyperglycemia, aseptic necrosis, capillary fragility, and immunosuppression. The risk of adverse effects increases with the duration of use. As a result, use is often restricted to patients with a limited life expectancy; in addition, once effective pain control is obtained it is commonly recommended that the dose be tapered as much as possible. Another suggested use of corticosteroids is in high doses for short periods in patients with severe pain. Although there is widespread acceptance of steroid therapy, mostly via the oral route, but also subcutaneously and intravenously, data remain inadequate for definitive conclusions regarding efficacy and dosing guidelines. The National Cancer Institute notes that medications for pain may be given in several ways. “The preferred method is by mouth, since medications given orally are convenient and usually inexpensive. When patients cannot take medications by mouth, other less invasive methods may be used, such as rectally or through medication patches placed on the skin. Intravenous methods are used only when simpler, less demanding, and less costly methods are inappropriate, ineffective, or unacceptable to the patient. Patient-controlled analgesia (PCA) pumps may be used to determine the opioid dose when starting opioid therapy. Once the pain is controlled, the doctor may prescribe regular opioid doses based on the amount the patient required when using the PCA pump. Intraspinal administration of opioids combined with a local anesthetic may be helpful for some patients who have uncontrollable pain.” Some of the blame for inadequate pain control at the end of life has been placed on inadequate training of physicians. According to a survey of 125 medical schools by the Association of American
pain management 201 Medical Colleges in 2001, only 3 percent of those schools required students to take a course on pain management. Writing about the nature of suffering, Byock concurs: “Most physicians in current practice have had no formal education directed at the philosophy or phenomenology of human suffering, and very little training directed toward the management of the terminal phase of illness. Typically, empiric experience with human suffering accumulates during practice when the opportunities for being mentored, for formal study and for thoughtful reflection are scarce. Medical and nursing education remains focused on cure, life-prolongation and restoration of function. While these are among the primary goals of medicine, so too, is the relief of suffering.” Another impediment to optimal pain management is that non-traditional pain-control treatments often are not covered by insurance. In their study of providers in New York, New Jersey, and Connecticut, Cleary-Guida et al. found negligible coverage for most alternative treatments, with less than half of the insurers reimbursing acupuncture for chronic pain management. “Coverage for acupuncture seems to have been driven by a large foundation of clinical studies showing the effectiveness of acupuncture in chronic pain. A National Institutes of Health (NIH) panel reported that acupuncture may be as useful as an adjunct treatment or an acceptable alternative for a variety of conditions including postoperative and chemotherapy- induced nausea and vomiting, and pain management (NIH Consensus Development Panel on Acupuncture, 1998).” In 2004, Teno et al. reported on results of their study that compared the nationwide dying experience between 519 at-home deaths and 1,059 in institutional settings. Family members questioned on their loved ones’ last days were more likely to be satisfied if care was given through home hospice services rather than in a nursing home or hospital. But overall, about one-quarter of all patients did not receive adequate treatment for pain or breathing difficulties. The Elderly and Pain Management Pain management can be particularly critical for elderly patients diagnosed with a terminal illness, according to Chrystal-Frances. “The special needs of
these patients with regard to pain control are often inadequately addressed by medical professionals. Popular belief holds that elderly people have less pain sensitivity than younger people. Elderly patients experiencing heart attacks, for example, tend to bear out the pain for a longer period of time than do younger patients before appearing at the hospital. Although there is an observable phenomenon of silent myocardial infarctions and ‘painless’ intra-abdominal surgical procedures in older patients, there is no research to support the belief that any differences in pain perceptions are age-related. “In fact, the perception of pain by the elderly patient results from the same physiological processes experienced by the mainstream population. Even the literature fails to address pain in the older patient adequately. Of the more than 4,000 documents published annually about pain in the early 1990s, it is estimated that only 1 percent focused on older patients. Given these observations, one can acknowledge the fact that the terminally ill are not necessarily guaranteed appropriate pain management.” Children and Pain Management In recent years, more information about pain management for children has become available to physicians, resulting in more aggressive treatment, with morphine pumps and pain and nausea patches now being used for children. But at least one study, published in 2000, indicated that children with cancer still die in pain. Researchers at Dana-Farber Cancer Institute interviewed 103 parents of children who died. Eightynine percent said that their child experienced substantial suffering in the last month of life, particularly from pain, fatigue, and shortness of breath. Researchers at Washington University School of Medicine in St. Louis found that terminally ill children with cancer who have neuropathic pain require more opioids during the final days of life than those without neuropathic pain. In addition, the team found preliminary evidence that a “cocktail” of several narcotics was significantly more effective at treating these patients than dramatically increasing the dosage of two commonly used opioids—morphine and benzodiazepine. The study appears in the April 2003 issue of the Journal of Pediatrics.
202 pall Non-drug approaches to pain management, such as biofeedback, relaxation, and music therapy, are typically under-emphasized in end-of-life education despite many studies showing that these measures are effective, according to Shaler et al. “Nonpharmacologic measures have the added benefit of providing the child with a sense of control and of mastery. Included within the spectrum of combined pharmacologic/nonpharmacologic approaches is the use of patient-controlled analgesia (PCA) pumps to permit self-administration of a predetermined dose of analgesic at set intervals. Because young children, in particular, report that having a parent with them is the most helpful pain management intervention, (medical staff) should be prepared to offer parents ideas for activities which promote relaxation and distraction (e.g., telling a favorite story, massage).” Web sites that offers information and assistance in the area of pain management include:
Dougherty, M., and M. R. DeBaun. “Rapid Increase of Morphine and Benzodiazepine Usage in the Last Three Days of Life in Children with Cancer Is Related to Neuropathic Pain.” Journal of Pediatrics 142, no. 4 (April 2003): 373–376. National Cancer Institute. “Pain (PDQ).” Available online. URL: http://www.cancer.gov/cancerinfo/pdq/ supportivecare/pain/patient. Updated March 19, 2003. Quill, Timothy E., et al. “The Debate over PhysicianAssisted Suicide: Empirical Data and Convergent Views.” Annals of Internal Medicine 128, no. 7 (April 1, 1998): 552–558. Sahler, O. J., et al. “Medical Education about End-of-Life Care in the Pediatric Setting: Principles, Challenges, and Opportunities.” Pediatrics 105, no. 3, pt. 1 (March 2000): 575–584. Teno, Joan M., et al. “Family Perspectives on End-of-life Care at the Last Place of Care.” JAMA 291 no. 1 (January 7, 2004): 88–93.
• American Chronic Pain Association: http://www.theacpa.org • American Pain Foundation: http://www.painfoundation.org • American Academy of Pain Management: http://www.aapainmanage.org • Pain.com: http://www.pain.com See also MUSIC THERAPY FOR THE DYING; OPIATES. Abrahm, Janet. “Pain Management for Dying Patients: How to Assess Needs and Provide Pharmacologic Relief.” Postgraduate Medicine 110, no. 2 (August 2001): 99–114. Billings, J. Andrew. “Recent Advances: Palliative Care (Clinical Review).” British Medical Journal 321, no. 7260 (September 2, 2000): 555–558. Byock, Ira. “The Nature of Suffering and of Opportunity at the End of Life.” Clinics in Geriatric Medicine 12, no. 2 (May 1996): 237–251. Chrystal-Frances, Eileen. “Palliative Care: A Discussion of Management and Ethical Issues.” Nursing Forum, April 1, 2003. Cleary-Guida, Maria B., et al. “A Regional Survey of Health Insurance Coverage for Complementary and Alternative Medicine: Current Status and Future Ramifications.” The Journal of Alternative and Complementary Medicine 7 (2001): 269–273.
pall A cloth spread over a casket, bier, hearse, or tomb. Also, a burial garment in which a corpse is wrapped. During the Middle Ages, the burial pall might be a color such as gold, blue, red, or green. Later, the Christian Church required that the pall be black, although it could have a white or red cross on its center, as well as symbols of death, such as skulls or cross-bones. Today, palls are most often used in a Catholic or Episcopal Church funeral. According to the Catholic Encyclopedia, “The pall is in universal use, though not prescribed. Where, however, there is no catafalque or bier, absolution may not be given except a black cloth be extended on the floor of the sanctuary.” The Catholic pall today is also likely to be white. Outside religious requirements, any cloth may be used as a pall, including the American flag in the case of a veteran or in state funerals. In England, a flag or a family coat of arms is often used as a pall.
pallbearer
One of the mourners who helps to carry or escort the casket at a funeral or burial. Serving as a pallbearer is considered an honor and a true act of friendship. Usually those selected are people who were close to the deceased, such as children, grandchildren, nephews, or friends.
palliative care 203 According to the Museum of Funeral Customs, “In ancient Rome, when a man died, his cloak, or ‘pallium,’ was spread over his body or coffin as it was carried from the home to the cemetery. A group of men would bear the body on their shoulders. By the time of the Middle Ages in Europe, the ‘pallium’ had become a PALL that was rectangular and was used to cover the coffin especially as it lay in a Christian church. By this time, one group of men would bear the body and a second group of men would march beside them in the procession, holding the hem of the pall to keep it from blowing off in the wind. The pall was loaned by the church or guild for member funerals, and it was very decorative and might even have an elaborate coat of arms. The pall is still used in certain religious denominations to cover the casket while in the church. In military or State funerals, the national flag serves as a pall over the casket. At some point, the second group of bearers disappeared from the ceremony but the slightly incorrect name remains.” Today, according to the Ocean Grove Memorial Home in Ocean Grove, New Jersey, formal, active pallbearers are commonly needed only to carry the casket into and out of church for the funeral ceremony. Modern funeral homes are prepared to move the casket (often indoors to the hearse) without requiring additional help to carry the casket. Assistance is usually available at the cemetery to move the casket from the hearse to the grave. When needed, six bearers are used, three on each side of the casket, and often merely up a stairs; a wheeled “truck” is commonly used to move the casket inside the church. After the pallbearers carry the casket into the church and place it on the wheeled truck, they are not needed until after the ceremony, when the casket is carried back to the hearse. The funeral home staff usually moves the casket inside the church. Although commonly a service provided by men, today anyone may serve as an active pallbearer. Children and grandchildren, including daughters and granddaughters, often act as pallbearers. Honorary pallbearers are accorded the honor of escorting the casket and sitting with the active pallbearers but do not actually carry the casket. A special friend or business associate of the decedent may be named as an honorary pallbearer. At the death of
a policeman or fireman, the majority of the uniformed force who are not selected to be active bearers often act as honorary pallbearers. At the cemetery, they often act as an honor guard during the committal ceremony. When relatives and friends are not available to act as active pallbearers, the funeral home will hire professional pallbearers who will carry the casket where necessary. They are paid a fee and will meet the funeral at a local cemetery when requested, but usually the cemetery personnel help move the casket at the cemetery.
palliative care
A holistic philosophy that focuses on pain avoidance and comfort for patients, including attention to their and their families’ spiritual, psychological, social, and emotional needs. It has been described as active, total care of patients at a time when their disease is no longer responsive to curative treatment and when control of pain, as well as other problems, is paramount. HOSPICE care is the best-known form of palliative care, in which nurses and social workers in a person’s home or institution substitute for medical procedures that try to keep a person alive at all costs. Palliative care is sometimes referred to as COMFORT CARE. The goals of palliative care are to meet the needs of a dying person by ensuring that medications and other methods for controlling pain are readily available and that symptoms are effectively managed to achieve the best quality of life available to the patient while enabling the patient to achieve maximum functional capacity. It is intended to best suit the patient’s values, beliefs, preferences, and needs in whatever setting (home, hospital, nursing home) care is being received. An interdisciplinary team, including nurses, chaplains, social workers, and physicians, provides palliative care. According to Chrystal-Frances, “The term palliative care was coined by Balfour Mount in 1973 to describe his new program at the Royal Victoria Hospital in Montreal. This was the first hospice-like unit based in an academic teaching hospital. It was modeled on the freestanding St. Christopher’s Hospice in London.” Rotstein writes, “The palliative care concept is still a bit squishy in definition, as no formal standards
204 palliative care exist to accredit hospitals for offering it. Those who practice it say the use of palliative care translates into reduced use of uncomfortable feeding tubes and intensive care late in life; more attention to pain medications and relief for symptoms such as nausea and vomiting; increased counseling of patients and families and assistance with preparing for discharge from the hospital.” The World Health Organization proposes that palliative care has these characteristics: • affirms the right of the individual and family to participate in informed discussions and make treatment choices, • affirms life and regards dying as a normal process, • neither hastens nor postpones death,
care is a discipline, according to Byock, and hospice care is the best-developed system of delivering it. Although most often associated with the dying, palliative care is also used for the chronically ill who continue to undergo curative treatments. A common misconception is that a patient can receive traditional medical care or palliative care, but not both. The type of care given depends on the circumstances and the patient’s wishes, which may change as an illness progresses. Studies show patients’ lives are not shortened when physicians choose palliative care over intensive care. Noting that it is often difficult to decide when aggressive medical treatment should end and when palliative care might begin, the World Health Organization suggests that palliative care would begin when:
• provides relief from pain and other distressing symptoms,
• medical treatment is no longer effective, or the side-effects outweigh the benefits;
• integrates psychological and spiritual aspects of care,
• the patient says he or she does not want to continue aggressive therapy; and/or
• provides a support system to help the patient live as actively as possible until death, and • provides a support system to help the family and loved ones cope during the person’s illness and/or bereavement. Explaining the importance of palliative care, Ira Byock, M.D., director of Promoting Excellence in End-of-Life Care, writes, “Comprehensive care for people who are dying rarely requires more than careful management of symptoms and attention to the basic psychosocial needs of the individual—as a person—and their family. Beyond symptom management, hospice and palliative care intervention can be directed at helping the person to attain a sense of completion within the social and interpersonal dimensions, to develop or deepen a sense of worthiness and to find their own unique sense of meaning of life. Most fundamentally, clinicians can serve the dying person by being present. We may not have answers for the existential questions of life and death any more than the person dying. We may not be able to assuage all feelings of regret or fears of the unknown. But it is not our solutions that matter. The role of the clinical team is to stand by the patient, steadfastly providing meticulous physical care and psychosocial support, while people strive to discover their own answers.” Palliative
• the body’s vital organs begin to fail. African Americans and other members of medically underserved communities use relatively few palliative and hospice services, even when they have full access. Little data exists to explain this phenomenon, although historical denial of access to health care and past abuses in medical research may have contributed to a general mistrust of the health care system. From this perspective, palliative and hospice care may appear to pose further barriers to full medical treatment. Compounding this is the relative scarcity of physicians trained to deliver culturally competent end-of-life care. Palliative care typically involves a team approach that may include a nurse, pharmacist, social worker, spiritual counselor, and dietician as well as the patient’s physician. According to the Center to Advance Palliative Care, only 17 percent of hospitals have true palliative care programs. A key reason palliative care is not more common in hospitals, according to Rotstein, is that “it’s not well-reimbursed by Medicare or private insurers. And if a hospital provides palliative care services, generally it will be reimbursed only for the physician’s work, not that of other team members.” The federal government does not pay for doctors to take advance
palliative care for children 205 training in it because it is not yet an officially recognized medical sub-specialty. The City of Hope Pain/Palliative Care Resource Center (COHPPRC), established in 1995, serves as a clearinghouse to disseminate information and resources to assist others in improving the quality of pain management and end-of-life care. COHPPRC is a central source for collecting a variety of materials including pain assessment tools, patient education materials, quality assurance materials, end-of-life resources, research instruments. In December 2003, the National Institutes of Health awarded a grant totaling $1.1 million over the next five years to the Center for Palliative Studies at San Diego Hospice & Palliative Care to support the development of a palliative care curriculum, so that medical students across the country can better learn to care for dying patients and their families. Byock, Ira R. “The Nature of Suffering and of Opportunity at the End of Life.” Clinics in Geriatric Medicine 12, no. 2 (May 1996): 237–251. Chrystal-Frances, Eileen. “Palliative Care: A Discussion of Management and Ethical Issues.” Nursing Forum, April 1, 2003. Crawley, Lavera M. “Palliative Care in African-American Communities.” Journal of Palliative Medicine 5, no. 5 (October 2002): 775–779. Maddocks, Ian. “Palliative Care in the 21st Century.” Medical Journal of Australia 179, no. 6 Suppl. (2003): S4–S5. Rotstein, Gary. “Less Pain, More Comfort for Patients with Life-Threatening Illnesses: Hospital-Setting Palliative Care Is Gaining Adherents.” Pittsburgh Post-Gazette, December 16, 2003.
palliative care for children
Although the concept of PALLIATIVE CARE has been growing in adult medicine for more than three decades, it has been slower to catch on in pediatrics. According to a report by the Children’s International Project on Palliative/ Hospice Services, barriers to palliative care for children include: • a society that does not expect kids to die • families that think medicine can cure all ills • more medical focus on curative rather than palliative care
• the need for lengthy—and sometimes repeated— conversations about the course of care • a perception that palliative care is useful only if all curative efforts have been exhausted • a shortage of practitioners who have experience helping families make end-of-life decisions about children Even though our society now expects children to live until adulthood, Schmidt notes that in the United States alone, “75,000–100,000 children die each year, and an additional one million are seriously ill with progressive medical conditions. However, few end-of-life programs target children’s special needs. Introducing support and palliative care early into a child’s final journey is key to alleviating distress for both child and parent.” In general, there’s been little research on dying children. As a result, parents and doctors have little to guide them, according to a 2002 report from the Institute of Medicine (IOM), When Children Die. The institute recommends that pediatric hospitals and the National Institutes of Health spearhead the research. Noting that the IOM report offers “a momentous opportunity to shed light on the scarcity of palliative and hospice care services for infants and children,” Sumner examines a new coalition of pediatric hospice and palliative care leaders that has been formed to serve as a unified voice for the leaders in the field, and the parents and children with which they work. “Pediatric end-of-life care is very different from adult palliative and hospice care and thus requires specialized knowledge and training to address the unique needs of these patients.” American Academy of Pediatrics Committee on Bioethics. “Palliative Care for Children Policy Statement.” Pediatrics 106, no. 2 (August 2000): 351–357. “Comfort Care for Kids: Palliative Services for Dying Children Improve but Often Fall Short.” The [Bergen] Record, December 30, 2002. Field, Marilyn J., and Richard E. Behrman, editors. When Children Die: Improving Palliative and End-of-life Care for Children and Their Families. Washington, D.C.: National Academies Press, 2003. Hynson, Jenny L., et al. “The Dying Child: How Is Care Different?” Medical Journal of Australia 179, no. 6 Suppl. (2003): S20–S22.
206 paradise Schmidt, L. M. “Pediatric End-of-life Care: Coming of Age?” Caring 22, no. 5 (May 2003): 20–22. Sumner, L. H. “Lighting the Way: Improving the Way Children Die in America.” Caring 22, no. 5 (May 2003): 14–18.
paradise
A final destination portrayed in various religions as peaceful and beautiful, where those who are favored by the gods (or good souls) can go when they die; a ceaseless feast and festival. Also referred to as Eden, Elysian Fields, Elysium, HEAVEN, nirvana, promised land, Shangri-la, or VALHALLA. Not all religions view paradise as an easy or automatic trip. For example, according to Lawrence E. Sullivan, director of Harvard University’s Center for Study of World Religions, “In the Zoroastrian religion, which arose out of Iran, the dead face the prospect of complete, agonizing annihilation. In order to reach paradise, the soul must cross the Chin Vat, a bridge of fire, without being consumed or falling into the abyss.” Paradise is also looked upon as a way out of life’s intolerable conditions. According to White, “Christians cling to hope of the hereafter in times of oppression or sorrow. Out of slavery came the haunting wish for a ‘sweet chariot’ bound for a home in paradise.” In her book, Believers and Beliefs (Berkley, 1997), White lists several viewpoints of paradise, including: • Church of Jesus Christ of Latter-day Saints (Mormons): Heaven is not a single paradise, but a series of kingdoms, each of which may have more than one level. People can progress to higher levels and kingdoms after death until eventually everyone can become equal to Jesus. • Islam: The just will ascend to a paradise of gardens where rivers flow with milk and honey. • Taoism: Some Taoists have formulated elaborate expectations of paradise on mystical mountains or supernatural islands with specific geographic locations. Menagh, Melanie. “Beyond Death and Dying.” Omni, September 22, 1995. White, Gayle. “Living with Death: Life Everlasting.” The Atlanta Journal and Constitution, April 11, 1998.
Partnership for Caring National nonprofit organization that partners individuals and organizations to improve how people die in our society. As a source for information about many aspects of end-of-life care and decision-making, Partnership for Caring tracks legal activity and provides expert information about these issues, produces a wide variety of educational materials as well as state-specific advance directives (living wills and medical powers of attorney), and maintains a collaborative network with other organizations and professionals concerned with improving end-of-life care. Partnership for Caring serves as the National Program Office for LAST ACTS. Among the free resources on its Web site are advance directive forms for residents of every state. The group also operates a national toll-free hotline for end-of-life concerns. In January 2004, Partnership for Caring and Last Acts merged to become Last Acts Partnership. For more information contact: Last Acts Partnership 1620 Eye Street NW Suite 202 Washington, D.C. 20006 (202) 296–8071 (202) 296–8352 (fax) (800) 989–9455
[email protected] http://www.partnershipforcaring.org
passive euthanasia
See EUTHANASIA.
pastoral caregivers Clergy and lay persons of all religious faiths who have had special training for meeting spiritual and emotional needs of patients and their families who are dealing with critical issues, especially death and dying, as well as the needs of the hospital, nursing home, or hospice staff. In addition to their role as a support system, pastoral caregivers find themselves answering ethical questions that pertain to end-of-life issues and living wills, performing final religious rituals, and acting as liaisons. Traditionally, pastoral caregivers cross institutional, economic, cultural, and ecclesiastical boundaries in integrating spirituality into the healing of the whole being. They work around the clock in
Patient Self-Determination Act 207 communities, congregations, hospitals, long-term care facilities, correctional services, and mental health systems, helping people of all faiths and those with no formal religious affiliation.
patient-centered care Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and solicits patients’ input on the education and support they need to make decisions and participate in their own care. Patient-centered health care addresses patients’ needs and concerns, as defined by the patient. Patient-centered medicine is contrasted with illness-centered medicine, which focuses on the technical aspects of quality health care. Health care has been evolving away from a “disease-centered model” and toward a “patientcentered model.” In the older, disease-centered model, physicians make almost all treatment decisions based largely on clinical experience and data from various medical tests. In a patient-centered model, patients become active participants in their own care and receive services designed to focus on their individual needs and preferences, in addition to advice and counsel from health professionals. A report from the Institute of Medicine, Crossing the Quality Chasm, notes a “quality chasm” between the health care we have and the health care we could have, and points out that this gap is attributable in part to the fact that too often patients must adapt to the customs and usual procedures of health care organizations and professionals, rather than receiving services designed to focus on an individual’s needs and preferences. Prior research has demonstrated that patients who are active participants in their care experience better outcomes than those who are not similarly engaged; yet promising approaches to engage individuals as comanagers of their health and health care have not been broadly applied. To this end, the federal Agency for Healthcare Research and Quality in July 2001 announced a three-year program to support redesign and evaluation of new care processes that lead to greater patient empowerment, improved patient-provider interaction, easier navigation through health care systems, and improved access,
quality, and outcomes. Among the projects researchers were encouraged to propose were those emphasizing individuals who need end-of-life health care. Advance directives are one end-of-life empowerment strategy within the concept of patient-centered care. Another strategy is attention by health care providers to issues of cultural diversity and attempts to learn, from patients and families of ethnic groups other than white, middle-class Americans, in regard to end-of-life decision making.
Patient Self-Determination Act (PSDA) A federal law, implemented in December 1991, that requires all health care facilities receiving Medicare or Medicaid reimbursements to inform patients upon admission of their right to make choices about the treatment they receive and to prepare ADVANCE DIRECTIVES. In their position paper, the American Dietetic Association (ADA) explains that the law “is based on a principle formulated a hundred years earlier, in 1891, that ‘no right is held more sacred, or is more carefully guarded by the common law, than the right of every individual to the possession and control of his person, free from all restraint or interference of others, unless by clear and unquestionable authority of the law.’ The crucial ethical responsibility is to ensure that the patient, not the family or institutions, makes the decision about medical treatments, including nutrition and hydration.” However, the ADA asserts, “The patient’s ethical and legal right to self-determination as guaranteed by the informed consent doctrine is not absolute. The state, or other institutions, may exert powers to limit the right of personal liberty on the basis of several concepts: the preservation of life, the prevention of suicide, the protection of innocent third parties, especially children, and the protection of the ethical integrity of the health professional.” According to Choice in Dying (forerunner of Partnership for Caring), the PSDA requires health care facilities to: • provide written information to patients about their right to make decisions concerning treatment by completing advance directives;
208 perpetual care • ensure compliance with the requirements of state law; • maintain written policies and procedures with respect to advance directives; • document in the individual’s medical record whether or not that individual has executed an advance directive; • educate their staff and the communities they serve about state law governing advance directives; and • not condition the provision of care or otherwise discriminate against an individual based on whether or not that individual has executed an advance directive. Maillet, J. O., R. L. Potter, and L. Heller. “Position of the American Dietetic Association: Ethical and Legal Issues in Nutrition, Hydration, and Feeding.” Journal of the American Dietetic Association 102, no. 5 (May 2002): 716–726.
perpetual care
A service offered by some cemeteries, which guarantees eternal cemetery upkeep, such as grass planting and mowing and general cleanup. The Federal Trade Commission cautions, “Perpetual care on a cemetery plot sometimes is included in the purchase price, but it’s important to clarify that point before you buy the site or service. If it’s not included, look for a separate endowment care fee for maintenance and groundskeeping.” Fees vary widely. One Utah municipal cemetery, for example, in 2003 charged a one-time $200 perpetual care fee for a plot with flat headstone, $250 with a monument, and $50 for an infant plot or cremains. The perpetual care fee had to be paid in total at the time the grave sites were ordered. In Texas, the perpetual care fee covered only the cemetery grounds and mausoleums. Markers were not covered. Perpetual care fees in a California city in 2003 were $650 for residents and $750 for nonresidents; in a Michigan city, $125.
persistent vegetative state (PVS) A condition in which a patient is completely unresponsive to stimuli and displays no sign of higher brain function, being kept alive only by medical intervention. Individuals in such a state have lost their thinking abili-
ties and awareness of their surroundings, but retain non-cognitive function and normal sleep patterns. Even though those in a persistent vegetative state lose their higher brain functions, other key functions such as breathing and circulation remain relatively intact. Spontaneous movements may occur, and the eyes may open in response to external stimuli. They may even occasionally grimace, cry, or laugh. Although individuals in a persistent vegetative state may appear somewhat normal, they do not speak and they are unable to respond to commands. A nurse discussing the TERRI SCHIAVO case in a newspaper article said, “People in PVS can grimace, smile, they appear to look at you sometimes. They seldom track you, but you can tell they are looking at you as you move around the room. You can clap your hand right in front of their eyes and get no response.” According to a Multi-Society Task Force (representing the American Academy of Neurology, Child Neurology Society, American Neurological Association, American Association of Neurological Surgeons, and American Academy of Pediatrics), the vegetative state is “a clinical condition of complete unawareness of the self and the environment, accompanied by sleep-wake cycles, with either complete or partial preservation of hypothalamic and brain-stem autonomic functions”—meaning sleep cycles, body temperature, breathing, and heart rate function normally, or to some degree of normalcy. In addition, patients in a vegetative state show no evidence of sustained, reproducible, purposeful, or voluntary behavioral responses to sights, sounds, touch, or unpleasant stimuli; show no evidence of language comprehension or expression; have bowel and bladder incontinence; and have prominent abnormal reflexes, such as involuntary stiffening or jerking of the arms and legs. The task force defines persistent vegetative state as “a vegetative state present one month after acute traumatic or nontraumatic brain injury or lasting for at least one month in patients with degenerative or metabolic disorders or developmental malformations.” Others have defined PVS as a vegetative state that has persisted for three months when caused by disease and 12 months following head injury. Severely brain-damaged and in a permanent coma from which they will not likely recover, PVS
pets 209 patients are almost always on life-support systems. How long a person remains alive and his or her chances of leaving the persistent vegetative state depend on its cause—acute traumatic or nontraumatic brain injury, degenerative or metabolic brain disorder, or severe congenital malformation of the nervous system. The task force found that “recovery of consciousness from a posttraumatic persistent vegetative state is unlikely after 12 months in adults and children. Recovery from a nontraumatic persistent vegetative state after three months is exceedingly rare in both adults and children. Patients with degenerative or metabolic disorders or congenital malformations who remain in a persistent vegetative state for several months are unlikely to recover consciousness. The life span of adults and children in such a state is substantially reduced. For most such patients, life expectancy ranges from two to five years; survival beyond 10 years is unusual.” Some patients may regain a degree of awareness after persistent vegetative state. Others may remain in that state until their death. The most common cause of death for someone in a persistent vegetative state is infection, such as pneumonia. Multi-Society Task Force on PVS. “Medical Aspects of the Persistent Vegetative State.” New England Journal of Medicine 330, no. 2 (May 26, 1994): 1499–1506.
personification of death Attributing human characteristics to Death or depicting Death as a living, human being has existed in all known cultures since the earliest days of storytelling and illustrates the substantial influence on the human psyche of the reality of death. For example, Thanatos is the Greek name for a mythical personification of death, borrowed by Freud to represent the death instinct. In modern-day, European-based folklore, Death is also known as the GRIM REAPER—a skeletal, hooded figure, dressed in black; or sometimes an old man holding a scythe. Though most often male, Death has at times been female.
pets
In several North American studies, pet ownership or attachment has been shown to be
associated with the maintenance of physical or emotional health during bereavement. Non-pet owners reported a deterioration of health after the loss of a spouse, whereas dog owners who had formed a bond with their dogs reported no such deterioration if their health was good. Particularly when it involves a close attachment, pet ownership among elderly individuals has been associated with less depression among bereaved persons who have recently lost a spouse and who have few or no confidants. The Eden Alternative philosophy incorporates companion animals (as well as outdoor gardening, indoor plants, and children) into the daily lives of assisted living and nursing home residents. The program, established in 1994, sets out to eliminate the three plagues of long-term institutional care: loneliness, helplessness, and boredom. In some palliative care settings, patients are allowed—even encouraged—to have their own pets or Pet Partner Program pets brought into their rooms. Hospice of Southwest Florida, for example, has a Pet Therapy Program in which a variety of cats, dogs, and birds are trained and mentored by an experienced pet therapy volunteer. The pets visit hospice patients and families in hospice houses, hospitals, nursing homes, and patients’ homes. The purpose: “Studies show that the presence of pets increases feelings of happiness, security and self worth in patients. Many patients have fond memories of their own pets. Also, pets offer terminally ill patients an opportunity to touch and be touched, which is a crucial need of every human being.” But pets left behind when their humans die can present a new set of problems, especially when a person lived alone. Nursing home and hospice staffs have noted that to some patients animals are their friends and their family. Some pets are the only companions they have had for years, and they are often devastated because they do not know what to do with their pets. The situation occurs often enough that facilities often add pet-care programs to their services. VistaCare, a Nevada hospice, has an alliance with shelters and veterinarians to place pets after their owners die, sometimes with patients who need a companion. According to Rogak, the number of pets left behind with no provision is increasing as the population ages.
210 physician-assisted suicide Canis Major. “Eden Alternative Adds Animals to Retirement Centers.” Dog Owners Guide. Available online. URL: http://www.canismajor.com/dog/llanfair.html. Downloaded July 18, 2004. Rogak, Lisa. PerPETual Care: Who Will Look after Your Pets If You’re Not Around? Grafton, N.H.: Litterature, 2003.
physician-assisted suicide Specifically refers to a physician providing medications or other interventions with the understanding that a patient plans to use them to cause his or her own death. The only state in which this is legal is Oregon. According to the National Cancer Institute: Answers to the question of physician-assisted suicide belong to the realm of the law, ethics, medicine, and philosophy. Physicians and other health care professionals have essential clinical roles to play in addressing and untangling these issues when working with depressed, terminally ill patients. Additionally, religious and cultural issues may strongly influence this decision-making process. A 1994 survey suggests that hospice physicians favor vigorous pain control and strongly approve of the right of patients to refuse life support even if life is secondarily shortened. However, these physicians strongly oppose assisted suicide. Often patients who specifically request physician-assisted suicide can be prescribed measures that augment their comfort, relieve symptoms, and obviate considering drastic measures. A 1995 study of persons with advanced cancers who expressed a consistent and strong desire for hastened deaths suggested that this desire is related to the presence of depression. Patients with the desire to die should be carefully assessed and provided with assistance for treating depression. Whether their desire to die would persist or decrease with improvement in mood disorder has not yet been studied.
Ira Byock, author of Dying Well, writes, “Approaching the problem of suffering among the dying through the lens of assisted-suicide is like looking through the wrong end of binoculars; it narrows and distorts the view. My focus is in reducing the conditions that make PAS seem an attractive alternative to patients facing the prospect of living with an incurable illness and to society struggling to care for the
dying. Success will not come with making assisted suicide and euthanasia legal, but rather with making them unnecessary. As a doctor my commitment is to do everything possible—and anything that is necessary—to alleviate a person’s suffering. In the very rare situations in which physical distress is extreme it is always possible to provide comfort through sedation. The difference between what I do and euthanasia is that palliative care does whatever is necessary to alleviate the suffering while euthanasia is focused on eliminating the sufferer.” See also ASSISTED SUICIDE; EUTHANASIA; MERCY KILLING; OREGON DEATH WITH DIGNITY ACT.
place of death Early in the past century, home was the usual place of death; today, fewer than two in 10 Americans will die at home; yet in a 1996 survey, 90 percent of the respondents said they preferred to die at home. According to LAST ACTS, increasingly, people are spending their final days in nursing homes—17 percent in 1997 is expected to rise to 40 percent by 2040. In a Yale University study, approximately twothirds of cancer patients, when asked about the preferred place of death, wish to die in their own homes. However, the majority of deaths from cancers in most Western countries occur in a hospital. Other statistics show that more than 55 percent of people, many of them younger than 65, die in hospitals. A University of Chicago study that analyzed 1993 deaths in the United States concluded that the substantial differences among whites, blacks, and Mexican Americans in place of death cannot be explained by differences in age, sex, income, education, or causes of death among the groups. The researchers found that 43 percent of whites, 50 percent of blacks, and 56 percent of Mexican Americans die after an inpatient hospital stay. Twenty percent of whites, 22 percent of Mexican Americans, and 14 percent of blacks die in nursing homes. Twenty-two percent of whites, 18 percent of blacks, and 9 percent of Mexican Americans die in a private residence. Iwashyna, Theodore J., and Virginia W. Chang. “Racial and Ethnic Differences in Place of Death: United States, 1993.” Journal of the American Geriatrics Society 50, no. 6 (June 2002): 1113–1117.
poetry on death and dying 211 Tang, S. T., and R. McCorkle. “Determinants of Place of Death for Terminal Cancer Patients.” Cancer Investigation 19, no. 2, (2001): 165–180.
planning books
End-of-life planning books have grown in popularity in recent years in Japan, where the middle-aged and elderly are writing down their wishes in order to make it easier for their families at their death. Such a book may be called endingu noto, translated to “book for final notes.” One version can be translated to “Notes on Preparations for Old Age.” Most of the planning books offer several options for each question, so all the person needs to do is check off his or her choices; or in some instances fill in the blanks, such as “Who do you want to care for you should you develop senile dementia or become bedridden?” Several of the planning books are being published by organizations; some also offer information on end-of-life choices. Planning books might cover anything from medical and nursing care, funeral arrangements, location of personal information and keepsakes, and details of childhood and relatives. In the United States, the FUNERAL CONSUMERS ALLIANCE provides members with a free end-of-life planning kit, Before I Go, You Should Know; nonmembers can purchase for $10. Hasegawa, Toshiko. “‘Final Notes’ Catching On.” The Yomiuri Shimbun, December 24, 2003.
plays about end-of-life issues Drama, from fullscale plays to exercises in role-playing and scenic improvisations, is proving an increasingly popular and useful tool for teachers of medical humanities, as well as for grief counselors. As Ballard et al. explain, “Death and dying have been central to drama from antiquity: a play that deals with such a subject speaks to all who must confront the death of patients, the death of loved ones, and their own eventual death—it speaks, in other words, to everyone.” According to Robert Salinas, who has used a short play to educate older Hispanics about end-oflife care issues, “Storytelling is important for this community.” Advanced directives and hospice care can be explored and explained through drama to
groups, such as Hispanics, who object to them without understanding them completely. Ballard, James O., Theodore Blaisdell, and Anne Hunsaker Hawkins, editors. Time to Go: Three Plays on Death and Dying, with Commentary on End-of-Life Issues. Philadelphia: University of Pennsylvania Press, 1995.
poetry as therapy for the dying
Although the ancient Greeks are credited with connecting the importance of words and feelings to both poetry and healing, it was not until the 1960s that poetry therapy began to be formally recognized and practiced worldwide in numerous settings, including hospitals and hospices. The reading or writing of poetry can help the dying person who is anxious or fearful about death communicate feelings he or she might not otherwise be able to express. Doctor and Kahn explain that poetry helps the individual uncover and release emotions and thus reduce those anxieties and fears. “In reading poetry, the individual realizes that someone else feels as he does; he feels less alone. Making up poetry gives an individual a chance to express ideas in an indirect manner.” Poetry therapy is used along with other forms of therapy. The term poetry therapy is often replaced with bibliotherapy to broaden the genres available for use by therapists. The National Association for Poetry Therapy Web site is located at http://www.poetrytherapy.org/. See also MUSIC THERAPY FOR THE DYING.
Doctor, Ronald M., and Ada P. Kahn. “poetry as therapy for anxiety,” in The Encyclopedia of Phobias, Fears, and Anxieties, Second Edition. New York: Facts On File, 2000. Mazza, Nicholas. “Poetry Therapy: Interface of the Arts and Psychology.” Boca Raton, Fla.: CRC Press, 1999.
poetry on death and dying
This theme often separates major poets from minor ones. Other factors, such as length and quality of work, enhance the distinction; but, at least occasionally, the majority of major poets write about matters of gravity. Death intrigues people. Although its mystery cannot be fully explained, resolutions can occur as poets compare the unknown to the known, metaphorically
212 posthumous reproduction approaching death from many angles, backgrounds, and beliefs. For example, 17th-century English poet John Donne personified death in “Holy Sonnet 10,” using the word as a proper name as though calling Death out for a duel in the opening line, “Death, be not proud.” Similarly, 19th-century American poet Emily Dickinson addressed death as a person in ballad #712, which begins, “Because I could not stop for Death—He kindly stopped for me.” Besides offering insight, this treatment of death as a mere mortal helps the poet—and, consequently, the reader—grasp the weighty subject by making it, or rather, him, more manageable. To get a closer grip, 20th-century poet Randall Jarrell attempted to enter the experience of death by writing “The Death of the Ball Turret Gunner” in first person. Using shock as a technique appropriate to the topic, the poet ends by flatly stating: “When I died, they washed me out of the turret with a hose.” Other poets handle death more subtly. For example, in “Home Burial,” 20th-century poet Robert Frost uses an episode of a story to show the devastating effects an untimely death can have on a relationship. Another poem by Frost, “Acquainted with the Night,” does not depict a leisurely walk after dark so much as the emotions evoked by death and the awareness of time advancing toward the inevitable moment when it stops. Conversely, some poets consider death by reflecting on life. For example, 19th-century English poet, William Wordsworth notes the grief that occurs as people exchange childhood wonder for adult worries, darkened by the consciousness of death. In “Ode: Intimations of Immortality from Recollections of Early Childhood,” Wordsworth begins with his premise that “The Child is Father of the Man. . . .” Subsequent lines recall the innocence children experience before becoming mindful of their mortality. Then verse X reveals the poet’s resolution to “. . . grieve not, rather find/ Strength in what remains behind,” particularly since, “. . . nothing can bring back the hour/ Of splendor in the grass, of glory in the flower.” Without a resolution or means of acceptance, though, a poet may take an opposing attitude, as did Dylan Thomas in “Do Not Go Gentle into that Good Night.” Keeping his own emotions restrained with the formal pattern of a
villanelle, Thomas urged his gravely ill father to “Rage, rage against the dying of the light.” When death does occur, poets sometimes use the occasion as a final tribute to a person, as W. H. Auden did in the poem, “In Memory of W. B. Yeats.” Such poems reveal the impact of loss, not only for the poet but also for all individuals who have lost someone important to them. Regarding one’s own demise, however, contemporary poet Richard Wilbur offers “Advice to a Prophet.” After warning the seer not to bother to “scare us with talk of the death of the race,” Wilbur expresses what readers may not have realized they also feel until the poem speaks its apt and ageless truth: “How should we dream of this place without us.”
posthumous reproduction
Conception after the death of the male or female biological parent through techniques such as the use of gametes (single mature reproductive cells) that have been stored during his or her lifetime or that were collected immediately after his or her death. Posthumous reproduction first became possible when semen could be frozen and used for artificial insemination. Now the potential for cryopreservation of ova may extend the options for posthumous reproduction, but with the added requirement of a “surrogate” uterus for gestation to achieve a pregnancy. In addition, embryos obtained while a couple is alive can be frozen for later use by them, but could be used for transfer to establish a pregnancy after either the female or male partner or both are deceased. Although posthumous sperm “harvesting” has been possible since 1980, the first publicly admitted postmortem sperm procurement pregnancy was not reported until 1998. Such advances in posthumous reproduction have raised ethical, practical, and legal questions. As Batzer et al. conclude, “Posthumous sperm procurement is fraught with ethical dilemmas, including informed consent, privacy, inheritance, and child welfare.” A statement developed by the American Society for Reproductive Medicine’s Ethics Committee cautions that “The legal and social status of a child born from these origins has been ambiguous at best, even if the insemination and pregnancy occur with the
postmortem examination 213 wife of the dead man. Since the role of assisted reproduction has not been well factored into common law or social and ethical judgments, a child born from conception and pregnancy after a man’s death may not always be attributed to him for purposes of inheritance and legitimacy.” To help circumvent potential problems, Soules suggests, “In circumstances where death is imminent, possible, or probable, explicit consent can be executed for disposition of these reproductive tissues after death. The options for disposition could include: (1) disposal, (2) donation to research, or (3) use by a specific individual (spouse) for posthumous reproduction.” American Society for Reproductive Medicine. “Posthumous Reproduction.” Available online. URL: http:// www.asrm.org/Media/Ethics/posthum.html. Downloaded January 13, 2004. Batzer, F. R., J. M. Hurwitz, and A. Caplan. “Postmortem Parenthood and the Need for a Protocol with Posthumous Sperm Procurement.” Fertility and Sterility 79, no. 6 (June 2003): 1263–1269. Soules, Michael R. “Posthumous Harvesting of Gametes— A Physician’s Perspective” Journal of Law, Medicine & Ethics 27, no. 4 (1999): 362–365. Strong, Carson. “Consent to Sperm Retrieval and Insemination after Death or Persistent Vegetative State.” Journal of Law and Health 14, no. 2 (June): 243–269.
postmortem examination
Often referred to simply as a postmortem; also called AUTOPSY. An examination and dissection of a dead body to determine cause of death or the changes produced by disease. Welsh and Kaplan have stressed the importance of postmortem examinations: Historically, the postmortem examination was an indispensable diagnostic tool. Despite recommendations by the American Medical Association to continue performing autopsies, many physicians and medical institutions fail to recognize its utility in modern medicine, and autopsy rates have decreased to unacceptably low levels. In academic settings, requesting consent for autopsies is the responsibility of residents, who often lack the skills necessary to approach the grieving family, request
consent, and follow up the autopsy results. Additionally, the information obtained at autopsies is often unused or is unavailable to families and clinicians. In order to improve the autopsy rate and enhance its clinical and educational benefits, the training of residents must be structured to emphasize the postmortem examination and to develop a standardized means of communication among clinicians, pathologists, and families.
In 1970, hospitals conducted routine autopsies on about half of all deaths. Today, the national average has fallen to less than 6 percent, according to a 2003 report by the federal Agency for Healthcare Research and Quality. Among the reasons cited for the drop in postmortem exams: increased use of CT scans and MRIs prior to death, which yield some of the same information as autopsies; fear of litigation for medical errors found during the autopsy; a MANAGED CARE system focused on reducing costs; young doctors who have not attended an autopsy and are thus not familiar with all of the benefits. Some authors have blamed the reduction on the fact that “no one wants to pay for them.” Steigman explains: Third-party payers do not directly reimburse either hospitals or pathologists for autopsies. Medicare Part A (Hospital Insurance Program) makes no specific provisions for financing the autopsy. Autopsies are viewed as an overhead expense, and payment is bundled into hospital payments. Medicare Part B (Supplementary Medical Insurance for Physician Services) excludes reimbursement for pathologists because autopsies are not considered a service related to the diagnosis and treatment of a given patient.
According to Thunder, “Elderly people are much less likely to be the subject of autopsies than younger patients, although the evidence is that autopsies reveal diagnostic errors in the elderly (over age seventy) to occur twice as often as with younger patients (under age seventy).” It is also against the religious conviction of many cultures to submit to autopsies unless required by law (such as in the case of homicides), including the Muslim and Jewish faiths. Many believe the body must be intact and as unblemished as possible for
214 potlatch the spirit’s journey through reincarnation or rest. In some cultures, handling of the dead body and the timing of funeral practices may place some constraints on postmortem exams. The cost of a postmortem exam varies according to the type of autopsy circumstances—natural death, accidental death, suspected medical malpractice, and homicide, for example. Autopsy cost estimates range from approximately $500 to $3,500, dependent on whether a complete or partial (restricted) autopsy is performed. With few hospitals providing autopsies, families wanting to know more specifics and answers to their questions about a loved one’s death are now turning to private companies. The average, private, postmortem exam costs $3,250 in California, according to Thompson. Steigman, Carmen K. “The Autopsy as a Quality Assurance Tool: Last Rites or Resurrection?” Medical Laboratory Observer. Available online. URL: http://www. mlo-online.com/articles/mlo0502autopsy.htm. Downloaded March 13, 2004. Thompson, Mariko. “Final Exams.” Los Angeles Daily News, March 7, 2004. Thunder, James M. “Quiet Killings in Medical Facilities: Detection & Prevention.” Issues in Law & Medicine 18, no. 3 (March 22, 2003): 211+. Welsh, T. S., and J. Kaplan. “The Role of Postmortem Examination in Medical Education.” Mayo Clinic Proceedings 73, no. 8 (August 1998): 802–805.
potlatch Native Alaska ceremonial feast. Waterbury explains that traditional Tlingit potlatches were the culmination of a series of funeral rituals and ceremonies. Custom dictated a wake, cremation, and post-cremation feasts. All ceremonies, including the finale—the potlatch feast—served to strengthen the alliance between the clan of the deceased and the living spouse’s lineage. Several early potlatch traditions have carried through to modern times. One year after the death of a Tlingit, family members may elect to host a potlatch in that person’s honor. Following a solemn beginning of memorial songs and speeches, the potlatching gets under way. As in the old days, favorite foods of the deceased are served, and also given as gifts for guests to take home. Other
gifts include the customary blankets, and money to those who helped with the services. Dancing and singing continue to be major potlatch activities. If the deceased was a dignitary, people may travel from neighboring towns for the ceremony. Waterbury, Barbara. “Potlatches.” Alaskan. Available online. URL: http://www.alaskan.com/docs/potlatch. html. Posted 1987.
potter’s field
A public place set aside for the burial of indigents, unknown persons, and criminals; the name is attributed to a field south of Jerusalem, mentioned in the Bible as having been bought as a burial ground for strangers with the money that was given to Judas for betraying Jesus Christ. Many of the original potter’s fields in American cities have since been used to erect city buildings or for parking lots or golf courses. During the 1800s and early 1900s, towns usually had the authority to set up poorhouses or asylums for the poor, mentally ill, and infirm, and it was common for each poorhouse (almshouse) or asylum to have at least one potter’s field, because it was cheaper to bury deceased residents close by than to buy grave sites in other cemeteries. Many potter’s fields became overgrown, the wooden grave markers deteriorated, and the burial grounds forgotten; only recently has urban growth rediscovered these fields in some areas, leading to monuments and sometimes reburial of the remains.
power of attorney A legal instrument that is used to delegate legal authority to another. The person who signs (executes) a power of attorney is called the Principal. The power of attorney gives legal authority to another person (called an Agent or Attorneyin-Fact) to make property, financial, and other legal decisions for the Principal, and is frequently used to help in the event of a Principal’s illness or disability. A health care power of attorney is called a DURABLE POWER OF ATTORNEY or HEALTH CARE PROXY.
prearrangement of funerals
In recent years there has been an increasing trend toward Americans making funeral arrangements in advance of their
preparatory grief 215 deaths, also called preneed and often done to spare survivors the stress of making these decisions under the pressure of time and strong emotions. The preplanning may be limited to designating funeral preferences, or may involve actual arrangements with a funeral service provider, and sometimes even payment for them in advance. A 1999 American Association of Retired Persons (AARP) survey of 2,591 Americans age 50 and older found that 29 percent of those arranging a funeral discovered that some details of the funeral they arranged had been planned and paid for in advance. An earlier survey sponsored by the Funeral and Memorial Information Council in 1995 had shown 24 percent of all American adults prearranging at least some of the details of their own funeral or burial. Many people today see funeral planning as an extension of will and estate planning. Arrangements may be made directly with a funeral establishment or through a funeral planning or MEMORIAL SOCIETY. The Federal Trade Commission (FTC) suggests that people prearranging funerals put their preferences in writing, give copies to family members and their attorney, and keep a copy in a handy place. It is not wise to designate funeral preferences in one’s will, because a will often is not found or read until after the funeral. Also to be avoided is putting the only copy of funeral preferences in a safe deposit box, because family members may have to make arrangements on a weekend or holiday, before the box can be opened. Millions of Americans have entered into contracts to prearrange their funerals and prepay some or all of the expenses involved. According to data from the National Funeral Directors Association, more than $50 billion is held in escrow in pre-need plans. Laws of individual states govern the prepayment of funeral goods and services; various states have laws to help ensure that these advance payments are available to pay for the funeral products and services when they are needed. But protections vary widely from state to state, and some state laws offer little or no effective protection. Some state laws require the funeral home or cemetery to place a percentage of the prepayment in a state-regulated trust or to purchase a life insurance policy with the death benefits assigned to the funeral home or cemetery.
The FTC says it is important to consider the following issues before prepaying for funeral services: • What are you are paying for? Are you buying only merchandise, like a casket and vault, or are you purchasing funeral services as well? • What happens to the money you have prepaid? States have different requirements for handling funds paid for prearranged funeral services. • What happens to the interest income on money that is prepaid and put into a trust account? • Are you protected if the firm you dealt with goes out of business? • Can you cancel the contract and get a full refund if you change your mind? • What happens if you move to a different area or die while away from home? Some prepaid funeral plans can be transferred, but often at an added cost.
pregnancy loss
See ABORTION; MISCARRIAGE.
preparatory grief
As introduced by KÜBLER-ROSS in On Death and Dying, preparatory grief is “that [grief that] the terminally ill patient has to undergo in order to prepare himself for his final separation from this world.” Periyakoil and Hallenbeck note that preparatory grief is the normal grief reaction to perceived losses experienced by persons who are dying; also described as episodes of sadness. Conventional symptoms of depression (e.g., frequent crying, weight loss, thoughts of death) in patients who know they are dying are also present in preparatory grief and are a part of the normal dying process. Preparatory grief is experienced by virtually all patients who are dying and can be helped with psychosocial support and counseling. Periyakoil and Hallenbeck stress that differentiating between preparatory grief and depression is essential because of therapeutic implications. See also ANTICIPATORY GRIEF. Periyakoil, Vyjeyanthi S., and James Hallenbeck. “Identifying and Managing Preparatory Grief and Depression at the End of Life.” American Family Physician 65, no. 5 (March 1, 2002): 883–890, 897–898.
216 preservation techniques preservation techniques
See
CRYONICS; EMBALM;
MUMMIFICATION.
prison deaths
See INCARCERATION OF TERMINALLY ILL.
probate
A legal process that usually involves filing a deceased person’s will with the local probate court, taking an inventory and getting appraisals of the deceased’s property, paying all legal debts, and eventually distributing the remaining assets and property. This process can be costly and timeconsuming. Many states have simplified probate for estates below a certain amount, but that amount varies among states. If an estate meets the state’s requirements for “expedited” or “unsupervised” probate, the process is faster and less costly.
Project GRACE GRACE is an acronym for Guidelines for Resuscitation And Care at End-of-life. Project GRACE is a nonprofit organization dedicated to promoting education directed to advanced care planning and end-of-life issues for community and medical professionals. They have developed and tested an Advanced Care Plan Document designed to allow a person to be specific in his choices to cover common end-of-life scenarios that most concern citizens. The Advanced Care Plan Document is designed to be legally binding to physicians. A copy of this document is in Appendix 1 and is also available for overview and download through their Web site at http://www.pgrace.org.
Project on Death in America A project on the epidemiology, ethnography, and history of dying and bereavement in America. Funded by the Soros Foundation Network, the project brought together resources for those researching end-of-life issues. The mission of the Project on Death in America was to understand and transform the culture and experience of dying and bereavement through funding initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy. The project recognized the
enormous opportunities in the United States to improve the way seriously ill people and their families are cared for, and worked to promote frank discussion about the dying process and to alleviate unnecessary suffering. Through the work of Project on Death in America grantees, palliative care has gained prominence on the public agenda. The project ceased making grants in December 2003, but the program continues working to make sure that the progress it spearheaded continues.
Promoting Excellence in End-of-Life Care
A national program office of the Robert Wood Johnson Foundation, established in 1997, which provided grants and technical support to innovative programs and projects of national significance in the field of palliative care. Programs were primarily chosen for their likely ability to substantially improve the quality of care for terminally ill people and their families across a full range of clinical settings. Promoting Excellence in End-of-Life Care was dedicated to improving health care for dying persons and their families through innovative demonstration projects addressing particular challenges to existing models of hospice and palliative care. The director was Ira Byock, M.D., a longtime hospice and palliative care physician, and author of Dying Well (Riverhead/Putnam, 1997). The program was to end in 2005.
Protestantism and death Europeans such as Martin Luther and John Calvin founded Protestantism during the religious revolution (or Reformation) that took place in Western Europe in the 16th century. Protestants originally differentiated themselves from other Christians by accepting the Bible (as opposed to the Pope) as the only source of infallible truth. Protestantism as a general term is now used to differentiate from the other major Christian faiths: Roman Catholicism and Eastern Orthodoxy. Present-day Protestant sects include Baptists, Methodists, Lutherans, Presbyterians, Episcopalians, and Pentecostals. Protestant funeral customs vary somewhat according to specific religion and geographic region, but generally are tailored to the wishes of the
psychedelics 217 deceased and his or her family. Ministers may attend the dying to pray and ease the process. Most Protestants are embalmed by morticians, dressed in their best “church” clothes, and laid in caskets, although a growing number are opting for cremation. It is common for the family to host a visitation period, frequently the evening prior to the funeral, where friends, community, and co-workers can pay their respects to the deceased and give their condolences to the family. The casket may be open or closed depending on the family’s wishes. Guests are not expected to stay for the duration of the viewing. The funeral usually occurs within three days of the death. Protestant ceremonies usually include scripture lessons that relate to death and the Christian concept of resurrection. Services are meant to comfort the family and guests while also celebrating the life of the deceased. The minister often emphasizes the promise of life after death as a reassurance to the bereaved. The service may also include prayers, a sermon, and a group reading or singing of hymns. A close friend or family member may offer a eulogy in appreciation for the deceased’s life. The casket is usually closed during the actual funeral service, but placed at the front of the church. Those attending a Protestant service often send flowers or gifts as an expression of their concern and feelings, although it is not uncommon today for the family to request a donation to a specific medical entity or other charitable organization in lieu of flowers. Following the church service, close friends and relatives will usually follow the hearse in a procession to the cemetery for brief graveside services, which may include a few prayers and perhaps a song. Often, a few symbolic handfuls of dirt will be placed on the coffin, with the actual burial being done by cemetery personnel after the family and friends leave. The family often hosts a gathering following the funeral. The purpose of the gathering is to share memories of the deceased that help the family deal with their grief. Food is often sent or delivered in person to the family’s home. Selected Independent Funeral Homes. “Funeral Services by Religion.” Available online. URL: http://www.nsm. org/guides/religions.html. Downloaded December 20, 2003.
proxy for health care decisions
See HEALTH CARE
PROXY.
psychedelics
Also known as hallucinogens, illusionogenics, psychotomimetics, psychotogenics, mind-expanding drugs, mind-manifesting drugs. Drugs that act on the central nervous system and cause mood changes and perceptual changes varying from sensory illusion to visual and auditory hallucinations. They are classified as Schedule I drugs under the Controlled Substances Act, and include LSD, mescaline, peyote, DMT, psilocybin, and marijuana or THC (tetrahydrocannabinol). Psychedelics have been used experimentally in Europe and the United States to ease the process of dying. Grinspoon and Doblin explain, “Psychedelic drugs have been used to ease the pain, anxiety, and depression of the dying. Beginning in 1965, the experiment of providing a psychedelic experience for the dying was pursued at Spring Grove State Hospital in Maryland and later at the Maryland Psychiatric Research Institute. When patients received LSD or another psychedelic drug, dipropyltryptamine (DPT), after appropriate preparation, about one-third improved dramatically, one-third improved moderately, and one-third were unchanged according to the criteria of reduced tension, depression, pain, and fear of death. The drug session was designed as a part of a process of reconciliation— reconciliation with one’s past, one’s family, and one’s human limitations. These studies employed no control groups, so it is not possible to separate with certainty the effects of the drug from those of the therapeutic arrangements that were part of the treatment. But the case histories reported in this work are impressive, and it would seem worthwhile to renew the research.” Marijuana has also been used as an appetite stimulant in treatment of the dying, especially for patients suffering from HIV, the AIDS wasting syndrome, or dementia. An article in The New York Times magazine by Michael Pollan (July 20, 1997) told the story of a San Francisco district attorney who was dying from wasting syndrome—a metabolic disorder connected with AIDS where patients lose fat and muscle tissue rapidly and literally waste away. The DA told Pollan, “I saw myself in
218 psychics the mirror literally coming back to life” as a result of treatment that included smoking marijuana to stimulate his appetite. A 1991 Harvard study found that 44 percent of oncologists had previously advised marijuana therapy to their patients. Fifty percent responded they would do so if marijuana were legal. Grinspoon, Lester, and Rick Doblin. “Psychedelics as Catalysts of Insight-Oriented Psychotherapy.” Social Research 68, no. 3 (Fall 2001): 677–695. Lazerus, June, and Robert Lazow, editors. “hallucinogens,” in The Encyclopedia of Understanding Alcohol and Other Drugs: Vol. I, by Robert O’Brien, Morris Chafetz, M.D., and Sidney Cohen, M.D. New York: Facts On File, 1999.
psychics Also called mediums, persons considered or claiming to have psychic powers. Many psychics claim to be able to talk to the dead, because, they say, our loved ones who have passed over are not really dead, just on another spiritual plane. According to a 2001 Gallup poll, 28 percent of Americans (up 10 percent from 1990) believe that people can hear from or communicate mentally with the dead. See also AFTER-DEATH COMMUNICATION. Barrett, Greg. “Can the Living Talk to the Dead?” USA Today, June 20, 2001.
psychotherapy with the dying Sometimes referred to as “talk” therapy, psychotherapy is a treatment method in which the therapist and patient work together through verbal communication to help the patient acquire greater human effectiveness or modify feelings, conditions, attitudes, and behavior that are emotionally, intellectually, or socially ineffectual or maladjustive. Psychotherapy is used to treat depression in the terminally ill. Growth House, Inc., which provides information and referral services for agencies working with death and dying issues, writes, “The professional literature often does not make enough distinction between psychosocial care and psychotherapy. Most professional caregivers are primarily concerned with
psychosocial care rather than exploration of the mind. The primary goals of psychotherapy with dying people are to help people understand the complex psychic activity they are experiencing, to help them see how these unseen forces affect conscious behavior, and to help them achieve the highest possible level of mindful self-awareness and centered presence prior to death.” Growth House, Inc. “Psychotherapy with Dying People.” Available online. URL: http://www.growthhouse.org/ therapy.html. Downloaded December 20, 2003.
purgatory In Catholic doctrine, a place or state of suffering inhabited by sinners, whose souls go there at the time of death in order to make amends for their sins before going to heaven. It has traditionally been viewed as a place of torment. Gregory the Great wrote “that the pain be more intolerable than any one can suffer in this life.” The purpose of this pain is to purify the individual. Eventually, the person will be cleansed and be eligible to be transferred to Heaven.
pyramids Tombs built by the ancient Egyptians to protect the pharaoh and his queen’s bodies. The pyramid was a symbol of hope, because it would ensure the pharaoh’s union with the gods. The pyramids comprised many different shapes and sizes from before the beginning of the Old Kingdom (2686 B.C.E. to 2181 B.C.E.) to the end of the Middle Kingdom (2055 B.C.E. to 1650 B.C.E.). The most well-known of these pyramids was built for the pharaoh Khufu (his Greek name was Cheops) and is known as the “Great Pyramid.” Pyramid Texts are funerary texts painted and inscribed inside a number of Old Kingdom pyramids. The texts are made up of nearly 800 spells, which are sometimes called utterances because it is believed that they were uttered by priests in the course of the royal mortuary rituals. The purpose of these spells was to secure the king’s proper burial and safe passage into the afterlife. See also EGYPTIANS, ANCIENT.
Q Steinhauser, Karen E., Elizabeth C. Clipp, and James A. Tulsky. “Evolution in Measuring the Quality of Dying.” Journal of Palliative Medicine 5, no. 3 (June 2002): 407–414. Witham, Larry. “Americans Gain Concern for Quality of Dying.” Washington Times, July 24, 1997.
quality of dying and death
Defined by Patrick et al. as “the degree to which a person’s preferences for dying and the moment of death agree with observations of how the person actually died, as reported by others.” Terminal illness can be associated with pain, suffering, and stress for the patient and painful memories for the family, a circumstance that has achieved the prominent attention of the medical community in recent years. Steinhauser et al. note, “Despite multiple efforts to improve the experience for dying patients, researchers still struggle to identify appropriate outcome measures that assess patients’ and families’ experiences. If health care systems are to provide excellent, compassionate care to dying patients and their families, there must be a valid means of assessing the quality of those experiences and interventions to improve care.” In their proposed model for evaluating quality of dying and death, Patrick et al. considered six areas: symptoms and personal care, preparation for death, moment of death, family, treatment preferences, and whole person concerns. Similarly, Kayser-Jones considered the following as key areas for evaluation: adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationship with loved ones. See also GOOD DEATH.
quality of life
The value or the meaning that life has for an individual. Quality of life has received increasing attention in health care decision making since technology has become available to keep people alive for longer periods of time. Although quality of life is usually discussed separately from quality of death in scientific literature, Leichtentritt and Rettig concluded from their study that they are mutually inclusive. “The process of making an end-of-life decision that gives the individual the right to choose some of the elements associated with his or her dying process made the connection between these concepts stronger. As a result, quality of life cannot be addressed separately from quality of death.” Erlen writes, “Quality of life is a subjective judgment that is best made by the person who is living that life. That individual is the best person to say that living is no longer desirable. Quality and meaning of life are personal, contextual, and multidimensional terms. Therefore, individuals have to be as precise as possible when describing what quality of life is to them.” According to Bradley et al., quality of life is dynamic at the end of life and the components that make up quality of life may shift, making some more important than others, depending on how close one is to death. They note that some of the components of quality of life—such as religiosity, communication, and control, which have been less
Kayser-Jones, J. “The Experience of Dying: An Ethnographic Nursing Home Study.” The Gerontologist 42, Suppl. III (October 1, 2002): 11–19. Patrick, Donald L., Ruth A. Engelberg, and J. Randall Curtis. “Evaluating the Quality of Dying and Death.” Journal of Pain and Symptom Management 22, no. 3 (September 2001): 717–726.
219
220 quilts studied than physical symptoms and functioning— may be particularly important as death becomes imminent. “Much of the literature concerning religiousness and spirituality in the end of life implies that religious beliefs provide comfort, meaning, a sense of continuity, and a better quality of life for terminally ill individuals.” Emphasizing the importance of PAIN MANAGEMENT to quality of life, Erlen notes that “Suffering is linked to pain and quality of life. Individuals who are suffering and therefore whose personal integrity is threatened may state that their quality of life has been diminished.” HOSPICE plays an important role in helping manage pain and increasing individuals’ quality of life during the last months of their lives. In his 1999 testimony before the U.S. House of Representatives Committee on Government Reform, Ira R. Byock, a pioneering physician in hospice and palliative care, stated, “What we currently lack is a firm commitment on the part of the health care system to bring the power of medicine to bear in service of comfort and quality of life. PALLIATIVE CARE can be provided earlier in the course of a person’s illness. By managing symptoms, helping people address the difficult, but normal, psychosocial and spiritual concerns they may have and assisting with coordination of medical care and support services, including transportation and housekeeping, palliative care can dramatically improve the quality of life for the patient and his or her family.” Bradley et al. agree, stating, “Efforts to provide answers to fundamental questions surrounding quality of life, can help further shape clinical practice and research to benefit terminally ill patients and their families in the future.” Bradley, Elizabeth H., et al. “Quality-of-Life Trajectories of Elders in the End of Life,” in Annual Review of Gerontology and Geriatrics, Volume 20, Focus on the End of Life: Scientific and Social Issues. New York: Springer Publishing Company, 2001. Erlen, Judith A. “Issues at the End of Life.” Orthopedic Nursing 15, no. 4 (July-August 1996): 37–41. Leichtentritt, Ronit D., and Kathryn D. Rettig. “Values Underlying End-of-life Decisions: a Qualitative Approach.” Health and Social Work 26, no. 3 (August 2001): 150–159.
quilts Throughout much of America’s history, handmade quilts have played an important role in dealing with the deaths of its citizens, from being used to lay out the deceased for viewing, to memorializing sailors lost at war. Before the advent of professional FUNERAL PARLORS/HOMES and their professionally prepared floral casket covers, it was common for a familiar family quilt to cover the casket during pre-burial services. Not only did the quilts provide feelings of comfort for the bereaved; they also became important family heirlooms because of their connection to deceased family members. On the wagon trains traveling west, when a person died, often no wood was available to build a casket; frequently a family quilt substituted for the casket, with the body wrapped in the quilt and buried in it. Following a death in the 19th century, it was common for the woman in the family to sew a mourning quilt during the requisite period of seclusion for deep mourning—as long as six months for a child or sibling and two years for a husband. Cummings explains, “During this time she would sew and quilt a cover, often using pieces cut from the deceased’s clothing—even from the burial clothes.” Mourning pictures were painted or embroidered in silk, cotton, or wool and served as remembrances of the deceased. These mourning quilts often traced the deceased’s life from birth to death. The completed quilt became a comforting memory. During wartime and national tragedy, memorial quilts have long helped the bereaved nation heal, with communities together, as well as individuals, sewing quilts in memory of soldiers and regular citizens who have died in large numbers. The AIDS Memorial Quilt, begun in 1985, has served as both a poignant memorial and an educational tool, and is the largest ongoing community arts project in the world. Each of the more than 44,000 colorful panels in the Quilt memorializes the life of a person lost to AIDS. Following the terrorist attacks of September 11, 2001, many community and personal quilts were sewn and sent to the Pentagon; they have since been exhibited around the country. Among the comments from the senders: “Many of the groups do the sewing together and talk about what happened, so a lot of emotions go into each stitch.”
Quinlan, Karen Ann 221 The memorial quilt tradition continues with Marine Comfort Quilts, which accepts donated quilt squares, material, and money in order to make a comfort quilt for the next of kin of all servicemen and women lost overseas in Operation Iraqi Freedom, regardless of which branch of the Armed Forces they served. Their Web site is at http:// www.marinecomfortquilts.us Cross, Mary Bywater. Treasures in the Trunk: Quilts of the Oregon Trail. Nashville: Rutledge Hill Press, 2000. Cummings, Mary Ellen. “Mourning Quilts a Continuing Family Record.” The Emmitsburgh Dispatch, March 2003. Fox, Sandi. For Purpose and Pleasure: Quilting Together in Nineteenth-Century America. Nashville: Rutledge Hill Press, 1995.
Quinlan, Karen Ann (1954–1985)
A symbol of the RIGHT-TO-DIE DEBATE, the 21-year-old Karen Ann Quinlan, of Morris County, New Jersey, collapsed after swallowing large quantities of alcohol and tranquilizers at a party in 1975. Doctors saved her life, but she suffered respiratory arrest that left her
in a PERSISTENT VEGETATIVE STATE, unable to breathe without a mechanical respirator and unable to eat without a feeding tube. Her family undertook a prolonged legal battle in which they argued that their daughter would not have wanted to be kept alive in this condition with no hope of recovery. They were opposed by the hospital, doctors, the county prosecutor, and the New Jersey attorney general. Initially their request to have the respirator removed was denied, but their appeal to the New Jersey supreme court overturned the lower court ruling, largely due to Quinlan’s right to privacy, which was asserted in her behalf by her family. She was subsequently weaned from the respirator, but she did not die as expected. Quinlan was transferred from the hospital to a nursing home, where she remained in a coma, fed through tubes, until she died in July 1985, 10 years later. Only five states had right-todie legislation prior to Karen Ann Quinlan’s case but afterward, 50 bills appeared in 38 states; in eight, they were signed into law. Evans, Glen, Norman L. Farberow, and Kennedy Associates. “Quinlan, Karen Ann,” in The Encyclopedia of Suicide, Second Edition. New York: Facts On File, 2004.
R tribes are reluctant even to talk about the dead, let alone deal with their bones. They believe once the dead are buried, there’s no process for reburial. Many of these cultures believe you can get spiritually ill from (contact with) dead bodies.”
reburial
Reburial of remains can occur for several reasons: to move a body from the original grave to a subsequently acquired family plot in the same or another cemetery; repatriation from another country where death occurred in order to be buried along with other family; for transfer from one cemetery scheduled for development to another; or due to court orders requiring further forensic examination. Among the more recent examples of largescale reburials:
• According to funeral directors, an increasing number of Asian immigrants are moving the ashes or bones of their loved ones, buried in Asia, to their new homeland for reburial. Jablon writes, “The graves—sometimes carefully chosen with an eye to feng shui principles of location and design—are appearing around the country, most often in big cities like Los Angeles, San Francisco or New York, where many Asians have settled.”
• The remains of more than 400 colonial-era slaves and freed Africans, unearthed by construction workers in 1991 as work began on a new federal building in Lower Manhattan, were reburied on October 4, 2003, at the African Burial Ground, a patch of land in southern Manhattan that is the largest and oldest known cemetery for freed and enslaved blacks.
Jablon, Robert. “For Love and Feng Shui, Asian Immigrants Bringing Ancestors to U.S. for Reburial,” AP Worldstream News Service, August 12, 2002. Marcia, Michelle. “Slavery’s Past Coming to Rest in N.Y.” The Washington Post, October 4, 2003. O’Driscoll, Patrick. “Law to Return Indian Remains Bogged Down.” USA Today, March 9, 1998.
• Years after Congress ordered the repatriation of Native American remains, through the NATIVE AMERICAN GRAVE PROTECTION AND REPATRIATION ACT, conflicts continued both outside and within Native American tribes. Some groups, such as Native Hawaiians and Northern Plains Indians, were aggressive in working through the labyrinth of government bureaucracy to retrieve and rebury bones of their ancestors. Others, according to O’Driscoll, have resisted the reburial initiative. “While many tribes aggressively demand the bones of their ancestors, some shy away. In southeastern Alaska, the Tlingit tribe’s ancestors traditionally cremated the bodies of all but their shamans, or medicine men. Now museums that hold remains from Tlingit territory find the tribe is reluctant to take them back because of the power that those shamans had. Many Southwest
records needed at death
When a person dies, the family will need quick and easy access to records that yield key information about that person. Experts recommend for everyone, but especially the elderly, that several family members be aware of the location and details of the following records: • Insurance policies, including companies, numbers, contact information for agents • Wills, including contact information for attorney • Trust documents • Tax returns
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224 reincarnation • Investments, including account numbers and contact information for brokers • Banking records, including names of banks and account numbers • Credit cards • Safe deposit box location, number, and key • Prepurchased cemetery plots or funeral arrangements • Social Security number and Medicare card • Mortgages, including account number, amount of debt, and contact information for mortgage holders
reincarnation
The belief that each person possesses a soul independent of the body, which can be reborn into another body. Some have described it as the belief that each of us is born again and again in a life cycle. Certain religions, such as Buddhism and Hinduism, believe in reincarnation. Because of this belief, Hindus feel that a Hindu funeral should be as much a celebration as a remembrance service. But Takashi cautions that Buddhist beliefs in this area are often misrepresented, that transmigration of the soul definitely does not exist in Buddhism. “The common misunderstanding is that a person has led countless previous lives, usually as an animal, but somehow in this life he is born as a human being and in the next life he will be reborn as an animal, depending on the kind of life he has lived.” Rather, it is the belief in the preexistence of the soul before birth, or its independent survival after death, that is taught. In some cultures, the belief that reincarnation involves getting back, in another person’s body, the person who died, helps ease the difficulty of dealing with death. As a Nigerian states in the University of Texas Daily Texan, “It makes things much easier if you view a person as not dead, but as incarnated in the body of a relative.”
Madkom, Raska. “Life’s End Is Not End of Life for Many Cultures, Religions.” Daily Texan, November 6, 2002. Takashi, Tsuji. “On Reincarnation,” Buddhist Studies. Available online. URL: http://www.buddhanet.net/ e-learning/reincarnation.htm. Downloaded December 25, 2003.
relics Body parts of deceased holy persons or saints (also their belongings) preserved and kept as an object of reverence. Containers holding such relics are called reliquaries.
remembrance services
Spiritual rather than religious services that provide an opportunity for families, friends, and communities to celebrate those whose memory they wish to honor. Often remembrance services are held on anniversaries of deaths or tragedies, but today private remembrance services are replacing traditional funerals because they allow both family and friends the time and freedom to fashion a tribute to a life lived, rather than focus on a liturgical formula of a life’s ending. In place of Bible readings and homilies, there are poems and personal tributes. See also MEMORIAL SERVICE.
representation of death and dying in media As several sociologists have noted, one of the ways in which today’s societies learn to understand death, dying, and bereavement, as well as how to behave when dealing with these life moments, is through media representations and interpretations of them. Walter et al. illustrate how dominant death is on the front pages of national newspapers in the United Kingdom—a situation equally widespread in the United States. Field and Walter add, “Although death may be hidden in some arenas, this is certainly not true of the mass media. While medicine has largely taken over from religion in the practical management of death it does not purport to interpret death’s meaning. But the mass media, it may be argued, do precisely this. It is the mass media, not medicine, that have inherited religion’s mantle as the interpreter of death in contemporary modern societies.” Among the means media use to represent, instruct, and interpret death, according to the authors: • Obituaries—“a common and popular way of honoring and remembering those who have died.” • Autobiographical accounts—“of the experiences of those who have been diagnosed with a termi-
research at end of life 225 nal condition, usually cancer or AIDS. Such accounts often provide ‘scripts’ for coping with dying in a (usually) quiet but ‘heroic’ way and in so doing offer models of ‘good dying’ for their readers.” • Film—“Fictional cinematic scenes about dying can be very poignant and moving, engaging the viewer with a range of questions about death, but at a ‘safe’ distance.” While explaining how we make sense of death as a culture through media representations, McIlwain writes, “In the beginning of wide-spread television use, the American attitude was one largely of fear— fear of death, of dying and the means by which it would occur. This attitude pervaded this era of war, conflict, economic depression and high mortality rates. The images of death most popularly illustrative of the pervasive view of death at the time were in the genre of science fiction.” Then during the late 1960s and 1970s, technological progress affected both death and its interpretations. “New medical advances began to delay death. . . . Shows like Trapper John, M.D., Doctor’s Hospital, and Marcus Welby, M.D. were the rave and expressed the popular feeling that hospitals were places people went to get better, not to die.” Noting that death was virtually erased from view until into the 1990s, McIlwain writes, “When we saw death on television it was usually momentary and insignificant. There were few scenes of funeral preparation or cemeteries, family members spending months grieving or family conflicts over the deceased’s wishes regarding his burial or allocation of material assets. In short, on television, people just died.” Moving on to the end of the last century and into the 21st century, McIlwain says Americans have renewed the search for life’s meaning, including connections with the dead. “The magic is slowly creeping again out of the box. We see this exemplified in a host of new television programs from Six Feet Under to Crossing Over With John Edwards.” For the first time, viewers are “willing to confront, to some degree, the harsh realities and details that follow death. The ERs, Gideon’s Hope, and MD’s have replaced the optimism of earlier medical dramas with the trauma of death, pain and loss.”
Field, David, and Tony Walter. “Death and the Media: Introduction.” Mortality, Virtual Themes Issue. Available online. URL: http://www.tandf.co.uk/journals/archive/ deathandthemedia.pdf. Posted February 2003. McIlwain, Charlton. “On the Significance of Death in Culture & Communication Research.” New York University/Counterblast. Available online. URL: http://www.nyu.edu/ pubs/counterblast/death.htm. Downloaded July 19, 2004. Walter, T., M. Pickering, and J. Littlewood. “Death in the News: The Public Invigilation of Private Emotion.” Sociology 29, no. 4 (1995): 579–596.
requiem mass
See MASS OF CHRISTIAN BURIAL.
research at end of life
Although research is sparse in end-of-life issues, in spite of the fact that care of vulnerable populations is improved only through investigative study, researchers have noted that end-of-life research has inherent problems, including nonparticipation and attrition. In her assessment of the frequency of issues and dilemmas within a vulnerable home hospice population, Dobratz found that in a group of 113 potential participants, 16 (14.1 percent) people who gave initial consent were unable to participate or were lost to the study due either to an inability to give informed consent, cognitive disturbance, or physical distress. Of the 97 participants who completed testing, 28 (28.8 percent) required assistance because of poor vision, physical weakness, and other physical impairments. In her conclusions, Dobratz notes, “Although several participants required assistance, those who completed testing expressed gratitude at being able to contribute information that they believed would benefit others.” Another issue regarding end of life research is increasingly raising ethical questions and concerns: performing research on people whose brains have stopped functioning but who are being kept alive by machines. For example, a University of Pittsburgh transplant surgeon developed a plan whereby families of brain-dead persons, who agreed to donate organs but who turned out not to be acceptable, will be asked to delay removal of life-extending machines a few hours in order to allow drug testing.
226 respite care Boyce explains, “Critics say the approach dangerously blurs what has for decades been a sharp dividing line between the brain-dead and the still living.” In another proposal described by Boyce, “Researchers wanted to remove a heart as if for transplant and keep it beating outside the body—an approach that might help preserve the vitality of donated hearts. The university decided it needed a panel to oversee such research—and wrestle with questions it raises. For example, how long should a brain-dead person be kept going, delaying closure for the family and occupying a valuable hospital bed?” Boyce, Nell. “Science Calls at the Deathbed.” U.S. News & World Report, January 12, 2004. Dobratz, Marjorie C. “Issues and Dilemmas in Conducting Research with Vulnerable Home Hospice Participants.” Journal of Nursing Scholarship 35, no. 4 (2003): 371–376.
respite care Care given to a terminally or chronically ill or severely disabled patient by another caregiver so that the usual caregiver can rest; usually to afford temporary relief to family members providing continuous care. Respite care may be made available in an institution or at home. Some hospices have beds in a hospital or other facility available for a hospice patient whose primary home caregiver needs a little time off. In their policy statement on Palliative Care for Children, the American Academy of Pediatrics stated, “Respite care . . . by qualified caregivers other than family members, allows the family time to rest and renew, whether for hours or days, on a schedule, or intermittently as needed. Families may benefit from the provision of respite care throughout a child’s illness, not only near the end. Appropriate pediatric respite care is often lacking, but is considered by many families to be essential for their continued integrity and ability to care for the ill child, siblings, and themselves.” The form of respite care service varies and includes: day care, in-home respite, and overnight respite. Some respite care provides special services such as nursing care, physical therapy, and occupational therapy. During a period of respite care, MEDICARE patients are cared for in a Medicare-
approved facility, such as a hospice facility, hospital, or nursing home. Committee on Bioethics and Committee on Hospital Care, American Academy of Pediatrics. “Palliative Care for Children (RE0007).” Pediatrics 106, no. 2 (August 2000): 351–357.
resuscitation
The restoration to life or consciousness of a person who has stopped breathing. Cardiopulmonary resuscitation (CPR) is an emergency procedure consisting of artificial and manual chest compression, mouth-to-mouth resuscitation, or inserting a breathing tube into the windpipe in an attempt to revive a person whose heart has stopped beating and/or who has stopped breathing. When a person’s heart stops, he or she will die unless circulation is restarted quickly. In addition to CPR, fluids may be put into the bloodstream, using an intravenous drip, to help maintain the blood pressure. Adrenaline can be given to stimulate the heart and during a heart attack a defibrillator gives an electric shock to “jump start” the heart to get it beating properly again. With a DO-NOT-RESUSCITATE (DNR) ORDER, there is no attempt to restart the heart in case of cardiac arrest, and if the lungs no longer function, there is no use for a breathing machine.
retort The chamber in which CREMATION takes place. According to the American Cremation Society, the first retort in North America was constructed in Pennsylvania in 1876. A retort is sized to hold one corpse at a time. The retort is heated to a temperature of 1,600°F, which produces a state of extreme dehydration and evaporation that causes the composition of the body to be reduced to bone fragments. This step takes approximately two hours. After each cremation, the retort is swept and cleaned.
right-to-die debate Argued for many years in courtrooms and media, the central issue in this debate has been whether terminally ill individuals should have the right to ask a doctor to hasten their own deaths in order to die with dignity and on their
ring-around-a-rosy 227 own terms, and includes whether the family of a vegetative patient may require the medical team to forego apparatus such as breathing machines in order to let their loved one die naturally. As the medical community becomes technologically advanced, right-to-die issues become more prominent and more complicated. Public Agenda, a nonpartisan public opinion research organization, outlines the debate from three different perspectives: • According to the first perspective, society must protect life, but it must also recognize the right to a humane death. When people are near death, and in unbearable pain, they have a right to a physician’s assistance in ending their lives. It has long been recognized that patients have the right to refuse life-support technology, or have it withdrawn at a certain point. By the same token, individuals should be free to seek a physician’s assistance in dying. • According to a second perspective, the debate over physician-assisted suicide has arisen primarily because health care professionals routinely overlook patients’ preferences and do little to provide palliative care. Physicians typically focus on keeping patients alive, but often fail to relieve the pain or treat the depression patients experience. Giving patients more control over the treatment they receive, and taking additional measures to alleviate their pain, is a far better solution than encouraging physicians to supervise suicides. • According to a third perspective, physicianassisted suicide must be prohibited. As a society, we need to affirm the unconditional value of human life. Legalizing physician assistance in such cases would make the tragic act of suicide routine and acceptable, and encourage individuals to resort to it more often. It is essential to insist that life is inviolable. Physicians have a fundamental obligation to use every means at their disposal to preserve life. Permitting physicianassisted suicide would undermine public trust in the medical profession.
Public Agenda. “Right to Die: Overview.” Available online. URL: http://www.publicagenda.org/issues/overview. cfm?issue_type=right2die. Downloaded December 28, 2003.
rigor mortis Literally, in Latin, “stiffness of death”; the temporary hardening of the joints and muscles that begins anywhere from 10 minutes to several hours following death, causes boardlike stiffness within 12 hours, and lasts for up to four days— when it disappears gradually, beginning in the head and neck area, until the corpse becomes flexible again. Due to chemical changes in the muscle tissue, the skeletal muscles partially contract with an inability to relax, causing the joints to become fixed in place. The amount and distribution of rigor mortis is one of several factors investigators use to determine time of death. It first shows in the face, lower jaw, and neck, then spreads throughout the body. The two main factors influencing the onset and duration of rigor mortis are the environmental temperature and the degree of muscular activity before death. It occurs quicker but lasts a shorter time when the environmental temperature is high. If the temperature is below freezing, it is unusual for rigor mortis to develop, but if the temperature thereafter rises, rigor mortis is said to develop in a normal manner. Rigor mortis is rapid in onset and of short duration after prolonged muscular activity, e.g., after exhaustion in battle, and following convulsions. Conversely, according to forensic experts, a late onset of rigor in many sudden deaths might be explained by the lack of muscular activity immediately prior to death. In preparing the body for embalming, the funeral director relieves rigor mortis by flexing, bending, and massaging the arms and legs; then moving the limbs to a suitable position, usually with the legs extended and arms at the sides. Rigor mortis is the source of the word “stiff” used as slang for a corpse. See also ALGOR MORTIS; LIVOR MORTIS.
ring-around-a-rosy Powell, John, and Adam S. Cohen. “The Right to Die.” Issues in Law & Medicine, September 22, 1994.
Also called ring-around-therosie. According to Kessler, the children’s game in which the players dance around in a circle and at a
228 ritual and death given signal all crouch down. It began as a poem chanted by children during the BLACK DEATH. “‘Rosy’ refers to parts of the body reddened by the disease, ‘posies’ to the flowers people frantically stuffed into their pockets for protection against the plague. But when children began chanting this poem centuries ago the people who ‘all fall down’ didn’t get back up again.” Others have written that the “ashes, ashes” refers to crosses made from ash painted on victims’ doors to alert healthy people to stay away. Kessler, David. The Needs of the Dying. New York: Quill, 2000.
ritual and death
Wells writes that ritual provides both the dying and their survivors with aid and comfort in passing through their times of crisis. “Ritual reduces stress by offering acceptable routines which emphasize the commonality of death, instead of isolation and loneliness. Ritual also gives meaning to many of the stages of dying, if not to the ultimate experience. Finally, ritual allows the expression of emotions that would otherwise be proscribed, and defines appropriate forms of behavior. Not surprisingly, rituals, especially those associated with major transitions such as death, often reflect the most fundamental values of a society.”
Wells, Robert V. “Taming the ‘King of Terrors’: Ritual and Death in Schenectady, New York, 1844–1860.” Journal of Social History 27, no. 4 (Summer 1994): 717–734.
River Styx
The river that surrounded Hades, the underworld (world of the dead) of Greek and Roman mythology, which souls of the dead had to cross on their journey from the realm of the living. Deceased souls were rowed across the river by Charon, who demanded payment, which was placed under the tongues of the deceased when they were buried. See also GREEKS, ANCIENT.
Robert Wood Johnson Foundation
Established as a national philanthropy in 1972 and based in
Princeton, New Jersey; the largest U.S. foundation devoted exclusively to health and health care. During the 1990s, the foundation funded several initiatives, including LAST ACTS, to improve the level of dialogue about end-of-life care and reinforce approaches that might make improvements. PROJECT ON DEATH IN AMERICA and the Robert Wood Johnson Foundation awarded more than $200 million in grants to promote physician training and community education about palliative care and related end-of-life issues. The foundation began phasing out its end-of-life projects in December 2003 and shifting toward childhood obesity and the nursing shortage, but continues to monitor programs and research begun through its funding. See also PROMOTING EXCELLENCE IN END-OF-LIFE CARE.
Romans, ancient Ancient Rome flourished in the period between the eighth and first centuries B.C.E., when Rome grew from a tiny settlement to an empire. With disease common and medical knowledge limited, ancient Romans lived short lives; thus, with death in the short-term, funeral rituals and practices played a prominent role in Roman life. At various stages during this period, the Romans practiced both cremation and in-ground burial, although burial was more prominent. Because they believed that a proper burial was essential for passage to the land of the dead, it was necessary for at least a small part of the remains—or a ceremonial bone—to be buried. Without a proper burial, the dead were cursed to walk the Earth forever as ghostly spirits. By law, burials took place outside the city walls along the roads leading into the city. The Appian Way, the oldest road built by the ancient Romans, is lined with tombs of the most aristocratic families. As land became in short supply, the Romans created underground cemeteries called CATACOMBS. The Romans believed that the souls of the dead were rowed across the mythological RIVER STYX to the underworld, where each soul was then judged as to whether it was to go to heaven (Elysium) or hell (Tartarus). Funerals were held to prepare the spirit for this journey.
rosemary 229 Classics Unveiled. “The Romans and Their Dead.” Available online. URL: http://www.classicsunveiled.com/romel/ html/romedead.html. Downloaded December 31, 2003. Toynbee, Jocelyn M. C. Death and Burial in the Roman World. Baltimore: Johns Hopkins University Press, 1996.
rosemary
A symbol of remembrance that figures prominently in Christian tradition. When a person died, mourners placed rosemary sprigs in the grave as pledges that the deceased would not be forgotten. On ANZAC Day, Australians and New Zealanders
wear small sprigs of rosemary in their coat lapels, pinned to their clothing, or held in place by medals in remembrance and commemoration of their war dead. In England, rosemary bunches have memorialized the graves of heroes. Ancient Egyptians used rosemary in their funeral rites, including it among herbs inserted among the bandages to help preserve a mummy. Dachman, Kenneth, and Joen Pritchard Kinnan. “Bach Flower Remedies.” The Self-Health Handbook. New York: Facts On File, 1996.
S Doctor, Ronald M., and Ada P. Kahn. “theophobia,” in The Encyclopedia of Phobias, Fears, and Anxieties, Second Edition. New York: Facts On File, 2000. Monstrous.com. “Sacrifices.” Available online. URL: http://death.monstrous.com/sacrifices.htm. Downloaded January 1, 2004. Parker-Pearson, Mike. “Bodies for the Gods: The Practice of Human Sacrifice.” British Broadcasting Company. Available online. URL: http://www.bbc.co.uk/history/ ancient/prehistory/human_sacrifice_01.shtml. Posted January 3, 2002.
sacrifices
In ancient cultures, human sacrifices were considered necessary to please the gods. Doctor and Kahn explain that human lives have been offered to higher powers in religions that do not involve ancestor worship. “For example, Aztec Indians believed that the sun would not rise and move across the sky without daily human sacrifice. Sacrifice seems to have performed some psychological functions more positive than alleviation of fear. The sacrificial victim was considered a messenger to the gods and, at least in some cases, went willingly. The ritual gave the worshiper a satisfying sense of being in touch with God and of vicariously sacrificing himself.” Others have written that the Aztecs believed that because man was created by the sacrifice of the gods, he must reciprocate by offering them his own blood in sacrifice. But the sacrifice of selected humans is not confined to ancient history, it continues today in isolated parts of the world. In his detailed history of human sacrifices, archaeologist Parker-Pearson explains that human sacrifice occurs for more reasons than appeasing the gods or securing prosperity. “It covers all situations in which a human life is exchanged for a greater cause. Even religious belief is not a necessary requirement; hunger-strikers are prepared to die for their nationalism, while Kamikaze pilots died for their emperor in World War Two. . . . The suicide bombers of Palestine and the September 11 terrorists are also modern-day human sacrifices. If the idea seems unpalatable, we have to remember that one of the major world religions, Christianity, is constructed in the image of a sacrificed man-god who is said to have died to save humankind. Whether we like it or not, human sacrifice has been with us for more than 5,000 years and, in the form of altruistic suicide, is one of the many characteristics that distinguish us from other animals.”
sarcophagus
A stone container to hold a body or a coffin. Derived from the Greek sark (flesh) and sarkos (eating), scholars have debated the reason behind its name. Some write that the Greeks believed a particular type of limestone, which was quarried near Troy, would dissolve flesh and thus was most appropriate for making coffins. Others argue that sarcophagus was more likely a figurative reference to the speed with which the bodies of those interred in porous limestone coffins decayed to bones. A sarcophagus might be built for burial in the ground, or for placing in a crypt, or as an aboveground, elaborate tomb. Most were ornately decorated with carvings of inscriptions, images, or sculptures. The ancient Egyptians used the sarcophagus as the outer protective layer enclosing several layers of coffins, with the mummy nested in the center. The ancient Roman upper class was usually laid to rest in sarcophagi housed in mausoleums. A sarcophagus might be rectangular, oval, or shaped like the traditional coffin.
saved by the bell According to stories about England during the 1500s, English villages were 231
232 scaffold burial running out of space to bury their dead, so locals began digging up coffins and returning the bones to their families or to a “bone-house” so they could reuse the graves. As they opened the coffins several were found to have scratch marks on the inside— some retellers or story tellers say one in 25, others one in 50—so the locals determined that they were sometimes mistakenly declaring live people dead and burying them while still alive. To prevent this, they began tying a string around a wrist of each corpse, stretching the string through a hole in the coffin and up through the dirt to a bell above ground. For several days, friends or relatives would take turns sitting beside the grave (hence the “graveyard shift”) to listen for the bell to ring. If it did, they would dig up the coffin, open it and save the person buried there—who was, thus, saved by the bell.
scaffold burial Several American Indian tribes, especially those in the Great Plains area, deposited their deceased on scaffolds, some built atop poles about 12 feet high, others positioned in trees. The bodies themselves were often wrapped and placed within a canoe or travois basket on the scaffold. Some were lashed to the scaffold with strips of rawhide. According to a U.S. Army observer of the time, among the Sioux of Wyoming and Nebraska, when a person of consequence died a small scaffold was erected inside his lodge and the body wrapped in skins and deposited on the scaffold. A writer who followed a nomadic tribe during the 1770s, noted that if a death occurred in the winter season, and at a distance from the burial-ground of the family, the body invariably accompanied all the wanderings and journeys of the survivors, until the spring and their arrival at the place of interment. In the meantime, it rested everywhere on a scaffold, out of the reach of beasts of prey. Describing the burial customs of the Quapaw, the southernmost tribe of the Siouan group, Bushnell writes, “Remains of the principal men of a village were placed in ‘lofty coffins,’ a statement which at once suggests a form of tree or scaffold burial. All others were probably placed in ordinary graves. Similar methods of disposing of their dead were followed by the Algonquian tribes of Virginia at the time of the settlement of Jamestown, but among them the
bodies of the chief men were wrapped and placed on platforms erected within a mat-covered structure termed by the early writers a ‘temple.’ A structure of this nature may have stood in every village.” Retelling a story of the reason for scaffold burials given by a Chippeway chief near St. Louis in 1826, Bushnell relates, “They did not like to put them out of their sight so soon by putting them under ground. Upon a platform they could see the box that contained their remains, and that was a comfort to them.” Bushnell, David I., Jr. Native Cemeteries and Forms of Burial East of the Mississippi. Washington, D.C.: Government Printing Office, 1920. ———. Burials of the Algonquian, Siouan and Caddoan Tribes West of the Mississippi. Washington, D.C.: Government Printing Office, 1927.
Schiavo, Terri
A Florida woman who in 1990, at the age of 26, collapsed in her home from a heart attack and fell into a coma from which she emerged several weeks later, but soon lapsed again into a persistent vegetative state—brain-damaged and dependent on a feeding tube. In 2003, her husband convinced the courts to allow the feeding tube to be removed, insisting that she would not want to live in her current condition. The feeding tube was removed, but Schiavo’s parents, who are Catholic, quickly intervened, saying that their daughter, contrary to her husband’s assertion, responded to them and could be rehabilitated. In October 2003, the Florida legislature passed a bill that was signed by Governor Jeb Bush to reinsert the feeding tube. Critics said the Schiavo case was a textbook example of government intrusion in a public policy debate involving health care. The new law was challenged not only by Schiavo’s husband but also by others who believe that under certain life conditions, everyone has a right to die. On the other side, right-to-life proponents offered vocal support to keep the law in place. Because of the Schiavo case, legislators hurriedly began to alter Florida’s right-todie laws. One bill would lead to more tube feeding for people without living wills. Another would limit decisions by family members, such as Schiavo’s husband, who might have a financial stake in their loved ones’ fate.
séance 233 The Schiavo case focused national attention on the importance of Americans making their end-oflife wishes clearly known through living wills and advance directives, plus becoming knowledgeable about local laws surrounding end-of-life choices.
school deaths
During the late 1990s, a series of high-profile school shootings in the United States caused public alarm. Noting that little was known about the actual incidence and characteristics of school-associated violent deaths, Anderson et al. studied data collected from media databases, state and local agencies, and police and school officials for July 1, 1994, through June 30, 1999, in order to ascertain national estimates of risk of schoolassociated violent death; national trends in schoolassociated violent deaths; common features of these events; and potential risk factors for perpetration and victimization. Their research identified 220 events resulting in 253 deaths between 1994 and 1999; 202 events involved one death and 18 involved multiple deaths. Of the 220 events, 172 were homicides, 30 were suicides, 11 were homicide-suicides, five were legal intervention deaths, and two were unintentional firearm-related deaths. Students accounted for 172 (68.0 percent) of these deaths, resulting in an estimated average annual incidence of 0.068 per 100,000 students. Between 1992 and 1999, the rate of single-victim student homicides decreased significantly; however, homicide rates for students killed in multiple-victim events increased. Most events occurred around the start of the school day, the lunch period, or the end of the school day. For 120 (54.5 percent) of the incidents, respondents reported that a note, threat, or other action potentially indicating risk for violence occurred prior to the event. Homicide offenders were more likely than homicide victims to have expressed some form of suicidal behavior prior to the event and been bullied by their peers. According to the sixth edition of Indicators of School Crime and Safety, a joint publication of the Bureau of Justice Statistics and the National Center for Education Statistics, data on homicides and suicides at school show there were 32 school-associated violent deaths in the United States between July 1, 1999, and June 30, 2000, including 24 homicides, 16
of which involved school-aged children, and eight were suicides. The 16 homicides were relatively few (1 percent of all homicides of youth) when comparing them with a total of 2,124 children ages 5–19 who were victims of homicide in the United States over the same period. Six of the eight school-associated suicides involved school-aged children. Away from school, there were a total of 1,922 suicides of children ages five to 19 during the 2000 calendar year. In each school year from 1992 to 2000, youths ages five to 19 were at least 70 times more likely to be murdered away from school than at school. Anderson, Mark, et al. “School-Associated Violent Deaths in the United States, 1994–1999.” JAMA 286, no. 21 (December 5, 2001); 2695–2702. DeVoe, J. F., et al. Indicators of School Crime and Safety: 2003. National Center for Education Statistics. Available online. URL: http://nces.ed.gov/pubsearch/pubsinfo. asp?pubid=200404. Posted October 22, 2003.
séance
A meeting typically held around a table and led by a medium who helps those in attendance (called “sitters”) make contact with the spirits of loved ones who have died. Séances have been held for more than a century. Typically, the lights are turned out, and all hold hands and attempt to communicate with the spirit world. According to Dr. Richard Wiseman, Britain’s leading paranormal investigator, in some séances, the medium appears to enter into a trance and delivers messages from the sitters’ deceased friends and relatives. In another type of séance, referred to as a “physical séance,” objects that have been treated with luminous paint are placed in the center of the table, and the spirits apparently cause these objects to levitate and move. “Although physical séances were at their most popular during the Victorian period, groups of sitters and mediums still hold physical séances today, often reporting the same type of seemingly inexplicable phenomena that were described by eyewitnesses attending such events at the turn of the last century.” After leading experiments that showed the mediums’ power to be psychological, Wiseman et al. note that because of the power of suggestion, even sceptics can become convinced that they are experiencing something mysterious in the environment of a séance. “When someone is telling you that
234 sedentary deaths things are happening, some people can be convinced that something strange is happening when it is not.” Their experiments represent the first attempt to systematically examine verbal suggestion within the context of the séance. “They have demonstrated that such suggestions have the potential to cause sitters to incorrectly report that stationary objects were moving, and that moving objects were stationary. The studies have also produced strong evidence that within the context of a séance, believers are significantly more susceptible to verbal suggestion than disbelievers, but only when the suggestion is consistent with the existence of paranormal phenomena.” During the fake séances, many participants reported experiencing the type of unusual phenomena often associated with genuine séances, including, for example, sudden changes in temperature, a sense of unusual energy, and odd smells. Results also showed that about a fifth of participants believed that the fake séance contained genuine paranormal phenomena and that a significantly greater percentage of believers than disbelievers believed this to be the case. Wiseman has stated that he does not accuse all mediums of deliberate fraud, suggesting that “Some might have convinced themselves that they had special abilities.” Chapman, James. “Did These Tests Prove a Séance Is Only Power of Persuasion?” The Daily Mail, July 14, 2001. Wiseman, Richard, E. Greening, and Matthew Smith. “Belief in the Paranormal and Suggestion in the Séance Room.” British Journal of Psychology 94, part 3 (August 2003): 285–297.
sedentary deaths
A term used for the rising number of deaths in the United States due to poor diet and physical inactivity, which rose from 14 percent of all deaths in 1990 to 16.6 percent in 2000—closing in rapidly on tobacco (18.1 percent) as the nation’s number-one, underlying preventable killer. Poor diet and physical inactivity caused 400,000 deaths in 2000. The Centers for Disease Control and Prevention (CDC) is now referring to lifestyle and behavior factors, such as smoking and physical inactivity, as contributing to the country’s leading killers—such as heart disease, cancer, and stroke— as “actual causes of death.”
Centers for Disease Control and Prevention. “Trends in Intake of Energy and Macronutrients—United States, 1971–2000.” Morbidity and Mortality Weekly Report 53, no. 4 (February 6, 2004): 80–82. Manson, J. E., et al. “The Escalating Pandemics of Obesity and Sedentary Lifestyle. A Call to Action for Clinicians.” Archives of Internal Medicine 164, no. 3 (February 9, 2004): 249–258. Mokdad, Ali H., et al. “Actual Causes of Death in the United States, 2000.” JAMA 291, no. 10 (March 10, 2004): 1238–1245.
selective reduction in multiple-birth pregnancies Also called “selective multifetal reduction”; a procedure to minimize the risks of birth defects resulting from multiple births, especially with quadruplets or larger. In selective reduction, doctors reduce the number of fetuses in the uterus to give those remaining a better chance to survive. Eberlein describes it as a “Sophie’s choice” for the mother—“risk losing all her babies by continuing a quadruplet pregnancy, or purposely sacrifice two of them to give the others a better chance to live.” The procedure is relatively uncomplicated, as described by Eberlein: “Using ultrasound guidance, the doctor passes a needle through the abdomen and injects a fatal chemical into the fetal heart. Fetuses are selected based solely on how easily the needle can reach them. Typically the goal is to leave behind twins.” Studies have shown that 10 percent of babies where selective reduction is not done die shortly after birth, with none dying where reduction was done. But transabdominal reduction does carry a 10 percent risk of miscarriage of all the babies. In addition, Eberlein cautions, “Most women who undergo reduction find it emotionally painful, according to one study, and 20 percent experience long-lasting guilt and sadness.” Eberlein, Tamara. “Too Many Babies? The Dangerous Rise of Multiple Births.” Redbook, August 1996.
sepulcher
A chamber above ground, often cut in rock or built of stone, in which a dead person is buried. Sepulcher burial was common among Jews at a time when the Romans used cremation. In the Roman Catholic Church, a sepulcher is a small container holding sacred relics.
social death 235 shiva
In Judaism, a period of formal mourning, which begins the evening of the funeral. Traditionally, “sitting shiva” took place for seven days, but today some Reform Jews sit shiva for three days or less. Traditional Jews cover all mirrors during this time (because mourners are not to be vain), sit on low shiva benches or stools to symbolize submission to God’s will, and recite the mourner’s prayer daily. A special tall candle burns for seven days. During this time, family members do not conduct business, participate in entertainment, wear new clothes, shave, cut their hair, or have sexual intercourse. Also during this intense mourning period, friends and family of the deceased and friends of the deceased’s relatives pay a shiva call to comfort the mourners, share their grief, and help them cope with the immediate loss and begin the transition to a life without the deceased.
shroud A length of cloth used to wrap a dead person in preparation for burial. Muslims traditionally bury the dead in a seamless shroud. The shroud used for wrapping the body must be a clean (preferably white) cloth and should cover the whole body. The shroud is tied at the head and feet, with a piece of cloth (from the same shroud) in such a way that one can differentiate the head from the feet. Jews also traditionally wrap their dead in a white shroud. Hindu families prepare the body, wrap it in a shroud, and then take it to be cremated. In addition, “shrouding” exists today among some Asian, African, and Native American traditions; monks; and a few Orthodox Christians. It is the custom of some Native Americans to wrap their dead in shrouds made of animal hides. The vast majority of early Christians were wrapped in a shroud. According to Death in England (Manchester University Press, 1999), even into the 16th century, shroud burials were the norm among the lower classes, although a few parishes had a reusable communal coffin in which parishioners could be carried to the grave. In the early days of burial at sea, according to the Naval Historical Center at the Washington Navy Yard, the body was sewn into a weighted shroud, usually of sailcloth, and then sent over the side of the boat. During an excavation of a small, 18th-century family cemetery in Sussex County, Delaware,
archaeologists recovered from five of the burials shroud pins—straight pins used for fastening the burial shroud around the body. “The shroud pins were made of a copper alloy, probably brass, fashioned with wrapped heads, and were most likely plated with tin or gold. The use of brass or copper alloy in making straight pins began in the sixteenth century, while the shaping of the head with a second piece of wire began in the seventeenth century.” In another situation, an 18th-century African burial ground was discovered during construction of a new federal office building in downtown New York City. Most of the bodies had been shrouded, which archaeologists knew, not by the presence of fabric, but by the discovery that shroud pins made of copper had left green stains on the skeletons. According to historians, early American shrouds were large sack-like garments with drawstrings at the top, usually made from a type of flannel woven especially for the purpose. A seam extended the length of the shroud in front, with the back open so as to promote ease of putting it on the corpse. A shroud usually had slits cut for arm-holes, with plain sleeves and gussets sewn in. For women, shrouds were gathered in front and for men they were made without gathers. Shrouds were generally black for adults and white for children. In Great Britain, GREEN BURIAL grounds offer a “lovely woollen shroud” as an alternative to caskets in which to bury loved ones in a nature reserve. In the United States, the HOME BURIAL movement also suggests using shrouds as a less expensive choice than caskets. Sabir, Nadirah Z. “Shrouding: A Rite Ancient and Modern.” The Atlanta Journal and Constitution, January 11, 2003.
social death
The end of a person’s social identity, after rituals associated with death are completed and those left behind proceed with their regular lifestyle. For example, among the Kota people of South India, one is not socially dead until after the dry funeral, held 11 days after biological death. Michalopoulou and Michalopoulou explain that during the transitional period when the deceased moves between the land of the living and the land of the dying, “the soul has social rights over the
236 Social Security death benefits bereaved relatives. They are to perform ceremonies, act and dress in a special way and withdraw from social life. For example, in Malay Archipelago the corpse is buried but is reburied months or even years later in a final ceremony. Between the two funerals the living have the duty of providing for him; they must bring his usual meals twice a day. When the final ceremony takes place he is considered to be ‘reborn’ into the society of dead ancestors. At this time the mourners can re-enter normal society. Among Orthodox Jews, burial is within 24 hours after the death and the bereaved remain at home for a period of seven days. Mourning dress is worn for 30 days and recreation is forbidden for one year. The transitional period lasts until the dedication of the tombstone a year later, which marks the social death.” Sweeting and Gilhooley refer to social death as what results with the social alienation that occurs before biologic or clinical death. It emanates from the grieving process following the anticipation of the loved one’s demise. But Locsin looks at it differently: “With the changing sociocultural structure, recognizing social death as the primary stage of the grieving process will be more likely. With social death, the usual, culturally derived rituals of death and dying may no longer be observable.” Locsin, Rozzano C. “Nursing Practice and the Preoccupation with Power over Death.” Holistic Nursing Practice 15, no. 2 (January 2001): 1–4. Michalopoulou, A., and E. Michalopoulou. “Social Handling of Death.” ICUS and Nursing Web Journal 12 (November-December 2002): 1–7. Sweeting, H. N., and L. M. Gilhooley “Doctor, Am I Dead? A Review of Social Death in Modern Societies.” Omega: Journal of Death and Dying 24, no. 4 (1992): 251–269.
Social Security death benefits
Social Security benefits are available to cover any person who worked under the Social Security system and had enough work “credits.” A one-time payment of $255 is payable to the surviving spouse if he or she was living with the beneficiary at the time of death, or, if living apart, was eligible for Social Security benefits on the beneficiary’s earnings record for the month of death. If there is no surviving spouse, the payment is made to a child who was eligible for
benefits on the beneficiary’s earnings record in the month of death. An application for the lump-sum payment must be filed within two years of the death of the deceased. Payment is made directly to the surviving spouse or entitled child, never directly to the funeral director. Monthly survivor benefits can be paid to certain family members, including the beneficiary’s widow or widower, dependent children, and dependent parents. How much a family can get from Social Security depends on the deceased’s average lifetime earnings—the higher the earnings, the higher the benefits will be. An estimate of the Social Security survivor benefits that can be paid to any family can be obtained by calling (800) 772–1213 or visiting a Social Security office (listed in local telephone directories) and requesting a Form SSA-7004 (Request for Personal Earnings and Benefit Estimate Statement). Within four to six weeks after completing and returning the form, Social Security returns a statement showing an estimate of survivor benefits that could be paid, as well as an estimate of retirement and disability benefits and other important information. There’s no charge for this service. The Social Security Administration (SSA) offers two booklets that contain information about filing for benefits—“Survivors Benefits” (Publication No. 05-10084) and “Social Security: Understanding the Benefits” (Publication No. 05-10024). Both can be downloaded at their Web site, http://www.ssa.gov, or obtained by calling the SSA toll-free at (800) 772–1213.
somatic death
When the body as a whole stops functioning. See also BIOLOGICAL DEATH.
sperm donation
See POSTHUMOUS REPRODUCTION.
spiritual care With increasing attention being paid to palliative and holistic care for dying patients, the spiritual care component is reaching newfound significance, especially with a growing inclusion of spiritual care into nursing practice. Leslie J. Van Dover and Jane M. Bacon explain, “The discipline of nursing has ‘rediscovered’ the con-
stages of grief 237 ceptual and practical importance of identifying and addressing human spiritual issues that affect the healing process.” Noting that the definitions of spirituality and spiritual care are extremely diverse, the authors caution that the concept of spirituality is often confused with religion. “This may create uncertainty for the nurse who has not received preparation in how to discern and diagnose spiritual problems and to plan care for patients. When a spiritual need is expressed, often it is referred to a chaplain or a religious adviser. This may not always be expedient or even possible, as many health care facilities do not have an abundance of spiritual resources. Some of the spiritual needs of patients and their families may be addressed most appropriately by nurses.” Laukhuf and Werner further explain what spiritual care includes: “Spiritual care is more than realizing a patient’s spiritual beliefs and incorporating these into our interventions. Spiritual care is anything that touches the spirit of another—it can be shared laughter, tears or remembering their birthday. It can be keeping vigil with a family as a loved one struggles to recover. It can be crying with that family when the patient dies. It can be soothing a chronically ill individual as they struggle to define their worth and meaning in light of illness and demands, or it can be as simple as just sitting there. It can be a gentle back rub with soothing words that allow a client to sleep. It can be the 3:00 A.M. conversation prior to surgery. It can be a shared prayer or religious reading from the Bible, Koran or other religious book that has special meaning to the patient.”
may deny that anything is wrong or that it cannot be “fixed.” Some patients have trouble getting beyond this stage, and may “doctor shop” until finding one who will agree that there is a cure. 2.
ANGER The patients become frustrated, irritable, and angry that they are ill or injured, asking “Why me?” Their anger may be focused on their doctors, hospital staff, or family. Or they may direct the anger at themselves, deciding that their illness or injury occurred because of their own wrongdoing.
3.
BARGAINING
4.
DEPRESSION
5.
ACCEPTANCE
As they begin to acknowledge the truth and finality of their situation, they may attempt to negotiate with doctors, family, friends, even God; in return for a cure or for staying alive, they will fulfill promises, go to church, give to charities, and so on. According to rehabilitation clinical psychologist Ana Kadmon-Telias, during this stage, patients show clinical signs of depression: withdrawal, psychomotor retardation, hopelessness, and possibly suicidal ideation. The depression may be a reaction to the effects of illness on his/her life, e.g., loss of job or economic hardship, or it may be in the anticipation of the actual loss of life that will occur shortly.
At this stage, the person realizes death is inevitable and accepts its eventuality, although he or she may still hold out hope that a miracle will occur.
Laukhuf, Greg, and Harry Werner. “Spirituality: The Missing Link (Spiritual Care in Nursing).” Journal of Neuroscience Nursing 30, no. 1 (February 1998): 60–67. Van Dover, Leslie J., and Jane M. Bacon. “Spiritual Care in Nursing Practice: A Close-up View.” Nursing Forum 36, no. 3 (July 2001): 18–29.
Although these emotional stages are common, several researchers have noted that they are not universal or inevitable, nor do they always occur in that same order. Others have noted that in advanced stages of dying, social withdrawal can naturally occur when the person who is dying begins to let go of social attachments.
stages of dying
Kadmon-Telias, Ana. “Psychodrama and Helplessness in the Helper of Addicts.” International Journal of Psychosocial Rehabilitation 5 (2001): 111–134.
ELISABETH KÜBLER-ROSS, M.D., a psychiatrist and author of the groundbreaking On Death and Dying, identified five “coping” stages the dying usually work their way through before accepting their fate:
stages of grief 1.
After the initial reaction of shock upon learning that a condition is terminal, patients DENIAL
As first outlined by JOHN BOWLBY and since adapted by numerous other authors, the four stages of grief and mourning are:
238 state funerals 1. Numbness or protest Characterized by distress, fear, and anger. Emotional numbness or a “shutting down” can create what appears to be rigidity or dullness in the personality, sometimes leading to a lack of spontaneity or presence in other relationships. A person in this stage seems to be only going through the motions of life and of dealing with relationships. The shock may last for moments, days, or months. 2. Yearning and searching Characterized by a yearning for the deceased and searching for a replacement in other people, places, or things. There is a risk for rebound relationships during this replacement process. The grieving person may find an experience or a person that temporarily relieves this deep longing, but unless the original loss is made conscious, grieved, and understood, the solution will be a momentary one. The unfelt wound will reassert itself, making the current solution feel inadequate and wanting. During this stage, the world seems empty and meaningless, but self-esteem remains intact. There may be a preoccupation with the deceased, physical restlessness, weeping, and anger. This stage may last several months or years. 3. Disorganization, anger, and despair Characterized by restlessness and aimlessness, with increased withdrawal, introversion, and irritability. The grieving person is disillusioned because life has not worked out as planned. When normal routines are disrupted because the deceased is no longer around, the person feels lost and disconnected. There is a repeated reliving of memories. 4. Reorganization/Integration Characterized by an establishment of new patterns and goals as he or she begins to put the loss into perspective. As grief is resolved, the person is able to reenter life and engage in his or her own activities and plans. There is a restoration of emotional equilibrium. Grief recedes and is replaced by cherished memories. A healthy identification with the deceased occurs. Tian, Dayton. “The Four Stages of Grief and Mourning.” Heartwounds: The Impact of Unresolved Trauma and Grief on Relationships. Deerfield Beach, Fla.: Health Communications, 1997.
Kadmon-Telias, Ana. “Psychodrama and Helplessness in the Helper of Addicts.” International Journal of Psychosocial Rehabilitation 5 (2001): 111–134.
state funerals
Government funeral ceremonies held for government leaders and a few select public figures, and closely following set protocol. In England, where royal protocol dictates every detail—the procession route, order of service, seating plan, and who is invited—state funerals are normally reserved for the sovereign, although famous commoners, such as Sir Winston Churchill, have also been given state funerals with the sovereign’s permission. President John F. Kennedy lay in state in the Capitol Rotunda while heads of state, royalty, and emissaries from 92 countries paid their respects. Others who have been accorded state funerals include Victor Hugo in Paris, the Duke of Wellington in England, and William “Buffalo Bill” Cody in Denver, Colorado.
stillbirth The birth of an infant that has died in the womb after 20 weeks of pregnancy and before it is delivered, although all indications are it could have been expected to survive. Each year, more than 26,000 American women are reported to experience a stillbirth—or about one in 200 pregnancies. That number is equal to the cause of all infant deaths combined. But the true number of American stillbirths is likely much higher than that, experts believe. To date, it has been difficult to collect information on stillbirths because the criteria for reporting them vary from state to state, and the issuance of fetal death certificates is not required. Roan writes, “Fetal autopsy rates also are low. Moreover, studying the incidence of stillbirth is costly, and many families who experience a stillbirth find it emotionally difficult to discuss it.” Some causes of stillbirth are known, such as diabetes or high blood pressure affecting the mother, traumatic injuries and toxemia associated with pregnancy (eclampsia), infections, or catastrophic events (such as hemorrhage or cardiac arrest) in the mother or child. Pauli notes that a half-dozen previously published studies had assessed nearly 1,500 stillborns and found, collectively, that 4 percent had identifiable chromosome abnormalities,
sudden infant death syndrome 239 but states, “Our experience suggests that the yield from chromosomal assessment is a bit higher than has been previously estimated. It is likely that the proportion of stillbirths caused by chromosomal abnormalities is around 10 percent, with a lower limit of about 5 percent.” In more than half the stillbirth cases, the cause is unknown. In an attempt to more accurately determine the extent and causes of stillbirth, the National Institute of Child Health and Human Development (NICHD) in November 2003 awarded nearly $3 million to fund a five-year national research effort to study stillbirth in the United States. The award is funding the Stillbirth Research Collaborative Network, consisting of five research centers around the country and an independent data center to collect and analyze statistics on stillbirth. The research and statistical centers, in collaboration with the NICHD, are working to determine the causes of stillbirth, as well as develop standardized research guidelines for reporting and investigating stillbirths. See also FETAL DEATH; MISCARRIAGE. Pauli, Richard M. “Chromosomes and Stillbirth: Abnormalities in Stillborns.” University of Wisconsin Stillbirth Service Program. Available online. URL: http:// www.wisc.edu/wissp/wisspers/oct96001.htm. Downloaded July 20, 2004. Roan, Shari. “A Closer Look at the Causes of Stillbirths.” Los Angeles Times, January 12, 2004.
sudden death
A death that occurs unexpectedly and is instantaneous or occurs immediately after onset of symptoms, but is not caused by violence or trauma, such as sudden death from cardiac arrhythmia (abnormal heart rhythm) or SUDDEN INFANT DEATH SYNDROME. Studies have reported as many as 300,000 sudden deaths a year in the United States. When sudden death occurs, and the decedent was in apparent good health, most states and Canadian provinces require that a medical examiner investigate the death via an autopsy. Ian Maclean Smith, M.D., Emeritus Professor of the University of Iowa Hospitals and Clinics, has noted that “You can’t prepare for sudden death. It’s desperately lonely and mind shattering.” Alicia Skinner Cook and Daniel S. Dworkin agree, in Help-
ing the Bereaved: Therapeutic Interventions for Children, Adolescents, and Adults (Basic Books, 1992), writing that “Sudden death is particularly difficult to handle since it usually does not allow the process of anticipatory grief to take place.” There is no time for preparation, no time for goodbye and parting with friends.
sudden infant death syndrome (SIDS) Also known as “crib death,” the sudden death of an infant under one year of age that remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history. Although SIDS is a diagnosis of exclusion and of unknown etiology, it is the leading cause of death in infants from one month to one year of age, accounting for approximately one-third of all such deaths. SIDS occurs worldwide. The majority of SIDS deaths occur between two and four months of age. These deaths, although associated with a sleep period, are unpredictable. In most cases, infants appear healthy before succumbing to SIDS, with no signs of suffering a recognized medical disorder. Because such deaths leave unanswered questions, they cause intense grief for parents and families. SIDS is not preventable, but the risk can be reduced by placing the baby on his or her back to sleep on a firm surface, making sure the baby has a smoke-free environment, and by keeping the baby from being overheated. SIDS is not suffocation and is not caused by vomiting and choking or by minor illnesses such as colds or infection. Studies have shown that it is not caused by the diphtheria, pertussis, or tetanus (DPT) vaccines or other immunizations. Also, SIDS is not contagious, does not signify child abuse or neglect, and is not the cause of every unexpected infant death. A SIDS death occurs quickly and usually during sleep. SIDS is rare during the first month of life. Although SIDS can occur in older infants, most SIDS deaths occur by the end of the sixth month, with the greatest number occurring in infants between two and four months of age. In the United States, more SIDS cases are reported in the fall and winter than in spring or summer. SIDS occurs more often in infant boys than in girls (approximately a 60–40 percent male-to-female
240 suicide ratio). African-American and American Indian infants are two to three times more likely to die from SIDS than other infants. Each year between 1983 and 1992, the average number of reported SIDS deaths ranged from 5,000 to 6,000. Since the mid-1990s, the number of SIDS deaths has declined significantly. The National Center for Health Statistics reported that in 2000 in the United States, 2,522 infants under one year of age died from SIDS. Still, when considering the number of live births each year, SIDS remains the leading cause of death in the United States among infants between one month and one year of age and the third leading cause of death overall among infants less than one year of age. Although the overall SIDS rates have declined in all populations throughout the United States, disparities in SIDS rates and prevalence of risk factors remain in certain groups. SIDS rates remain highest among African Americans and American Indians and are lowest among Asians and Hispanics. Currently there is no known way to prevent SIDS, but there are things that parents and caregivers can do to reduce the risk of a SIDS death. For example, researchers now know that the mother’s health and behavior during her pregnancy and the baby’s health before birth seem to influence the occurrence of SIDS. Researchers and clinicians continue to try to identify risk factors that can be modified or controlled to reduce an infant’s risk for SIDS. For example, SIDS experts now know that a baby’s sleep position other than on his or her back, exposure to smoke, and becoming overheated while asleep can increase the infant’s risk for SIDS. Researchers and consumer safety advocates continue to look for a possible link between SIDS and soft bedding, but the U.S. Consumer Product Safety Commission has warned parents to guard against unfounded claims from manufacturers of some infant bedding materials that the use of certain products can reduce SIDS. There is no product currently available that can guarantee prevention of a SIDS death. Several studies have examined various environmental influences or child-rearing practices that may help protect an infant from SIDS; however, these factors in and of themselves, are not reliable
in predicting how, when, why, or if SIDS will occur. For example, while researchers conclude that breast feeding is beneficial, there is no clear-cut link between breast feeding and reduced risk of SIDS. Other studies have found a lower rate of SIDS among infants who used pacifiers compared with infants who did not use pacifiers. Although results of these studies tend to be consistent, there is still no evidence that pacifier use prevents SIDS. Various maternal risk factors have also been identified. They include age less than 20 at first pregnancy, a short interval between pregnancies, late or no prenatal care, smoking during and/or after pregnancy, placental abnormalities, low weight gain during pregnancy, anemia, alcohol and substance abuse, history of sexually transmitted disease or urinary tract infection. Most scientists now believe that babies who die of SIDS are born with one or more conditions that make them especially vulnerable to the internal and external stresses that occur in the life of any infant. Currently, many researchers argue that the clue to finding the cause(s) of SIDS lies in a further understanding of the development and functions of the brain and nervous system of SIDS infants. These scientists theorize that some babies at risk for SIDS have defects in those parts of the nervous system that control breathing and heart rate. Maturation of the brainstem may be delayed in SIDS infants. Myelin, a fatty substance that facilitates nerve signal transmission, appears to develop more slowly in SIDS infants than in other babies. National SIDS/Infant Death Resource Center. “What Is SIDS?” Available online. URL: http://www.sidscenter. org/SIDSFACT.HTM. Downloaded January 17, 2004.
suicide
Suicide took the lives of 29,350 Americans in 2000, with 1.7 times as many suicides as homicides. Overall, suicide is the 11th leading cause of death for all Americans, and is the third leading cause of death for young people aged 15 to 24. Males are more than four times more likely to die from suicide than are females; however, females are more likely to attempt suicide than are males. In 1999, white males accounted for 72 percent of all suicides. Together, white males and white females accounted for over 90
suicide 241 percent of all suicides. However, during the period from 1979 to 1992, suicide rates for Native Americans (a category that includes American Indians and Alaska Natives) were about 1.5 times the national rates. There was a disproportionate number of suicides among young male Native Americans during this period, as males age 15–24 accounted for 64 percent of all suicides by Native Americans. Suicide rates are generally higher than the national average in the western states and lower in the eastern and midwestern states. Fifty-seven percent of suicides in 2000 were committed with a firearm. Suicide Among the Elderly Suicide rates increase with age and are highest among Americans age 65 years and older. The 10-year period, 1980–90, was the first decade since the 1940s that the suicide rate for older residents rose instead of declined. Men accounted for 84 percent of suicides among persons age 65 years and older in 2000. From 1980 to 1998, the largest relative increases in suicide rates occurred among those 80 to 84 years of age. The rate for men in this age group increased 17 percent (from 43.5 per 100,000 to 52.0). In 2000, there were 5,306 suicides among people 65 and older, 18 percent of the nation’s 29,350 total that year. Firearms were the most common method of suicide by both males and females, 65 years and older, in 2000, accounting for 79.5 percent of male and 37 percent of female suicides in that age group. Suicide rates among the elderly are highest for those who are divorced or widowed. In 1992, the rate for divorced or widowed men in this age group was 2.7 times that for married men, 1.4 times that for never-married men, and over 17 times that for married women. The rate for divorced or widowed women was 1.8 times that for married women and 1.4 times that for never-married women. Risk factors for suicide among older persons differ from those among the young. Older persons have a higher prevalence of depression, a greater use of highly lethal methods, and social isolation. They also make fewer attempts per completed suicide, have a higher-male-to-female ratio than other groups, have often visited a health care provider before their suicide, and have more physical illnesses. According to Sharp, “senior suicides are expected to swell in coming years as baby boomers begin
reaching old age.” A trend that troubles psychologists, Sharp adds, is a “small but disturbing subgroup of senior suicides—murder-suicides,” with Florida leading the nation. “That’s when one person kills another, usually a spouse or lover, and then commits suicide. As many as 2,500 such deaths occur in the nation annually, according to estimates. Older couples account for about 20 percent of those deaths, or about 500 a year.” In Florida, where many seniors retire, the percentage of murder-suicides in older couples is double the national average. Suicide Among the Young Persons under age 25 accounted for 15 percent of all suicides in 2000. From 1952 to 1995, the incidence of suicide among adolescents and young adults nearly tripled. From 1980 to 1997, the rate of suicide among persons age 15–19 years increased by 11 percent and among persons age 10–14 years by 109 percent. From 1980 to 1996, the rate increased 105 percent for African-American males age 15–19. For young people 15–24 years old, suicide is the third-leading cause of death, behind unintentional injury and homicide. In 1999, more teenagers and young adults died from suicide than from cancer, heart disease, AIDS, birth defects, stroke, and chronic lung disease combined. Among persons age 15–19 years, firearm-related suicides accounted for more than 60 percent of the increase in the overall rate of suicide from 1980 to 1997. The risk for suicide among young people is greatest among young white males; however, from 1980 through 1995, suicide rates increased most rapidly among young black males. Although suicide among young children is a rare event, the dramatic increase in the rate among persons age 10–14 years underscores the urgent need for intensifying efforts to prevent suicide among persons in this age group. Suicide and Mental Illness According to the American Foundation for Suicide Prevention, over 90 percent of suicide victims have a significant psychiatric illness at the time of their death. These are often undiagnosed, untreated, or both. Mood disorders and substance abuse are the two most common. When both mood disorders and substance abuse are present, the risk for suicide is
242 superstitions much greater, particularly for adolescents and young adults. Research has shown that when open aggression, anxiety, or agitation is present in individuals who are depressed, the risk for suicide increases significantly. The cause of an individual suicide is invariably more complicated than a recent painful event such as the break-up of a relationship or the loss of a job. An individual suicide cannot be adequately explained as the understandable response to an individual’s stressful occupation, or to an individual’s membership in a group encountering discrimination. Social conditions alone do not explain a suicide. People who appear to become suicidal in response to such events, or in response to a physical illness, generally have significant underlying mental problems, though they may be well-hidden. Suicide and Breast Implants A series of studies across several countries have all shown a high rate of suicide among women who have had cosmetic breast implants. A Finnish study of 2,166 women, released in October 2003, found that such women were more than three times more likely to commit suicide than other women. Similar results have come from studies in Sweden, Denmark, and the United States. Researchers have not been able to give a definitive reason for the higher rate, but have proposed three possible explanations: • As a group, women who have breast implantation surgery are more likely to have serious psychological problems related to feelings about their body than the general population. • The high suicide rate may be a function of the difficulties and pain that sometimes occur years after the surgery. • The demographic of a typical plastic surgery patient. People who are white and 25–44 years old make up the majority of breast implant candidates and are at greater risk of suicide than those who are minority and middle-aged. Kaufman adds, “Both the Finnish and Swedish studies compared women with cosmetic breast implants and the general population. The 2001 National Cancer Institute study, which looked at death rates of more than 13,000 women with cos-
metic breast implants, also compared women who had implants with women who had other plastic surgery. That study found a 50 percent increase in suicides compared with the general population, but a more than 400 percent increase compared with women who had other kinds of plastic surgery.” Centers for Disease Control. “Suicide in the United States.” Available online. URL: http://www.cdc.gov/ncipc/ factsheets/suifacts.htm. Last reviewed December 11, 2003. Kaufman, Marc. “Breast Implants Linked to Suicide.” The Washington Post, October 2, 2003. Sharp, Deborah. “Senior Suicides to Increase as U.S. Ages.” USA Today, February 20, 2003.
superstitions
People use superstitions to explain the things they cannot control and to relieve the anxiety these things might cause. Superstitious practices and beliefs are most common in situations involving uncertainty, and during times of personal or social stress or crisis, when events seem to be beyond human control. No wonder, then, that superstitions about death have permeated virtually all religions, cultures, and countries, and have survived to the present day. A few of these: • Taking the corpse from the house feet first to keep the head of the corpse from facing backward and influencing another member of the family to follow him in death. • Stopping clocks in the house of the deceased to prevent bad luck for the living. • Closing the eyes of the deceased so that he will not find someone to take with him to the grave. • If it rains while a man is dying, or if lightning strikes near his house, the devil has come for the soul. • A person who dies on Good Friday will go right to heaven. • Thunder following a funeral means that the dead person’s soul has reached heaven. • A white moth inside the house or trying to enter the house means death. • If 13 people sit down at a table to eat, one of them will die before the year is over.
symbolism on gravestones 243 SUPPORT study Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments; the largest clinical study ever conducted with dying patients in the United States on problems in end-of-life decision making, and published in November 1995 in the Journal of the American Medical Association. The multi-site national study investigated how physicians and nurses responded to patients’ needs at the end of life and documented the failings of the health care system to improve end-of-life care, bringing attention to the needs of dying people into the national spotlight. In the SUPPORT study, one-third of families of dying patients reported losing most or all of the family’s major source of income; a third reported losing the family’s life savings; and 20 percent said that a family member had to either move or delay her own medical care, education, or career to meet the basic needs of her dying loved one. In response to the distressing findings from the study, the Robert Wood Johnson Foundation created LAST ACTS, a national initiative to seek specific reforms aimed at altering the behavior of physicians and other health care providers, payers of care, hospitals, nursing homes, and consumers. The SUPPORT findings also led to the Institute of Medicine convening a panel in 1996 to propose recommendations to improve end-of-life care. Concurrently, a variety of organizations and individuals embarked on a journey to transform palliative and end-of-life care across the country.
surrogate decision making A majority of states have enacted surrogate decision-making laws that allow an individual or group of individuals (usually family members), in a designated order, to guide medical treatment decisions for a patient who has lost decision-making capacity and does not have an ADVANCE DIRECTIVE. A surrogate decision maker has a duty to act according to the wishes of the patients; if those wishes are not known, the surrogate must act in the patient’s best interest. Surrogate decisionmaking avoids the expensive and time-consuming process of going to court, and such laws support the idea that the people closest to the patient are in the best position to know the incompetent patient’s wishes, or to act in that patient’s best interest.
survivor guilt A deep feeling of guilt often experienced by those who have survived some catastrophe that took the lives of many others; derives in part from a feeling that they did not do enough to save the others who perished and in part from feelings of being unworthy relative to those who died. Survivor guilt was first noted in those who survived the Holocaust. Similarly, the September 11 terrorist attacks led to many instances of survivors questioning why they survived and someone else perished, particularly when their survival seemed to have more to do with coincidence or luck than some conscious choice. Writing in Self Help Magazine following the disaster, psychiatrist Donna Marzo counseled survivors, “Rather than focus on the burden of guilt, remind yourself that you and your loved ones have been given a gift—the gift of your survival. Embrace your will to survive and fight the forces that challenge your way of being.”
symbolism on gravestones
Both casual speculation and scholarly research have been devoted to interpreting symbols on gravestones, which can reveal heavenly aspirations, occupations, familial and fraternal associations, family lineage, or simple sorrow. For example, the Association for Gravestone Studies says, “the winged hourglass tells us that time flies; the hourglass on its side, that time has stopped for the deceased; the broken flower or tree, that life has been cut short.” Describing grave marker symbols in England a couple hundred years ago, Houlbrooke writes, “The oldest surviving churchyard monuments are generally very plain, but the decoration both of tombchests and, rather later and to a more limited extent, of headstones, tended to become more elaborate. The reminders of death and time, such as the skull and crossbones, hourglass, taper, scythe, and mattock, appeared in large numbers in the churchyard after the peak of their popularity as motifs on intramural monuments had already passed. Sculptors of churchyard memorials were on the whole more conservative than those of intramural monuments. They were also eclectic in their choice of emblems and symbols. Memento mori imagery never vanished entirely from eighteenth-century headstones and monuments, but it was often combined with
244 symbols of death gentler images which were increasingly popular after 1700. These alluded to the prospect of another life rather than warning of the approach of death. They included cherubs (for immortality), angels (divine messengers), doves symbolizing the Holy Spirit, and the hearts of abiding love.” The GraveNet Project, which gives students an opportunity to investigate the rich historical value of their community within their local cemeteries, lists several gravestone symbols found in New England cemeteries, including:
symptoms of impending death
Arches (often seen with pillars) Arches symbolize the passage to heaven. The soul travels from Earth to heaven through the symbolic arches. Candles Candles or lights symbolize life. Sometimes these are seen with a skeleton or Father Time trying to extinguish the light. Gourds Coming and passing of the human life. Heart in the mouth of death’s head The soul emerging triumphant from death. Mermaids From mythology, which was a part of the Puritan’s life. Sirens or mermaids were the messengers of Proseprina and were sent to carry the souls of the dead to Hades. Tree of life Symbolized both earthly and heavenly life and spirituality. The “weeping willow” may have also symbolized the sadness family members felt at the time of a loved one’s death.
Sleepiness The patient may begin to sleep more and may be difficult to arouse. This is partially due to metabolic changes in the body. Confusion (also called delirium) The person may sometimes be confused about time, place, or who is present in the room. Some of this may be due to changes in metabolism, changes in vision, or increased sleeping. Vision changes As the person’s vision begins to fail, he or she may see only what is nearby. Although vision may decrease, the sense of hearing remains. The person may be able to hear voices, although he or she may no longer be capable of responding. Decreased appetite/refusing food and fluids As death approaches, the person may want less and less food and fluids, eventually refusing them altogether. The body is conserving for other functions requiring the energy that would be used to digest the food. Decreased urine output This occurs as fluid intake decreases and as circulation through the kidneys decreases. The person may lose bladder and/or bowel control as muscles in that area begin to relax. Periods of apnea (no breathing) The person may stop breathing for 15–45 seconds. There may be periods of rapid respiration alternating with periods of apnea, called CHEYNE-STOKES RESPIRATION. It is very common and indicates a decrease in circulation to the internal organs and build-up in the body of waste products. Wet gurgling or rattling breathing This is caused by secretions building up in the throat. Also caused by pulmonary edema from heart failure.
Gravenet. “Gravestone Symbolism.” Available online. URL: http://edutel.musenet.org:8042/gravenet/gravenet_ symbols.html. Downloaded January 17, 2004. Houlbrooke, Ralph. Death, Religion and the Family in England, 1480–1750. Oxford: Oxford University Press, 1998.
symbols of death Also called memento mori or “remember your death.” During the Middle Ages, representations of death—such as death as a human skeleton, or the Grim Reaper gathering his harvest—were intended to remind people that death is an unavoidable part of life, something to be prepared for at all times. See also PERSONIFICATION OF DEATH.
One of the greatest sources of stress for caregivers is the onset of new or more severe symptoms as death approaches. Not all symptoms appear at the same time; some may never appear. Difficult Decisions: A Family Guide, prepared by the Columbia Brigham City [Utah] Community Hospital’s Ethics Committee, to help health care providers assist families who are facing difficult decisions about the care of loved ones, describes possible symptoms indicative of the body preparing itself for death:
symptoms of impending death 245 Cool skin As the body shuts down, circulation diminishes to the arms and the legs and they may feel very cool to the touch. The pulse will become harder to feel. The skin color may change. The upper parts of the body may sweat as the peripheral circulation decreases. The underside of the body may darken in color. Even though the skin is cold to the touch, most dying persons are not aware of feeling cold. High temperature It is not unusual for a dying person to have an elevated temperature—even as high as 104°F—as he or she draws closer to death. Withdrawal The person may seem unresponsive or withdrawn. This may be the beginning of “letting go.” Out of character requests or statements This is a sign of preparation for death. Performing restless, useless, repetitive tasks This sometimes indicates something is still unresolved
and unfinished and they cannot let go. A dying person will try to hold on, even though it brings prolonged discomfort, in order to make sure those who are left behind will be all right. Death The separation becomes complete when breathing stops. What appears to be the last breath may be followed by one or two long spaced breaths and then silence. There is no pulse and no heartbeat. The eyes become fixed with the eyelids slightly open. The jaw becomes relaxed with the mouth slightly open. The bowels and/or bladder often empty. End-of-Life Care Partnership. “Difficult Decisions: A Family Guide.” Available online. URL: http://www. carefordying.org/DyingProcess/Death.htm. Downloaded January 18, 2004.
T • Discuss it in small doses over time. Give the person time to talk. Talking about death and dying is a lengthy process and will require more than one prolonged consultation.
talking about death to the dying
One of the most difficult issues for both medical caregivers and family can be initiating discussions about death and dying. Burgess et al. write, “Some practitioners worry that such discussions may remove hope from their patients, but this has not been found to be the case—rather for dying patients and their families, preparation does not preclude hope—it merely frames it. Other medical practitioners may feel they should wait until the patient raises the topic, but studies have found that patients overwhelmingly feel that this is the responsibility of the doctor.” According to KÜBLER-ROSS, the question is not whether or when to tell someone he or she is dying, but how to share the experience with them. She suggests that patients not be told how much time they are expected to have left. As Jones writes, “Patients who have a timetable in mind may focus on surviving until a certain date and then give up hope, often dying soon thereafter. Hope not only lengthens life but sustains the spirit, allowing the patient a measure of peace and optimism.” Kessler adds, “We isolate the dying by no longer talking about what’s going on. The widely held notion that the dying do not want to talk about death is a myth. They do want to talk about what is happening to them.” Gallagher also cautions, “In some cultures it is not acceptable to talk about dying as you may bring it about sooner or show lack of hope for the person who is ill.” Burgess et al. agree, telling caregivers, “Do not hesitate to ask the family about relevant cultural practices, or to contact a priest or elder of the community.” Among the guidelines and suggestions offered by the experts for talking to the dying about impending death are the following
• Listen actively and with empathy. Open-ended questions are better to explore than issues. Ask patients what they mean by their answers. • Do not give advice unless you are asked specifically for it. Not only is the person likely not to take it in, but also you may be adding extra stress. • Involve the family in discussions at some point. The doctor’s knowledge of the patient and his or her family is likely to be the most important factor in deciding when this should be. • Families and individual family members will vary in their coping styles, including their willingness to discuss issues around death and dying. Let the patient and the family determine when to move forward with discussions. • Encourage the patient to explore religious and existential issues with the most appropriate person for that patient. Burgess, Teresa, Justin Beilby, and Mary Brooksbank. Talking to Patients about Death and Dying. RACGP Online. Available online. URL: http://www.medbroadcast.com. Downloaded January 23, 2004. Gallagher, Romayne. “Talking about Death & Dying.” Available online. URL: http://www.medbroadcast.com. Downloaded January 23, 2004. Jones, Constance. R.I.P.: The Complete Book of Death & Dying. New York: HarperCollins, 1997. Kessler, David. The Needs of the Dying. New York: HarperCollins, 2000.
247
248 Taoists and death Also called Daoism; Taoism is a Chinese philosophy and religion based on the writings of Lao-Tzu, a contemporary of Confucius, which advocate humility and religious piety. Taoism started as a combination of psychology and philosophy but evolved into a religious faith in 440 C.E. when it was adopted as a state religion, along with Buddhism and Confucianism. Taoism currently has about 20 million followers, and is primarily centered in Taiwan. About 30,000 Taoists live in North America. Taoism has had a significant impact on North American culture in areas of acupuncture, herbalism, holistic medicine, meditation, and martial arts. Taoists regard life and death as different poles of a pair, balancing each other as day and night do. Death is neither to be desired nor feared. When humans die, according to Taoist teachings, they go “back into the great loom” from which all creatures emanate. After death, according to popular Taoist ritual, the soul remains near the body until burial. After a death, the household ancestors’ altar is draped in white. When a corpse is ready for burial, children of the family, who are presumed to give no thought to monetary values, are instructed to fetch some of the person’s personal treasures for burial in the coffin. The dead person’s favorite foods are also put inside, along with written prayers, which are removed by the priest and burned as offerings. At the end of the service, the coffin is sealed and the family has a banquet. A Taoist funeral may last several days. Taoist teaching gives people the hope of reaching immortality. Some Taoists have formulated elaborate expectations of paradise on mystical mountains or supernatural islands with specific geographic locations. Taoists focus almost solely on the transition of the deceased to the next world, making mourners almost irrelevant.
appropriate. Its strains are melancholy, yet full of rest and peace. Its echoes linger in the heart long after its tones have ceased to vibrate in the air.” Taps began as a revision to the signal for Extinguish Lights (Lights Out) at the end of the day. Up until the Civil War, the infantry call for Extinguish Lights was the one set down in Silas Casey’s (1801–82) Tactics, which had been borrowed from the French. The music for Taps was adapted by General Daniel Butterfield for his Union brigade (Third Brigade, First Division, Fifth Army Corps, Army of the Potomac) in July 1862. In the British army, a similar call known as Last Post has been sounded over soldiers’ graves since 1885. Whenever a person is buried with military honors anywhere in the United States, the ceremony is concluded by firing three volleys of musketry over the grave, and sounding Taps with the trumpet or bugle. But, because only 500 buglers are on active military duty on any given day, and with 1,800 veterans dying every day, it has become more difficult in recent years to provide the ceremonial bugler. Thus, in 1999 Congress passed a law allowing for Taps to be played at military funerals via tape or compact disc, on boom boxes, if no buglers could be located. The experiment did not go over well, and in 2003 the military tested an electronic bugle containing a cone-shaped digital device fit into the bell. When the “bugler” discreetly hits an on switch, pretending to blow into the bugle, the computer chip plays a satisfactory rendition of Taps. The Pentagon ordered 700 of these bugles in late 2003. The electronic bugle is not intended to replace a live bugler, only to provide a reasonable facsimile where one is not available. No official words exist for Taps, but over the years, several verses have evolved. Among them:
Robinson, B. A. “Taoism.” Ontario Consultants on Religious Tolerance. Available online. URL: http://www. religioustolerance.org/taoism.htm. Updated July 24, 2003. White, Gayle. “Living with Death.” The Atlanta Journal and Constitution, January 24, 1998.
Day is done, gone the sun, From the hills, from the lake, From the sky. All is well, safely rest, God is nigh.
Taoists and death
Taps
A military bugle call sounded at funerals, wreath-laying, and memorial services. Its haunting melody has been called “singularly beautiful and
Go to sleep, peaceful sleep, May the soldier or sailor, God keep. On the land or the deep, Safe in sleep.
technology and its impact on death and dying 249 Arlington National Ceremony. “Origin of Taps.” Arlington National Cemetery—Ceremonies. Available online. URL: http://www.arlingtoncemetery.org/ceremonies/ originoftaps.html. Downloaded April 17, 2003. Villanueva, Jari A. “24 Notes That Tap Deep Emotions.” WP-Org. Available online. URL: http://www.west-point. org/taps/Taps.html. Downloaded September 29, 2003.
U.S. General Services Administration. “Making a Will.” Consumer Information Center, Pueblo, Colorado. Available online. URL: http://www.pueblo.gsa.gov/ cic_text/money/will/makewill.htm. Downloaded August 25, 2003.
technology and its impact on death and dying taxes
The property included in a will may be subject to taxation. Planning a will needs to take into account the following: • Federal estate taxes will generally be due if the net taxable estate is worth more than $1 million. This amount is scheduled to gradually increase to $3.5 million in 2009 so that it will eventually shield $3.5 million in gift or estate transfers from tax per taxpayer. Estates in excess of the exempt amount can be taxed at a rate from 37 percent to 50 percent (the top percentage is scheduled to gradually decrease to 45 percent in 2009). These estate tax changes are scheduled to be repealed in 2010. If not extended, the tax law will revert to the estate and gift tax provisions in effect in 2001. Consult a tax or financial professional to determine a plan that is right for you and your family. • State death or inheritance taxes • Federal income taxes • State income taxes Estate taxes may be minimized by establishing a trust or giving gifts during one’s lifetime. The costs of estate taxes can also be covered by purchasing a life insurance policy intended to pay taxes. Surviving spouses may claim a $500,000 exclusion from capital gains taxes if the sale or exchange of a home takes place during the calendar year that the other spouse died. Tax experts writing in the AARP Bulletin explain, “This is because such a claim must be filed on a joint tax return. After that year, the exclusion for individual taxpayers—$250,000— would apply. This means that if the death occurred late in the year, the surviving spouse would have to act quickly or risk losing half the exclusion.” Other IRS requirements exist, so one needs to consult an accountant or tax lawyer. See also ESTATE PLANNING.
Over the past 50 years, technology has made it possible to extend life and, in many cases, prolong the process of dying. As the PARTNERSHIP FOR CARING explains, by the 1950s advances in medical technology had allowed terminally ill and permanently unconscious patients—individuals who once died quickly from complications or from an inability to eat and drink—to be kept alive dramatically longer than ever before. The newfound capability of medical science brought difficult issues into the lives of many dying patients. Where the course of nature once seemed unalterable, doctors, patients, and families suddenly needed to make decisions about when a life should end. Kelly notes that along with these advances in machines and therapies, the decisions became even more complicated. “In the 1960s, advances in lifesupport technology spawned the medical-ethics field. One challenge was to define death in a new way. For centuries, death was when a person had no pulse or breathing. With ventilators, respirators and the heart-lung machine, doctors learned to maintain function of the heart and lungs, so the clear signs of death became blurred.” Prior to these technological advances, death had always been thought to occur when heart and lung function stopped. As Slade and Lovasik explain, “Now that technology can maintain these functions artificially, death by neurologic criteria—‘brain death,’ or the cessation of both cerebral and brain stem function—has become an accepted declaration of death.” So today, death happens when the brain stops working. But, ethicists caution, scientists have developed “150 new ways to look at the brain to determine if it’s sending signals.” With medical technology making it possible to prevent death even for those who are terminally ill and comatose, the debate over the issue of EUTHANASIA has escalated. Not only has the “when” a person dies and the definition of death changed, but also “how” one dies has changed dramatically. Dr. Back writes,
250 teenagers and grief “Now, thanks to medical technology, most Americans (and others with access to this technology) . . . die of degenerative, neoplastic, and even man-made diseases.” Echoing this is Bossarte, who notes that in 1900, when the average age of death was 46 years, “most people died from infection, accident or childbirth” and “it was unusual to have a lengthy disability before death.” But she notes that advances in technology have changed all this. “The average age of death in the 21st century is 78 years. We are now most likely going to die from cancer, heart disease, stroke or dementia. We will be disabled by our illnesses, on average, more than four years.” As technology prolongs life, people face longer periods of sickness. Also, as medical technology grows even more sophisticated, scientists, doctors, and ethicists say that end-of-life decisions that millions of people face each year are becoming increasingly complex. The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), which investigated end-of-life care in acute-care hospitals, where most Americans die, showed high rates of utilization of invasive medical technology, sometimes against a patient’s expressed wishes. Some argue that medical technology has created an environment where life, disease, and death are often managed to fit the health system rather than to meet the desires of the patient. “Thus technology goes ahead of ethics. A machine, rather than the patient, determines the resulting quality of life. This raises many ethical issues.” Marshall adds to this, “Existence is often prolonged by technology long after the individual has ceased to enjoy quality of life and where the needs of the dying person and his or her relatives or friends are less important than the smooth functioning of the hospital bureaucracy.” In their 1997 policy statement on end-of-life decision making, the American Academy of Physician Assistants, noted that “The growth of medical technology and knowledge has increasingly blurred the line between life and death. Many advances are double-edged: techniques that rescue one person from premature and needless death can cause suffering, indignity, and financial ruin for another person whose death is inevitable.” Along with the ability of technology to prolong life, has come new concerns about the care of the
dying. Hospice workers have expressed concern that technology has surpassed our humanity, bringing to the forefront new questions: “What should we do (in keeping people alive)? Is one’s life as it currently exists worth living? Is living becoming an increasing burden to the person?” See also RIGHT-TO-DIE DEBATE. Back, Tony. “End-of-Life Issues.” University of Washington School of Medicine. Available online. URL: http:// eduserv.hscer.washington.edu/bioethics/topics/eol.html. Last date modified February 22, 1999. Kelly, Nellie. “The Last Conversation.” Tulsa World, May 15, 2003. Marshall, Victor W. “Death and Dying.” The 1998 Canadian Encyclopedia. Toronto: McClelland & Stewart, 1997. Slade, Joann, and Darlene Lovasik. “Understanding Brain Death Criteria.” Nursing 32, no. 12 (December 2002): 68–69.
teenagers and grief
See ADOLESCENTS AND GRIEF.
telehospice Using telecommunications and computer equipment to provide hospice or palliative care services to people who are at some distance from where the provider is located. The service can be given either to home caregivers or to other health care professionals needing specialty consultations. Growth House describes the two most common types as: Telemonitoring, or remote data collection, in which information such as weight or blood pressure are recorded by remote sensing devices. Some high-end home monitoring systems include various patient monitoring devices that are connected to a remote data capture center. Patient data is transmitted from the remote location and optionally may be stored in a computer system as part of a longitudinal patient medical record. Some systems of this type integrate the data with workflow management, data analysis tools, imaging systems, emergency alerts, and other report generation capabilities. Videoconferencing, in which people meet face-toface using video cameras. This use directly addresses the interpersonal support needs of remote patient care in ways that data systems do not.
terminal sedation 251 In 2000, the Association of Kansas Hospices, in partnership with Michigan State University and the University of Kansas Medical Center, delivered endof-life telehospice care to patient homes. The project was designed in response to findings from studies revealing that many people die in needless pain, suffering at the hands of well-intentioned but often unskilled caregivers. The project also offered interactive video educational programs to teach principles of end-of-life care to healthcare providers. Video-phone equipment was placed in the homes of rural and urban hospice patients and in two statewide hospice facilities. One-hundred-eighty-nine patients participated in Michigan, and 749 telehospice visits were recorded. Sixty-one percent had cancer, the mean age was 71, 45 percent were from rural sites, and 55 percent were from urban sites. In Kansas, a total of 88 patients participated, and 455 visits were recorded. Seventy-two percent had cancer as the primary diagnosis, 22 percent were from urban sites, and 78 percent were from rural sites. A retrospective chart review analysis of patient records, together with an analysis of 595 hospice nursing visit notes, revealed that “For 65 percent of these visits, telemedicine could reasonably have replaced the onsite visit. Thus, telehospice has the potential to replace or supplement a significant portion of hospice care.” However, one of the most significant findings of the project is that not all patients are appropriate candidates for telehospice services— e.g., patients who are in the final stages of dying. Some of the lessons learned included the following: • Telehospice was adopted more readily, and demonstrated more significant contributions, for rural patients compared to urban patients; • Many patients are better prepared to consider telehospice care a week or two into their enrollment, rather than when first being enrolled; • Not only are patients prepared to receive a wide range of services via telehospice, many also wish their providers would employ telehospice systems more frequently; • Hospice providers are the key factors in the success or failure of telehospice; • One of the services determined to be best delivered via telehospice is emergency care;
• Hospice nurses could offer instruction in using a piece of equipment, or could intervene to correct improper use of equipment, before an emergency happened, thus preventing unnecessary or prolonged emergency room visits; and • The majority of patients reported that the best thing about telehospice care was immediate access to providers. Growth House Inc. “Telehospice.” Available online. URL: http://www.growthhouse.org/telehospice.html. Downloaded January 24, 2004. Whitten, Pamela, et al. “Telehospice: End-of-Life Care over the Lines.” Nursing Management 34, no. 11 (November 2003): 36–39.
terminal care
As described by the World Health Organization, terminal care aims to improve the quality of life at the end of life, by relieving symptoms and enabling a person to die in comfort, with dignity, and in keeping with their wishes. See also HOSPICE; HOSPITAL CARE; PAIN MANAGEMENT; PALLIATIVE CARE; PALLIATIVE CARE FOR CHILDREN.
terminal condition An ongoing condition caused by injury, disease, or illness that is incurable and irreversible, from which doctors expect no reasonable medical probability of recovery and which, without treatment, can be expected to cause death. Life-sustaining treatments will prolong the dying process if the person is suffering from a terminal condition. When a person is diagnosed as terminally ill, death is expected in a relatively short period of time. terminal sedation (TS)
Following removal of any life sustaining devices, a person is heavily sedated to the point of unconsciousness for the purpose of relieving his or her symptoms and providing comfort until death occurs; it is a form of accelerating death. Symptoms—nausea, constant retching, seizures—may become so severe with dying patients that the only way to control the symptoms is to sedate the patient until he or she is unconscious. While in this state, patients are not given fluids, so death comes from dehydration.
252 thanatology Terminal sedation has been defined as the deliberate termination of awareness for relief of intractable pain when specific pain-relieving protocols or interventions are ineffective, and/or for relief of intractable emotional or spiritual anguish (existential suffering, psychological distress, emotional exhaustion). Quill et al. write, “Extremes of otherwise unrelievable suffering can be managed by terminal sedation, a practice that is gaining acceptance among palliative care groups but is not universally accepted. The prevalence of terminal sedation is unknown, and its acceptability to terminally ill patients, their families, their physicians, other health care providers, and society has yet to be demonstrated.” Noting that some ethicists and doctors have proposed TS as a legal alternative to assisted suicide, Valko cautions that “An essential component of TS is also the withdrawal of all treatment, including even food and water, so that death occurs as soon as possible. . . . Terminal sedation is not a rarely used last resort, as its supporters maintain. Even the few studies on TS report the prevalence of terminal sedation to range from 3 percent to 52 percent in the terminally ill. When the unknown actual incidence of terminating awareness—or ensuring unawareness—in patients with stroke, dementia or other serious illnesses is factored in, the use of TS as a form of COMFORT CARE may well be approaching epidemic proportions, even outside the hospice area.” While discussing the legal status of various endof-life options, Meisel et al. conclude, “Although the Supreme Court approved terminal sedation, and each of its two components is legally acceptable, the combination of the two components has never been tested in the courts, and thus its overall legality is somewhat uncertain. There is some debate about whether such practice represents ‘slow euthanasia’ or is simply a combination of standard palliative practices. In legal application, the biggest stumbling block is the physician’s intention: whether it is the relief of suffering (legal) or the active hastening of death (illegal). Clinical, ethical, and legal discussions about terminal sedation are relatively undeveloped compared with other end-of-life practices, and practice guidance has been proposed, but not endorsed by professional organizations, so terminal sedation is likely to be unevenly available.”
Meisel, Alan, Lois Snyder, and Timothy Quill. “Seven Legal Barriers to End-of-Life Care. Myths, Realities, and Grains of Truth.” The Journal of the American Medical Association, November 15, 2000. Quill, Timothy E., et al. “The Debate over PhysicianAssisted Suicide: Empirical Data and Convergent Views.” Annals of Internal Medicine 128 (April 1998): 552–558. Valko, Nancy Guilfoy. “Sedated to Death? When Comfort Care Becomes Dangerous.” Voices, Women for Faith and Family, Pentecost 2002. Available online. URL: http://www.wf-f.org/02-2-terminalsedation.html. Downloaded February 20, 2004.
thanatology
The multi-disciplinary academic study of death, dying, and bereavement, and of the psychological mechanisms for coping with death. Thanatologists study, teach, and conduct research into cultural patterns, attitudes, anthropology, sociology, and psychology of death and dying. Thanatologists do not provide medical care or grief counseling. American psychologist Herman Feifel, author of The Meaning of Death in 1959, laid the foundation for the study of death as a serious field. His work strongly influenced psychiatrist Elizabeth KÜBLER-ROSS, who pioneered the field in the 1970s. Thanatology is most often offered as a college course; a small number of universities provide academic training leading to a degree in thanatology. Hood College in Frederick, Maryland, advertises that it is the only college in the United Sates offering a master’s degree in thanatology. According to Growth House, Inc., which provides an Internet portal to resources for life-threatening illness and end of life care, the “best-known professional organization” that provides training and certification in thanatology is the ASSOCIATION FOR DEATH EDUCATION AND COUNSELING (ADEC), which offers workshops and publications for academics and counselors.
thanatophobia
An abnormal, persistent, and irrational fear of death, dying, cremation, being buried, or entombment; also called thanatophobia, which derived from the Greek word thanatos meaning “death.” Various studies have assessed and compared the degree of thanatophobia among health professionals. In one, which investigated why some
Totten trust 253 caregivers desire to avoid patients with terminal illnesses, student nurses scored lower on the thanatophobia scale than practicing physicians and medical students. Higher thanatophobia scores predicted lower scores for ratings of self-esteem in caring for elderly patients. Among senior medical students, those with lower thanatophobia scores tended to enter primary care residencies. In another study, hospice nurses had 55 percent lower thanatophobia scores than other health care professionals. See also NECROPHOBIA.
theme funerals With the aging of the trend-setting baby boomer generation, a growing trend of funerals with themes relevant to the deceased has reduced some of the grim and somber elements of funerals. Some have traced the trend to the growing gap between death and religion, others have said simply that these “new” consumers simply have not liked the way funeral directors were telling them how it should be done. In a theme funeral, the music, the setting, and the service evolve around some passion of the deceased. Themes that funeral directors have “produced” include sports, fishing, neighborhood cookout, boat cruise, boating, airplanes, vocation or profession, or other celebration of a life. Funeral directors also call these funerals “vignette” rites.
time of death
See
ALGOR MORTIS; LIVOR MORTIS;
RIGOR MORTIS.
tomb A vault or chamber used for burial of the dead. Tombs are most often large underground vaults, but are sometimes built above ground as monuments to commemorate the dead person. One example is the Taj Mahal.
Memorial Amphitheater. The white marble SARCOPHAGUS has a flat-faced form and is relieved at the corners and along the sides by neoclassic pilasters, or columns, set into the surface. Sculpted into the east panel, which faces Washington, D.C., are three Greek figures representing Peace, Victory, and Valor. The Tomb sarcophagus was placed above the grave of the Unknown Soldier of World War I. West of the World War I Unknown are the crypts of unknowns from World War II, Korea, and Vietnam. Those three graves are marked with white marble slabs flush with the plaza. The remains of the Vietnam Unknown were exhumed May 14, 1998. Based on mitochondrial DNA testing, Department of Defense scientists identified the remains as those of First Lieutenant Michael Joseph Blassie (USAF), who was shot down near An Loc, Vietnam, in 1972. It has been decided that the crypt that contained the remains of the Vietnam Unknown will remain vacant.
tombstone Although tombstone and gravestone are often used interchangeably, some use tombstone to mean a large inscribed stone standing upright over a grave, and gravestone to be a more modern inscribed stone lying flat on the ground. See also GRAVE MARKER.
total dependence
When used in ADVANCE DIRECtotal dependence means the inability to talk clearly or move by oneself; being dependent on others for feeding and hygiene; inability to communicate; and in such a condition as to be unable to be helped by rehabilitation or any other means (an example is severe stroke with paralysis and loss of speech).
TIVES,
Totten trust Tomb of the Unknowns
Located at ARLINGTON NATIONAL CEMETERY in Arlington, Virginia, and also known as the Tomb of the Unknown Soldier, although it has never been officially named; the Tomb of the Unknowns stands atop a hill overlooking Washington, D.C. On March 4, 1921, Congress approved the burial of an unidentified American soldier from World War I in the plaza of the new
A savings account naming a chosen funeral home as the recipient of the funds upon one’s death in order to pay for final arrangements. Such an arrangement lets the funds avoid probate so they will be available immediately for funeral costs. In the meantime, the account holder must pay income taxes on earnings. Unlike money applied to traditional funeral prepayment plans, the trust funds are easily transferred or withdrawn if
254 transporting human remains need be and one has complete control over the money during one’s life.
transporting human remains
Shipping human remains from place of death to place of burial is not unusual; in fact, for many years the “exporting” of bodies has been one of Florida’s largest industries. Schmadeke writes, “Almost 20 percent of the 7,825 people who died in Collier and Lee counties in 2001 were transported out of state, according to figures compiled by the Florida Department of Health. Collier County had the lowest burial rate of any county in the state—16 percent—and the fourth-highest percentage of remains shipped out of state. A funeral industry consultant estimates that this particular market segment produces more than $10 million in annual revenue in Florida, perhaps twice that.” In addition to people who have retired to the Sunbelt preferring burial back home, many immigrants who die in the United States have let their families know that they want to be buried in their home countries. In New York City, for example, a company that runs 15 funeral homes in Brooklyn, Manhattan, and the Bronx, says that about half of its Puerto Rican clients, three-fourths of its Dominican and Ecuadorean clients, and 95 percent of its Mexican clients want bodies sent back to their homelands. Although airlines generally require that remains be embalmed and shipped in an approved container or AIR TRAY, Schmadeke notes that those Orthodox Jews and Muslims who do not condone embalming may be transported on airlines if their remains are placed in “special hermetically sealed containers with some type of cooling agent. If dry ice is used, there can be no pets in the cargo area because the dry ice releases carbon dioxide. Some funeral directors use ice packs similar to those found in Coleman coolers instead.” When shipping remains internationally, it is important to be aware that each country has different rules and regulations. Among the more common requirements are for specified documents to accompany the body, such as: death certificate, embalming report, passport, burial permit, and a letter from the physician stating that the deceased did not die from a communicable disease. Some
countries require that the remains be shipped in a sealed casket along with the air tray. Within the United States, most major airlines have no restrictions for the carrying-on of cremains, but funeral directors suggest that the bearer carry a certified copy of the death certificate at all times in case there is any question about the carry-on package. They also recommend leaving the cremains in the plastic temporary container that most cremains are placed in at the crematory rather than placing them in the urn in order to prevent any metal in the urn from triggering X-ray machine or metal detector alarms. According to the FUNERAL CONSUMERS ALLIANCE, “In most areas, it is legal for a family to transport the body. Even if the family were to rent a van, it might be considerably less expensive than airfare, and such a journey may have some very therapeutic value. Most airlines, however, do offer a bereavement rate at a deep discount for people flying to a funeral.” Funeral Consumers Alliance. “Death in One State, Burial in Another: How to Avoid Double Billing.” Available online. URL: http://www.funerals.org/faq/twostate. htm. Downloaded January 27, 2004. Lahiri, Tripti. “In Death, Homeward Bound.” The New York Times, June 26, 2003. Schmadeke, Steve. “SW Florida’s Largest Air Freight Export? It’s, Well, Bodies . . .” Naples Daily News, March 31, 2003.
traumatic death Death as a result of traumatic accident or disaster. Traumatic injury is the most frequent cause of death in persons younger than age 44, and the eighth-leading cause of death in patients older than age 65. In a May 2001 address, Secretary of Transportation Norman Y. Mineta noted that traffic crashes are the leading cause of death for both children and adults, ages six to 33, and represent nearly one-half of all traumatic deaths. Grief Issues Associated with Traumatic Death According to Australia’s National Association for Loss and Grief, a traumatic death can raise a number of complex grief issues for people, especially if the bereaved person was physically injured or
traumatic grief 255 threatened during the disaster. Memories of the disaster, particularly if a person’s relative died in extremely distressing circumstances, may dominate a person’s thoughts, rather than memories of the dead relative himself. The bereaved person may also suffer from SURVIVOR GUILT, questioning why he or she survived when others died and believing that he could or should have done more to prevent the tragedy. Kaltman and Bonanno found that bereavement following traumatic death results in development of post-traumatic stress disorder symptoms over and above the normal grief response and thus may contribute to a more severe grief response. A useful strategy can be to help the person separate the traumatic memories of the death from the feelings of longing and positive attachment felt toward the person who has died. A further issue that can disrupt the grief process is the tendency for people who have been severely traumatized to become emotionally numb, avoid talking about the issue, and shut down. This can make it difficult for them to access their inner feelings and to work through the disruptions and losses caused by the traumatic event. It can be important to talk through, at length, the feelings of disruption, loss, horror, and fear of the traumatic event. Some people may need to seek help from a health worker such as a doctor or counselor for assistance in managing their grief and coming to terms with the horror and fear of the traumatic event. Cunningham cautions that if a teenager witnesses a traumatic death, a state of shock and disbelief could last for months. “Be prepared for signs of posttraumatic stress such as flashbacks, nightmares, etc.” See also TRAUMATIC GRIEF.
traumatic grief
Cunningham, Linda. “Grief and the Adolescent.” TAG: Teen Age Grief Inc. Available online. URL: http://www. thevine.net/~tag/grief.html. Downloaded March 3, 2003. Kaltman, Stacey, and George A. Bonanno. “Trauma and Bereavement: Examining the Impact of Sudden and Violent Deaths.” Journal of Anxiety Disorders 17, no. 2 (2003): 131–147. National Association for Loss & Grief. “Grief Reactions Associated with Accidental or Traumatic Death.” Department of General Practice at the University of Adelaide, Australia. Available online. URL: http://www.grieflink.asn.au/ traumatic.html. Last updated June 30, 2003.
• Feeling life is empty
Prolonged grief that becomes overwhelming. In her fact sheet on managing traumatic grief, written for the National Center for PostTraumatic Stress Disorder, Dr. Shear explains that a sense of disbelief or intense, uncontrollable emotionality is very frequent following the violent death of a loved one. For most, this initial reaction subsides with time, and the bereaved person finds a way to again engage fully in life. Little is known about the course of bereavement following violent death, but available studies have consistently found that symptoms and impairment are more prolonged and a sense of resolution less likely. Sometimes the intensity of a person’s grief may be overwhelming or last longer than is healthy, which may occur for a variety of reasons. The relationship between the deceased and the bereaved might have been very close or complicated; the circumstances of the death may be sudden or traumatic, as in accident, disaster, or illness; or the grieving person may not have good coping skills or the social support that would help the grieving process. In situations like these, it may be helpful to seek professional help or counseling in order to resolve the grief. When grief goes on longer than is healthy, or when it is overwhelming, a diagnosis of traumatic grief might be appropriate. Symptoms of Traumatic Grief • Preoccupation with the deceased • Pain in the same area as the deceased • Memories are upsetting • Avoid reminders of the death • Death is unacceptable • Longing for the person • Hear the voice of the person who died • Drawn to places and things associated with the deceased • See the person who died • Anger about the death • Feel it is unfair to live when this person died • Disbelief about the death • Bitter about the death
256 traumatic grief • Feeling stunned or dazed • Envious of others • Difficulty trusting others • Lonely most of the time • Difficulty caring about others Treatment of Traumatic Grief According to Dr. Shear, few treatments have been developed or tested for symptoms of traumatic grief. “Studies of early intervention for grief document some reduction in grief symptoms, with support groups showing efficacy equal to that of active psychotherapy. An early study of a behavioral therapy called ‘guided mourning’ also appeared to have beneficial effects, although grief outcome was not measured. A specific Traumatic Grief Treatment (TGT) is currently undergoing randomized controlled testing. In a pilot study, TGT had a large effect size, even taking into consideration individuals who did not complete the full course of the treatment.” Components of this treatment include: • Providing information about bereavement and grief to bereaved individuals and their families • The bereaved describing the deceased and relating the history of the relationship with the deceased • Relating the story of the death and its aftermath • Careful assessment of current grief levels, target grief levels, and components of grief (i.e., cognitive, behavioral, and somatic) • Reviewing the bereaved’s personal goals and determining how the bereaved person will know when these goals have been met • Carefully managed imaginal exposure to the death and related events • In vivo exposure to situations that are avoided and/or response prevention for situations of preoccupation • Focusing on positive memories of the deceased Dr. Shear cautions, “Therapists should undertake imaginal exposure only if they are familiar with this technique and with emotion control techniques. The remainder of the treatment may be of help alone, but it has not been tested. It is also important
to evaluate the bereaved person’s social support system and encourage engagement with existing supportive people. To date, no treatment has been proven effective in the early stages of bereavement, and there is some indication that for some people formal grief counseling can do more harm than good. In light of this, caution may be indicated.” Guidelines Shear offers for early treatment in the acute phase of traumatic grief include: • Allowing the bereaved person to talk about the nature and circumstances of his loss according to his own readiness (without probing) • Educating about the course of bereavement and what to expect • Assessing for possible troubling symptoms like an unusual intensity of grief reactions or intrusive thoughts • Encouraging, as much as possible without intruding, the use of social support and the broadening of activities • Encouraging positive memories and a feeling of connection to the deceased, which may help supplant traumatic memories Pharmacotherapy may also be helpful for individuals suffering from traumatic grief; however, little testing has been done in this area. As with depression and post-traumatic stress disorder, serotoninactive medications may have some beneficial effect. Brandsma, Jeffrey, and Lee Hyer. “Resolution of Traumatic Grief in Combat Veterans.” NCP Clinical Quarterly 5, no. 2/3 (Summer 1995): 14–16. Available online. URL: http://www.ncptsd.org/publications/cq/ v5/n2-3/brandsma.html. Downloaded July 20, 2004. Jacobs, S., and H. Prigerson. “Psychotherapy of Traumatic Grief: A Review of Evidence for Psychotherapeutic Treatments.” Death Studies 24, no. 6 (September 2000): 479–495. Shear, Katherine. “Managing Grief after Disaster,” National Center for PTSD. Available online. URL: http:// www.ncptsd.org/facts/disasters/fs_grief_disaster.html. Last updated September 1, 2003. Shear, M. Katherine, and Krissa Smith-Caroff. “Traumatic Loss and the Syndrome of Complicated Grief.” PTSD Research Quarterly 13, no. 1 (Winter 2002): 1–7.
trust 257 Shear, M. K., et al. “Traumatic Grief Treatment: A Pilot Study.” American Journal of Psychiatry 158, no. 9 (September 2001): 1506–1508.
tree burial
Disposal of the dead by placing the corpse among the branches of a tree or in a hollow trunk, a practice still popular among some primitive cultures. Taylor writes, “New Caledonians and inland mountain peoples of Borneo traditionally place their dead erect within the trunks of trees, replacing the bark over the corpse to hide it from view.” For most Native American tribes, tree burial, although often used, “was not the permanent disposition of the corpse, but was followed after a few months or a year by a secondary burial in which the remains were inhumed.” The skull was kept by some peoples and placed on an ancestor shrine. Today, China’s funeral reform is calling for a new type of tree burial. Because of shrinking land resources for a growing population, the traditional elaborate tomb burial, which takes up valuable farmland, is being discouraged. With cremation now widely accepted (having been promoted since 1956), leaders are advocating burying the “bone ashes” under trees. In one memorial park, nearly 10,000 trees have been used for this purpose. Tree burials save farmland and increase green areas.
Xinhua News Agency. “More Chinese People Choosing ‘Tree Burial.’” People’s Daily, April 4, 2002. Taylor, Richard P. Death and the Afterlife: A Cultural Encyclopedia. Santa Barbara, Calif.: ABC-CLIO Inc., 2000.
purchase a new policy. But to avoid inclusion in an estate, such trusts must be irrevocable, meaning the trust cannot be dissolved and the terms of the trust cannot be changed later. When properly planned, proceeds from life insurance held by the trust may pass to trust beneficiaries without income or estate taxes, giving them cash that may be used to help pay estate taxes or other expenses, such as debts or funeral costs. However, Klein cautions, “Typically, trusts are more expensive to set up than wills (one clue as to why they’re frequently promoted on late-night TV) and they don’t always achieve the much-touted goal of allowing your family to ‘avoid probate’ after your death. That’s because there are almost always some assets held outside of the trust that fail to get transferred to the trust during your lifetime.” Klein suggests several reasons for considering a trust: • If you foresee that your will might be contested. • When wills go through probate court, they become part of the public record. For that reason, high-profile individuals who want to keep their financial holdings private often opt for trusts, which are not public. • If you are married to a non-U.S. citizen, you’ll need to set up a trust to ensure that your spouse can inherit your assets without your estate being subject to immediate estate taxes. The marital deduction that allows Americans to inherit any amount of property from their spouses without paying taxes does not apply to non-citizens. See also LIVING TRUSTS.
trust
A legal arrangement whereby one person (the grantor) gives control of his property to a trust, which is administered by a trustee for the beneficiary’s benefit. The grantor, trustee, and beneficiary may be the same person. The grantor names a successor trustee in the event of incapacitation or death, as well as successor beneficiaries. Life insurance trusts can be designed to keep the proceeds of a life insurance policy out of one’s estate and give the estate liquidity. Generally, a person can fund a life insurance trust either by transferring an existing life insurance policy or by having the trust
Klein, Karen E. “Why Choose Trusts over Wills?” Newsday, July 25, 2003. U.S. General Services Admin. “Establishing a Trust Fund.” Life Advice. Consumer Information Catalog, Pueblo, Colorado. Available online. URL: http://www.pueblo. gsa.gov/cic_text/money/trust-fund/trusfund.htm. Downloaded August 25, 2003. U.S. General Services Admin. “Planning Your Estate.” Life Advice. Consumer Information Catalog, Pueblo, Colorado. Available online. URL: http://www.pueblo.gsa. gov/cic_text/money/estate/estate.htm. Downloaded January 11, 2003.
258 tube feeding tube feeding
See ARTIFICIAL HYDRATION AND NUTRI-
TION (AHN).
president-elect; the national salute of 21 guns is fired at noon of the day of the funeral of a president, ex-president, or president-elect, as well as on other ceremonial occasions.
21-gun salute
In 1842, the presidential salute was formally established at 21 guns. In 1890, regulations designated the “national salute” as 21 guns and redesignated the traditional Independence Day salute, the “Salute to the Union,” as equal to the number of states. Fifty guns are also fired on all military installations equipped to do so at close of day of the funeral of a president, ex-president, or
Mikkelson, Barbara. “Military.” Urban Legends Reference Pages. Available online. URL: http://www.snopes.com/ military/21gun.htm. Downloaded September 29, 2003. U.S. Army. “Origin of the 21-Gun Salute.” U.S. Army Center of Military History. Available online. URL: http:// www.army.mil/cmh-pg/faq/salute.htm. Updated October 3, 2003.
U heraldic funerals who in the 1680s took up the additional trade of coffin-making ‘and all other conveniences belonging to funerals’; his trade card illustrated with a skull and cross bones.” According to the Wyoming Funeral Directors Association, “By the turn of the twentieth century, wooden coffins were being made to order by the local carpenter or cabinet maker. A few even made coffins beforehand but met with criticism by the public for their boldness. The cabinetmaker rarely became involved in any aspect of the funeral other than providing the coffin. Even the conveyance of the deceased was done by someone else, the livery man. With the passing of time, these men became more and more involved in providing other services and advice to those planning the funeral. Eventually the person who would ‘undertake’ to manage all funeral details and provide funeral merchandise became known as an undertaker. He eventually obtained and provided all the necessary items for the funeral including the hearse, door badges, and coffin rests.”
unconscious state
Loss of the ability to maintain awareness of oneself and environment combined with markedly reduced responsiveness to environmental stimuli. Permanently unconscious state means an irreversible condition. It is a term used frequently in living wills; for example, the State of Ohio Living Will Statement reads, “Permanently unconscious state means an irreversible condition in which I am permanently unaware of myself and my surroundings. My physician and one other physician must examine me and agree that the total loss of higher brain function has left me unable to feel pain or suffering.” In 1995, Maillet wrote, “In the United States, 14,000 to 35,000 persons, 4,000 to 10,000 of which are children, are in a permanently unconscious state. This number is expected to increase as the population ages and acute trauma care improves.” A person in a wakeful unconscious state is said to be in a vegetative state. See also PERSISTENT VEGETATIVE STATE.
Maillet, Julie O’Sullivan. “Position of the American Dietetic Association: Legal and Ethical Issues in Feeding Permanently Unconscious Patients.” Journal of the American Dietetic Association 95, no. 2 (February 1995): 231–234.
Jupp, Peter C., and Clare Gittings, editors. Death in England— An Illustrated History. Manchester, England: Manchester University Press, 1999.
Uniform Anatomical Gift Act (UAGA)
Legislation adopted by all 50 states and the District of Columbia that indicates procedures for donation of all or part of a decedent’s body for such activities as medical education, scientific research, and organ transplantation. The Uniform Anatomical Gift Act was enacted in August 1968 by the National Conference of Commissioners on Uniform State Laws for the purpose of establishing comprehensive and uniform laws regarding organ and tissue donations.
undertaker
Early name for mortician or funeral director. Some historians trace the name to the 1800s, when caskets were often made by furniture makers, some of whom began to “undertake” the responsibility of arranging the funerals. But Jupp and Gittings say it goes back even further: “The first undertaker is relatively late appearing on the scene. Some historians identify him as William Russell, a painter of scutcheons and hatchments for full
259
260 urn If an individual dies in a state other than that where the gift was executed, uncertainty about the applicable law is eliminated and the gift will be recognized. It was also designed to ensure compliance with the donor’s wishes. All 50 states and the District of Columbia have adopted the act, with some states making minor variations. Under the 1968 Uniform Anatomical Gift Act: • Any individual 18 years of age or older could make or refuse to make an anatomical gift. • Certain people could authorize a gift if the decedent had not indicated his or her wishes. These people fall into the following order of priority: spouse, adult son or daughter, parent, adult sibling, grandparent, and guardian. • The donor could specify any of the following to become donees of anatomical gifts for the purposes stated: a. A hospital, physician, surgeon, or procurement organization for transplantation, therapy, medical or dental education, research, or the advancement of medical or dental science. b. An accredited medical or dental school, college, or university for education, research, or the advancement of medical or dental science. c. A designated individual for transplantation or therapy needed by that individual. • Body parts could be donated through a will (which became effective upon death and did not have to wait for probate) or a signed and witnessed donor card. • Any gift that was not revoked by the donor before death was irrevocable and did not require the consent or concurrence of any person after the donor’s death. • The organ or tissue must be taken without unnecessary mutilation. • Any person who acted in good faith in accordance with the terms of the UAGA or any state or nation’s anatomical gift laws was not liable for civil damages or subject to criminal prosecution for his or her act. • The time of death was to be determined by a physician who tended the donor at his or her death. This physician was not to participate in the procedure for organ removal.
A shortage of organs prompted further legislative action in 1987 with an amendment to the UAGA. Jackson explains, “This amendment required all public and private hospitals to inquire into the donor status of every patient at the time of admission. If the patient was not a donor, a hospital representative was to discuss the option of organ donation with the patient and to record in the medical record the patient’s response. In emergency situations or in the case of incapacitation, law enforcement officers and other emergency responders and hospitals are required to make a reasonable search for documents indicating the patient’s donation wishes. If no such documentation is found, medical personnel are required to discuss the option of donation with the patient’s family. The donor’s prior intent supersedes the family’s wishes. Consistent with the National Organ Transplant Act, the amendment included a prohibition against the sale or purchase of organs. Most states did not enact the provisions of the 1987 amendment or, as in the case of New Jersey, only enacted some of its provisions.” Douglass, Lisa E. “Organ Donation, Procurement and Transplantation: The Process, the Problems, the Law.” UMKC Law Review 65 (1996): 201, 203–205. Health Resources and Services Administration. “Organ Procurement and Transplantation Network; Final Rule.” Federal Register. 63 (19980): 16,296–16,338. Jackson, John Zen. “When It Comes to Transplant Organs, Demand Far Exceeds Supply.” New Jersey Law Journal, December 16, 2002.
urn
A container to hold cremated remains. It can be placed in a columbarium or mausoleum, buried in the ground, or retained by the family. Some families select an urn suitable for placement on a mantle or shelf. Urns are available in a variety of shapes, sizes, and materials, with personal plans for the final placement of the urn playing an important part in the selection process. Some urns are ornately designed for display purposes while others are basic in style. Pewter, bronze, hardwood, ceramic, porcelain, glass, and marble are just a few of the materials used for urn construction. Urns can also be personalized with engravings or laser designs, especially for keeping the urn in a family member’s
U.S. Living Will Registry 261 home. Some incorporate the use of clocks or memento boxes; others are specially designed flag case urns for veterans. Still others have the appearance of books, or have matching picture frames, candlesticks, and bud vases. According to Consumers Digest in 1995, urns could cost from $100 to $1,500. In some cultures, notably in China, parents’ ashes are likely to be kept in an urn on a table for ancestor worship. A writer studying Montreal Catholic and Protestant cemeteries of the latter 19th century noted that “In Catholic iconography, the urn was a symbol of death and mourning.” Sax-Tiedemann Funeral Homes & Crematorium. “Traditional Funeral or Direct Cremation—Are There Any Options In Between?” Sax-Tiedemann Funeral Home & Crematorium. Available online: http://www.saxtiedemann.com/faq.html. Downloaded June 20, 2003.
U.S. Living Will Registry
A computerized service that electronically stores medical advance care documents and makes them available at any time to authorized health care facilities. The registry was founded by Joseph T. Barmakian, M.D., a New Jersey orthopedic surgeon, in 1996; he recognized the need for a registry service that provides medical personnel and patients’ families with advance directives whenever and wherever they are needed while maintaining the patients’ privacy and confidentiality.
Individuals must register through a member health care provider or “Community Partner.” The providers pay annual fees for unlimited access to the registry’s automated system, and so that their patients are able to register documents with the registry. Also, Community Partners of the Registry (attorneys, accountants, financial planners, community organizations, senior citizen groups, retailers, automobile clubs) pay annual fees so that their members, clients, employees, or customers can register their documents. These “user fees” allow individuals to register and maintain their information free of charge. The registry helps individuals locate a provider or partner in their areas. Registration is for life, with update forms sent out annually so that information remains current. The registry promises there will never be a renewal or update charge. For more information contact: U.S. Living Will Registry 523 Westfield Avenue PO Box 2789 Westfield, NJ 07091–2789 (800) LIV-WILL (800–548–9455) (908) 654–1919 (fax)
[email protected] www.uslivingwillregistry.com V
V the names of these products—such as Duravault and Protector vault—neither a grave liner nor a vault is meant to protect the casket indefinitely. The purpose of either is to help the cemetery maintain its level grounds (graves sink when the casket and the body naturally decompose) and make mowing safer and easier, thus keeping maintenance costs low.” It is illegal for funeral providers to claim that a vault will keep water, dirt, or other debris from penetrating into the casket if that is not true. State laws do not require a vault or even a liner, but individual cemeteries may. According to Consumers Research Magazine in 1995, prices of vaults typically ranged from $700 to $1,800, and were not usually included in funeral package costs. TOMBs used for burial of families or larger groups are sometimes also called vaults.
VA Hospice and Palliative Care Initiative (VAHPC) A two-year program, begun in April 2002, designed to accelerate access to hospice and palliative care services for American veterans. The VAHPC Initiative set out to: • Improve access to hospice and palliative care services; • Expand and strengthen relationships between VA and non-VA health care organizations to enhance the delivery of hospice and palliative care services; • Advance opportunities for palliative care education of VA employees and trainees through the enhancement of staff development activities, academic programs, and multimedia products; and • Establish an enduring network of administrators, clinicians, and educators interested in advancing exemplary hospice and palliative care services and education.
Carlson, Lisa. Caring for the Dead. Hinesburg, Vt.: Upper Access Books, 1998. Thornton, V. K. The Survivor’s Guide. Los Angeles: Silver Lake Publishing, 2004.
Valhalla
In Scandinavian mythology, a palace of immortality in which heroes killed in battle feast for eternity. It has come to mean a peaceful and beautiful place, or paradise, where those who are favored by the gods can go when they die. Similar to Elysian Fields in Greek mythology.
ventilator
A machine for artificial ventilation, which helps a patient breathe by moving air and oxygen into and out of the lungs. A ventilator may be used temporarily until a person can breathe on his or her own; other times it is a permanent breathing aid. When permanent, a tube is often placed directly into a patient’s windpipe via a procedure called a tracheotomy. Because a permanent ventilator can prolong death, some people request that such mechanical life support not be used only to put off a natural death. Some religions believe that once a dying person goes on a ventilator to help him breathe, that support may not be discontinued until the heart stops. Others believe the ventilator plug
vault
More substantial version of a GRAVE LINER, made of a solid piece of steel-reinforced concrete, fiberglass, or copper, and with a tight-fitting lid, into which a casket is placed for burial. Originally, vaults were intended to discourage grave robbers, but today they are promoted as a way to protect the casket. Thornton cautions: “In spite of what you may be led to believe by the funeral director or even by
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264 veterans burial benefits can be pulled if there is no brain activity and no autonomous respiration.
veterans burial benefits
The Veterans Administration (VA) estimates that more than 574,000 veterans died in 2000, with 66 percent from the World War II era. Veteran deaths are expected to peak at 620,000 in 2008. Reimbursement of Burial Expenses The VA will pay a burial allowance up to $2,000 if the veteran’s death is service-connected. In some instances, the VA also will pay the cost of transporting the remains of a service-disabled veteran to the national cemetery nearest the home of the deceased that has available gravesites. In such cases, the person who bore the veteran’s burial expenses may claim reimbursement from the VA. There is no time limit for filing reimbursement claims in serviceconnected death cases. The VA will pay a $300 burial and funeral expense allowance for veterans who, at time of death, were entitled to receive pension or compensation or would have been entitled to compensation but for receipt of military retirement pay. Eligibility also may be established when death occurs in a VA facility, a nursing home under VA contract, or a state veterans nursing home. Additional costs of transportation of the remains may be paid. In non-service-connected death cases, claims must be filed within two years after permanent burial or cremation. The VA will pay a $300 plot allowance when a veteran is not buried in a cemetery that is under U.S. government jurisdiction, under the following circumstances: the veteran was discharged from active duty because of disability incurred or aggravated in the line of duty; the veteran was in receipt of compensation or a pension or would have been, except for receiving military retired pay; or the veteran died in a VA facility. Burial in National Cemeteries Servicemembers who die while on active duty and veterans discharged under conditions other than dishonorable are eligible for burial in a VA national cemetery. With certain exceptions, service beginning after September 7, 1980, as an enlisted person, and after October 16, 1981, as an officer, must be for
a minimum of 24 consecutive months or the full period for which the person was called to active duty. Reservists and National Guard members are eligible if they were entitled to retired pay at the time of death, or would have been entitled had they not been under the age of 60. Headstones and Markers Upon request, the VA furnishes headstones or markers worldwide and at no charge for the grave of an eligible veteran or a servicemember who dies while on active duty. Flat bronze, granite, or marble markers and upright granite and marble headstones are available. When burial occurs in a private cemetery, an application for a government-furnished headstone or marker must be made to the VA. The government will ship the headstone or marker free of charge, but will not pay for its placement. Headstones and markers previously provided by the government may be replaced at government expense if badly deteriorated, illegible, stolen, or vandalized. Presidential Memorial Certificates Certificates signed by the president are issued upon request to recognize the military service of honorably discharged deceased veterans. Next of kin, other relatives, and friends may request Presidential Memorial Certificates in person at any VA regional office or by mail: Presidential Memorial Certificates (402E) National Cemetery Administration 810 Vermont Avenue NW Washington, DC 20420–0001 There is no preprinted form to complete or time limit for requesting these certificates, but requests should include a copy, not the original, of the deceased veteran’s discharge document and clearly indicate to what address the certificate should be sent. A sample certificate can be found on the Internet (http://www.cem.va.gov/pmc.htm). Burial Flags The VA will furnish a U.S. burial flag for memorialization of: 1. veterans who served during wartime, or served after Jan. 31, 1955; or
Victorian mourning dress 265 2. veterans who were entitled to retired pay for service in the reserves, or would have been entitled to such pay if not for being under 60 years of age; or 3. members or former members of the Selected Reserve who served at least one enlistment or, in the case of an officer, the period of initial obligation, or were discharged for disability incurred or aggravated in line of duty, or died while a member of the Selected Reserve. See also
MILITARY FUNERAL HONORS; NATIONAL
CEMETERIES.
Department of Veterans Affairs. Federal Benefits for Veterans and Dependents—2003 Edition. Available online. URL: http://www1.va.gov/pubaff/fedben/Fedben.pdf. Downloaded February 3, 2004.
viatical settlement Also called life settlement. A contract in which the owner of a life insurance policy sells the death benefit of their policy to a third party in return for an immediate cash payment. Originally, it referred to the proceeds from the sale of a life insurance policy to a third party by a terminally ill individual. The term today covers the sale by persons who are not terminally ill, and also refers to the sale by a policy owner who may not be the insured individual, such as a corporation or another family member. The business of viatical settlements started when the epidemic of AIDS began to make itself felt among terminally ill holders of insurance policies, who, as a last-ditch effort, needed to access their policies’ face value to provide money for their needs in their final years of life. The term viatical comes from the Latin word viaticum, which means an allowance for traveling expenses or provisions for a long journey. The person selling the life insurance policy is the viator. He or she will get a cash payment from the settlement. This person gives up ownership of the policy in return for a cash payment that is less than the full amount of the death benefit in the life insurance policy. A viatical settlement provider is the person or company that buys the life insurance policy. The viatical settlement provider becomes the policy owner, must pay any premiums that are due, and
eventually collects the full amount of the death benefit from the insurance company. The person or company who represents the seller (viator) and can comparison shop for viatical offers is a viatical settlement broker. Investors in viatical contracts recoup their investment when the full death benefits are paid upon the death of the original policy owner. A qualified covered condition means a heart attack, stroke, life-threatening cancer, renal failure, Alzheimer’s disease, coronary artery surgery, paraplegia, major organ transplantation, or total and permanent disability. A viatical contract requires close scrutiny by the original policy owner because these agreements are complicated financial and legal transactions. When considering such a contract, it is best to consult an attorney, physician, life insurance agent or company, and accountant or financial planner. Proceeds from the settlement may create tax liability and affect Medicaid eligibility. The Viatical and Life Settlement Association of America, which promotes the development, integrity, and reputation of the viatical and life settlement industry, offers information on each state’s legislation or regulations concerning viatical settlements on its Web site at http://www.viatical.org/ States.htm. Giacalone, Joseph A. “Analyzing an Emerging Industry: Viatical Transactions and the Secondary Market for Life Insurance Policies.” Southern Business Review 27, no. 1 (Fall 2001): 1–7.
Victorian mourning dress
The Victorian age was named for England’s Queen Victoria, who reigned from 1837 until her death on January 22, 1901. Victoria’s husband, Prince Albert, died of typhoid in 1861, and for the next 40 years, the queen was in mourning. She remained in full mourning for three years and dressed her entire court that way. These royal court regulations filtered down the social ladder to apply to everyone but most especially to widows, who were required to wear full black mourning for two years—non-reflective black twill fabric (called parramatta) and crepe for the first year of deepest mourning, followed by nine months of dull black silk, heavily trimmed with
266 viewing crepe, and then three months when crepe was discarded. Black was symbolic of spiritual darkness. The colors of half-mourning, such as grey and lavender, black and white, were allowed during the final six months of the two-year period. Jewelry was limited to jet, a hard, black coal-like material sometimes combined with woven hair of the deceased. Jalland adds, “Victorian novelists, notably Charles Dickens, tended to ridicule extremes in mourning etiquette, enhancing the impression that widows were motivated more often by social emulation, convention, and vanity than genuine sorrow.” Hell writes, “Middle and lower class women would go to great lengths to appear fashionable in times of mourning. Dying clothing black and then bleaching them out again was quite common. The industry of mourning became so vital to tailors that rumors were spread concerning the bad luck of recycling funeral attire.” She notes that dressing in full white, including the weeping veil, was a sign of mourning in the tropics. Children’s garments were white with black trim in the summer and gray with black trim in the winter. This was mostly for infants and girls between the ages of 15 and 17. Children under the age of 15 were thought not to be able to handle the grief brought on by assuming mourning. A girl was considered a woman at 17 and could be in full mourning if a loved one was to die. A man need only wear a black armband to signify he was in mourning. See also MOURNING CARDS; MOURNING RITUALS AND CUSTOMS. Hell, Kyshah. “Victorian Mourning Garb,” Morbid Outlook. Available online. URL: http://www.morbidoutlook. com/fashion/historical/2001_03_victorianmourn.html. Downloaded February 2, 2004. Jalland, Pat. Death in the Victorian Family. Oxford: Oxford University Press, 1996.
viewing
See VISITATION.
violent death A death in which there is an intent to threaten, frighten, or hurt someone, including oneself. Violence is a major public health problem in
the United States. Homicide and suicide account for more than 46,000 deaths each year. In 2000, homicides claimed the lives of more than 16,000 Americans and suicide claimed more than 29,000 lives. Suicide is the second-leading cause of death for young adults ages 25–34 years in the United States and the third-leading cause of death for youths aged 10–24 years. Homicide is the second-leading cause of death for youths aged 15 to 24 years in the United States and the fourth-leading cause of death for children age one to 14 years. The Centers for Disease Control and Prevention (CDC) has expressed concern that current data do not provide all the information needed to accurately assess the factors causing violent deaths. Death certificates, for example, cannot link victim and suspect information. To remedy this situation, CDC has established a state-based National Violent Death Reporting System (NVDRS), which will accumulate, through state and local agencies, detailed information from medical examiners, coroners, police, crime labs, and death certificates that could answer important fundamental questions about trends and patterns of violence, which can then become part of a national database. Information on violent deaths has always been collected, but has invariably remained within an agency, department, or even a single computer. After testing in several states, CDC expanded the funding of NVDRS in 2004, with the intention of eventually funding all 50 states and the District of Columbia. NVDRS will assist state governments to assess the extent of the violence-related deaths in their states, identify risk factors, and develop and evaluate violence prevention program efforts.
virtual sympathy notes Thousands of funeral homes now offer virtual sympathy notes, giving people the opportunity to say a final goodbye electronically, either via e-mail or with more elaborate tributes posted on the World Wide Web. Although the original idea for e-mail or Web sympathy notes was reportedly to offer distant friends and relatives a way in which to offer condolences when they could not travel to the funeral, many are being posted by local friends, neighbors, and even family members. Not everyone is pleased with the trend;
vital signs 267 some funeral directors are concerned that the ease of virtual condolences could lead to fewer people attending funeral services and thereby not being as helpful to grieving families. Etiquette experts say they are too impersonal and even tacky. Regardless, many obituaries today list e-mail addresses and/or Web site URLs for sending condolences, either through the funeral home’s own Web site or through funeral portals such as FuneralNet.com
visitation
Also called a WAKE or calling hours; a designated time when family, friends, and coworkers can pay their respects and offer condolences and support to the mourners. The visitation may be held in a parlor at the funeral home, or in the deceased’s or other close family member’s home. A generation ago, visitations were often held over two or three days, but today it is increasingly common for the visitation to be in the evening, with services and burial the following day. Visitation held in the funeral home, or moving the deceased to a private home for viewing or visitation, does add to the cost of the funeral—approximately $300–$500. The FUNERAL CONSUMERS ALLIANCE adds, “For those who wish to cut expenses even more, a viewing immediately prior to the funeral service can be scheduled—at the church or at the funeral home.” Usually the deceased is present in a casket during visitation, although that is not necessary. When the casket is open, it is referred to as a viewing. The viewing itself may be only during a few hours of the visitation. The viewing may be private, invitation only, with the visitation open to the public. Most states require that the body be embalmed during a public viewing; some allow non-embalmment and no casket during a private viewing. See also EMBALM. Funeral Consumers Alliance. “What Is the Difference between ‘Viewing’ and ‘Visitation’?” Available online. URL: http://www.funerals.org/faq/visit.htm. Downloaded February 4, 2004.
resolution of grief, in continuing the social identity of the deceased, as well as being a way for the living to maintain a relationship with the dead. Although, after bereavement, maintenance of the gravesite is most frequently given as the reason for continued visitation, Leimer writes, “a personal aspect of the visits was also evident in the visitors’ praying and talking to the deceased.” Philip Bachelor examined the visiting habits of more than 3,000 people at cemeteries around Australia while researching his doctoral thesis, “Cemetery Visitation: The Place of the Cemetery in the Grief Process.” Among his findings: • Only 23 percent of all visitors were at the cemeteries for funerals. • Greek Orthodox made up 13 percent of all visitors despite accounting for only 3 percent of the total population. • Half the people admitted talking freely to the deceased, even those who admitted to being atheists. • 45 percent of visitors to cemeteries are from nonEnglish-speaking backgrounds. • The average Anglo-Saxon will visit a cemetery just a handful of times. • The average age of all cemetery visitors is 56. Studies have shown that once past the bereavement stage, visits to graves are often commemorative on anniversaries of birthdays, weddings, deaths, holidays, and reunions. Frost, Sheena. “A New Slant on Sacred Sites.” newTimes, June 4, 2001. Available online. URL: http://www. csu.edu.au/division/marketing/tms/T111/T111p1.htm. Downloaded February 4, 2004. Leimer, ChrisTina. Tradition and Transformation: An Examination of Body Disposition and Death Ritual in the PostIndustrial U.S. Tombstone Travel. Available online. URL: http://www.tombstonetravel.com/cremate3.html. Downloaded February 4, 2004.
vital signs visits to graves
Visiting graves of relatives and close friends has been found to be important in the
Also called signs of life; critical physical functions that measure how well a person’s body is functioning. Vital signs include the measurement of:
268 vital signs temperature, respiratory rate, pulse, blood pressure, and, where appropriate, blood oxygen saturation. These numbers provide critical information (hence the name “vital”) about a patient’s state of health and indicate whether a person is alive. An individ-
ual may be pronounced dead if the vital signs are missing, although occasionally people revive after having lost all vital signs and having been officially pronounced dead.
W Wailing has been a part of death and mourning throughout history. In 13th-century Italy, for example, the public ritual of mourning involving wailing and the tearing out of hair became so great that restrictive legislation was passed against funerary practices in an attempt to curtail the crowds at funerals and restore social order. In Jamaica, also, wailing has a history. Burrell writes, “At one time, professional mourners—experts at weeping and wailing—would be hired for funeral services.”
wailing
A prolonged high-pitched cry of grief, witnessed especially in what Pittu Laungani and Bill Young call “small group societies” (like India, Nepal, China, Pakistan, Greece). Sunoo and Sunoo elaborate, “[Laungani and Young] observe that in these small group societies, death affects not only the immediate family but one’s community, of which one is an integral part. The disposal of the dead and the accompanying mourning then becomes a social, if not public affair. Crying, weeping, sobbing, wailing in public—in the presence of all the mourners who themselves make no attempts to conceal their own emotional expressions—is an accepted part of the social ritual in such cultures. In fact, the bereaved family is encouraged, even exhorted to display grief openly. Such expressions of public grief are often seen as being cathartic for the bereaved and hence therapeutic.” Matsunami describes several cultures where wailing plays an important part at funerals, among them:
Burrell, Bernard. “Nine Night: Death and Dying in Jamaica.” American Visions 11, no. 5 (October–November 1996). Laungani, Pittu, and Bill Young. “Implications for Practice and Policy,” in Death and Bereavement across Cultures. London: Routledge, 1996. Matsunami, Kodo. International Handbook of Funeral Customs. Westport, Conn.: Greenwood Press, 1998. Sunoo, Jan Jung-Min, and Brenda Paik Sunoo. “Managing Workplace Grief—Vision and Necessity.” Federal Mediation and Conciliation Service. Available online. URL: http://admin.fmcs.gov/assets/files/Articles/ Pepperdine/ManagingWorkplaceGrief.pdf. Downloaded February 4, 2004.
Tibetan Buddhists After death the corpse is placed in the living room, and all the family members leave the house, except the women who spend the mourning period wailing in the kitchen. Myanmar (Burma) Wailing women may be hired from the neighborhood for the wake, which takes place over two days. Cameroon In some areas, the wailing of female kin announces the death to the neighborhood. Egypt Wailing women are often hired for the procession to the grave. Ghana When the dead body is ready for the funeral, the wailing begins and men fire guns. Albania In the rural areas, wailing, scratching one’s face, cutting or tearing out one’s hair, and wearing clothes inside out, are recognized modes of mourning.
wake
A vigil held over the body prior to burial, which historically took place at the home of the family of the deceased. According to Moore, methods of confirming death hundreds of years ago were crude. “Stories of burying live persons were not uncommon. In an attempt to prevent premature burial, families would sit by the body for several hours or a few days, watching to see if the person awakened. This became known as the wake.” Another story is that people in the 1500s drank ale and whiskey from lead cups, with the combination
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270 war deaths sometimes knocking them out for a couple of days, often along the roadside where they were making their way home. Others finding them would assume they were dead and cart them home for burial. Because some of them did regain consciousness, families would lay the “corpse” on the kitchen table for a couple days, with other relatives gathering for a possible burial. The family would eat, drink, and wait to see if the person would wake up, which became known as the wake. Although the custom of a wake continues, especially in families close to their European roots, wakes have increasingly been replaced in America by viewing times at the funeral home. According to Nossaman, “the Irish believe that the soul of the dead person doesn’t depart from the body immediately. The wake is designed to provide for company for that soul as it makes the transition.” A traditional Irish wake included an at-home VISITATION, Irish music, and dancing as celebration for a life well-lived. The ability to hold a “proper” funeral with a traditional wake is one of the reasons Mexican Americans give for returning deceased family members to Mexico for burial, Lahiri writes: “Here, there might be a wake for one night or two. There, the whole family will keep a wake for nine days. They’ll sing. They’ll pray. They’ll eat tamales.” Lahiri, Tripti. “In Death, Homeward Bound.” The New York Times, June 26, 2003. Moore, Rob. “The American Funeral.” Clay County Genealogical Society. Available online. URL: http:// www.ccgsilib.org/american_funeral.html. Downloaded July 17, 2003. Nossaman, Nicholas. “Reflections on Death.” The New England Journal of Homeopathy 9, no. 2 (Fall/Winter 2000).
war deaths
Since 1775, U.S. military war deaths are approximately 1.2 million, from battle deaths and non-battlefield deaths. The Civil War claimed the lives of 2 percent of the nation’s population, with nearly twice as many dying from disease and other causes as died in battle. The U.S. Civil War Center includes the following in its Statistical Summary of America’s Major Wars:
Conflict
Total Deaths
Duration Months
Revolutionary War
Killed in Action per Month
10,623
80
55
War of 1812
6,765
30
75
Mexican War
17,435
20
87
Civil War: Union
634,703
48
2,293
Civil War: Confederate
335,524
48
1,553
Civil War: Combined Spanish-American War
970,227 4,108
48 4
3,846 96 (only 6 weeks of sustained combat)
World War I
320,710
19
2,816
World War II
1,078,162
44
6,639
Korean War
136,935
37
909
Vietnam War
211,471
90
526
760
1
148
Gulf War
In an effort to better track war deaths, the U.S. military issued each service member an aluminum “dog tag” to wear around his neck in 1906. During World War I, mindful of the realities of war deaths, the military began issuing two tags, one to be interred with the body, the second to be turned over to personnel to record the death. The estimated international war deaths for World War II are: 14,904,000 battle deaths, and 8,573,000 civilian deaths. In the 20th century, there were over four times as many war deaths worldwide as in the preceding 400 years. According to the World Health Organization (WHO), in 1990, worldwide, 502,000 deaths were due to war. A WHO “World Report on Violence,” projected that in 2020, war will be the world’s eighth-leading cause of death.
water-divining According to files declassified in 2003, police in Warwickshire, England, used waterdivining, or dowsing, to find bodies buried under water and rubble after bombs fell on Warwick in 1941. The officer reporting the events said he watched the diviner “fashion a forked stick with a knife, wrap a handkerchief around one of the forks and walk over the bomb craters.” When he approached the heaped soil where two bodies were
widowhood 271 soon unearthed, the stick wriggled violently. A Warwickshire police spokesperson said modern technology has replaced water-divining to locate buried bodies. “Divining Used to Find Bodies.” Coventry Evening Telegraph, January 26, 2004.
webcasting funerals
The broadcasting of funeral services online so that loved ones around the world can “attend.” Although some traditional funeral homes frown at the idea, it has proved popular for grieving relatives who cannot make it to the funeral, but still want to take part. In its first year of operation, Funeral-Cast.com, which pioneered the technology in 2000, webcast close to a thousand funerals. The process involves video taping of the services, which gives the family a lasting remembrance of the funeral. Several other companies around the world have also set up webcasting services; not all have succeeded. Bentley writes, “As society becomes more transient and the nation’s immigrant population grows, observers say Webcasts could become an important part of the grief process for faraway mourning.”
Bentley, Rosalind. “Can’t Make It to Grandma’s Funeral? Now You Can Watch It Online.” Minneapolis-St. Paul Star Tribune, December 27, 2002.
whole brain death
Disappearance of all brain functions, including of the brain stem. In Western countries, whole brain death meets the biological criteria for determining death, even if the rest of the body continues to function. Whole brain death allows organs to be harvested with minimal delay. See also BRAIN DEATH.
widowhood
Because 11 million of the 13 million widowed people in the United States are women, widowhood has been labeled a primarily female phenomenon. According to the 2000 U.S. Census, 8.5 million women over age 65 are widowed, compared with 2 million men in the same age group.
About 45 percent of women age 65 or older are widowed, and nearly 70 percent of these women live alone. The average age at which they become widows is 56. Nearly 75 percent of women who are married will experience widowhood when they are 85 and older. Nearly 700,000 women lose their husbands each year and will be widows for an average of 14 years. Also, Randolph writes, 1.3 million AfricanAmerican women—one out of every 10 over the age of 15—are widows. And more than half—54 percent—of African-American women age 65 and older are widows. Bradsher writes of the impact of widowhood: The death of a spouse or partner has been described as the most disruptive and difficult role transition that an individual confronts throughout the life course. It involves the loss of a master status, that of spouse, bringing with it a number of changes and losses in economic status, social status, and, often, personal self-identity. The widowhood event is not an uncommon life experience among persons who have lived to an old age, especially women.
According to the Economic Research Service of the U.S. Department of Agriculture, despite recent population aging in the United States, rates of widowhood have declined across all racial and ethnic groups relative to other marital statuses. The explanation for this apparent contradiction lies with growing life expectancy. Women have greater life expectancies than men, but because medical advances benefit those who have the most to gain— in this case, men—the advances increase the number of years that older Americans spend in marital unions. This effect reduces the number of years spent in widowhood. Bradsher, Julia A. “Older Women and Widowhood,” in Handbook on Women and Aging. Westport, Conn.: Greenwood Press, 1997. Latko, David W. Financial Strategies for Today’s Widow. New York: Simon & Schuster, 2003. Randolph, Laura B. “The New Wave of Widows.” Ebony, vol. 54, no. 7 May 1999: 158–162. Thornton, V. K. The Survivor’s Guide. Los Angeles: Silver Lake Publishing, 2004.
272 will will
A legal document designating the transfer of an individual’s property and assets after he or she dies. Usually, wills can be written by any person over the age of 18 who is mentally capable—commonly stated as “being of sound mind and memory.” Individual states may impose additional requirements. Although wills are simple to create, about half of all Americans die without one (or intestate). Without a will to indicate one’s wishes, the courts step in and distribute property according to the laws of that state. Even when a person has no apparent heirs and dies without a will, the state may step in and claim his or her estate. Having a will is especially important for parents of young children because it gives them the opportunity to designate a guardian for the children in the event of both parents’ deaths (or the sole parent’s death). Without a will, the court will appoint a guardian for the children. Yet according to a recent USA Today poll, 74 percent of Americans with minor children do not have a will. The main reasons cited for not having a will: lack of time (39.5 percent), never thought of it (29.6 percent), cost (26.2 percent), no assets to bequeath (26.2 percent), dislike of working with attorneys (15.9 percent), and dislike of facing death (15.0 percent). According to the American Association of Retired Persons (AARP), most wills typically cost from $100 to $500 to prepare. AARP offers a simple will for $75 (individual) or $100 (couple) through its AARP Legal Services Network. Information can be found at http:// www.aarp.org/lsn or by calling (800) 424–3410. Numerous online and print publishers offer inexpensive will-making software and books, some for as low as $5. Experts caution that such do-it-yourself one-size-fits-all wills are fraught with potential problems. When surviving family members have to hire lawyers and arrange court hearings to deal with a flawed will, it can be much more costly than having a lawyer prepare it in the first place. Tatum warns against using any do-it-yourself kit if: • The estate is valued at more than $100,000. • Either spouse is in a second marriage. • A parent plans to give one child more financial assets or personal property than another, or plans to disinherit a child.
When a patient is under HOSPICE care, the hospice organization can often help families get a will done. A will is probated in the state in which the deceased was living at time of death. If the will was drawn up in another state, it can still be probated in the state of death, but because laws can vary considerably from state to state, AARP says the best way to ensure that all intentions are fully met is to have a new will drawn up in the new state. Information about local probate laws is available from the clerk (or register) of wills. See also ESTATE PLANNING; PROBATE. Tatum, Christine. “When Is a Homemade Will Good Enough?” Chicago Tribune, September 14, 2003. U.S. General Services Administration. “Making a Will.” MetLife Consumer Education Center. Available online. URL: http://www.pueblo.gsa.gov/cic_text/money/ will/makewill.htm. Downloaded July 21, 2004.
will to live
Also called will to survive. We are all born with the will to survive. Exactly what influence this has on diseases—especially cancer—has been debated for a long time. But there is little argument that a strong desire to live can enhance the quality of life. According to the National Cancer Institute, many people with terminal cancer have lived far longer than expected. They often share a positive attitude about the value of life. They also seem to have a combination of hope, endurance, willpower, and courage. When asked to explain how they have managed, they often give answers such as, “I’m needed too much at work” or “I can’t die until my grandchild is born.” They do not want to give up or retreat from living. A keen interest in daily events helps to get them through uncomfortable treatments or disease-related problems. This does not mean that a positive attitude alone necessarily will lengthen one’s life. Nor does it mean that a patient is doing something wrong if he or she is sick and not getting better. But emphasizing the positive aspects of one’s life can add meaning, purpose, and comfort to his or her remaining time. Sometimes patients may temporarily lose their will to live, but their reactions often change with time.
withholding or withdrawal of treatment 273 The will to survive can also be affected in nonterminal illness. In her book, An Unquiet Mind, Kay Redfield Jamison, Ph.D., writes, “Manic-depression distorts moods and thoughts, incites dreadful behaviors, destroys the basis of rational thought, and too often erodes the desire and will to live.” In a study comparing a positive age stereotype intervention (using words such as wisdom or insightful for aging) and a negative age stereotype experimental condition (using words such as senility and dependence), it was found that positive age stereotypes improved the will to live, along with memory performance, walking speed, control of handwriting, and self-efficacy. According to the National Center for Medical Rehabilitation Research, National Institutes of Health, the will to live is among the psychosocial factors that seem to influence outcome. (Others include style of coping with stress, self-reliance, motivation, problem-solving, judgment, locus of control, cultural and ethnic group, gender, social skills, and belief system.) Jamison, Kay Redfield. An Unquiet Mind. New York: Alfred A. Knopf, 1995. National Cancer Institute. “Advanced Cancer.” Available online. URL: http://www.cancer.gov/cancerinfo/ advancedcancer/TOC# Downloaded February 14, 2004.
wish to hasten death (WTHD) Understanding why some terminally ill patients desire a hastened death has become an important issue in palliative care and the debate regarding legalization of assisted suicide. In their study, Breitbart et al. concluded that “Desire for hastened death among terminally ill cancer patients is not uncommon. Depression and hopelessness are the strongest predictors of desire for hastened death in this population and provide independent and unique contributions. Interventions addressing depression, hopelessness, and social support appear to be important aspects of adequate palliative care, particularly as it relates to desire for hastened death.” Also noting the “considerable debate regarding the clinical issues surrounding the wish to hasten death (WTHD) in the terminally ill,” Kelly et al. concluded that psychological and social factors are
related to a WTHD among terminally ill cancer patients. “Greater attention needs to be paid to the assessment of psychological and social issues in order to provide appropriate therapeutic interventions for terminally ill patients.” Breitbart, W., B. et al. “Depression, Hopelessness, and Desire for Hastened Death in Terminally Ill Patients with Cancer.” JAMA 284, no. 22 (December 13, 2000): 2907–2911. Kelly, B., et al. “Factors Associated with the Wish to Hasten Death: A Study of Patients with Terminal Illness.” Psychological Medicine 33, no. 1 (January 2003): 75–81.
withholding or withdrawal of treatment Treating a disease may lead to a longer life and comfort. But at times, treatment can mean pain, suffering, dependence on machines, isolation, immobility, and emotional or spiritual distress. When this happens, the patient him- or herself may request that treatment be discontinued; or the patient, family, and physician may agree that continued treatment will mean a lessening of quality of life. Physicians may also withhold or withdraw treatment if the burdens of that treatment outweigh the benefits, or when treatment simply prolongs dying with no apparent benefit. Three common examples of withholding or withdrawing treatment are: cessation of artificial nutrition/hydration, ventilator withdrawal, and non-resuscitation. Leichtentritt and Rettig describe both withholding and withdrawing of treatment: Withholding treatment A terminally ill cancer patient requested that her life not be prolonged by mechanical breathing machines because she wished for a natural death. The machines were not used, and the patient died a week later of lung failure. Withdrawing treatment A patient relied on an artificial kidney machine to stay alive. He was bedbound and in severe pain. The patient asked not to be kept alive. The machine was stopped and he died. The decision to withhold or withdraw treatment permits the disease to progress on its natural course.
274 working caregivers It is not intended to cause death. Braddock writes, “When a competent patient makes an informed decision to refuse life-sustaining treatment, there is virtual unanimity in state law and in the medical profession that this wish should be respected.” The American College of Physicians Ethics Manual states, “The same reasons that justify not starting treatment also justify stopping treatment. Indeed, the reasons for withdrawing a treatment may be more compelling, because it may have proved unsuccessful or because the patient’s prognosis and wishes may have been clarified. . . . Court rulings and most ethicists have found no legal or ethical difference between withdrawing and withholding treatment. Nonetheless, some health care workers or family members may have a visceral reluctance to withdraw treatments. Physicians need to be sensitive to such emotional reactions.” In one study, 226 (6.6 percent) of 3,498 patients had treatment withheld or withdrawn, and 221 of them died soon thereafter. The proposal to withhold or withdraw life support was initiated by physicians for 210 of those 226 patients and by the family in the remaining cases. The patient’s family was not involved in the decision to withhold or withdraw life support therapy in 64 of the 226 cases. In a Department of Veterans Affairs (VA) education and training program module, the abstract states, “The withholding and withdrawing of lifesustaining therapies is ethical and medically appropriate in some circumstances. Physicians need to develop facility with general aspects of the subject, as well as specific skills and approaches.”
dignity at home, the conflicting stresses of work and caring for a dying relative can take a terrible toll on the caregivers’ own health and careers. The precise number of American workers who are caring for terminally ill family members is not known. Based on workplace surveys, however, those with caregiver responsibilities at any given time have been estimated at 13 percent of the workforce, and those involved in caregiving at some point during the past 12 months at 25 percent. Regardless of the actual prevalence, experts expect the number of working caregivers to as much as double in coming years due to the aging of our population and the increased number of women in the workforce. In 2001, LAST ACTS, in When the Workplace and Caregiving Collide: The Challenge for Working Caregivers, provided the following overview of working caregivers:
Braddock III, Clarence H., and Mark R. Tonelli. “Physician-Assisted Suicide.” Ethics in Medicine, University of Washington School of Medicine. Available online. URL: http://eduserv.hscer.washington.edu/bioethics/ topics/pas.html. Modified October 2001. Leichtentritt, Ronit D., and Kathryn D. Rettig. “Values Underlying End-of-life Decisions: A Qualitative Approach.” Health and Social Work 26, no. 3 (August 2001): 150–159.
• Forty percent of caregivers surveyed reported that caregiving affected their ability to advance in their job because of their inability to accept: promotion, training or assignments; job relocation or transfer; or training for new job skills or changes in job skills.
working caregivers
With many terminally ill patients, especially aging parents, opting to die with
• Sixty-one percent of all caregivers are employed, most of them full-time (52%) according to a 1997 survey by the National Alliance for Caregiving (NAC) and the American Association of Retired Persons (AARP). • Sixty-five percent of all caregivers are between 35 and 64 years old—key years for wage-earning and accruing retirement benefits. • A follow-up survey to the NAC/AARP survey, usually referred to as “The Juggling Act Survey,” focused on the impact of caregiving on work. It found that 84 percent of respondents had to make at least one adjustment to their work schedules because of caregiving obligations.
• Nearly 66 percent of these respondents reported that caregiving had a direct impact on their earnings. For those who were able to quantify that loss, it resulted in an average lifetime loss in wages of $566,443, lost Social Security benefits of $25,494, and lost pension benefits of $67,202. The average total of lost wealth was $659,139.
workplace deaths 275 • In addition to lost income, caregivers were also limited in their ability to put money into savings, investments, and/or home improvements. Caregiving often required out-of-pocket expenses as well. On average, caregivers helped with expenses for two to six years, with out-of-pocket expenses averaging nearly $20,000. Almost three-quarters of working caregivers who are doing the more intense personal care say that it has had somewhat, or a lot, of negative impact on their health. In addition, 40 percent of working caregivers doing the more intense personal care tasks believe that their ability to work productively and to continue to work was affected by their caregiving-related health problems. See also FIVE WISHES AT WORK.
workplace deaths
Accidents at work and illnesses caused by working conditions kill 2 million people and cost the global economy an estimated $1.25 trillion per year, according to the International Labor Organization. The highest-risk jobs are in agriculture, mining, construction, fishing, and shipbreaking. Some 80 percent of work-related deaths are among men, a figure that rises to 86 percent in developed countries. Almost a third of deaths are from cancer— caused by asbestos, carcinogenic chemicals, radiation, and passive smoking—followed by circulatory diseases. Accidents account for 19 percent of all deaths. There are also big regional variations. In parts of the developing world, fatality rates are four times those of the safest industrialized countries. In the United States, a total of 5,524 fatal work injuries were recorded in 2002, a decline of 6.6 percent from 2001, according to the Census of Fatal Occupational Injuries, conducted by the Bureau of Labor Statistics, U.S. Department of Labor. The count for 2002 was the lowest ever recorded by the fatality census, which has been conducted yearly since 1992. The fatality rate also reached a new low of 4.0 fatal work injuries per 100,000 workers in 2002. In 2001, 5,915 fatal work injuries occurred, excluding the 2,886 work-related fatalities that resulted from the September 11 terrorist attacks, which were tabulated separately.
Profile of 2002 Fatal Work Injuries by Type of Incident Fatal highway incidents were down 3 percent from 2001, but continued to be the most frequent type of fatal workplace event in 2002, accounting for about a quarter of all fatal work injuries. Other types of fatal transportation events also declined, including aircraft incidents (down 22 percent) and workers struck by vehicles or mobile equipment (down 7 percent). Overall, fatal work injuries from transportation incidents declined for the fourth year in a row, from 2,645 in 1998 to 2,381 in 2002. Workplace homicides were down about 5 percent in 2002, from 643 in 2001 to 609 in 2002. The number of workplace homicides in 2002 was the lowest recorded in the fatality census and represented a 44 percent decline from the high of 1,080 workplace homicides recorded in 1994. Workplace suicides also were down in 2002. Fatalities resulting from falls declined for the first time since 1998, from 810 in 2001 to 714 in 2002, a drop of 12 percent. Virtually all types of fatal falls declined in 2002, though falls from ladders and falls from nonmoving vehicles increased slightly. The only major fatality event recording an increase was exposure to harmful substances or environments (up 8 percent). The increase in this event category was led by a sharp increase in the number of fatalities involving contact with temperature extremes (such as heat stroke), which increased from 35 fatalities in 2001 to 60 in 2002. Electrocutions also increased slightly in 2002. Profile of Fatal Work Injuries by Industry Construction recorded the highest number of fatal injuries of any major industry, although the total for construction was down 9 percent from the series high recorded in 2001. Fatal work injuries in mining also were lower, due to declines in coal mining and in oil and gas extraction. Fatal work injuries in manufacturing, transportation and public utilities, retail and wholesale trade, services, and government also declined from 2001 levels. Fatal work injuries in the agriculture, forestry, and fishing industry increased about 6 percent in 2002, due to increases in forestry and in agricultural crop production fatalities. Fatal work injuries in
276 workplace deaths commercial fishing—historically one of the more hazardous industries—were down sharply, from 60 in 2001 to 31 in 2002. Rates of fatal work injury in 2002 were highest in the mining, agriculture/forestry/fishing, construction, and transportation/public utilities industries. The mining industry recorded a rate of 23.5 fatal work injuries per 100,000 workers in 2002, the highest of any major industry, but down about 22 percent from the rate recorded in 2001. Fatal work injury rates for all other major industries also were down in 2002, except in finance, insurance, and real estate (unchanged) and in transportation and public utilities (up slightly). Profile of Fatal Work Injuries by Occupation Operators, fabricators, and laborers accounted for 1,895 fatal work injuries in 2002, the most of any major occupational group and about a third of the fatal work injuries reported in 2002. However, the number of fatalities for this occupational group declined for the third consecutive year and was down about 7 percent from 2001. Fatal work injuries among machine operators, assemblers, and inspectors were down sharply in 2002, and fatalities involving transportation and matériel moving occupations also were lower. Fatal work injuries among construction laborers also declined in 2002, from a series high of 350 in 2001 to 302 fatalities in 2002, a decline of 14 percent. However, fatalities among laborers, except construction, were higher by about 8 percent in 2002. Overall, fatalities in handler, equipment cleaner, helper, and laborer occupations were down about 10 percent. Truck drivers—who had more fatal injuries than any other individual occupation—recorded 808 fatal work injuries, a slight increase from the 802 fatalities recorded in 2001. Precision production, craft, and repair workers accounted for 1,104 fatal work injuries in 2002 or about one-fifth of the overall total. While fatal work injuries in this occupational group were down about 3 percent overall in 2002, fatalities in the construction trades sub-group were slightly higher. The 682 fatal work injuries in the construction trades in 2002 was the highest recorded by the fatality census
for that group. Roofers, electricians, brick masons, and painters were among the construction trades recording increases in 2002. Mechanics and repairers recorded a lower number of fatal work injuries in 2002, and fatalities involving extractive occupations were down 40 percent in 2002. Service occupations also recorded fewer fatal work injuries in 2002 than in 2001 (down 6 percent), as did managerial and professional specialty occupations (down 20 percent) and technical, sales, and administrative support occupations (down 7 percent). The number of fatal work injuries in farming, forestry, and fishing, however, increased from 804 in 2001 to 840 in 2002, a rise of about 4 percent. In that group, forestry and logging workers, groundskeepers, farm workers, and farming operators/managers were among the occupations recording increases. Rates of fatal injury were down for all major occupational categories in 2002. However, a few smaller occupational groups recorded higher rates in 2002, including construction trades, forestry and logging occupations, and water transportation occupations. Profile of Fatal Work Injuries by Demographic Characteristics Fatal work injuries were down in almost every demographic category—men and women, wage and salary and self-employed workers, and virtually all age groups. Fatal work injuries among workers 19 years of age and under went from 175 in 2001 to 133 in 2002, a decline of 24 percent. Fatal work injuries among white, non-Hispanic workers were down about 6 percent. Fatal work injuries among Hispanic workers, which had been rising each year since 1995, also were down by 6 percent in 2002. However, the 840 fatal work injuries recorded for Hispanic workers in 2002 accounted for the second highest annual total for that population. Among black workers, a total of 491 fatalities were recorded, the lowest annual count ever for that population. Fatalities occurring among several other groups of workers are generally not covered by any federal or state agencies. These groups include self-employed and unpaid family workers, which accounted for about 19 percent of the fatalities; laborers on small
wrongful death 277 farms, accounting for about 1 percent of the fatalities; and state and local government employees in states without OSHA-approved safety programs, which accounted for about 4 percent. Census of Fatal Occupational Injuries. Bureau of Labor Statistics, U.S. Department of Labor. Available online. URL: http://www.bls.gov/news.release/cfoi.toc.htm. Posted on September 17, 2003.
Institute Grief Index, and says employers dealing with grief among their workforce need to “Be patient, listen and ask how you can help. Make allowances for short-term absence and a possible longer period of depression. To help your department get through a period of loss and grieving without sacrificing productivity, experts suggest you: • Ease up temporarily on deadlines. • Bring in extra help if needed.
workplace grief
When an employee dies, coworkers, especially those who had worked closely with the deceased and perhaps even forged close personal bonds, may experience a number of feelings over the days and weeks following the death. Although the intensity of reactions will vary among individuals, the Stanford Help Center says the following experiences are common:
• Restructure responsibilities of the person in grief for a while. • Show appreciation for extra efforts others are making. • Encourage coworkers to support and listen to the person, with the best times being at lunch or after work. Talk does speed the healing process.” See also COPING WITH THE DEATH OF A COWORKER.
• numbness, shock, and disbelief • decreased concentration and memory • increased anxiety • sleep disturbances, fatigue • change in eating habits • sadness, tearfulness • headaches, muscle tension, stomach ache • irritability, frustration • depression, emptiness Jan Jung-Min Sunoo and Brenda Paik Sunoo caution, “If left unaddressed, grief can reportedly cost employers at least $300 billion a year, according to the American Institute of Stress. Employer costs can increase due to: • stress-related absenteeism • lowered productivity • increased compensation claims • health insurance costs • direct medical expense” Kay puts the hidden cost of grief in the workplace at “more than $75 billion,” citing the Grief Recovery
Kay, Andrea. “Hidden Cost of Grief in the Workplace Is More than $75 Billion.” The Honolulu Advertiser, December 15, 2003. Stanford Help Center, “When a Co-worker Dies,” Stanford University. Available online. URL: http://www.stanford.edu/dept/ocr/helpcenter/co-workerdeath.html. Downloaded February 15, 2004. Sunoo, Jan Jung-Min, and Brenda Paik Sunoo. “Managing Workplace Grief—Vision and Necessity.” Federal Mediation and Conciliation Service. Available online. URL: http://admin.fmcs.gov/assets/files/Articles/ Pepperdine/ManagingWorkplaceGrief.pdf Downloaded February 4, 2004.
wrongful death The death of a person from negligence or misconduct (also known as a wrongful act) by another individual, company, or entity. Such wrongful acts might include: carelessness, intentional attack such as assault and/or battery, a death in the course of another crime, vehicular manslaughter, manslaughter, or murder. Wrongful death is the basis for a lawsuit (wrongful death action) against the party or parties who caused the death and is filed on behalf of the members of the family who have lost the company and support of
278 wrongful death the deceased. Every state has a civil “wrongful death statute,” or set of statutes, which establishes the procedures for bringing wrongful death actions. In order to bring a successful wrongful death action, the following elements must be present:
• medical malpractice that results in decedent’s death
• death of a human being
• death during a supervised activity
• caused by another’s negligence • survival of family members who are suffering monetary injury as a result of the death • appointment of a personal representative for the decedent’s estate A wrongful death claim may arise out of a number of circumstances, such as in the following situations:
• automobile or airplane accident • occupational exposure to hazardous conditions or substances
FindLaw. “Wrongful Death—Overview.” FindLaw for the Public. Available online. URL: http://public.findlaw.com/ wrongful_death/overview.html. Downloaded February 15, 2004.
APPENDIXES I. Advance Care Plan Document II. What Are the Odds of Dying? III. Deaths/Mortality Statistics IV. End-of-Life Care at Home V. Where to Write for Death Certificates VI. United States War Deaths VII. Checklist for End-of-Life Planning VIII. Funeral Preplanning IX. 2003 Revisions of the U.S. Standard Certificate of Death and the Fetal Death Report X. Organizations and Help Groups XI. Death Care Industry & Consumer Organizations XII. Web Sites Offering Resources and Help XIII. Museums of Funeral Customs and History 279
APPENDIX I ADVANCE CARE PLAN DOCUMENT Reprinted with permission of Project GRACE 401 Corbett St., Suite 250, Clearwater FL 33756 (877) 994–7223 or (727) 443–2603; (727) 443–2540 (fax) http://www.projectgrace.org
281
APPENDIX II WHAT ARE THE ODDS OF DYING? For example, referring to the first line of the table below:
The table below has four columns. The first column gives the manner of injury, such as motor-vehicle crash, fall, fire, and other mishaps. The second column gives the total number of deaths nationwide due to the manner of injury in 2000 (the latest year for which data are available). The third column gives the odds of dying in one year due to the manner of injury. The fourth column gives the lifetime odds of dying from the manner of injury. Statements about the odds or chances of dying from a given cause of death may be made as follows:
• The odds of dying from an injury in 2000 were one in 1,820. • The lifetime odds of dying from an injury for a person born in 2000 were one in 24. The odds given below are statistical averages over the whole U.S. population and do not necessarily reflect the chances of death for a particular person from a particular external cause. Any individual’s odds of dying from various external causes are affected by the activities in which they participate, where they live and drive, what kind of work they do, and other factors.
• The odds of dying from (manner of injury) in 2000 were one in (value given in the one-year odds column). • The lifetime odds of dying from (manner of injury) for a person born in 2000 were one in (value given in the lifetime odds column).
ODDS OF DEATH DUE TO INJURY, UNITED STATES 2000 Type of Accident or Manner of Injury
Deaths
One-Year Odds
Lifetime Odds
All external causes of mortality, V01-Y98 Deaths due to unintentional (accidental) injuries, V01-X59, Y85-Y86 Transport accidents, V01-V99, Y85 Pedestrian, V01-V09 Pedalcyclist, V10-V19 Motorcycle rider, V20-V29 Occupant of three-wheeled motor vehicle, V30-V39 Car occupant, V40-V49 Occupant of pick-up truck or van, V50-V59 Occupant of heavy transport vehicle, V60-V69 Bus occupant, V70-V79 Animal rider or occupant of animal-drawn vehicle, V80 Occupant of railway train or railway vehicle, V81 Occupant of streetcar, V82
151,268 97,900 46,749 5,870 740 2,765 23 14,813 3,268 369 20 97 30 1
1,820 2,812 5,889 46,901 372,035 99,568 11,969,826 18,585 84,243 746,087 13,765,300 2,838,206 9,176,867 275,306,000
24 37 77 610 4,838 1,295 155,654 242 1,095 9,702 179,003 36,908 119,335 3,580,052
(continues)
287
288 The Encyclopedia of Death and Dying ODDS OF DEATH DUE TO INJURY, UNITED STATES 2000 (continued) Type of Accident or Manner of Injury Other and unspecified land transport accidents, V83-V89 Occupant of special industrial vehicle, V83 Occupant of special agricultural vehicle, V84 Occupant of special construction vehicle, V85 Occupant of all-terrain or other off-road motor vehicle, V86 Other and unspecified person, V87-V89 Water transport accidents, V90-V94 Drowning, V90, V92 Other and unspecified injuries, V91, V93-V94 Air and space transport accidents, V95-V97 Other and unspecified transport accidents and sequelae, V98-V99, Y85 Other specified transport accidents, V98 Unspecified transport accident, V99 Nontransport unintentional (accidental) injuries, W00-X59, Y86 Falls, W00-W19 Fall on same level from slipping, tripping, and stumbling, W01 Other fall on same level, W00, W02-W03, W18 Fall involving bed, chair, other furniture, W06-W08 Fall on and from stairs and steps, W10 Fall on and from ladder or scaffolding, W11-W12 Fall from out of or through building or structure, W13 Other fall from one level to another, W09, W14-W17 Other and unspecified fall, W04-W05, W19 Exposure to inanimate mechanical forces, W20-W49 Struck by or striking against object, W20-W22 Caught between objects, W23 Contact with machinery, W24, W30-W31 Contact with sharp objects, W25-W29 Firearms discharge, W32-W34 Explosion and rupture of pressurized devices, W35-W38 Fireworks discharge, W39 Explosion of other materials, W40 Foreign body entering through skin or natural orifice, W44-W45 Other and unspecified inanimate mechanical forces, W41-W43, W49 Exposure to animate mechanical forces, W50-W64 Struck by or against another person, W50-W52 Bitten or struck by dog, W54 Bitten or struck by other mammals, W53, W55 Bitten or stung by nonvenomous insect and other arthropods, W57 Bitten or crushed by other reptiles, W59 Other and unspecified animate mechanical forces, W56, W58, W60, W64 Accidental drowning and submersion, W65-W74 Drowning and submersion while in or falling into bath-tub, W65-W66 Drowning and submersion while in or falling into swimming-pool, W67-W68 Drowning and submersion while in or falling into natural water, W69-W70 Other and unspecified drowning and submersion, W73-W74 Other accidental threats to breathing, W75-W84 Accidental suffocation and strangulation in bed, W75 Other accidental hanging and strangulation, W76
Deaths
One-Year Odds
Lifetime Odds
16,850 15 273 37 717 15,808 630 466 164 777 496 2 4 51,151 13,322 565 1,885 650 1,307 412 506 687 7,310 2,768 877 84 676 80 776 30 5 167 36 37 204 61 26 65 9 31 12 3,482 341 567 1,135 1,439 5,648 327 333
16,339 18,353,733 1,008,447 7,440,703 383,969 17,416 436,994 590,785 1,678,695 354,319 555,052 137,653,000 68,826,500 5,382 20,666 487,267 146,051 423,548 210,640 668,218 544,083 400,737 37,662 99,460 313,918 3,277,452 407,257 3,441,325 354,776 9,176,867 55,061,200 1,648,539 7,647,389 7,440,703 1,349,539 4,513,213 10,588,692 4,235,477 30,589,556 8,880,839 22,942,167 79,065 807,349 485,549 242,560 191,318 48,744 841,914 826,745
212 238,670 13,114 96,758 4,993 226 5,683 7,683 21,830 4,608 7,218 1,790,026 895,013 70 269 6,336 1,899 5,508 2,739 8,689 7,075 5,211 490 1,293 4,082 42,620 5,296 44,751 4,613 119,335 716,010 21,437 99,446 96,758 17,549 58,689 137,694 55,078 397,784 115,486 298,338 1,028 10,499 6,314 3,154 2,488 634 10,948 10,751
Appendix II 289 ODDS OF DEATH DUE TO INJURY, UNITED STATES 2000 Type of Accident or Manner of Injury
Deaths
One-Year Odds
Lifetime Odds
Threat to breathing due to cave-in, falling earth, and other substances, W77 64 Inhalation of gastric contents, W78 382 Inhalation and ingestion of food causing obstruction of respiratory tract, W79 744 Inhalation and ingestion of other objects causing obstruction of respiratory tract, W80 3,187 Confined to or trapped in a low-oxygen environment, W81 15 Other and unspecified threats to breathing, W83-W84 596 Exposure to electric current, radiation, temperature, and pressure, W85-W99 419 Electric transmission lines, W85 99 Other and unspecified electric current, W86-W87 296 Radiation, W88-W91 0 Excessive heat or cold of man-made origin, W92-W93 12 High and low air pressure and changes in air pressure, W94 12 Other and unspecified man-made environmental factors, W99 0 Exposure to smoke, fire, and flames, X00-X09 3,377 Uncontrolled fire in building or structure, X00 2,776 Uncontrolled fire not in building or structure, X01 68 Controlled fire in building or structure, X02 50 Controlled fire not in building or structure, X03 29 Ignition of highly flammable material, X04 65 Ignition or melting of nightwear, X05 9 Ignition or melting of other clothing and apparel, X06 116 Other and unspecified smoke, fire, and flames, X08-X09 264 Contact with heat and hot substances, X10-X19 110 Contact with hot tap-water, X11 55 Other and unspecified heat and hot substances, X10, X12-X19 55 Contact with venomous animals and plants, X20-X29 80 Contact with venomous snakes and lizards, X20 12 Contact with venomous spiders, X21 5 Contact with hornets, wasps, and bees, X23 54 Contact with other and unspecified venomous animal or plant, X22, X24-X29 9 Exposure to forces of nature, X30-X39 1,223 Exposure to excessive natural heat, X30 301 Exposure to excessive natural cold, X31 742 Lightning, X33 50 Earthquake and other earth movements, X34-X36 35 Cataclysmic storm, X37 49 Flood, X38 5 Exposure to other and unspecified forces of nature, X32, X39 41 Accidental poisoning by and exposure to noxious substances, X40-X49 12,757 Nonopioid analgesics, antipyretics, and antirheumatics, X40 176 Antiepileptic, sedative-hypnotic, antiparkinsonism, and psychotropic drugs n.e.c., X41 704 Narcotics and psychodysleptics [hallucinogens] n.e.c., X42 6,139 Other and unspecified drugs, medicaments, and biologicals, X43-X44 4,693 Alcohol, X45 302 Gases and vapours, X46-X47 631 Other and unspecified chemicals and noxious substances, X48-X49 112
4,301,656 720,696 370,035
55,938 9,372 4,812
86,384 18,353,733 461,923 657,055 2,780,869 930,088 — 22,942,167 22,942,167 — 81,524 99,174 4,048,618 5,506,120 9,493,310 4,235,477 30,589,556 2,373,328 1,042,826 2,502,782 5,005,564 5,005,564 3,441,325 22,942,167 55,061,200 5,098,259
1,123 238,670 6,007 8,544 36,162 12,095 — 298,338 298,338 — 1,060 1,290 52,648 71,601 123,450 55,078 397,784 30,863 13,561 32,546 65,092 65,092 44,751 298,338 716,010 66,297
30,589,556 225,107 914,638 371,032 5,506,120 7,865,886 5,618,490 55,061,200 6,714,780 21,581 1,564,239
397,784 2,927 11,894 4,825 71,601 102,287 73,062 716,010 87,318 281 20,341
391,060 44,845 58,663 911,609 436,301 2,458,089
5,085 583 763 11,854 5,674 31,965 (continues)
290 The Encyclopedia of Death and Dying ODDS OF DEATH DUE TO INJURY, UNITED STATES 2000 (continued) Type of Accident or Manner of Injury Overexertion, travel, and privation, X50-X57 Accidental exposure to other and unspecified factors and sequelae, X58-X59, Y86 Intentional self-harm, X60-X84, Y87.0 Intentional self-poisoning, X60-X69 Intentional self-harm by hanging, strangulation, and suffocation, X70 Intentional self-harm by firearm, X72-X74 Other and unspecified means and sequelae, X71, X75-X84, Y87.0 Assault, X85-Y09, Y87.1 Assault by firearm, X93-X95 Assault by sharp object, X99 Other and unspecified means and sequelae, X85-X92, X96-X98, Y00-Y09, Y87.1 Event of undetermined intent, Y10-Y34, Y87.2, Y89.9 Poisoning, Y10-Y19 Hanging, strangulation, and suffocation, Y20 Drowning and submersion, Y21 Firearm discharge, Y22-Y24 Exposure to smoke, fire, and flames, Y26 Falling, jumping, or pushed from a high place, Y30 Other and unspecified means and sequelae, Y25, Y27-Y29, Y31-Y34, Y87.2, Y89.9 Legal intervention, Y35, Y89.0 Legal intervention involving firearm discharge, Y35.0 Legal execution, Y35.5 Other and unspecified means and sequelae, Y35.1-Y35.4, Y35.6-Y35.7, Y89.0 Operations of war and sequelae, Y36, Y89.1 Complications of medical and surgical care and sequelae, Y40-Y84, Y88.0-Y88.3
Deaths
One-Year Odds
Lifetime Odds
185
1,488,141
19,352
7,576 29,350 4,859 5,688 16,586 2,217 16,765 10,801 1,805
36,339 9,380 56,659 48,401 16,599 124,180 16,421 25,489 152,524
473 122 737 629 216 1,615 214 331 1,983
4,159 3,819 2,557 104 231 230 76 55
66,195 72,089 107,668 2,647,173 1,191,801 1,196,983 3,622,447 5,005,564
861 937 1,400 34,424 15,498 15,565 47,106 65,092
566 359 270 80 9 16 3,059
486,406
6,325 9,972 13,259 44,751 397,784 223,753 1,170
1,019,652 3,441,325 30,589,556 17,206,625 89,999
Reprinted with permission of the National Safety Council, 1121 Spring Lake Drive, Itasca, IL 60143–3201; (630) 285–1121; http://www.nsc.org Source: National Safety Council estimates based on data from National Center for Health Statistics and U.S. Census Bureau. Deaths are classified on the basis of the Tenth Revision of the World Health Organization’s “The International Classification of Diseases” (ICD). Numbers following titles refer to External Cause of Morbidity and Mortality classifications in ICD-10. One-year odds are approximated by dividing the 2000 population (275,306,000) by the number of deaths. Lifetime odds are approximated by dividing the one-year odds by the life expectancy of a person born in 2000 (76.9 years). National Safety Council codes have been left in place though they do not refer to information elsewhere in this appendix.
APPENDIX III DEATHS/MORTALITY STATISTICS All infant deaths: 27,568 (2001)—27,977 (preliminary 2002) White infant deaths: 17,955 (2001)—18,390 (preliminary 2002) Black infant deaths: 8,498 (2001)—8,446 (preliminary 2002)
UNITED STATES FINAL 2001 AND PRELIMINARY 2002
Number of deaths all races: 2,416,425 (2001)— 2,447,864 (preliminary 2002) Number of deaths white race: 2,079,691 (2001)—2,107,730 (preliminary 2002) Number of deaths black race: 287,709 (2001)—289,431 (preliminary 2002)
Infant mortality rate all races: 6.8 per 1,000 live births (2001)—7.0 (preliminary 2002) White infant mortality rate: 5.7 per 1,000 live births (2001)—5.8 (preliminary 2002) Black infant mortality rate: 14.0 per 1,000 live births (2001)—14.3 (preliminary 2002)
Death rate all races: 854.5 deaths per 100,000 population—846.8 (preliminary 2002) Death rate white race: 836.5 deaths per 100,000 population—831.0 (preliminary 2002) Death rate black race: 1,101.2 deaths per 100,000 population—1,081.2 (preliminary 2002)
Number of deaths for leading causes of death: Heart disease: 700,142 Cancer: 553,768 Stroke: 163,538 Chronic lower respiratory diseases: 123,013 Accidents (unintentional injuries): 101,537 Diabetes: 71,372 Influenza/Pneumonia: 62,034 Alzheimer’s disease: 53,852 Kidney diseases: 39,480 Septicemia (blood poisoning): 32,238
Life expectancy all races: 77.2 years—77.4 years (preliminary 2002) Life expectancy white race: 77.7 years—77.8 (preliminary 2002) Life expectancy black race: 72.2 years—72.5 (preliminary 2002) Life expectancy all races—Male: 74.4 years—74.7 (preliminary 2002) Life expectancy white male: 75.0 years—75.3 (preliminary 2002) Life expectancy black male: 68.6 years—68.9 (preliminary 2002)
LEADING CAUSES OF DEATH BY POPULATION GROUP—2001
Ten Leading Causes of Death in the United States in 2001 for American Indians and Alaskan Natives (ranking and number in 1980): All causes—11,977 (6,923)
Life expectancy all races—Female: 79.8 years—79.9 (preliminary 2002) Life expectancy white female: 80.2 years— 80.3 (preliminary 2002) Life expectancy black female: 75.5 years— 75.7 (preliminary 2002)
1. Heart disease—2,402 (1—1,494) 2. Cancer—2,155 (3—770)
291
292 The Encyclopedia of Death and Dying 3. 4. 5. 6. 7. 8. 9. 10.
Unintentional injuries—1,361 (2—1,290) Diabetes—644 (8—210) Stroke—574 (5—322) Chronic liver disease and cirrhosis—533 (4— 410) Chronic lung diseases—427 (not among top 10 in 1980)* Suicide—321 (10—181) Influenza and Pneumonia—318 (6—257) Kidney diseases—236 (not among top 10 in 1980)*
*(in 1980, Homicide ranked #7 [217] and Suicide ranked #10 [181])
Ten Leading Causes of Death in the United States in 2001 for Asian Americans and Pacific Islanders (ranking and number in 1980): All causes—37,048 (11,071) 1. 2. 3. 4. 5. 6. 7. 8. 9.
Cancer—9,792 (2—2,522) Heart disease—9,428 (1—3,265) Stroke—3,497 (3—1,026) Unintentional injuries—1,750 (4—810) Diabetes—1,243 (8—227) Chronic lung diseases—1,178 (10—207) Influenza and Pneumonia—1,171 (5—342) Suicide—634 (6—249) Kidney diseases—625 (not among top 10 in 1980)* 10. Homicide—543 (9—211) *(in 1980, Birth defects ranked #7 [246])
Ten Leading Causes of Death in the United States in 2001 for Blacks or African Americans (ranking and number in 1980): All causes—287,709 (233,135) 1. 2. 3. 4. 5. 6. 7. 8.
Heart disease—77,674 (1—72,956) Cancer—62,170 (2—45,037) Stroke—19,002 (3—20,135) Unintentional injuries—12,462 (4—13,480) Diabetes—12,305 (8—5,544) Homicide—8,226 (5—10,172) HIV/AIDS—7,844 (not among top 10 in 1980)* Chronic lung diseases—7,589 (not among top 10 in 1980)* 9. Kidney diseases—7,274 (10—3,416)
10. Septicemia—5,880 (not among top 10 in 1980)* *(in 1980, Birth defects ranked #6 [6,961], Pneumonia and Influenza ranked #7 [5,648], and Chronic liver disease and cirrhosis ranked #9 [4,790])
Ten Leading Causes of Death in the United States in 2001 for Hispanics or Latinos (not reported in 1980): All causes—113,413 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart disease—27,090 Cancer—22,371 Unintentional injuries—9,523 Stroke—6,416 Diabetes—5,663 Homicide—3,331 Chronic liver disease and cirrhosis—3,301 Chronic lung diseases—2,832 Pneumonia and Influenza—2,722 Birth defects—2,227
Ten Leading Causes of Death in the United States in 2001 for White non-Hispanic Americans (ranking and number in 1980): All causes—2,079,691 (1,738,607) 1. 2. 3. 4. 5. 6. 7. 8.
Heart disease—610,638 (1—683,347) Cancer—479,651 (2—368,162) Stroke—140,465 (3—148,734) Chronic lung diseases—113,819 (5—52,375) Unintentional injuries—85,964 (4—90,122) Diabetes—57,180 (7—28,868) Influenza and Pneumonia—54,774 (6—48,369) Alzheimer’s disease—50,348 (not among top 10 in 1980)* 9. Kidney diseases—31,345 (not among top 10 in 1980)* 10. Suicide—27,710 (10—24,829) *(in 1980, Atherosclerosis ranked #8 [27,069], and Chronic liver disease and cirrhosis ranked #9 [25,240])
Ten Leading Causes of Death for Men in the United States in 2001 (ranking and number in 1980): All causes—1,183,421 (1,075,078) 1. Heart disease—339,095 (1—405,661) 2. Cancer—287,075 (2—225,948)
Appendix III 293 3. 4. 5. 6. 7. 8. 9.
Unintentional injuries—66,060 (3—74,180) Stroke—63,177 (4—69,973) Chronic lung diseases—59,697 (5—38,625) Diabetes—32,841 (10—14,325) Influenza and pneumonia—27,342 (6—27,574) Suicide—24,672 (7—20,505) Kidney diseases—24,672 (not among top 10 in 1980)* 10. Chronic liver disease and cirrhosis—17,393 (8—19,768) *(in 1980, Homicide ranked #9 [18,779])
Ten Leading Causes of Death for Women in the United States in 2001 (ranking and number in 1980): All causes: 1,233,004 (914,763) 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart disease—361,047 (1—355,424) Cancer—266,693 (2—190,561) Stroke—100,361 (3—100,252) Chronic lung diseases—63,316 (8—17,425) Diabetes—38,531 (6—20,526) Alzheimer’s disease—38,090 (not among top 10 in 1980)* Unintentional injuries—35,477 (4—31,538) Pneumonia and influenza—34,692 (5—27,045) Kidney diseases—20,628 (not among top 10 in 1980)* Septicemia—17,931 (not among top 10 in 1980)*
*(in 1980, Atherosclerosis ranked #7 [17,848], Chronic liver disease and cirrhosis ranked #9 [10,815], and Birth defects ranked #10 [9,815]) Figures for Homicide and Suicide include September 11, 2001–related deaths for which death certificates were filed as of October 24, 2002. Sources: Source 1 Centers for Disease Control and Prevention, National Center for Health Statistics, National Vital Statistics System, Vital Statistics of the United States, vol. II, Mortality, part A, 1980 (Washington, D.C.: Public Health Service, 1985). Source 2 Anderson R.N., Smith B.L., Deaths: Leading Causes for 2001. National vital statistics reports, vol. 52, no. 9 (Hyattsville, Md.: National Center for Health Statistics. 2003). Source 3 Kochanek, K.D., Smith, B.L. Deaths: Preliminary Data for 2002. National vital statistics reports, vol. 52, no. 13 (Hyattsville, Md.: National Center for Health Statistics, 2004).
LEADING CAUSES OF DEATH— FEMALES—UNITED STATES, 2001
All Races, Females—Percent of total deaths due to the cause indicated 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart Disease—29.3 Cancer—21.6 Stroke—8.1 Chronic lower respiratory diseases—5.1 Diabetes—3.1 Alzheimer’s disease—3.1 Unintentional injuries—2.9 Influenza and pneumonia—2.8 Kidney diseases—1.7 Septicemia—1.5
White Females, All Ages—Percent of total deaths due to the cause indicated 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart Disease—29.5 Cancer—21.7 Stroke—8.1 Chronic lower respiratory diseases—5.5 Alzheimer’s disease—3.3 Influenza and pneumonia—2.9 Unintentional injuries—2.9 Diabetes—2.8 Kidney diseases—1.5 Septicemia—1.4
Black Females, All Ages—Percent of total deaths due to the cause indicated 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart Disease—28.7 Cancer—20.8 Stroke—7.8 Diabetes—5.1 Kidney diseases—2.9 Unintentional injuries—2.8 Chronic lower respiratory diseases—2.4 Septicemia—2.3 Influenza and pneumonia—2.1 HIV disease—1.8
American Indian Females, All Ages—Percent of total deaths due to the cause indicated 1. Cancer—19.1 2. Heart Disease—18.9
294 The Encyclopedia of Death and Dying 3. 4. 5. 6. 7. 8. 9. 10.
Unintentional injuries—8.2 Diabetes—6.7 Stroke—6.5 Chronic lower respiratory diseases—4.1 Chronic liver disease—4.1 Influenza and pneumonia—2.9 Kidney diseases—2.4 Septicemia—1.3
Asian or Pacific Islander Females, All Ages—Percent of total deaths due to the cause indicated 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Cancer—27.0 Heart Disease—24.8 Stroke—10.9 Diabetes—3.7 Unintentional injuries—3.6 Influenza and pneumonia—3.2 Chronic lower respiratory diseases—2.5 Kidney diseases—1.8 Hypertension—1.4 Alzheimer’s disease—1.1
Hispanic Females, All Ages—Percent of total deaths due to the cause indicated 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart Disease—25.7 Cancer—21.1 Stroke—6.9 Diabetes—6.1 Unintentional injuries—4.7 Influenza and pneumonia—2.8 Chronic lower respiratory diseases—2.7 Kidney diseases—1.9 Perinatal conditions—1.9 Chronic liver disease—1.8
Sources: Department of Health and Human Services, Centers for Disease Control and Prevention, Office of Women’s Health
LEADING CAUSES OF DEATH— MALES—UNITED STATES, 2001
All Races, Males—Percent of total deaths in the race category due to the disease indicated 1. 2. 3. 4.
Heart Disease—28.7 Cancer—24.3 Unintentional injuries—5.6 Stroke—5.3
5. 6. 7. 8. 9. 10.
Chronic lower respiratory diseases—5.0 Diabetes—2.8 Influenza and pneumonia—2.3 Suicide—2.1 Kidney diseases—1.6 Chronic liver disease—1.5
White Males, All Ages—Percent of total deaths in the race category due to the disease indicated 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart Disease—29.2 Cancer—24.5 Unintentional injuries—5.5 Chronic lower respiratory diseases—5.4 Stroke—5.3 Diabetes—2.7 Influenza and pneumonia—2.3 Suicide—2.2 Kidney diseases—1.5 Chronic liver disease—1.5
Black Males, All Ages—Percent of total deaths in the race category due to the disease indicated 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart Disease—25.4 Cancer—22.4 Unintentional injuries—5.9 Stroke—5.4 Homicide—4.6 HIV disease—3.7 Diabetes—3.5 Chronic lower respiratory diseases—2.9 Kidney diseases—2.2 Influenza and pneumonia—1.9
American Indian Males, All Ages—Percent of total deaths in the race category due to the disease indicated 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart Disease—21.0 Cancer—17.1 Unintentional injuries—14.0 Chronic liver disease—4.8 Diabetes—4.3 Suicide—4.0 Stroke—3.4 Chronic lower respiratory diseases—3.1 Influenza and pneumonia—2.5 Homicide—2.3
Appendix III 295 Asian or Pacific Islander Males, All Ages—Percent of total deaths in the race category due to the disease indicated 1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Heart Disease—26.0 Cancer—26.0 Stroke—8.2 Unintentional injuries—5.7 Chronic lower respiratory diseases—3.8 Influenza and pneumonia—3.2 Diabetes—3.0 Suicide—2.3 Homicide—1.9 Kidney diseases—1.6
Hispanic Males, All Ages—Percent of total deaths in the race category due to the disease indicated 1. Heart Disease—22.4 2. Cancer—18.7
3. 4. 5. 6. 7. 8. 9. 10.
Unintentional injuries—11.3 Stroke—4.7 Homicide—4.4 Diabetes—4.1 Chronic liver disease—3.8 Suicide—2.5 Chronic lower respiratory diseases—2.3 HIV disease—2.3
Sources: Department of Health and Human Services, Centers for Disease Control and Prevention, Office of Women’s Health
APPENDIX IV END-OF-LIFE CARE AT HOME • Be willing to reminisce about the person’s life.
Caregivers need to contact the patient’s doctor or nurse for help in any of the following situations:
• Avoid withholding difficult information. Most patients prefer to be included in discussions about issues that concern them.
• The patient is in pain that is not relieved by the prescribed dose of pain medication;
• Reassure the patient that you will honor advance directives, such as living wills.
• The patient shows discomfort, such as grimacing or moaning;
• Ask if there is anything you can do.
• The patient is having trouble breathing and seems upset;
• Respect the person’s need for privacy.
• The patient is unable to urinate or empty the bowels;
Certain signs and symptoms can help a caregiver anticipate when death is near. Not every patient experiences each of the signs and symptoms. In addition, the presence of one or more of these symptoms does not necessarily indicate that the patient is close to death. These signs (and how to manage them) include:
• The patient has fallen; • The patient is very depressed or talking about committing suicide; • The caregiver has difficulty giving medication to the patient;
• Drowsiness, increased sleep, and/or unresponsiveness (caused by changes in the patient’s metabolism). (The caregiver and family members can plan visits and activities for times when the patient is alert. It is important to speak directly to the patient and talk as if the person can hear, even if there is no response. Most patients are still able to hear after they are no longer able to speak. Patients should not be shaken if they do not respond.)
• The caregiver is overwhelmed by caring for the patient, or is too grieved or afraid to be with the patient; or • At any time the caregiver does not know how to handle a situation. Some emotions are common to most dying patients. These include fear of abandonment and fear of being a burden. They also have concerns about loss of dignity and loss of control. Some ways in which caregivers can provide comfort are:
• Confusion about time, place, and/or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in the patient’s metabolism). (Gently remind the patient of the time, date, and people who are with them. If the patient is agitated, do not attempt to restrain the patient. Be calm and reassuring. Speaking calmly may help to reorient the patient.)
• Keep the person company—talk, watch movies, read, or just be with the person. • Allow the person to express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.
297
298 The Encyclopedia of Death and Dying • Decreased socialization and withdrawal (caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying). (Speak to the patient directly. Let the patient know you are there for them. The patient may be aware and able to hear, but unable to respond. Professionals advise that giving the patient permission to “let go” can be helpful.)
head and behind the back. Although labored breathing can sound very distressing to the caregiver, gurgling and rattling sounds do not cause discomfort to the patient. An external source of oxygen may benefit some patients. If the patient is able to swallow, ice chips also may help. In addition, a cool mist humidifier may help make the patient’s breathing more comfortable.)
• Decreased need for food and fluids, and loss of appetite (caused by the body’s need to conserve energy and its decreasing ability to use food and fluids properly). (Allow the patient to choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if the patient can swallow. Keep the patient’s mouth and lips moist with products such as glycerin swabs and lip balm.)
• Turning the head toward a light source (caused by decreasing vision). (Leave soft, indirect lights on in the room.)
• Loss of bladder or bowel control (caused by the relaxing of muscles in the pelvic area). (Keep the patient as clean, dry, and comfortable as possible. Place disposable pads on the bed beneath the patient and remove them when they become soiled.) • Darkened urine or decreased amount of urine (caused by slowing of kidney function and/or decreased fluid intake). (Caregivers can consult a member of the patient’s health care team about the need to insert a catheter to avoid blockage. A member of the health care team can teach the caregiver how to take care of the catheter if one is needed.) • Skin becomes cool to the touch, particularly the hands and feet; skin may become bluish in color, especially on the underside of the body (caused by decreased circulation to the extremities). (Blankets can be used to warm the patient. Although the skin may be cool, patients are usually not aware of feeling cold. Caregivers should avoid warming the patient with electric blankets or heating pads, which can cause burns.) • Rattling or gurgling sounds while breathing, which may be loud; breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow (caused by congestion from decreased fluid consumption, a buildup of waste products in the body, and/or a decrease in circulation to the organs). (Breathing may be easier if the patient’s body is turned to the side and pillows are placed beneath the
• Increased difficulty controlling pain (caused by progression of the disease). (It is important to provide pain medications as the patient’s doctor has prescribed. The caregiver should contact the doctor if the prescribed dose does not seem adequate. With the help of the health care team, caregivers can also explore methods such as massage and relaxation techniques to help with pain.) • Involuntary movements (called myoclonus), changes in heart rate, and loss of reflexes in the legs and arms are additional signs that the end of life is near. Signs that the patient has died: • There is no breathing or pulse. • The eyes do not move or blink, and the pupils are dilated (enlarged). The eyelids may be slightly open. • The jaw is relaxed and the mouth is slightly open. • The body releases the bowel and bladder contents. • The patient does not respond to being touched or spoken to. After the patient has passed away, there is no need to hurry with arrangements. Family members and caregivers may wish to sit with the patient, talk, or pray. When the family is ready, the following steps can be taken: • Place the body on its back with one pillow under the head. If necessary, caregivers or family members may wish to put the patient’s dentures or other artificial parts in place.
Appendix IV 299 • If the patient is in a hospice program, follow the guidelines provided by the program. A caregiver or family member can request a hospice nurse to verify the patient’s death. • Contact the appropriate authorities in accordance with local regulations. If the patient has requested not to be resuscitated through a Do-Not-Resuscitate (DNR) order or other mechanism, do not call 911.
• Contact the patient’s doctor and funeral home. • When the patient’s family is ready, call other family members, friends, and clergy. • Provide or obtain emotional support for family members and friends to cope with their loss. Source: National Cancer Institute
APPENDIX V WHERE TO WRITE FOR DEATH CERTIFICATES Give the following facts when writing for death records:
An official certificate of every death should be on file in the locality where the death occurred. The federal government does not maintain files or indexes of these records. These records are filed permanently either in a state vital statistics office or in a city, county, or other local office. To obtain a certified copy of a death certificate, write or go to the vital statistics office in the state or area where the death occurred. Because all fees are subject to change, it is always a good idea to verify the current fee, as well as to verify whether personal checks are accepted, and to whom to make out a check or money order. Many offices also require picture ID and/or notarized signatures of the applicants. The information below was verified by the National Center for Health Statistics as of February 10, 2004.
1. Full name of person whose record is being requested. 2. Sex. 3. Parents’ names, including maiden name of mother. 4. Month, day, and year of death. 5. Place of death (city or town, county, and state). 6. Purpose for which copy is needed. 7. Relationship to person whose record is being requested.
Place of Death
Cost of Copy
Contact Information
Remarks
Alabama
$12.00
Alabama Vital Records State Department of Public Health P.O. Box 5625 Montgomery, AL 36103-5625 (334) 206-5418 http://www.adph.org
State office has records since January 1908. Additional copies ordered at the same time are $4.00 each. Fee for special searches is $10.00 per hour.
Alaska
$15.00
Bureau of Vital Statistics Department of Health and Social Services 5441 Commercial Boulevard Juneau, AK 99801 (907) 465-3391 http://www.hss.state.ak.us
State office has records since January 1913
American Samoa
$7.00
Registrar of Vital Statistics Vital Statistics Section Government of American Samoa Pago Pago, AS 96799 (684) 633-1222, ext. 214
Registrar has records since 1900
(continues)
301
302 The Encyclopedia of Death and Dying Place of Death
Cost of Copy
Contact Information
Remarks
Arizona
$10.00
Office of Vital Records Arizona Department of Health Services P.O. Box 3887 Phoenix, AZ 85030-3887 (602) 364-1300 http://www.hs.state.az.us
State office has records since July 1909 and abstracts of records filed in counties before then
Arkansas
$10.00
Division of Vital Records Arkansas Department of Health 4815 West Markham Street Slot #44 Little Rock, AR 72205-3867 (501) 661-2174 http://www.healthyarkansas.com
State office has records since February 1914 and some original Little Rock and Fort Smith records from 1881
California
$13.00
Office of Vital Records Department of Health Services MS: 5103 P.O. Box 997410 Sacramento, CA 95899-7410 (916) 445-2684 http://www.dhs.ca.gov/hisp/chs/ovr
State office has records since July 1905. For earlier records, write to County Recorder in county where death occurred
Canal Zone
$30.00
Vital Records Section Passport Services U.S. Department of State 1111 19th Street NW Suite 510 Washington, DC 20522-1705 (202) 955-0307
Records available from May 1904 to September 1979
Colorado
$15.00
Vital Records Section CO Department of Public Health and Environment 4300 Cherry Creek Drive South HSVRD-VS-A1 Denver, CO 80246-1530 (303) 692-2200 http://www.cdphe.state.co.us/hs/certs.asp
State office has death records since 1900
Connecticut
$5.00
See Remarks (800) 509-7897
Certified copies are not available from State office. Request must be submitted to town or city where death occurred
Delaware
$10.00
Office of Vital Statistics Division of Public Health P.O. Box 637 Dover, DE 19903 (302) 744-4549
State office has death records since 1963. For previous years, contact Archives Hall of Records, Dover, DE; (302) 744-5000
District of Columbia
$18.00
Vital Records Division 825 North Capitol Street NE lst Floor Washington, DC 20002 (202) 442-9009 http://www.dchealth.dc.gov
Office has birth and death records since August 1874
Appendix V 303 Place of Death
Cost of Copy
Contact Information
Remarks
Florida
$5.00
Office of Vital Statistics P.O. Box 210 1217 Pearl Street Jacksonville, FL 32231 (904) 359-6900 http://www.doh.state.fl.us
State office has some death records dating back to August 1877. The majority of records date from January 1917.
Georgia
$10.00
Vital Records 2600 Skyland Drive NE Atlanta, GA 30319-3640 (404) 679-4701 http://www.state.ga.us/programs
State office has records since January 1919. For earlier records in Atlanta or Savannah or other cities or counties, write to the Vital Records Office in county where death occurred.
Guam
$5.00
Office of Vital Statistics Department of Public Health and Social Services Government of Guam P.O. Box 2816 Agana, GU, M.I. 96910 (671) 734-4589
Office has records since October 16, 1901
Hawaii
$10.00
State Department of Health Office of Health Status Monitoring Issuance/Vital Statistics Section P.O. Box 3378 Honolulu, HI 96801 (808) 586-4533 http://www.hawaii.gov/doh/records/ vr_howto.html
State office has records since 1853
Idaho
$13.00
Vital Statistics 450 West State Street 1st Floor P.O. Box 83720 Boise, ID 83720-0036 (208) 334-5988 http://www.state.id.us/dhw
State office has records since July 1911. For records from 1907 to 1911, write to County Recorder in county where event occurred.
Illinois
$17.00 certified copy $10.00 certification
Division of Vital Records Illinois Department of Public Health 605 West Jefferson Street Springfield, IL 62702-5097 (217) 782-6553 http://www.idph.state.il.us
State office has records since January 1916. For earlier records, write to County Clerk in county where death occurred (county fees vary).
Indiana
$8.00
Vital Records Department State Department of Health 2 North Meridian Street Indianapolis, IN 46204 (317) 233-2700 http://www.in.gov/isdh/index.htm
State office has death records since October 1907
(continues)
304 The Encyclopedia of Death and Dying Place of Death
Cost of Copy
Contact Information
Remarks
Iowa
$10.00
Iowa Department of Public Health Bureau of Vital Records Lucas Office Building 1st Floor 321 East 12th Street Des Moines, IA 50319-0075 (515) 281-4944 http://www.idph.state.ia.us/
State office has records since July 1880
Kansas
$13.00
Office of Vital Statistics Curtis State Office Building 1000 Southwest Jackson Street Suite 120 Topeka, Kansas 66612-2221 (785) 296-1400 http://www.kdhe.state.ks.us/vital
State office has records since July 1911. For earlier records, write to County Clerk in county where death occurred.
Kentucky
$6.00
Office of Vital Statistics Department for Health Services 275 East Main Street Frankfort, KY 40621-0001 (502) 564-4212 http://chs.ky.gov/publichealth/vital.htm
State office has records since January 1911
Louisiana
$7.00
Vital Records Registry Office of Public Health 325 Loyola Avenue New Orleans, LA 70112 (504) 568-5152 http://www.dhh.state.la.us
State office has records since July 1914. Records for City of New Orleans are available since 1942. Older death records are available through: Louisiana State Archives, P.O. Box 94125, Baton Rouge, LA 70804
Maine
Certified $10 Office of Vital Records Uncertified $6 Maine Department of Human Services 221 State Street 11 State House Station Augusta, ME 04333-0011 (207) 287-3181 http://www.state.me.us
State office has records since 1923. Records for 1892–1922 are available at the Maine State Archives: (207) 2875795. For earlier records, write to the municipality where the death occurred.
Maryland
$12.00
Division of Vital Records Department of Health and Mental Hygiene 6550 Reisterstown Road P.O. Box 68760 Baltimore, MD 21215-0020 (410) 764-3038 http://mdpublichealth.org/vsa
State office has records since August 1898. Records for City of Baltimore are available from January 1875
Massachusetts
$18.00 (In person) $28.00 (Mail request) $3.00 (State Archives)
Registry of Vital Records and Statistics 150 Mount Vernon Street, 1st Floor Dorchester, MA 02125-3105 (617) 740-2600 http://www.state.ma.us/dph/bhsre/rvr/ vrcopies.htm
State office has records since 1911. For earlier records, write to: The Massachusetts Archives at Columbia Point, 220 Morrissey Boulevard, Boston, MA 02125; (617) 727-2816
Appendix V 305 Place of Death
Cost of Copy
Contact Information
Remarks
Michigan
$15.00
Vital Records Request P.O. Box 30721 Lansing, MI 48909 (517) 335-8656 http:// www.michigan.gov/mdch
State office has records of deaths that occurred and were filed with the state since 1867. Some of the records (especially 1897 deaths) were not filed with the state.
Minnesota
$10.00
MN Department of Health Attention: Office of the State Registrar 717 Delaware Street SE P.O. Box 9441 Minneapolis, MN 55440-9441 (612) 676-5120 http://www.health.state.mn.us
State office has death records since January 1908. Copies of earlier records may be obtained from Local Registrar in county where death occurred.
Mississippi
$10.00
Mississippi Vital Records State Department of Health P.O. Box 1700 Jackson, MS 39215-1700 (601) 576-7981 http://www.msdh.state.ms.us
State office has records since November 1, 1912
Missouri
$10.00
Missouri Department of Health and Senior Services Bureau of Vital Records 930 Wildwood P.O. Box 570 Jefferson City, MO 65102-0570 (573) 751-6400 http://www.health.state.mo.us/ birthanddeathrecords
State office has records since January 1910. If death occurred in St. Louis (City), St. Louis County, or Kansas City before 1910, write to the City or County Health Department.
Montana
$12.00
Office of Vital Statistics MT Dept of Public Health and Human Services 111 North Sanders, Rm. 209 P.O. Box 4210 Helena, MT 59604 (406) 444-2685 http://www.dphhs.state.mt.us
State office has records since late 1907
Nebraska
$7.00
Vital Records Department of Health and Human Services 301 Centennial Mall South P.O. Box 95065 Lincoln, NE 68509-5065 (402) 471-2871 http://www.hhs.state.ne.us/ced/nevrinfo.htm
State office has records since late 1904
Nevada
$10.00
Office of Vital Records and Statistics Capitol Complex 505 East King Street, Room 0102 Carson City, NV 89710-4749 (775) 684-4280 http://health2k.state.nv.us
State office has records since July 1911. For earlier records, write to County Recorder in county where death occurred.
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306 The Encyclopedia of Death and Dying Place of Death
Cost of Copy
Contact Information
Remarks
New Hampshire
$12.00
Bureau of Vital Records 29 Hazen Drive Concord, NH 03301-6508 (603) 271-4654 http://www.dhhs.state.nh.us
State office has records since 1883. Copies of records may be obtained from state office or from City or Town Clerk in place where death occurred.
New Jersey
$4.00
NJ Vital Statistics Customer Service Unit P.O. Box 370 Trenton, NJ 08625-0370 (609) 292-4087 http://www.state.nj.us/health/vital/vital.htm
State office has records since June 1, 1878
New Mexico
$5.00
NM Vital Records P.O. Box 26110 Santa Fe, NM 87502 (505) 827-2338 http://www.health.state.nm.us
State office has records since 1920 and delayed records since 1880
New York (except New York City
$30.00
Certification Unit Vital Records Section 2nd Floor 800 North Pearl Street Menands, NY 12204 (518) 474-3075 http://www.health.state.ny.us
State office has records since 1880. For records before 1914 in Albany, Buffalo, and Yonkers, or before 1880 in any other city, write to Registrar of Vital Statistics in city where death occurred.
New York City
$15.00
Office of Vital Records NYC Department of Health and Mental Hygiene 125 Worth St., CN4, Rm. 133 New York, NY 10013 (212) 788-4520 http://www.nyc.gov/health
Office has death records since 1949 for those occurring in the boroughs of Manhattan, Brooklyn, Bronx, Queens, and Staten Island. For death records prior to 1949, write to: Municipal Archives, Department of Records and Information Services, 31 Chambers Street, New York, NY 10007
North Carolina
$15.00
NC Vital Records 1903 Mail Service Center Raleigh, NC 27699-1903 (919) 733-3526 http://www.schs.state.nc.us/SCHS
State office has death records since January 1, 1946. Death records from 1913 through 1945 are available from: NC State Archives, 109 East Jones Street, Raleigh, NC 27601-2807
North Dakota
$5.00
Division of Vital Records 600 East Boulevard Avenue Dept. 301 Bismarck, ND 58505-0200 (701) 328-2360 at http:// www.vitalnd.com
State office has some records since July 1893. Years from 1894 to 1920 are incomplete
Commonwealth Recorder Superior Court P.O. Box 500307 Saipan, MP 96950
Office has records for deaths since 1946. Years from 1946 to 1950 are incomplete
Northern Mariana Islands $10.00
Appendix V 307 Place of Death
Cost of Copy
Contact Information
Remarks
Ohio
$15.00
Vital Statistics Ohio Department of Health 246 North High Street 1st Floor Columbus, OH 43216 (614) 466-2531 http://www.vitalrec.com/oh.html
The State Office has death records that occurred after December 31, 1945. Death records that occurred December 20, 1908–December 31, 1944, can be obtained from: Ohio Historical Society, Archives Library Division, 1982 Velma Avenue, Columbus, OH 43211-2497. A searchable index to records from 1913 to 1937 is also available via the Internet at http://www.ohiohistory.org.
Oklahoma
$10.00
Vital Records Service State Department of Health 1000 Northeast 10th Street Oklahoma City, OK 73117 (405) 271-4040 http://www.health.state.ok.us/program/ vital/ brec/html
State office has records since October 1908
Oregon
$20.00
Oregon Vital Records P.O. Box 14050 Portland, OR 97293-0050 (503) 731-4095 http://www.healthoregon.org/chs
State office has records since July 1903. Some earlier records for the City of Portland since approximately 1880 are available from: Oregon State Archives, 1005 Broadway NE, Salem, OR 97310
Pennsylvania
$9.00
Division of Vital Records 101 South Mercer Street Room 401 P.O. Box 1528 New Castle, PA 16101 (724) 656-3100 http://www.dsf.health.state.pa.us
State office has records since January 1906. For earlier records, write to Register of Wills, Orphans Court, in county seat of county where death occurred. For deaths occurring in City of Philadelphia from 1860 to 1915, write to: Philadelphia City Archives, 3101 Market Street, Philadelphia, PA, 19104; (215) 685-9401
Puerto Rico
$5.00
Department of Health Demographic Registry P.O. Box 11854 Fernández Juncos Station San Juan, PR 00910 (787) 767-9120
Central office has records since June 21, 1931. Copies of earlier records may be obtained by writing to local Registrar (Registrador Demografico) in municipality where death occurred
Rhode Island
$15.00
Office of Vital Records Rhode Island Department of Health 3 Capitol Hill, Room 101 Providence, RI 02908-5097 (401) 222-2811 http://www.health.ri.gov/topics/vital.htm
State office keeps death records for 50 years. For earlier records, write to the city/town clerk where the event occurred or to: Rhode Island State Archives, 337 Westminster Street, Providence, RI 02903 (continues)
308 The Encyclopedia of Death and Dying Place of Death
Cost of Copy
Contact Information
Remarks
South Carolina
$12.00
Office of Vital Records SC DHEC 2600 Bull Street Columbia, SC 29201 (803) 898-3630 http://www.state.sc.us/scdah/vit.htm
State office has records since January 1915. City of Charleston deaths from 1821 are on file at Charleston County Health Department. Ledger entries of Florence City deaths from 1895 to 1914 are on file at Florence County Health Department. Ledger entries of Newberry City deaths from the late 1800s are on file at Newberry County Health Department. These are the only early records obtainable.
South Dakota
$10.00
Vital Records State Department of Health 600 East Capitol Avenue Pierre, SD 57501-2536 (605) 773-4961 http://www.state.sd.us/doh/vitalrec/vital.htm
State office has records filed after July 1905
Tennessee
$7.00
Tennessee Vital Records Central Services Building 421 5th Avenue North Nashville, TN 37247 (615) 741-1763 http://www2.state.tn.us/health/vr/index.htm
Vital Records office keeps death records for 50 years; older records are maintained by Tennessee Library and Archives, Archives Division, Nashville, Tennessee 37243-0312
Texas
$9.00
Bureau of Vital Statistics Texas Department of Health P.O. Box 12040 Austin, TX 78711-2040 (512) 458-7111 http://www.tdh.state.tx.us/bvs
State office has death records since 1903.
Utah
$13.00
Office of Vital Records and Statistics Utah Department of Health 288 North 1460 West P.O. Box 141012 Salt Lake City, UT 84114-1012 (801) 538-6105 http://www.health.utah.gov/vitalrecords
State office has records since 1905. If death occurred from 1890 to 1904 in Salt Lake City or Ogden, write to City Board of Health. For records elsewhere in the State from 1898 to 1904, write to County Clerk in county where death occurred.
Vermont
$7.00
VT Department of Health Vital Records Section P.O. Box 70 108 Cherry Street Burlington, VT 05402-0070 (802) 863-7275 http://www.state.vt.us/health/_hs/vitals/ records/obtain.htm
State office has records for the latest 10 years. For records prior to the latest 10 years: General Services Center, Reference and Research, U.S. Route 2, Middlesex Drawer 33, Montpelier, VT 05633-7601. Or Town or City Clerk of town/city where death occurred
Virginia
$10.00
Office of Vital Records P.O. Box 1000 Richmond, VA 23218-1000
State office has records from January 1853 to December 1896 and since June 14, 1912. Only the cities of Hampton, Newport News, and Norfolk have records between 1896 and June 14, 1912.
Appendix V 309 Place of Death
Cost of Copy
Contact Information
Virgin Islands St. Croix
$15 (mail) Department of Health $12 (in person) Vital Statistics Charles Harwood Memorial Hospital St. Croix, VI 00820
Registrar has birth and death records on file since 1840
Virgin Islands St. Thomas and St. John
$15 (mail) Department of Health $12 (in person) Vital Statistics Knud Hansen Complex St. Thomas, VI 00802 (340) 774-9000, ext. 4685 or 4686
Registrar has death records since January 1906
Washington
$17.00
Department of Health Center for Health Statistics P.O. Box 9709 Olympia, WA 98507-9709 (360) 236-4300 http://www.doh.wa.gov
State office has records since July 1907. For King, Pierce, and Spokane counties, copies may also be obtained from county health departments
West Virginia
$5.00
Vital Registration Office Room 165 350 Capitol Street Court Charleston, WV 25301-3701 (304) 558-2931 http://www.wvdhhr.org
State office has records since January 1917. For earlier records, write to Clerk of County in county where event occurred
Wisconsin
$7.00
WI Vital Records Office 1 West Wilson Street P.O. Box 309 Madison, WI 53701-0309 (608) 266-1371 http://www.dhfs.state.wi.us/vitalrecords
State office has scattered records earlier than 1857. Records before October 1, 1907, are very incomplete
Wyoming
$9.00
Vital Records Services Hathaway Building Cheyenne, WY 82002 (307) 777-7591 http://wdhfs.state.wy.us
State office has records since July 1909
DEATH RECORDS OF U.S. CITIZENS WHO DIE IN FOREIGN COUNTRIES
The death of a U.S. citizen in a foreign country may be reported to the nearest U.S. consular office. If reported, and a copy of the local death certificate and evidence of U.S. citizenship are presented, the consul prepares the official Report of the Death of an American Citizen Abroad (Form OF-180). A copy of the Report of Death is then filed permanently in the U.S. Department of State (with a few exceptions). To obtain a copy of a report filed in 1975 or after, write to:
Remarks
Passport Services Vital Records Section U.S. Department of State Washington, DC 20522-1705 The fee for a copy is $30.00 for the first copy, $20.00 for each additional copy. Include a notarized request to include picture ID. Fee may be subject to change. Reports of Death filed before 1975 are maintained by the National Archives and Records Service, Diplomatic Records Branch, Washington, DC 20408.
310 The Encyclopedia of Death and Dying Requests for such records should be sent directly to that office. Reports of deaths of persons serving in the Armed Forces of the United States (Army, Navy, Marines, Air Force, or Coast Guard) or civilian employees of the Department of Defense are not maintained by the U.S. Department of State. In these cases, requests for copies of records should be sent to:
National Personnel Records Center (Military Personnel Records) 9700 Page Ave. St. Louis, Missouri 63132-5100
APPENDIX VI UNITED STATES WAR DEATHS American Revolution (1775–1783) Total U.S. Servicemembers Battle Deaths
World War II (1941–1945) 217,000 4,435
Total U.S. Servicemembers (Worldwide) Battle Deaths Other Deaths in Service (Non-Theater)
16,112,566 291,557 113,842
War of 1812 (1812–1815) Total U.S. Servicemembers Battle Deaths
Korean War (1950–1953)
286,730 2,260
Total U.S. Servicemembers (Worldwide) Battle Deaths Other Deaths (in Theater) Other Deaths in Service (Non-Theater)
Indian Wars (approx. 1817–1898) Total U.S. Servicemembers (VA estimate) Battle Deaths (VA estimate)
106,000 1,000
Vietnam War (1964–1975) Total U.S. Servicemembers (Worldwide) Deployed to Southeast Asia Battle Deaths Other Deaths (In Theater) Other Deaths in Service (Non-Theater)
Mexican War (1846–1848) Total U.S. Servicemembers Battle Deaths Other Deaths in Service
78,718 1,733 11,550
9,200,000 3,403,000 47,415 10,785 32,000
Desert Shield/Desert Storm (1990–1991)
Civil War (1861–1865) Total U.S. Servicemembers (Union) Battle Deaths (Union) Other Deaths in Service (Union) Total Servicemembers (Confederate) Battle Deaths (Confederate) Other Deaths in Service (Confederate)
5,720,000 33,741 2,835 17,670
Total U.S. Servicemembers (Worldwide) Deployed to Gulf Battle Deaths Other Deaths (In Theater) Other Deaths in Service (Non-Theater)
2,213,363 140,414 224,097 1,050,000 74,524 59,297*
2,322,332 694,550 147 235 914
America’s Wars Total Spanish-American War (1898–1902) Total U.S. Servicemembers (Worldwide) Battle Deaths Other Deaths in Service (Non-Theater)
U.S. Military Service During War Battle Deaths Other Deaths (In Theater) Other Deaths in Service (Non-Theater)
306,760 385 2,061
“Other deaths in service” is the number of U.S. servicemembers who died outside the combat theater, regardless of the cause of death. America’s Wars Fact Sheet, October 2003
World War I (1917–1918) Total U.S. Servicemembers (Worldwide) Battle Deaths Other Deaths in Service (Non-Theater)
42,348,460 651,013 13,855 524,545
4,734,991 53,402 63,114
* Does not include 26,000 to 31,000 who died in Union prisons. Source: Department of Veterans Affairs
311
312 The Encyclopedia of Death and Dying American Revolution (1175–1783) Last Veteran, Daniel F. Bakeman, died 4/5/1869, age 109 Last Widow, Catherine S. Damon, died 11/11/1906, age 92 Last Dependent, Phoebe M. Palmeter, died 4/25/1911, age 90
Mexican War (1846–1848) Last Veteran, Owen Thomas Edgar, died 9/3/1929, age 98 Last Widow, Lena James Theobald, died 6/20/1963, age 89 Last Dependent, Jesse G. Bivens, died 11/1/1962, age 94
War of 1812 (1812–1815)
Civil War (1861–1865)
Last Veteran, Hiram Cronk, died 5/13/1905, age 105 Last Widow, Carolina King, died 6/28/1936, age unknown Last Dependent, Esther A. H. Morgan, died 3/12/1946, age 89
Last Union Veteran, Albert Woolson, died 8/2/1956, age 109 Last Confederate Veteran, John Salling, died 3/16/1958, age 112 Last Union Widow, Gertrude Janeway, died 1/17/2003, age 93
Indian Wars (approx. 1817–1898)
Spanish-American War (1898–1902)
Last Veteran, Fredrak Fraske, died 6/18/1973, age 101
Last veteran, Nathan E. Cook, died 9/10/1992, age 106
APPENDIX VII CHECKLIST FOR END-OF-LIFE PLANNING _____ I have prepared an Advance Care Document with my wishes fully explained. _____ I have designated a person to make medical decisions for me if I am not able to make them myself; and that person is: ______________________________. _____ I have prepared a durable power of attorney. _____ I have designated a person to make financial decisions for me if I am not able to make them myself; and that person is: ______________________________. _____ I have set up a power of attorney for legal decisions if I am not able to make them myself; and that person is: _______________________________________. _____ I have an inventory of my medical, long-term care, and life insurance policies; _________________ knows what they are, where they are located, the agents’ contact information, and has appropriate permissions to retrieve them when necessary. _____ I have a valid, up-to-date will and/or trust documents, located _____________________. _____ I have either compiled my other important papers in one location, or have listed them and their locations, and _________________ has full information on where each is. _____ My Social Security number is ________________________________. _____ My veteran’s C-number is __________________________. _____ I have outlined my preferred funeral or memorial arrangements (see Appendix VIII). _____ I have made the following organ, tissue, or body donation arrangements: ________________________. _____ I have discussed these organ or body donation wishes with my family. _____ I have designated the following guardian for my minor children and have discussed the responsibilities with that person or persons: __________________________.
313
APPENDIX VIII FUNERAL PREPLANNING By making your wishes known, and taking care of the important details ahead of time, you save your family members from having to make burdensome decisions at the most difficult time. Once completed, the following information needs to be copied and given to two or three close family members, appropriate clergy, and preferred funeral home. The information is necessary not only for the funeral services, but also for those sections of the death certificate that the funeral director must complete.
ANCESTRY (needed for death certificate)
This person considered himself or herself to be: ❑ White ❑ Black or African American ❑ American Indian or Alaskan Native—name of enrolled or principal tribe: ❑ Native Hawaiian ❑ Asian—Specify country of origin: If of Hispanic origin, which of the following applies: ❑ Mexican, Mexican-American, Chicano ❑ Puerto Rican ❑ Cuban ❑ Other Spanish/Hispanic/Latino ❑ Other:
PERSONAL INFORMATION
Last Name: First Name: Middle Name: Address: City: County: State: Zip Code: Phone: E-mail:
EDUCATION AND WORK HISTORY
Usual Occupation: Business or Industry: Company or Employer: Title: Years of Service: Other Important Work History: Highest Level of School Completed; Educational Degrees Obtained (needed for death certificate):
This person is: ❑ Married ❑ Separated ❑ Divorced ❑ A Widow ❑ A Widower
MILITARY HISTORY
Date of Birth: Place of Birth: Spouse’s Name: Spouse’s Maiden Name: Place of Marriage: Date of Marriage: Mother’s Name: Mother’s Maiden Name: Father’s Name:
Years of Service: Service Branch: Serial Number: Date Enlisted: Date Discharged: Rank at Discharge: Years of Service: Place of Service: War Service:
315
316 The Encyclopedia of Death and Dying PERSONAL INFORMATION FOR OBITUARY
Hobbies: Community Service: Other Achievements: PERSON TO FINALIZE UPON DEATH
Last Name: First Name: Middle: Address: City: County: State: Zip Code: Phone: E-mail: Relation to Deceased:
PERSONAL FUNERAL/MEMORIAL SERVICE INSTRUCTIONS
Service Will Be: ___ Public Visitation Location: Service Location: Concluding at: Religion: Place of Worship: Clergy to Officiate:
___ Private
Other Special Instructions (casket bearer names, clothing and jewelry to be worn, items for a memento display, etc.):
Musical Selections (Played, Sung, Other): FINAL DISPOSITION
___ Ground Interment ___ Ground Interment—Burial Vault ___ Ground Interment—Concrete Liner ___ Mausoleum Entombment ___ Cremation ___ Cremation—Niche Entombment ___ Cremation—Home Memorial ___ Cremation—Scattering ___ Cremation—Burial
Favorite Literature, Poems, Passages of Scripture:
Favorite Flowers, Flower Color, Arrangements:
Name of Cemetery/Mausoleum:
Address:
Transportation for family and guests, funeral procession lineup
Reprinted with permission, courtesy Jenkins Funeral Home, 156 Main Street, Colebrook, NH 03576; (603) 237–4311; (603) 237–5759 (fax); http://www.jenkinsfuneralhome.net;
[email protected] APPENDIX IX 2003 REVISIONS OF THE U.S. STANDARD CERTIFICATE OF DEATH AND THE FETAL DEATH REPORT sion process in 2003, but full implementation in all states will be phased in over several years. A critical component of the recommendations for this revision focused on fundamental changes in the way that data are collected. Partly as a consequence of these recommendations, states re-engineered their vital statistics systems as they implemented the revisions. Following are copies of the U.S. Standard Certificate of Death and U.S. Standard Report of Fetal Death:
The Centers for Disease Control and Prevention’s National Center for Health Statistics collaborated with colleagues in state vital statistics offices to revise the certificate of death and the report of fetal death. This process is generally carried out every 10–15 years. Prior to 2003, the most recent revisions in effect were implemented in 1989. The 2003 revisions were approved by Secretary of Health and Human Services Tommy Thompson, and then went into effect in the states. Some states began the revi-
317
APPENDIX X ORGANIZATIONS AND HELP GROUPS (215) 446-3500 (800) 441-ABIM (2246) (toll-free)
[email protected] http://www.abim.org
American Academy of Family Physicians P.O. Box 11210 Shawnee Mission, KS 66207-1210 (913) 906-6000 (800) 274-2237 (toll-free)
[email protected] http://www.aafp.org
American Geriatrics Society Empire State Building 350 Fifth Avenue Suite 801 New York, NY 10118 (212) 308-1414 (212) 832-8646 (fax)
[email protected] http://www.americangeriatrics.org
American Academy of Home Care Physicians P.O. Box 1037 Edgewood, MD 21040-0337 (410) 676-7966 (410) 676-7980 (fax)
[email protected] http://www.aahcp.org
American Hospice Foundation 2120 L Street NW Suite 200 Washington, DC 20037 (202) 223-0204 (202) 223-0208 (fax)
[email protected] http://www.americanhospice.org
American Academy of Hospice and Palliative Medicine (AAHPM) (originally organized as Academy of Hospice Physicians) 4700 West Lake Avenue Glenview, IL 60025 (847) 375-4712 (877) 734-8671 (fax)
[email protected] http://www.aahpm.org
American Pain Foundation 210 North Charles Street Suite 710 Baltimore, MD 21201-4111 (888) 615-7246 (toll-free)
[email protected] http://www.painfoundation.org
American Board of Hospice and Palliative Medicine (ABHPM) 9200 Daleview Court Silver Spring, MD 20901 (301) 439-8001 (301) 434-4118 (fax) Email:
[email protected] http://www.abhpm.org
The American Academy of Pediatrics 141 Northwest Point Boulevard Elk Grove Village, IL 60007-1098 (847) 434-4000 (847) 434-8000 (fax)
[email protected] http://www.aap.org
American Board of Internal Medicine 510 Walnut Street Suite 1700 Philadelphia, PA 19106
325
326 The Encyclopedia of Death and Dying Americans for Better Care of the Dying (ABCD) 4200 Wisconsin Avenue NW Fourth Floor Washington, DC 20016 (202) 895-2660 (202) 966-5410 (fax)
[email protected] http://www.abcd-caring.com American Society of Bioethics and Humanities 4700 West Lake Glenview, IL 60025-1485 (847) 375-4745 (877) 734-9385 (fax)
[email protected] http://www.asbh.org Association for Death Education and Counseling 342 North Main Street West Hartford, CT 06117-2507 (860) 586-7503 (860) 586-7550 (fax)
[email protected] http://www.adec.org Center for Traumatic Grief and Victim Services P.O. Box 332 Moorestown, NJ 08057 (856) 866-2066 (856) 866-2017 (fax)
[email protected] http://www.traumaticgrief.org California Hospice & Palliative Care Association P.O. Box 160087 Sacramento, CA 95816 (916) 441-3770 (916) 441-4720 (fax)
[email protected] http://www.calhospice.org Canadian Hospice Palliative Care Association Suite 131C 43 Bruyère Street Ottawa, ON K1N 5C8 (613) 241-3663 or (800) 668-2785
(613) 241-3986 (fax)
[email protected] http://www.chpca.net Centers for Medicare & Medicaid Services 7500 Security Boulevard Baltimore MD 21244-1850 (877) 267-2323 (toll-free) (410) 786-3000 http://www.cms.hhs.gov Children’s Hospice International 901 North Pitt Street Suite 230 Alexandria, VA 22314 (703) 684-0330 http://www.chionline.org City of Hope Pain/Palliative Care Resource Center 1500 East Duarte Road Duarte, CA 91010 (626) 359-8111, ext. 63829
[email protected] http://www.cityofhope.org Compassion in Dying Federation 6312 Southwest Capitol Highway Suite 415 Portland, OR 97239 (503) 221-9556 (503) 228-9160 (fax)
[email protected] http://www.compassionindying.org The Compassionate Friends, Inc. P.O. Box 3696 Oak Brook, IL 60522-3696 (630) 990-0010 (630) 990-0246 (fax) (877) 969-0010 (toll-free)
[email protected] http://www.compassionatefriends.org The Connecticut Hospice, Inc. 100 Double Beach Road Branford, CT 06405 (203) 315-7500
[email protected] http://www.hospice.com
Appendix X 327 The Dougy Center for Grieving Children and Teens P.O. Box 86852 Portland, OR 97286 (503) 775-5683 (503) 777-3097 (fax)
[email protected] http://www.grievingchild.org Fernside: A Center for Grieving Children 4380 Malsbary Road Suite 300 Cincinnati, OH 45242 (513) 745-0111 (513) 745-0524 (fax) http://www.fernside.org Harvard Medical School Center for Palliative Care Massachusetts General Hospital Founders House Founders House 606, 55 Fruit Street Boston, MA 02114 (617) 724-9509
[email protected] http://www.hms.harvard.edu/cdi/pallcare/ Hospice and Palliative Nurses Association (HPNA) Penn Center West One Suite 229 Pittsburgh, PA 15276 (412) 787-9301 (412) 787-9305 (fax)
[email protected] http://www.hpna.org
Hospice Patients Alliance 4541 Gemini Street P.O. Box 744 Rockford, MI 49341-0744
[email protected] http://www.hospicepatients.org Initiative to Improve Palliative Care for African-Americans (IIPCA) P.O. Box 2491 New York, NY 10021 (212) 639-6398
[email protected] http://www.iipca.org International Association for Hospice and Palliative Care (IAHPC) 5535 Memorial Drive Suite F–PMB 509 Houston, TX 77007 (713) 880-2940 (713) 880-2948 (fax)
[email protected] http://www.hospicecare.com Jenna Druck Foundation 3636 Fifth Avenue Suite 201 San Diego CA 92103 (619) 294-8000 (619) 294-8889 (fax)
[email protected] http://www.jennadruck.org
Hospice Association of America 228 Seventh Street SE Washington, DC 20003 (202) 546-4759 (202) 547-9559 (fax) http://www.hospice-america.org
Midwest Bioethics Center Town Pavilion 1100 Walnut Street Suite 2900 Kansas City, MO 64106-2197 (816) 221-1100 (816) 221-2002 (fax)
[email protected] http://www.midbio.org
Hospice Foundation of America 2001 S Street NW, #300 Washington, DC 20009 (800) 854-3402 (202) 638-5312 (fax)
[email protected] Web site: http://www.hospicefoundation.org
National Association for Home Care 228 7th Street SE Washington, DC 20003 (202) 547-7424 (202) 547-3540 (fax)
[email protected] http://www.nahc.com
328 The Encyclopedia of Death and Dying National Hospice and Palliative Care Organization (NHPCO) 1700 Diagonal Road Suite 625 Alexandria, VA 22314 (703) 837-1500 (703) 837-1233 (fax)
[email protected] http://www.nhpco.org National Prison Hospice Association P.O. Box 4623 Boulder, CO 80306-4623 (303) 447-8051 (303) 447-8055 (fax)
[email protected] http://www.npha.org
Oregon Hospice Association P.O. Box 10796 Portland, OR 97296-0796 (503) 228-2104 (503) 222-4907 (fax)
[email protected] http://www.oregonhospice.org Supportive Care of the Dying: A Coalition for Compassionate Care c/o Providence Health System 4805 Northeast Glisan Street, 2E07 Portland, OR 97213 (503) 215-5053 (503) 215-5054 (fax)
[email protected] http://www.careofdying.org
APPENDIX XI DEATH CARE INDUSTRY & CONSUMER ORGANIZATIONS Funeral Ethics Organization P.O. Box 145 87 Upper Access Road Hinesburg, VT 05461 (802) 482-3437 or (866) 866-5411 (802) 482-5246 (fax)
[email protected] http://www.funeralethics.org
Casket & Funeral Supply Association of America 51 Sherwood Terrace Suite D-1 Lake Bluff, IL 60044 (847) 295-6630 (847) 295-6647 (fax)
[email protected] http://www.cfsaa.org
Funeral Service Foundation 13625 Bishop’s Drive Brookfield, WI 53005-6607 (877) 402-5900 (262) 789-6977 (fax) http://www.funeralservicefoundation.org
Cremation Association of North America 401 North Michigan Avenue Chicago, IL 60611 (312) 245-1077 (312) 321-4098 (fax)
[email protected] http://www.cremationassociation.org
International Cemetery and Funeral Association Inc. 1895 Preston White Drive Suite 220 Reston, VA 20191 (800) 645-7700 (toll-free) (703) 391-8400 (703) 391-8416 (fax)
[email protected] http://www.icfa.org
Final Passages P.O. Box 1721 Sebastopol, CA 95473 (707) 824-0268
[email protected] http://www.finalpassages.org Funeral and Memorialization Information Council (FAMIC) 70 Market Street Mt. Sterling, OH 43143 (740) 869-3113 (740) 869-9991 (fax)
[email protected] http://www.famic.org
International Conference of Funeral Service Examining Boards 1885 Shelby Lane Fayetteville, AR 72704 (479) 442-7076 (479) 442-7090 (fax)
[email protected] http://www.cfseb.org
Funeral Consumers Alliance 33 Patchen Road South Burlington, VT 05403 (800) 765-0107 (toll-free) http://www.funerals.org
International Order of the Golden Rule (800) 637-8030 (toll-free)
[email protected] http://www.ogr.org
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330 The Encyclopedia of Death and Dying Jewish Funeral Directors of America, Inc. Seaport Landing 150 Lynnway Suite 506 Lynn, MA 01902 (781) 477-9300 (781) 477-9393 (fax)
[email protected] http://www.jfda.org
National Funeral Directors and Morticians Association (NFD&MA) 3951 Snapfinger Parkway Suite 570 Decatur, GA 30035 (800) 434-0958 (404) 286-6573 (fax)
[email protected] http://www.nfdma.com
Monument Builders of North America 401 North Michigan Avenue Suite 2200 Chicago, IL 60611-4267 (800) 233-4472 (312) 673-6732 (fax)
[email protected] http://www.monumentbuilders.org
Selected Independent Funeral Homes (formerly National Selected Morticians) 500 Lake Cook Road Suite 205 Deerfield, IL 60015 (800) 323-4219
[email protected] http://www.nsm.org
National Funeral Directors Association 13625 Bishop’s Drive Brookfield, WI 53005 (800) 228-6332 (toll-free) (262) 789-1880 (262) 789-6977 (fax)
[email protected] http://www.nfda.org
APPENDIX XII WEB SITES OFFERING RESOURCES AND HELP Death & Dying from About.com http://dying.miningco.com
Beth Israel Medical Center—Department of Pain Medicine & Palliative Care http://www.stoppain.org
Chat, bulletin board, resources, and inspirational quotes
Information on the latest innovations in pain and palliative care, education, research, and clinical trials, as well as hospice and end-of-life care
Dying Well http://www.dyingwell.org
Caregiver Network http://www.caregiver.on.ca
The site of Dr. Ira Byock, a well-known hospice physician and author who has worked actively to improve care for the terminally ill in the United States
Canadian resource center created to help caregivers of the elderly and ill Caregiver.com http://www.caregiver911.com
Edmonton Palliative Care Program (Canada) http://www.palliative.org
Resources to help cope with the demands of caregiving
Clinical information, patient assessment tools, cancer material, and links to related resources
Caregiving.com http://www.caregiving.com
End of Life Palliative Education Resource Center (EPERC) http://www.eperc.mcw.edu
Online support haven for persons who care for an aging relative
Central repository for educational materials and information about end-of-life issues
Clinical Pastoral Education at VITAS Innovative Hospice Care http://www.cpevitas.com
GriefNet.org http://griefnet.org
For those interested in learning about end-of-life issues, deepening their spirituality, and enhancing their pastoral care skills
An Internet community of persons dealing with grief, death, and major loss
Crisis, Grief, and Healing http://www.webhealing.com
Growth House Inc. http://www.growthhouse.org
A place where men and women can discuss, chat, or simply browse to understand and honor the many different paths to heal strong emotions
Portal and international gateway to resources for life-threatening illness and end-of-life care
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332 The Encyclopedia of Death and Dying Hospice Net http://www.hospicenet.org For patients and families facing life-threatening illness—general introduction to hospice care with articles on terminal care and bereavement Hospice Web http://www.hospiceweb.com International directory of hospices with hot links to Web sites Last Acts Campaign to Improve End-of-Life Care http://www.lastacts.org News and a broad range of resources related to palliative care
National Center for Post-Traumatic Stress Disorder http://www.ncptsd.org Information and resources for professionals about treatment, prevention, and research in work with traumatized children, including trauma-related grief Palliative Medicine http://www.mailbase.org.uk/lists/palliative-medicine Discussion list for professionals Rites of Passage http://www.ktc.net/ritesofpassage Education on AIDS, death and dying, and aging through the arts: film and video, photography, theater, and music
Last Chapters http://www.lastchapters.org
University of Ottawa Institute of Palliative Care http://www.pallcare.org
A collection of inspiring stories and video interviews of people who are facing death or chronic illness
Includes page of links to files that can be downloaded for personal use
APPENDIX XIII MUSEUMS OF FUNERAL CUSTOMS AND HISTORY had retrieved equipment and other artifacts from their attics donated most of the 4,000 historical objects on display. Included are coffins, embalming tools, and mourning accessories.
In an effort to preserve the trappings of history, plus cater to the public’s fascination with death, museums of funeral customs have sprung up around the world. In Europe, museums exist in Budapest (see http://www.btirt.hu), Hamburg (see http://www. friedhof-hamburg.de), Amsterdam (see http://www. uitvaartmuseum.nl/), and Vienna. The European Federation of Funeral Museums offers information in German at http://www.friedhof-und-denkmal. de/afd/afd_effm.htm Among the funeral museums in the United States are:
The Olmstead Funeral & Historical Museum 108 South 4th Street Heber Springs, AR 72543 (501) 362-2422 http://www.olmstead.cc/museum.htm Located on the original site of Olmstead Funeral Home, founded in 1896 by T. E. Olmstead and listed on the National Register of Historic Places. The museum also displays historical items from around the state and from other states.
The National Museum of Funeral History 415 Barren Springs Drive Houston, TX 77090 (281) 876-3063 (281) 876-4403 (fax) http://www.nmfh.org
Museum of Mourning Art 2900 State Road Drexel, PA 19026 (610) 259-5800
Opened on October 18, 1992. With over 20,000 square feet of exhibition space, the nonprofit organization is the largest educational center on funeral heritage in the United States and perhaps the world. Displays include Victorian funeral attire, metal Civil War coffins, horse-drawn hearses, and memorabilia from funerals of the famous.
Exhibits explore the history and the culture of grief and the symbolic forms with which grief has been expressed over the centuries. Milwaukee Area Technical College Funeral Services Department MATC West Campus 1200 South 71st Street West Allis, WI 53214 (414) 456-5320
The Museum of Funeral Customs 1440 Monument Avenue Springfield, IL 62702 (217) 544-3480 (217) 544-3484 (fax) http://www.funeralmuseum.org
The three-room museum contains artifacts from the 1800s and early 1900s, as well as a recreation of an 1800s funeral visitation.
Run by the Illinois Funeral Directors Association. Third- and fourth-generation funeral directors who
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334 The Encyclopedia of Death and Dying Antique Funeral Museum Pope Dickson & Son Funeral Home 168 McDonough Street Jonesboro, GA 30236 (770) 478-7211 Included among the artifacts is a wooden hearse that helped slaves escape to the North through a
trapdoor in its floorboard. The slave would “play dead” inside the bottomless coffin; when the hearse crossed a northern state line, the “deceased” would slide open the wooden door and escape.
BIBLIOGRAPHY Kagawa-Singer, Marjorie, Ida M. Martinson, and Frances Munet-Vilaro. “A Multicultural Perspective on Death and Dying.” Oncology Nursing Forum 25, no. 10 (November-December 1998): 1751–1760. Kagawa-Singer, Marjorie, and Leslie Blackhall. “Negotiating Cross-Cultural Issues at the End of Life.” JAMA 286, no. 23 (December 19, 2001): 2993–3001. Phipps, E., et al. “Approaching the End of Life: Attitudes, Preferences, and Behaviors of AfricanAmerican and White Patients and Their Family Caregivers.” Journal of Clinical Oncology 21 no. 3 (February 1, 2003): 549–554. Reese, D. J., et al. “Hospice Access and Use by African Americans: Addressing Cultural and Institutional Barriers through Participatory Action Research.” Social Work 44, no. 6 (November 1999): 549–559. Sarhill, Nabeel, et al. “The Terminally Ill Muslim: Death and Dying from the Muslim Perspective.” American Journal of Hospice & Palliative Care 18, no. 4 (July/August 2001): 251–255. Thomas, Norma D. “The Importance of Culture Throughout All of Life and Beyond.” Holistic Nursing Practice 15, no. 2 (January 2001): 40–46. Yick, A. G., and R. Gupta. “Chinese Cultural Dimensions of Death, Dying, and Bereavement: Focus Group Findings.” Journal of Cultural Diversity 9, no. 2 (Summer 2002): 32–42.
ARTICLES CULTURAL ISSUES
Adhopia, Ajit. “Hindus Prepare for Death from Childhood.” The Toronto Star, September 2, 2000. Barrett, Ronald K., and Karen S. Heller. “Death and Dying in the Black Experience.” Journal of Palliative Medicine 5, no. 5 (October 2002): 793–799. Candib, Lucy M. “Truth Telling and Advance Planning at the End of Life: Problems with Autonomy in a Multicultural World.” Families, Systems & Health 20, no. 3 (September 2002): 213–228. Clements, P. T., et al. “Cultural Perspectives of Death, Grief, and Bereavement.” Journal of Psychosocial Nursing and Mental Health Services 41, no. 7 (July 2003): 18–26. Cowles, K. V. “Cultural Perspectives of Grief: An Expanded Concept Analysis.” Journal of Advanced Nursing 23, no. 2 (1996): 287–294. Crawley, LaVera M. “Palliative Care in African American Communities.” Journal of Palliative Medicine 5, no. 5 (October 2002): 775–779. Crawley, LaVera M., et al. “Strategies for Culturally Effective End-of-Life Care.” Annals of Internal Medicine 136, no. 9 (May 2002): 673–679. Frates, J., and G. Garcia Bohrer. “Hispanic Perceptions of Organ Donation.” Progress in Transplantation 12, no. 3 (September 2002): 169–175. Gelfand, Donald E., et al. “Mexicans and Care for the Terminally Ill: Family, Hospice and the Church.” American Journal of Hospice & Palliative Care 18, no. 6 (November/December 2001): 391–396. Goodman, M., et al. “Cultural Differences among Elderly Women in Coping with the Death of an Adult Child.” Journal of Gerontology 46 no. 6 (1991): S321.
END-OF-LIFE CARE
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336 The Encyclopedia of Death and Dying Beresford, Larry. “Hospice Trends.” Hospice Management Advisor (March, April, May 2003). Byock, Ira. “The Nature of Suffering and of Opportunity at the End of Life.” Clinics in Geriatric Medicine 12, no. 2 (May 1996): 237–251. ———. “The Meaning and Value of Death.” Journal of Palliative Medicine 5, no. 2 (May 2002): 279–288. Byock, Ira, and Jeanne Sheils Twohig. “Expanding the Realm of the Possible.” Journal of Palliative Medicine 6, no. 2 (May 2003): 311–313. Casarett, David J., Jason H. T. Karlawish, and Ira Byock. “Advocacy and Activism: Missing Pieces in the Quest to Improve End-of-life Care.” Journal of Palliative Medicine 5, no. 1 (February 2002): 3–12. Chrystal-Frances, Eileen. “Palliative Care: A Discussion of Management and Ethical Issues.” Nursing Forum, April 1, 2003. Cochella, Susan E. W., and Donald M. Pedersen. “Negotiating a Request for Nondisclosure.” American Family Physician 67, no. 1 (January 1, 2003): 209–211. Crawley, Lavera M. “Palliative Care in African American Communities.” Journal of Palliative Medicine 5, no. 5 (October 2002): 775–779. Curtis, J. Randall, et al. “A Measure of the Quality of Dying and Death: Initial Validation Using After-Death Interviews with Family Members.” Journal of Pain and Symptom Management 24, no. 1 (July 2002): 17–31. Depaola, S. J., et al. “Death Anxiety and Attitudes toward the Elderly among Older Adults: The Role of Gender and Ethnicity.” Death Studies 27, no. 4 (May 2003): 335–354. Dobratz, Marjorie C. “Issues and Dilemmas in Conducting Research with Vulnerable Home Hospice Participants.” Journal of Nursing Scholarship 35, no. 4 (Fourth Quarter 2003): 371–376. Edgar, Julie. “Caregiving’s Changing Face.” Detroit Free Press, December 5, 2002. Ersek, M., et al. “Multicultural Considerations on the Use of Advance Directives.” Oncology Nursing Forum 25, no. 10 (November-December 1998): 1683–1689. Essinger, Douglas. “Attitudes of Tennessee Physicians toward Euthanasia and Assisted Death.” Southern Medical Journal 96, no. 5 (2003): 427–435.
Girgis, A., and R. W. Sanson-Fisher. “Breaking Bad News: Consensus Guidelines for Medical Practitioners.” Journal of Clinical Oncology 13, no. 9 (1995): 2449–2456. Halstead, M. T., and S. T. Roscoe. “Restoring the Spirit at the End of Life: Music as an Intervention for Oncology Nurses.” Clinical Journal of Oncology Nursing 6, no. 6 (November-December 2002): 332–336. Hynson, Jenny L., et al. “The Dying Child: How Is Care Different?” Medical Journal of Australia 179, no. 6, Suppl. (2003): S20. Kayser-Jones, J. “The Experience of Dying: An Ethnographic Nursing Home Study.” The Gerontologist 42, Suppl. III (October 1, 2002): 11–19. Krisman-Scott, Mary Ann. “An Historical Analysis of Disclosure of Terminal Status.” Journal of Nursing Scholarship 32, no. 1 (2000): 47–52. Krout, R. E. “Music Therapy with Imminently Dying Hospice Patients and Their Families: Facilitating Release near the Time of Death.” American Journal of Hospice & Palliative Care 20, no. 2 (March-April 2003): 129–134. Lo, B., D. Ruston, L. W. Kates, R. M. Arnold, C. B. Cohen, K. Faber-Langendoen, S. Z. Pantilat, C. M. Puchalski, T. R. Quill, M. W. Rabow, S. Schreiber, D. P. Sulmasy, J. A. Tulsky, Working Group on Religious and Spiritual Issues at the End of Life. “Discussing Religious and Spiritual issues at the End of Life: A Practical Guide for Physicians.” JAMA 287, no. 6 (February 13, 2002): 749–754. Maddocks, Ian. “Palliative Care in the 21st Century.” Medical Journal of Australia 179, no. 6 Suppl. (2003): S4. Maltby, Barbara S. “Planning Ahead for End-of-Life Care.” Arthritis Self-Management. January/February, 2004. McNeil Jr., Donald G. “Reports on Fasting Add to Euthanasia Debate.” International Herald Tribune, 1 August 2003. Meisel, A., L. Snyder, and T. Quill, T. “Seven Legal Barriers to End-of-Life Care; Myths, Realities and Grains of Truth.” JAMA 284, no. 19 (November 15, 2000): 2495–2501. Miller, Susan C. and Vince N. T. Mor. “The Role of Hospice Care in the Nursing Home Setting.” Journal of Palliative Medicine 5, no. 2 (2002): 271–277.
Bibliography 337 Patrick, Donald L., Ruth A. Engelberg, and J. Randall Curtis. “Evaluating the Quality of Dying and Death.” Journal of Pain and Symptom Management 22, no. 3 (September 2001): 717–726. Quill, Timothy E., Diane E. Meier, Susan D. Block, and J. Andrew Billings. “The Debate over PhysicianAssisted Suicide: Empirical Data and Convergent Views.” Annals of Internal Medicine 128 (April 1, 1998): 552–558. Ratcliff, Margaret. “Dying inside the Walls.” Innovations in End-of-Life Care 2, no. 3 (May-June 2000). Sahler, Olle Jane, Gerri Frager, Marcia Levetown, Felicia G. Cohn, and Michael A. Lipson. “Medical Education about End-of-Life Care in the Pediatric Setting: Principles, Challenges, and Opportunities.” Pediatrics 105, no. 3 pt. 1 (March 2000): 575–584. Scannell, Kate. “Hidden Patients—Strain Takes Major Toll on Family Caregivers.” Alameda (Cal.) Times-Star, July 20, 2003. Simpson, Suzanne M. “Near Death Experience: A Concept Analysis as Applied to Nursing.” Journal of Advanced Nursing 36, no. 4 (November 2001): 520–526. Teno, Joan M., et al. “Family Perspectives on Endof-life Care at the Last Place of Care.” JAMA 291, no. 1 (January 7, 2004): 88–93. Tilden, Virginia, et al. “Family Decision Making to Withdraw Life-Sustaining Treatments from Hospitalized Patients.” Nursing Research 50, no. 2 (March/April 2001): 105–115. Tschann, J. M., S. R. Kaufman, and G. P. Micco. “Family Involvement in End-of-Life Hospital Care.” Journal of the American Geriatrics Society 51, no. 6 (June 2003): 835–840. Tuttas, Carol A. “The Facts of End-of-life Care.” Journal of Nursing Care Quality 16, no. 2 (January 2002): 10+. Van Dover, Leslie J., and Jane M. Bacon. “Spiritual Care in Nursing Practice: A Close-up View.” Nursing Forum 36, no. 3 (July 2001): 18–29. van Steenburgh, Jason. “Avoiding Trouble When Using Opiates to Treat Patient Pain.” ACP Observer (American College of Physicians), June 2003. Whitten, Pamela, et al. “Telehospice: End-of-Life Care over the Lines.” Nursing Management 34, no. 11 (November 2003): 36–39.
Wildiers, H., and J. Menten. “Death Rattle: Prevalence, Prevention and Treatment.” Journal of Pain and Symptom Management 23 (2002): 310–317. FINAL DISPOSITION & FUNERAL RITES
Bentley, Rosalind. “Can’t Make It to Grandma’s Funeral? Now You Can Watch It Online.” Minneapolis-St. Paul Star Tribune, December 27, 2002. Clarke, Elizabeth. “How Different Religions Handle Death of Faith and Forever.” Palm Beach Post, January 4, 2002. Cullen, Lisa Takeuchi. “What a Way to Go: DeathDefying Rites Are Making Funerals More Personal and—Dare We Say It?—More Fun.” Time, July 7, 2003. Frates, J., and G. Garcia Bohrer. “Hispanic Perceptions of Organ Donation.” Progress in Transplantation 12, no. 3 (September 2002): 169–175. Green, Carolyn. “Whole Body Donation.” Medical Post, December 5, 2000. Kerkstra, Patrick. “Bringing the Dearly Departed Home: A Reborn Backyard Trend.” Philadelphia Inquirer, October 26, 2002. Lahiri, Tripti. “In Death, Homeward Bound.” The New York Times, June 26, 2003. Marcia, Michelle. “Slavery’s Past Coming to Rest in N.Y.” The Washington Post, October 4, 2003. Marsalis, Ellis L., Jr. “New Orleans Jazz Funerals.” American Visions 13, no. 5 (October-November 1998): 19+. Sabir, Nadirah Z. “Shrouding: A Rite Ancient and Modern.” The Atlanta Journal and Constitution, January 11, 2003. Smith, Nancy. “Greener Ways to the Great Beyond: Here’s How to Ensure Your Final Resting Place Is Earth Friendly and Priced Right.” Mother Earth News. Available online. URL: http://www.mother earthnews.com/index.php?page=rec&id=2052. Posted 2003. Wiseman, Richard, E. Greening, and Matthew Smith. “Belief in the Paranormal and Suggestion in the Seance Room.” British Journal of Psychology 94, part 3 (August 2003): 285–297. Zaslow, Jeffrey. “As More People Remarry: The Family Plot Thickens.” The Wall Street Journal, February 20, 2003.
338 The Encyclopedia of Death and Dying GRIEF
Bonanno, George. “Resilience to Loss and Chronic Grief: A Prospective Study From Pre-Loss to 18 months Post-Loss.” Journal of Personality and Social Psychology 83, no. 5 (November 2002): 1150–1164. Casarett D., J. S. Kutner, and J. Abraham. “Life after Death: A Practical Approach to Grief and Bereavement.” Annals of Internal Medicine 134, no. 3 (February 6, 2001): 208–215. Chen, J. H., et al. “Gender Differences in the Effects of Bereavement-Related Psychological Distress in Health Outcomes.” Psychological Medicine 29, no. 2 (March 1999): 367–380. Ferszt, Ginette G., et al. “Transformation through Grieving: Art and the Bereaved.” Holistic Nursing Practice 13, no. 1 (October 1998): 68–75. Kaltman, Stacey, and George A. Bonanno. “Trauma and Bereavement: Examining the Impact of Sudden and Violent Deaths.” Journal of Anxiety Disorders 17, no. 2 (2003): 131–147. Kandt, Victoria E. “Adolescent Bereavement: Turning a Fragile Time into Acceptance and Peace.” School Counselor 41, no. 3 (January 1994): 203–211. Kay, Andrea. “Hidden Cost of Grief in the Workplace Is More than $75 Billion.” The Honolulu Advertiser, December 15, 2003. Large, Elizabeth. “There May Not Be a ‘Best’ Way of Dealing with Grief.” Funeral & Estate Planning Guide, The Union Leader, April 11, 2003. Morin, Suzanne M., and Lesley A. Welsh. “Adolescents’ Perceptions and Experiences of Death and Grieving.” Adolescence 31, no. 123 (Fall 1996): 585–595. Neimeyer, Robert A. “Searching for the Meaning of Meaning: Grief Therapy and the Process of Reconstruction.” Death Studies 24, no. 6 (September 2000): 541–558. Periyakoil, Yjeyanthi S., and James Hallenbeck. “Identifying and Managing Preparatory Grief and Depression at the End of Life.” American Family Physician 65, no. 5 (March 1, 2002): 883–890. Rask K., M. Kaunonen, and M. Paunonen-Ilmonen. “Adolescent Coping with Grief after the Death of a Loved One.” International Journal of Nursing Practice 8, no. 3 (June 2002): 137–142.
Schwab, R. “Gender Differences in Parental Grief.” Death Studies 20, no. 2 (March-April 1996): 103–113. Sweeting, H. N., and L. M. Gilhooley “Doctor, Am I Dead? A Review of Social Death in Modern Societies.” Omega: Journal of Death and Dying 24, no. 4 (1992): 251–269. Syuber, Margaret L., and Violet Hovsepian Mesrkhani. “‘What Do We Tell the Children?’ Understanding Childhood Grief.” Western Journal of Medicine 174, no. 3:187–191. Zerbe, Kathryn J., and Deborah L. Steinberg. “Coming to Terms With Grief and Loss: Can Skills for Dealing with Bereavement Be Learned?” Postgraduate Medicine 108, no. 6 (November 2000): 97–106. HISTORY OF DEATH PRACTICES
Payne, Sebastian. “A Barrow Full of Cattle Skulls. (Cattle Burial Mound in Northamptonshire, England).” Antiquity, March 1, 1993. Thomas, Julian. “Death, Identity and the Body in Neolithic Britain.” Journal of the Royal Anthropological Institute 6, no. 4 (2000). Wilford, John Noble. “Researchers Paint New Portrait of an Ancient People.” The New York Times, February 10, 1998.
BOOKS Aiken, Lewis R. Dying, Death and Bereavement, 4th Edition. Mahwah, N.J.: Lawrence Erlbaum Associates, 2001. Allen, Janet, ed. Using Literature to Help Troubled Teenagers Cope with End-of-Life Issues. Westport, Conn.: Greenwood Publishing Group, 2001. Aries, Phillippe. Western Attitudes Toward Death: From the Middle Ages to the Present. London: Marion Boyars Publishers, 1994. Ashenburg, Katherine. The Mourner’s Dance: What We Do When People Die. New York: North Point Press, 2003. Ballard, James O., Theodore Blaisdell, and Anne Hunsaker Hawkins, eds. Time to Go: Three Plays on Death and Dying, with Commentary on End-of-Life Issues. Philadelphia: University of Pennsylvania Press, 1995.
Bibliography 339 Barnard, David, et al., eds. Crossing Over: Narratives of Palliative Care. New York: Oxford University Press, 2000. Bartlow, Bruce G. Medical Care of the Soul: A Practical and Healing Guide to End-of-Life Issues for Families, Patients and Health Care Providers. Boulder, Colo.: Johnson Books, 2000. Baxter, Grant, and Wendy Stuart. Death and the Adolescent: A Resource Handbook for Bereavement Support Groups in Schools. Toronto: University of Toronto Press, 1999. Bennett, Amanda, and Terence B. Foley. In Memorial: A Practical Guide to Planning a Memorial Service. New York: Fireside Simon & Schuster, 1997. Boritzer, Etan. What Is Death? Santa Monica, Calif.: Veronica Lane Books, 2000. Braun, Kathryn L., James H. Pietsch, and Patricia L. Blanchette, eds. Cultural Issues in End-of-Life Decision Making. Thousand Oaks, Calif.: Sage Publications, 1999. Bremer, Edd. J. M., Theo P. J. Van Den Hout, and R. Peters, eds. Hidden Futures: Death and Immortality in Ancient Egypt, Anatolia, the Classical, Biblical and Arabic-Islamic World. Amsterdam: Amsterdam University Press, 1994. Byock, Ira. Dying Well: The Prospect of Growth at the End-of-Life. New York: Putnam/Riverhead, 1997. Callahan, Maggie, and Patricia Kelly. Final Gifts; Understanding the Special Awareness Needs and Communications of the Dying. New York: Bantam, 1997 (reprint). Carlson, Lisa. Caring for the Dead: Your Final Act of Love. Hinesburg, Vt.: Upper Access Books, 1998. Cobb, Mark. The Dying Soul: Spiritual Care at the End of Life. Berkshire, U.K.: Open University Press, 2001. Colman, Penny. Corpses, Coffins, and Crypts: A History of Burial. New York: Henry Holt and Company, 1997. Cook, Alicia Skinner, and Daniel S. Dworkin. Helping the Bereaved: Therapeutic Interventions for Children, Adolescents, and Adults. New York: Basic Books, 1992. Counts, David R., and Dorothy A. Counts, eds. Coping with the Final Tragedy: Cultural Variation in Dying and Grieving. Amityville, N.Y.: Baywood, 1991. Crawford, S. Cromwell. Dilemmas of Life and Death: Hindu Ethics in North American Context. Albany: State University of New York Press, 1995.
Davis, Douglas. Brief History of Death. Malden, Mass.: Blackwell Publishing, 2004. DeStefano, Anthony. A Travel Guide to Heaven. New York: Doubleday, 2003. De Vries, Brian, ed. End of Life Issues: Interdisciplinary & Multidimensional Perspectives. New York: Springer Publishing Company, 1999. Doka, Kenneth J., and Joyce D. Davidson. Living with Grief: Who We Are, How We Grieve. Washington, D.C.: Hospice Foundation of America, 1998. Doyle, Derek. Oxford Textbook of Palliative Medicine, Third Edition. New York: Oxford University Press, 2003. Doyle, Derek, David Jeffrey, and Kenneth Calman. Palliative Care in the Home. New York: Oxford University Press, 2000. DuBruck, Edelgard E. and Barbara I. Gusick, eds. Death and Dying in the Middle Ages. New York: Peter Lang Publishing, 1999. Dunn, Hank. Hard Choices For Loving People, 4th Edition. Herndon, Va.: A & A Publishers, 2002. Eldon, Amy. Angel Catcher for Kids. San Francisco: Chronicle Books, 2002. Enright, D. J. The Oxford Book of Death. New York: Oxford University Press, 2002. Enck, R. The Medical Care of Terminally Ill Patients. Baltimore: Johns Hopkins University Press, 2001. Fanos, Joanna H. Sibling Loss. Mahwah, N.J.: Lawrence Erlbaum Associates, 1996. Field, Marilyn J., and Richard E. Behrman, eds. When Children Die: Improving Palliative and End-oflife Care for Children and Their Families. Washington, D.C.: National Academies Press, 2003. Fetcher, Joann. The Egyptian Book of Living and Dying. London: Duncan Baird Publishers, 2002. Fletcher, John C., Franklin G. Miller, and James M. Humber, eds. The Nature and Prospects of Bioethics: Interdisciplinary Perspectives. Totowa, N.J.: Humana Press, 2003. Forman, Walter B. et al., eds. Hospice and Palliative Care: Concepts and Practice, Second Edition. Sudbury, Mass.: Jones & Bartlett Publishers, 2003. Golden, Thomas R. Swallowed by a Snake: The Gift of the Masculine Side of Healing, Second Edition. Gaithersburg, Md.: Golden Healing Publishing, 2000. Guggenheim, Bill, and Judy Guggenheim. Hello from Heaven! New York: Bantam Books, 1999.
340 The Encyclopedia of Death and Dying Harvard Medical School. A Guide to Living Wills and Health Care Proxies. Boston: Harvard Health Publications, 2003. Heffner, John E., and Ira R. Byock, eds. Palliative and End-of-Life Pearls. Philadelphia: Hanley and Belfus, 2002. Hopkins, Jeffrey, ed. His Holiness the Dalai Lama: Advice on Dying and Living a Better Life. New York: Simon & Schuster, 2002. Hughes, Theodore E., and David Klein. The Executor’s Handbook: A Step-By-Step Guide to Settling an Estate for Personal Representatives, Administrators, and Beneficiaries, Second Edition. New York: Facts On File, 2001. Infeld, Donna Lind, Audrey K. Goldman, and Bernice Catherine Harper. Hospice Care and Cultural Diversity. New York: Haworth Press, 1995. Jalland, Pat. Death in the Victorian Family. Oxford: Oxford University Press, 1996. Jones, Constance. R.I.P.: The Complete Book of Death & Dying. New York: HarperCollins, 1997. Jones, D. Gareth. Speaking for the Dead: Cadavers in Biology and Medicine. Brookfield, Vt.: Ashgate, 2000. Jupp, Peter C., and Clare Gittings, eds. Death in England—An Illustrated History. Manchester, England: Manchester University Press, 1999. Kastenbaum, Robert. The Psychology of Death, Third Edition. New York: Springer Publishing Company, 2000. Kessler, David. The Needs of the Dying. New York: HarperCollins, 2000. Klein, Allen. The Courage to Laugh: Humor, Hope, and Healing in the Face of Death and Dying. New York: Jeremy P. Tarcher, 1998. Kübler-Ross, Elisabeth. On Death and Dying. New York: Scribner, 1997 (reprint). ———. On Children and Death. New York: Scribner, 1997 (reprint). ———. Living with Death and Dying. New York: Scribner, 1997 (reprint). Kuebler, Kim, Patricia Berry, and Deborah Heidrich. End-of-Life-Care: Clinical Practice Guidelines. Philadelphia: W. B. Sanders, 2002. Kuhl, David. What Dying People Want. New York: Public Affairs, 2002. Laderman, Gary. The Sacred Remains: American Attitudes toward Death, 1799–1883. New Haven, Conn.: Yale University Press, 1996.
———. Rest in Peace: A Cultural History of Death and the Funeral Home in Twentieth-Century America. New York: Oxford University Press, 2003. LaGrand, Louis. After-Death Communication: Final Farewells. St. Paul, Minn.: Llewellyn Publications, 1997. ———. Messages and Miracles: Extraordinary Experiences of the Bereaved. St. Paul, Minn.: Llewellyn Publications, 1999. Larsen, Laura. Facing the Final Mystery: A Guidebook for Discussing End-of-Life Issues Now. Malibu, Cal.: Blue Sky Press, 2002. Latko, David W. Financial Strategies for Today’s Widow. New York: Fireside Simon & Schuster, 2003. Lawton, M. Powell, ed. Annual Review of Gerontology and Geriatrics, Volume 20, 2000: Focus on the End of Life: Scientific & Social Issues. New York: Springer Publishing Company, 2001. Lee, Regina. Anatomical Gift: Whole Body Donation Guide. Atlanta: Consumer Education Services, 1997. Lewis, James. R. Encyclopedia of Afterlife Beliefs and Phenomena. Farmington Hills, Mich.: Gale Group, 1994. Lo, Bernard. Resolving Ethical Dilemmas: A Guide for Clinicians, Second Edition. Philadelphia: Lippincott, Williams & Wilkins, 2000. Lynn, Joanne, and Joan Harrold. Handbook for Mortals: Guidance for People Facing Serious Illness. New York: Oxford University Press, 1999. Lynn, Joanne, Janice Lynch Schuster, and Andrea Kabcenell. Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians. New York: Oxford University Press, 2000. Mansell, John S. The Funeral: A Pastor’s Guide. Nashville: Abingdon Press, 1998. Martin, Joel, and Patricia Romanowski. Love beyond Life: The Healing Power of After-Death Communications. New York: Bantam Books, 1998. Matsunami, Kodo. International Handbook of Funeral Customs. Westport, Conn.: Greenwood Press, 1998. Mehren, E., and H. Kushner. After the Darkest Hour the Sun Will Shine Again: A Parent’s Guide to Coping with the Loss of a Child. New York: Fireside Simon and Schuster, 1997. Mitford, Jessica. The American Way of Death Revisited. New York: Alfred A. Knopf, 1998.
Bibliography 341 Monroe, Barbara, and David Oliviere, eds. Patient Participation in Palliative Care: A Voice for the Voiceless. New York: Oxford University Press, 2003. Morgan, Ernest. Dealing Creatively with Death, A Manual of Death Education and Simple Burial, 14 Edition. Hinesburg, Vt.: Upper Access Books, 2001. Morris, Virginia. Talking about Death Won’t Kill You. New York: Workman, 2001. Muth, Annemarie, ed. Death and Dying Sourcebook. Detroit: Omnigraphics, 2000. Mundy, Michaelene. Sad Isn’t Bad: A Good-Grief Guidebook for Kids Dealing with Loss. St. Meinrad, Ind.: Abbey Press, 1998. Norlander, Linda, and Kerstin McSteen. Choices at the End of Life: Finding Out What Your Parents Want before It’s Too Late. Minneapolis: Fairview Press, 2001. Obayashi, Hiroshi, ed. Death and Afterlife: Perspectives of World Religions. New York: Praeger, 1992. Parkes, Colin Murray, Pittu Laungani, and Bill Young, eds. Death and Bereavement across Cultures. London: Routledge, 1997. Polen, D. Allen, Jr. The Funeral Arrangement Choice Guide. Ann Arbor, Mich.: Servant Publications, 1996. Poor, Belinda, and Gail Poirrier. End of Life Issues. Boston: Jones & Bartlett Publishers, 2001. Quill, Timothy E. Caring for Patients at the End of Life: Facing an Uncertain Future Together. New York: Oxford University Press, 2001. ———. A Midwife through the Dying Process: Stories of Healing and Hard Choices at the End of Life. Baltimore: Johns Hopkins University Press, 2002. Raphael, Simcha Paull. Jewish Views of the Afterlife. Northvale, N.J.: Jason Aronson, 2002. Ray, M. Catherine. I’m Here to Help: A Guide for Caregivers, Hospice Workers, and Volunteers. New York: Bantam, 1997. Rinpoche, Sogyal. The Tibetan Book of Living and Dying, Revised and Updated. New York: HarperCollins, 2002. Roach, Mary. Stiff: The Curious Lives of Human Cadavers. New York: W. W. Norton & Company, 2003. Roberts, Darryl J. Profits of Death. Chandler, Ariz.: Five Star Publications, 1997. Rogak, Lisa. PerPETual Care. Grafton, N.H.: Litterature, 2003.
Rosof, B. D. The Worst Loss: How Families Heal from the Death of a Child. New York: Henry Holt, 1995. Rust, Mike. Taking Care of Mom & Dad. Los Angeles: Silver Lake Publishing, 2003. Rutherford, Richard. Honoring the Dead: Catholics and Cremation Today. Collegeville, Minn.: Liturgical Press, 2001. Shaw, Eva. What to Do When a Loved One Dies. Irvine, Calif.: Dickens Press, 1994. Shriver, Maria. What’s Heaven? New York: Scholastic, 1999. Silverman, Phyllis Rolfe. Never Too Young to Know: Death in Children’s Lives. New York: Oxford University Press, 2000. Spiro, Howard, Mary G. McCrea Curnen, and Lee Palmer Wandel, eds. Facing Death: Where Culture, Religion and Medicine Meet. New Haven, Conn.: Yale University Press, 1998. Staton, Jana, Roger Shuy, and Ira Byock. A Few Months to Live: Different Paths to Life’s End. Washington, D.C.: Georgetown University Press, 2001. Taylor, Richard P. Death and the Afterlife: A Cultural Encyclopedia. Santa Barbara, Calif.: ABC-CLIO, 2000. Thornton, V. K. The Survivor’s Guide. Los Angeles: Silver Lake Publishing, 2004. Touchet, Leo, and Vernel Bagneris. Rejoice When You Die: The New Orleans Jazz Funerals. Baton Rouge: Louisiana State University Press, 1998. Toynbee, Jocelyn M. C. Death and Burial in the Roman World. Baltimore: Johns Hopkins University Press, 1996. Trotman, Frances K., and Claire M. Brody. Psychotherapy and Counseling with Older Women: CrossCultural, Family, and End-of-Life Issues. New York: Springer Publishing Company, 2001. Walter, Jennifer K., and Eran P. Klein, eds. The Story of Bioethics: From Seminal Works to Contemporary Explorations. Washington, D.C.: Georgetown University Press, 2003. Warden, Carl J. The Evolution of Human Behavior. New York: Macmillan Company, 1932. Wray, T. J. Surviving the Death of a Sibling: Living through Grief When an Adult Brother or Sister Dies. New York: Three Rivers Press, 2003. Young, Gregory W. The High Cost of Dying: A Guide to Funeral Planning. Buffalo, N.Y.: Prometheus Books, 1994.
342 The Encyclopedia of Death and Dying VIDEOS A Child’s Grief. 45 minutes. Sherborn, Mass.: Aquarius Productions, 1994. A Conspiracy of Silence: Helping the Patient and Family Live with Terminal Illness. 20 minutes. Baltimore: Video Press, University of Maryland School of Medicine, 1993. A Cradle Song: The Families of SIDS. 29 minutes. Boston: Dennis Spalsbury/Lawrence/Fanlight Productions, 1990. A Death of One’s Own. 90 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 2000. A Different Kind of Care. 24 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 2000. A Fate Worse than Death? Dealing with Artificial Life Supports. 50 minutes. Boston: Lori Hope & King Broadcasting Company, Distributed by Fanlight Productions, 1990. A Friend Called Lyle. DVD, 30 minutes. Chicago: Terra Nova Films, 1994. A Time to Change. 90 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 2000. A Time to Die: Who Decides? 33 minutes. Chicago: Terra Nova Films, 1988. Accepting Life’s Transitions. 28 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1998. Advance Directives: Assisting Patients with End-of-Life Decisions. 39 minutes. New York: Insight Media, 1997. Advance Directives: CPR in Nursing Homes. DVD, 19 minutes. Baltimore: Video Press, University of Maryland School of Medicine, 1991. Angels Don’t Have Headlights. 25 minutes. New York: Filmakers Library, 1988. At a Loss for Words. DVD, 30 minutes. Sherborn, Mass.: Aquarius Productions, 1997. At Death’s Door. 28 minutes. Orleans, Mass.: Paraclete Press, 1999. Bereaved Parents. 28 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1988. Between Life and Death. 51 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1994. Beyond Life and Death. 26 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 2000. Caring at the End of Life. Ben Achtenberg with Christine Mitchell. 45 Minutes. Boston: Fanlight Productions, 2001.
Caring for the Terminally Ill. 19 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1997. Children Die, Too. 26 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1990. Comfort Measure at the End of Life. 20 minutes. Baltimore: Video Press, University of Maryland School of Medicine, 1993. Common Heroes: Choices in Hospice Care. Robert Ruvkun. 30 minutes. Boston: Fanlight Productions, 2001. Controlling Pain. 23 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1990. Dax’s Case: Who Should Decide? 58 minutes. Washington, D.C.: Partnership for Caring, 1985. Death: A Love Story. 63 minutes. Berkeley: University of California Extension Center for Media and Independent Living, 1999. Death: An Overview. 50 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1997. Dreams & Dilemmas. 58 minutes. Boston: Fanlight Productions, 1998. Dying Wish. 52 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1989. Elisabeth Kübler-Ross—Facing Death. Stefan Haupt. 98 minutes. Brooklyn, N.Y.: First Run/Icarus Films, 2003. End Notes: A Model for Palliative Care. 51 minutes. New York: Filmakers Library, 2000. Family Caregivers. 28 minutes. Sherborn, Mass.: Aquarius Productions, 1996. Final Rest. 25 minutes. New York: Filmakers Library, 1992. Full Circle. James Vanden Bosch. 29 minutes. Chicago: Terra Nova Films, 1997. Giving Bad News: Insights for Medical Practitioners. 30 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 2000. Grief in America. Bert Atkinson. 55 minutes. Boston: Fanlight Productions, 1997. Grieving and Healing. 67 minutes. Sherborn, Mass.: Aquarius Productions, 1995. Grown-Up Tears: Adults Grieving the Death of a Parent. 28 minutes. Sherborn, Mass.: Aquarius Productions, 1997. Healing and Dying: An Interview with Stephen Levine. 90 minutes. Sherborn, Mass.: Aquarius Productions, 1997.
Bibliography 343 Healing and the Mind (multivolume set). 395 minutes. New York: Insight Media, 1993. Hell, Heaven and Resurrection. DVD, 30 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 2003. Hello in There: Understanding the Success of PersonCentered Care. 19 minutes. Boston: Educational Centre for Aging & Health, McMaster University and Fanlight Productions, 1983. How to Say Good-Bye. Three-tape series, 24 minutes each. New York: Filmakers Library, 1998. How We Die. 90 minutes. South Deerfield, Mass.: National Hospice Organization, 1995. I Want to Die at Home. 46 minutes. New York: Filmakers Library, 1990. I’m Really Going to Miss Me: Coping with Terminal Illness. 59 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1992. In Your Hands. James Vanden Bosch. 19 minutes. Chicago: Terra Nova Films, 1995. Inner Views of Grief. Juanita Johnson. 30 minutes. Boston: Fanlight Productions, 1995. Is This Life Worth Living? 30 minutes. New York: Filmakers Library, 1987. Letting Go: A Hospice Journey. DVD, 90 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1996. Living with Dying. 90 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1996. Managing Care, Managing Death: Disguised Euthanasia. 29 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1997. Medicine at the Crossroads: Life Support. James Vanden Bosch. 55 minutes. Chicago: Terra Nova Films, 1992.
Mortal Coil, Voices from the Hospice. 60 minutes. Boca Raton, Fla.: Pan Image, 1997. On Wings of Song—Music Therapy at the End of Life. 43 minutes. New York: Filmakers Library, 1999. Portraits of Grief. 24 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1994. Saying Goodbye: Grief Counseling. 15 minutes. Boston: Fanlight Productions, 1990. Some Babies Die. 55 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1986. The Biology of Death. 29 minutes. Princeton, N.J.: Films for the Humanities and Sciences, 1992. The Doctor Is in: Living Fully until Death. 28 minutes. Lebanon, N.H.: Dartmouth-Hitchcock Medical Center, 1996. The Vanishing Line. Maren Monsen, M.D. 52 minutes. Boston: Fanlight Productions, 1997. The Way We Die. Jonathan Mednick. 25 minutes. Boston: Fanlight Productions, 1995. Those Who Stay behind: When a Family Member Is Dying. NC Crossroads. 31 minutes. Boston: Fanlight Productions, 1999. To Choose No Harm: Ethical Decision Making at the End of Life. Fred Simon. 46 minutes. Boston: Fanlight Productions, 1996. To Live until I Die. 60 minutes. Chicago: WTTW National Productions, 1999. Understanding Advanced Directives. 8 minutes. New York: Filmakers Library, 1992. When All Is Said and Done: An Introduction to the Family Meeting. 29 minutes. Sherborn, Mass.: Aquarius Productions, 1995.
INDEX Boldface page numbers indicate extensive treatment of a topic.
A abandonment of the dying 1 abortion 1–4 spontaneous or natural 1, 113–114, 179, 185, 238–239 Abrahm, Janet 199 accelerated death benefits 4–5 acceptance stage of dying 5, 29, 237 of grief 6, 131 accidental death 6–7, 162, 164 American Indians/Alaska Natives 25, 26 Asian Americans/Pacific Islanders 36 autoerotic 37 children 6, 65 fetal 114 insurance coverage 7 traumatic 254–255 workplace 275–277 acupuncture for pain management 201 acute grief reaction 4, 7–8, 128 Adamec, Christine 150 adolescents grieving 8–11, 67 denial stage 96 guilt feelings 132 parent death 8–9, 11 sibling death 9, 80 suicide rate 241, 242
adoption and inheritance issues 151 advance care plan document 11, 13, 216 advance care planning 11–12, 13, 107 Five Wishes at Work program 115 Advanced Directives and Compassionate Care Act 163 advance directives 11, 12–13, 107 African-American 14 artificial hydration and nutrition 32 and competency or capacity 12–13, 55, 73 and cost of dying 82 do-not-resuscitate orders 12, 100 health care proxy 12, 13, 101, 136 imminent death treatment options 147 Last Acts report findings 161 legislation 163 living will 12, 167–168 in patient-centered care 207 Patient Self-Determination Act 207–208 in total dependence 253 African Americans 14–16, 87 accidental death 7 afterlife beliefs 14–15, 17 body donation 44 burial beliefs 15, 49 child death rate 65, 149, 240 death anxiety 90 good death concept 124–125
345
graves robbed 44, 126 health care team interactions 14, 152 homicide victims 15, 142 leading causes of death 15–16 maternal mortality 171 palliative care 204 reburial 223 workplace death 276 after-death communication 16 and communication with mediums 16, 72–73, 218, 233–234 afterlife 17–19 African-American beliefs 14–15, 17 Alaska Native beliefs 18, 20 Christian beliefs 17, 69 and communication with the dead 16, 72–73, 218, 233–234 Egyptian beliefs, ancient 17, 18, 103, 104 Greek beliefs, ancient 127 heaven 136 hell 137 hereafter 137 Hindu beliefs 17, 137 Islam beliefs 19, 152, 206 Jewish beliefs 17, 18–19, 156 mythology 184 paradise 206 Aging with Dignity 115 agonal moment 90 AIDS accelerated death benefits 5 African Americans with 14, 15
346 The Encyclopedia of Death and Dying AIDS (continued) American Indians/Alaska Natives with 25 Asian Americans/Pacific Islanders with 36 and life expectancy trends 165 marijuana stimulating appetite in 217–218 memorial quilt 220 prison inmates with 125, 147 Aiken, Lewis R. 178 air tray 19, 254 Aitken, Paul V., Jr. 12 Alaska Natives 20–21, 24–26 afterlife beliefs 18, 20 grave protection and repatriation 223 infant death 149 leading causes of death 24–26 maternal mortality 171 potlatch feast 20–21, 214 Albom, Mitch 21 Aleutians 20 algor mortis 21–22 All Hallows’ Day/All Hallows’ Eve 22, 89, 133 All Saints’ Day 22 All Souls’ Day 22 alternative container 22, 58 alternative funerals 22–23, 118–119 green or environmentallyfriendly 23, 50, 128, 140, 235 theme funeral 253 webcasting 171 Alzheimer’s disease 96, 169, 192 American Academy of Hospice and Palliative Medicine 23 American Academy of Hospice Physicians 23 American Art Therapy Association 34 American Hospice Foundation 23
American Indians 24–27, 87 burial customs 26–27, 51, 232, 257 capital punishment beliefs 56 grave protection and repatriation 187, 223 homicide victims 25, 142 infant death 149, 190, 240 leading causes of death 24–26 maternal mortality 171 Americans for Better Care of the Dying (ABCD) 27 The American Way of Death (Mitford) 180 The American Way of Death Revisited (Mitford) 63, 116, 180, 181, 186 Ammer, Christine 2, 142 Amon, Michael 127 analgesia 199–202 opioid 194–195, 199, 200, 201 patient-controlled 200, 202 anatomical gifts 27 and criteria of death 45, 86 organ and tissue donation. See organ and tissue donation Uniform Anatomical Gift Act 86, 197, 259–260 whole body donation. See body donation ancestor worship 27–28 Anderson, Mark 233 anesthetics in pain management 200 angel of death 28 angels 28–29 anger 29 adolescent 9, 10 stage of dying 29, 237 stage of grief 29, 130, 238 anniversary reaction 29–30, 62 announcement of death 30 church bell tolling 30, 93 mourning cards 181–182 obituary notice 30, 193, 224
anthropology, forensic 116 anticipatory grief 7, 30–31 abandonment of the dying 1 and preparatory grief of dying 215 social death 30–31, 236 anticonvulsant drugs in pain management 200 antidepressant drugs in pain management 200 An Unquiet Mind (Jamison) 273 anxiety about death 31, 90, 94 thanatophobia in 252–253 apnea in imminent death 244 Apocalypse, horsemen of 142 apparition or ghost 123–124, 135, 184 appetite changes 42, 244 artificial hydration and nutrition in 32–33 cachexia 53 and choice to stop eating 68–69, 134–135, 244 and failure to thrive 113 marijuana therapy 217–218 Arlington National Cemetery 31–32, 175 Tomb of the Unknowns 32, 253 arrangements, final. See final arrangements artificial hydration and nutrition 32–33, 273–274 artificial insemination and posthumous reproduction 212–213 art therapy 33–34 ashes 34–35. See also cremains Asian Americans/Pacific Islanders 35–36, 87 infant death 149 leading causes of death 35–36 maternal mortality 171, 172 asphyxia autoerotic 37 in hanging 134
Index 347 assisted living centers 192 assisted reproduction, posthumous 212–213 assisted suicide 36 and abandonment of the dying 1 bioethics 41 measures hastening death 134–135 and mercy killing 177 and midwife in dying process 178 physician-assisted 210. See also physician-assisted suicide and terminal sedation 252 Association for Death Education and Counseling 36–37, 252 Association for Gravestone Studies 37, 127, 243 asystole 37 Atli, Jutla 26 Auden, W. H. 212 Austin, Bonnie J. 115 autobiographical accounts of dying experience 224–225 autoerotic deaths 37 autopsy 37–38, 213–214 body snatching or grave-robbing for 44, 126 forensic pathology 116 Hindu beliefs 138 Islam beliefs 38, 152, 213 Jewish beliefs 38, 156, 213 psychological 108 Aziz, Ashraf 53
B Bachelor, Philip 267 Back, Tony 124, 249 Bacon, Jane M. 236 bad death 39 Ballard, James O. 211 bargaining stage of dying 39, 237
Barmakian, Joseph T. 261 Barnard, Christiaan 109 Barrett, Ronald K. 14, 15, 17 Bartholomew, Anita 188 Beccaria, Cesare 56 beetle, deathwatch 94 Believers and Beliefs (White) 206 bell ringing announcement of death 30, 93 and saved by the bell 231–232 beneficiary 39 bequest 39, 40 contingent 39 and estate planning 108 life insurance 39, 165 will 39, 272 benefits and burdens 39–40 Bentley, Rosalind 271 bequest 40 beneficiary 39, 40 body donation in 40, 43–44 estate planning 108 will 272 bereavement 40, 128 childhood 66 clothing 182, 265–266 cultural differences 86–87 and depression 97 employer leave policies 40, 106 grief counseling and therapy 128–129 and inhibited grief 151 loneliness in 168 parent death 77, 78 partner/spouse death 78, 79 pet companions in 209 pet death 79 Bering, Jesse 17 Bernat, J. L. 32 bier 40, 60 Billings, J. Andrew 199 bioethics 41, 108 biological death 41, 236
birth, postmortem 71 Black Death 41–42, 228 body deterioration as death approaches 42–43, 244–245 body donation 43–44, 53–54 and anatomical gifts 27 bequest 40, 43–44 and brokering body parts 46 and cremation 44, 54 and memorial service 175 body snatching 44, 126 Bonanno, George 130–131, 255 bone box 198 Bossarte, Raeann 81, 250 Bowlby, John 44, 237–238 Boyce, Nell 226 Braddock, Clarence H., III 274 Bradley, Elizabeth H. 13, 219, 220 Bradsher, Julia A. 271 brain death 44–45, 85–86, 89 high brain death 137 Jewish beliefs 156 neocortical 190 whole brain death 271 Branson, Roy 5 breast cancer death rates 16, 25, 36 breast implants and suicide risk 242 breathing patterns 42, 45–46, 94, 244 apnea 244 Cheyne-Stokes respirations 65, 244 death rattle 42, 94, 244 dyspnea 102 and ventilator use 263–264, 273–274 Breitbart, W. 273 brokering body parts 46 Brooks, Charles 111 Bruchac, Joe 51 Bruns, Daniel 90 Bryne, Beverly 96
348 The Encyclopedia of Death and Dying bubonic plague and Black Death 41–42 Buckwalter, Kathleen 76 Buddhist beliefs 46–48 abortion 2 afterlife 17 autopsy 38 flowers at funerals 116 reincarnation 46, 224 burdens and benefits 39–40 Burgess, Teresa 247 burial 48–52 African-American beliefs 15, 49 Alaska Native beliefs 20–21 alternative container 22 alternative funeral services 22–23 American Indian customs 26–27, 51, 232, 257 Buddhist beliefs 47 casket or coffin 58–59, 70–71 catacomb 59–60 cemetery 48–49, 51, 52, 62–64 Christian beliefs 60, 69, 171, 217 clothing 50, 101, 125 costs 63, 81, 82, 98 cremains 34–35, 48, 49 at sea 49–50, 83 and transportation to burial place 52, 84 decomposition in 50–51, 58, 95 depth 125 direct 98 direction of body 49 entombment ritual 107 and funeral. See funeral grave 48–49, 50–52, 125 gravestone in 49 Greek beliefs, ancient 127 green 23, 50, 128, 140, 235 Hawaiian Native customs 50, 135
home 52, 140, 235 and inhumation (interment) 151 Islam beliefs 49, 153, 184 Jewish beliefs 59, 125, 156 of live persons and saved by the bell 231–232 and wake vigil 269–270 mausoleum 172 methods 50–51 with personal items African-American customs 15 Alaska Native customs 20, 21 American Indian customs 27 Egyptian customs, ancient 103–104 Greek customs, ancient 127 Taoist beliefs 248 pet 79 places 51–52, 62–64 and transporting human remains 52, 254 potter’s field 214 and reburial 223 rites and rituals 52 Roman, ancient 228 scaffold 232 sea burial 23, 48, 49–50, 83 sepulcher 234 shroud 235 Taoist beliefs 248 tree burial 48, 257 veterans benefits. See veterans burial benefits wake prior to 269–270 burial mounds 51 burial-transit permit 52 Burke, William 44 burnout in caregiver stress 57
Burrell, Bernard 269 Burton, Robert 16 Bushnell, David I., Jr. 232 Byock, Ira 199, 201, 204, 210, 216, 220 Byrne, Beverly 9, 10
C cachexia 53 cadaver 53–54. See also corpse cadaver dogs 54 Callahan, Maggie 189 calling hours 267 Canadian Hospice Palliative Care Association 54 cancer death rates 162, 164 African-American 15, 16 American Indians/Alaska Natives 25, 26 Asian American/Pacific Islander 35, 36 Hispanic American/Latino 140 cannibalism 54–55 capacity 55 and competency 55, 73 and guardianship 131 and health care proxy 101, 136 and informed consent 150 and medical power of attorney 173 and surrogate decision making 243 and total dependence 253 capital punishment 55–56, 93, 94 death row 94 execution methods 110–111 gas chamber 111, 123 hanging 110–111, 134 cardiopulmonary resuscitation 226 and do-not-resuscitate orders 12, 100, 147, 226
Index 349 caregiver 57 burnout and stress 57, 105–106, 274–275 financing end-of-life care 115, 275 in home health care 141 pastoral 206–207 respite care services 226 talking about death with dying 247 working 105–106, 274–275 bereavement leave policies 40, 106 Caring for the Dead: Your Final Act of Love (Carlson) 58, 121 Carlson, Lisa 58, 121, 125, 140 Casarett, David 97 casket 58–59, 70–71 air tray for shipping 19, 254 alternative container 22, 58 on bier 40, 60 burial at sea 49 cost 58, 59, 118 cremation 22, 58–59, 84 and decomposition 58, 95 Funeral Rule on 22, 58, 59 open in visitation 267 pallbearers carrying 202–203 pall covering 171, 202, 203 quilt covering 220 special-interest or personalized 59, 118 casket standard 60 catacombs 59–60, 69, 228 catafalque 60 catastrophic death 60 Catholic beliefs 60–61 afterlife 17 All Saints’ Day 22 All Souls’ Day 22 artificial hydration and nutrition 33 burials 60, 171 at sea 49–50 capital punishment 56
cremation 61, 83 funerals 60–61, 69, 171 last rites 61, 162 pall 202 purgatory 218 cause of death 61–62, 89 accidental 6–7 autopsy results 37 children and infants 65, 148, 149 neonatal 190 sudden infant death syndrome 239, 240 classification system 61–62, 69–70 coroner determination 81 death certificate information 61–62, 70, 91–92 homicide 141–142 investigation of 93 leading causes 162–163. See also leading causes of death and life expectancy trends 164–165 and livor mortis 168 in military service 179 natural disasters 187–188 sedentary lifestyle 234 suicide 240–242 violent 266 celebration days 22, 62 anniversary reaction 29–30, 62 Day of the Dead 22, 89, 133 feast of the dead 113 and grave visits 267 Halloween 22, 133 holidays of the dead 133 cemeteries 62–64 burial in 48–49, 51, 52, 62–64 veterans’ benefits 63–64, 185–186, 264–265 catacomb 59–60 community restrictions 120 and death care industry 91
fees and charges 63, 64 fraudulent 117 perpetual care 63, 107, 208 funeral procession to 81 grave 125 temporary use of 64 visits to 267 gravestones 126–127 and graveyard 127 green or environmentallyfriendly 128 land shortage 64 national 63–64, 179, 185–186, 264 Arlington National Cemetery 31–32, 175, 253 niche space 190 state regulations 62, 63 worldwide database 64 cerebrovascular disease 25, 140, 162, 164 channeling for communication with the dead 72–73 charitable gifting 64–65 donations in lieu of flowers 116 Chen, J. H. 123 Cheyne-Stokes respirations 65, 244 children anger in 29 attending funeral 10, 66 coffin birth 71 concept of death 65–67 in pet death 79–80 questions and curiosity 67, 68 in sibling death 80 death of accidental 6, 65 as adult 76, 99, 132 Compassionate Friends support group 73, 76, 132 coping with 75–76
350 The Encyclopedia of Death and Dying children (continued) as infant 148–149. See also infant death leading causes 65 natal 185 neonatal 185, 190 school-associated 233 suicide 233, 241, 242 grieving and coping with death 65–67 in adolescence 8–11, 67 art therapy in 34 delayed grief 96 denial stage 96 in parent death 8–9, 11, 77–78 in pet death 79–80 in sibling death 9, 65, 66, 80 guilt feelings 132 nondisclosure of terminal status 191 pain management 201–202 palliative care 205 in persistent vegetative state 209 respite care services 226 Chinese culture, ancestor worship in 27, 28 choice to stop eating and drinking 68–69, 244 hastening death 134–135 Christ, Grace H. 8, 11 Christian beliefs 69 afterlife 17, 69 angels 28–29 autopsy 38 bad death 39 catacomb burial 59, 69 Catholic. See Catholic beliefs cremation 83 heaven and hell 136, 137 mourning rituals 182 pall 202, 203 Protestant 83, 216–217 Chrystal-Frances, Eileen 201, 203
church bell tolling for announcement of death 30, 93 Church of Jesus Christ of Latter-day Saints paradise beliefs 206 City of Hope Pain/Palliative Care Resource Center 205 Civil War deaths 175, 185, 270 classification of death 61–62, 69–70 Cleary-Guida, Maria B. 201 Clements, P. T. 34, 182 clinical death 41, 70 and near death experiences 188 closure 70 clothing burial 50, 101, 125 mourning 182, 265–266 Cochella, Susan E. W. 191 Coconut Grove nightclub fire 130 codeine 194, 195 coemeterium 59 coffin 70–71. See also casket coffin birth 71 coins placed on eyes of dead 71 Collins, Lois M. 191 columbarium 63, 71, 83, 190 Arlington National Cemetery 32 Columbine Massacre 8 coma 71 and persistent vegetative state 208 comfort care 72 hospice 142 palliative 72, 203 communication with the dead 72–73 after-death communication experiences 16 and psychic mediums 72–73, 218 in séance 233–234
Compassionate Friends, Inc. 73 in child’s death 73, 76 of adult child 76, 99, 132 in guilt feelings 132 in sibling’s death 73, 80 Compassion in Dying Federation 73, 196 competency 73 and advance directives 12–13, 73 and capacity 55, 73 in dementia 96 and health care proxy 101, 136 complicated grief reactions 29, 73–74, 96, 97 concentration camps as death camps 91 condolence letters 74–75 virtual sympathy notes 266–267 Confucianism 75 confusion in imminent death 42, 244 Conklin, Beth A. 54–55 Conlon, Michael 56 consent, informed 150 containers casket alternative 22, 58 cremation 22, 58–59, 84 ossuary 198 for transportation of human remains 254 urn 83, 152, 172, 260–261 convalescent home 191 convulsions in imminent death 42 Cook, Alicia Skinner 29, 30, 239 coping 75–80 in adolescence 9–11 with child’s death 75–76 with coworker’s death 76–77, 277 with friend’s death 77 grief counseling and therapy 128–129 with parent’s death 77–78
Index 351 with partner/spouse death 78–79 with pet’s death 79–80 with sibling’s death 80 coroners 81, 93, 173 corpse 53–54, 81 body snatching and grave robbing 44, 126 brokered body parts 46 detection by dog 54 dressing of 50, 101, 125 inhumation (interment) 151 medical school use 37–38, 43–44, 53–54, 126 mummification 183 and necrophagia 54–55 and necrophilia 189 and necrophobia 189–190 corpse flower 81 cortege 81 corticosteroids in pain management 200 costs of dying 81–82, 186 casket 58, 59, 118 cemetery fees and charges 63, 64, 117 perpetual care 63, 107, 208 direct burial 98 direct cremation 98 embalming 104–105 end-of-life care 81–82, 115, 172–173, 174, 275 funeral services 81–82, 118, 186 fraudulent practices 117–118, 180 pre-need planning 117, 120, 215 grave liner or vault 263 home burial 140 hospice care 82, 142, 143–145 long-term care 168–169 Medicaid coverage 172–173 Medicare coverage 174 mummification 183
organ and tissue donation 197 postmortem examination 213, 214 veteran burial benefits 63–64, 179, 185–186, 264 visitation 267 counseling 82–83128–129. See also grief counseling and therapy Cowles, K. V. 182 coworker death, coping with 76–77, 277 Crawley, LaVera M. 14, 86, 150 cremains 34–35, 83, 84 burial 34–35, 48, 49 at sea 49–50, 83 and transportation to burial place 52, 84 columbarium inurnment 71, 83 Arlington National Cemetery 32 diamonds created from 97–98 scattering 34–35, 61, 83 transport of 52, 84, 254 in urn 83, 152, 260–261 cremation 83–85 after body donation 44, 54 and afterlife beliefs 18 air tray in 19 Alaska Native beliefs 20, 21 alternative containers in 22, 58 American Indian customs 26 Buddhist beliefs 47–48 burial in 34–35, 48, 49 at sea 49–50 and transportation to burial place 52, 84 casket in 22, 58–59, 84 Catholic beliefs 61, 83 and columbarium inurnment 71 Arlington National Cemetery 32
diamonds created from remains 97–98 direct 98 Hindu customs 121, 138 historical 83, 127, 151, 228 Islam beliefs 153 Jewish beliefs 156 memorial service 176 Protestant beliefs 217 in retort chamber 84, 226 scandals 85 statistical information 84, 85 transport of cremains 52, 84, 254 crematory 85 fraud and scandals 85 crib death (sudden infant death syndrome) 148, 149, 164, 173, 239–240 criteria of death 45, 85–86, 89 cryonics 86 crypt 86 Cullen, Lisa Takeuchi 118 culture 86–87 and health care team-patient interactions 87, 150, 152 and mourning rituals 182 and wailing custom at funerals 269 Cummings, Mary Ellen 220 Cunningham, Linda 9, 10, 96, 131, 132, 255 cyanosis 87
D Dahmer, Jeffrey 55 Daoism (Taoism) 248 Day of the Dead 22, 89, 133 death 89 death agonies 90 death anxiety 31, 90, 94 and thanatophobia 252–253 deathbed 90. See also imminent death deathbed statement 90, 245 deathbed visions 90–91
352 The Encyclopedia of Death and Dying death benefits 91, 165 accelerated 4–5 Social Security 236 viatical settlement 265 death camp 91 death care industry 91 fraud in 85, 117–118, 180 death certificate 91–92 cause of death information 61–62, 70, 91–92 data collected from 35, 92 death chill (algor mortis) 21–22 death education 92 Association for Death Education and Counseling 36–37, 252 Education for Physicians on End-of-Life Care 103 hospice information 143, 145 on last hours of living 162 thanatology 252 death investigation 93 algor mortis 21–22 autopsy 37–38. See also autopsy coroner role 81, 93, 173 forensic anthropology 116 forensic pathology 116 forensic toxicology 117 inquest 151 livor mortis 168 medical examiner role 81, 93, 173 postmortem examination 213–214 rigor mortis 227 sudden death 239 of infant 173, 239 death knell 93 death mask 93 death penalty 55–56, 93. See also capital punishment death rate 93–94 fetal 114 infant 148–149, 164 and life expectancy trends 164–165
maternal 171–172 in military service 178–179 mortality statistics 181 death rattle 42, 94, 244 death-related fears 94. See also fears-related to death death row 94 death sentence. See capital punishment deathwatch 94 deathwatch beetle 94 death wish 94–95 death with dignity 95. See also dignity, death with decision making on end-of-life care 107 and advance care planning 11–12, 13, 107, 115 ethical issues 108 in Five Wishes at Work 115 guardianship 131 health care proxy 136 Hispanic American and Latino beliefs 139 life-prolonging 165–166. See also life-prolonging treatment decisions living wills 167–168 patient-centered model 207 Patient Self-Determination Act 207–208 Quinlan case 221 Schiavo case 232–233 SUPPORT study 243 surrogate role 243 decomposition 95 in burial 50–51, 58, 95 cadaver dog detection of odor 54 in casket 58, 95 in embalming 95, 104 in grave liner 95, 125, 263 and postmortem birth 71 Decoration Day 175 dehydration benefits 32–33, 95–96 delayed grief 9, 96
dementia 96 Alzheimer’s 96, 169, 192 denial 96–97 stage of dying 96, 237 stage of grief 96 Depaola, S. J. 90 depression 97, 237 and bargaining stage of dying 39 death wish in 94–95 and grief 97, 130, 131 complicated 74 preparatory 97, 215 psychotherapy in 218 and suicide 97, 241 deterioration as death approaches 42–43, 244–245 diabetes mellitus 162 American Indian/Alaska Native 25, 26 Asian American/Pacific Islander 35, 36 Hispanic American/Latino 140 diamonds from cremated remains 97–98 Dickinson, Emily 212 dignity Aging with Dignity organization 115 death with 95 and do-not-resuscitate orders 100 Oregon Death with Dignity Act 195–196 and right-to-die 226–227 dilation and evacuation abortion procedure 3 direct burial 98 direct cremation 98 dirge 98 disaster death 98–99 catastrophic 60 natural disasters 98, 187–188 traumatic 254–255 discounted grief 76, 99
Index 353 dismemberment and accidental death insurance 7 disorganization and despair stage of grief 131, 238 disorientation in imminent death 42 dissociation in near death experiences 188 DNA retrieval and storage 99 Doblin, Rick 217 Dobratz, Marjorie D. 225 Doctor, Ronald M. 28, 48, 124, 130, 181, 189, 231 doctor-assisted suicide. See physician-assisted suicide doctor-patient interactions. See physician-patient interactions dogs for cadaver detection 54 in heaven 136 as pets, coping with death of 79–80 Doka, Kenneth J. 194 donation and charitable gifts 64–65, 116 organ and tissue. See organ and tissue donation sperm, in posthumous reproduction 212–213 whole body. See body donation Donne, John 212 donor quilts 99–100 do not attempt resuscitation orders 100 do not intubate orders 100 do not resuscitate orders 12, 100, 147, 226 Dover Air Force Base 100 dowry death 100–101 dowsing for location of buried bodies 270–271 dressing burial clothes 50, 101, 125 mourning clothes 182, 265–266
drowning accidents 6 durable power of attorney 101. See also health care proxy Dworkin, Daniel S. 29, 30, 239 dying declaration (deathbed statement) 90 dying process 101–102 Buddhist beliefs 47–48 deterioration in 42–43, 244–245 duration and shape 101 midwife or guide in 178 stages of. See stages of dying trajectory 101–102 Dying Well (Byock) 199, 210, 216 dyspnea 102
E Eaton, Hubert 62 Eberlein, Tamara 234 Eden 136, 206 Eden Alternative 209 Edison, Thomas 72 Education for Physicians on End-of-Life Care 103 Egypt, ancient 103–104 afterlife beliefs 17, 18, 103, 104 grave robbing 126 mummification process 103, 183 professional mourners 181 pyramids 218 sarcophagus use 231 elderly pain management 201 suicide rate 241 electrocution as execution method 111 elegy 104 Ellis, William 135 Emanuel, L. L. 162 embalming 104–105 Alaska Native beliefs 20 decomposition and decay in 95, 104
Egyptian beliefs, ancient 103, 104 Funeral Rule regulations 104–105 Hindu beliefs 138 Islam beliefs 105, 152 Jewish beliefs 105, 156 Protestant beliefs 217 and transporting human remains 105, 254 and visitation 267 Emery, Steve 45 employees. See workplace end-of-life care 106–107, 251 advance directives 12–13. See also advance directives comfort care 72 decisions on 107. See also decision making on end-oflife care employees providing 105–106, 274–275 ethical issues 108 euthanasia issues 109–110 financial issues 81–82, 115, 172–173, 174, 274–275 futile interventions 173 health care team-patient interactions 151–152 hospice 142–145. See also hospice Last Acts coalition on 106, 161–162 life-prolonging 165–166. See also life-prolonging treatment decisions living wills 167–168. See also living wills music therapy 183–184 nursing home 191 pain management 199–202. See also pain management palliative 203–205. See also palliative care patient-centered 207 Patient Self-Determination Act 207–208
354 The Encyclopedia of Death and Dying end-of-life care (continued) planning for 11–12, 13, 107, 115 in prison 125, 147–148 promoting excellence in 216 and quality of dying and death 219 research initiatives 151, 225–226 SUPPORT study 146, 243, 250 technological advances 249–250 withholding or withdrawal of treatment 273–274. See also withholding or withdrawal of treatment End-of-Life Choices (Hemlock Society) 109, 137 endowment of cemeteries for perpetual care 63, 107, 208 end-stage condition 107 entombment 107 mausoleum 172 epitaph 108, 126, 127 equivocal death 108 Erlen, Judith A. 219, 220 Eskimos 18, 20 Essinger, Douglas 110 estate planning 108 beneficiary 39, 108 bequest 40, 108 charitable gifting 64–65 inheritance 150–151 living trusts 166–167 taxes 108, 249 trust funds 257 will 272 estate settlement executor role 111–112 family heirlooms 136–137 final details 114 inheritance 150–151 probate process 39, 114, 166–167, 216, 272 records needed 92, 114, 223–224
ethical issues 108 bioethics 41 end of life research 225–226 futile interventions 173 life-prolonging decisions 166 nondisclosure 191 physician-assisted suicide 210 posthumous reproduction 212–213 right-to-die 221, 226–227 technological advances 249–250 terminal sedation 252 withholding or withdrawal of treatment 274 eulogy 108, 217 euphemisms for death 109 children misunderstanding 67, 79–80 euthanasia 109–110 abandonment of the dying 1 and assisted suicide 36, 109–110, 210 bioethics 41 Islam beliefs 152 Jewish beliefs 156 and life support systems 166 and measures hastening death 134–135 and mercy killing 177 and Oregon Death with Dignity Act 196 Evans, Glen 92, 109, 132, 177 Everything You Ever Wanted to Know about Heaven (Kreeft) 124 execution 110–111 and capital punishment 55–56 and death penalty 93 and death row 94 gas chamber 111, 123 hanging 110–111, 134 executor 111–112
F failure to thrive 113 fall-related deaths 6, 7 Farberow, Norman L. 92, 109, 132, 177 fears-related to death 94 anxiety in 90, 94 and ghosts 124 necrophobia 189–190 thanatophobia 252–253 feast of the dead 113 Feifel, Herman 252 fentanyl 195 Ferszt, Ginette G. 34 fetal death 113–114, 185, 238–239 abortion 1–4 miscarriage 179 selective reduction of multifetal pregnancy 234 Field, David 224 film representations of death and dying 225 final arrangements 32 estate planning 108 funeral planning 120 planning books 211 Totten trust 253–254 final details in estate settlement 114 Final Exit (Humphry) 137 Final Gifts: Understanding the Special Awareness Needs and Communications of the Dying (Callahan and Kelly) 189 financial issues 115. See also costs of dying firing squad execution method 111 Five Wishes at Work 115 flag in veteran burial 179, 186, 202, 264–265 flat line (asystole) 37 Fleisher, Lisa K. 115 flowers 115–116 corpse flower 81
Index 355 food and fluids. See nutrition and hydration forensic anthropology 116 forensic pathology 116 forensic toxicology 117 Foundation of Thanatology 117 Franklin, Benjamin 56 Frates, J. 139, 197 fraud in funeral industry 85, 117–118, 180 Friedman, Stacia 156, 157 friend, coping with death of 77 Friendshifts: The Power of Friendship and How It Shapes Our Lives (Yager) 77 Frost, Robert 212 Fullard-Leo, Betty 135 functional death 118 funeral 118–121 African-American 15 Alaska Native beliefs 20–21, 214 alternative 22–23, 118–119 green or environmentallyfriendly 23, 50, 128, 140, 235 theme 253 American Indian 26–27 bereavement leave 40, 106 Buddhist rituals 47–48 children attending 10, 66 Christian beliefs 69 Catholic 60–61, 69, 171 Protestant 216–217 closure in 70 cortege procession 81 costs 81–82, 118, 186 casket 58, 59, 118 fraudulent 117–118, 180 home burial 140 pre-need planning 117, 120, 215 in direct or immediate burial 98 federal regulations 121
final arrangements 32 flowers and floral arrangements 115–116 green burials 23, 50, 128, 140, 235 Hawaiian Native customs 135 Hindu rituals 121, 137–138 hired or professional mourners 181 Islam beliefs 153 Jewish beliefs 156 memorial society assistance 120, 176 military honors 179, 248, 258 music during 155 organ and tissue donor 197–198 planning and prearrangement 120, 214–215 for alternative service 22–23 fraudulent practices 117, 118 planning books 211 Totten trust 253–254 state funeral ceremony 238 theme 253 wailing customs 269 wake customs 269–270 webcasting of 271 funeral board 119 funeral cards (mourning cards) 181–182 Funeral Consumers Alliance 119, 176, 211, 254, 267 funeral director 119, 181, 186, 259 funeral home 119–120 casket sales 58 and death care industry 91 fraudulent practices 117–118 visitation or calling hours 267 funeral industry 91 fraud in 85, 117–118, 180
Funeral Mass (Mass of Christian Burial) 60, 171 funeral parlor 119–120. See also funeral home funeral pyre 120–121, 138 Funeral Rule 121, 162 alternative containers 22 caskets 22, 58, 59 cemetery regulations 63 embalming 104–105 pre-need arrangements 117 Funeral Service Consumer Assistance Program 121 funerary mounds (burial mounds) 51 futility, medical 173
G gabapentin in neuropathic pain 200 Gallagher, Romayne 247 gallows humor 146 gangrene and local death 168 Garcia Bohrer, G. 139, 197 Garlinghouse, Thomas S. 51 Garnier, Jeanne 142 gas chamber as execution method 111, 123 Gatrad, A. R. 184 gender differences in grief 123, 176–177 genocide 123 ghost 123–124 hauntings 135 mythology 184 ghost sickness 124 Gilbert, Kathleen R. 1, 31, 123 Gilhooley, L. M. 236 Gilmore, Gary 56 Gittings, Clare 182, 259 Golden, Thomas R. 178 good death 124–125, 219 Good Life, Good Death: A Doctor’s Case for Euthanasia and Suicide (Barnard) 109
356 The Encyclopedia of Death and Dying Goodman, M. 75 Goodnow, Cecelia 150 GRACE Project advance care plan document 11, 216 Grace Project in prisons 125, 148 grave 125 burial 48–49, 50–52, 125 entombment ritual 107 markers. See grave markers temporary use 64 visits to 267 graveclothes 50, 101, 125 grave liner 125 cemetery regulations 63 decomposition in 95, 125, 263 vault 125, 263 grave markers 126 gravestones. See gravestones Islam beliefs 153 tombstone 126, 253 Veterans Administration 63, 179, 186, 264 GraveNet Project 244 grave robbing 44, 126 gravestones 49, 126–127, 253 Association for Gravestone Studies 37, 127 epitaph 108, 126, 127 footstone 136 headstone 136 rubbing 127 symbolism 127, 243–244 tombstone 253 Veterans Administration 63, 179, 186, 264 graveyard 127. See also cemeteries graveyard shift 232 Gray, V. Ruth 42 Greally, Helen 78, 79 Greece, ancient 127–128 abortion 2 cremation 83, 127 Hades 127, 133, 228
music therapy for dying 183 River Styx 71, 127, 133, 228 sarcophagus use 231 green burials 23, 50, 128 and home burial 140 shroud 128, 235 Greyson, B. 188 grief 128–131 abortion 3–4 acute 4, 7–8, 128 adolescent 8–11, 67 anniversary reactions 29–30 anticipatory. See anticipatory grief art therapy 33–34 and bereavement 40, 128 cannibalism ritual in 54–55 childhood 65–67. See also Children, grieving and coping with death complicated 29, 73–74, 96, 97 delayed 9, 96 and depression 97, 130, 131 in complicated grief 74 in preparatory grief 97, 215 discounted 76, 99 gender differences 123, 176–177 grave visits in 267 and guilt feelings 131–132 hallucinations in 130, 133 humor in 146 inhibited 151 and mourning 181 physical symptoms 130 preparatory 97, 215 stages 237–238. See also stages of grief traumatic 254, 255–256 workplace 76–77, 277 grief counseling and therapy 82–83, 128–129 for adolescents 9–11 Association for Death Education and Counseling 36–37
in celebration and anniversary days 62 in complicated grief reactions 74 and grief industry 129–130 in parent’s death 77, 78 in traumatic grief 255, 256 grief industry 129–130 grief reaction 130–131 grieving process 131. See also stages of grief Grim Reaper 28, 131, 209, 244 Grinspoon, Lester 217 Growth House, Inc. 218, 250, 252 guardianship 131 Guggenheim, Bill and Judy 16 guilt feelings 131–132, 243 in suicide 132 in traumatic death 243, 255 guns fired at funerals 179, 248, 258 firing squad execution method 111 and suicide 241 Guthrie, Patricia 44
H Hades 127, 133 and River Styx 127, 133, 228 Hadith 19 Hallenbeck, James 97, 215 Halloween 22, 133 Hallowmass (All Saints’ Day) 22 hallucinations 133 drugs causing 217 grief reaction 130, 133 hauntings 135 near death 42, 90–91, 133, 188 Halo Nurses 133–134 Halstead, M. T. 183 Hampton, Roy F. 79
Index 357 hanging 134 execution method 110–111, 134 suicide method 134 hara-kiri 134 Hare, William 44 Harris, T. B. 113 Harrold, Joan 33, 68, 69 hastening death 134–135 Jewish beliefs 156 refusal of hydration and nutrition 68–69, 134–135 terminal sedation 252 wish to hasten death 273 Hatcher, Evelyn Payne 34 hauntings 135 Hawaiian Natives 35, 36, 135 burial customs 50, 135 grave protection and repatriation 135, 187 infant death 149 leading causes of death 36 headstone 136. See also gravestones Health Care Coverage Expansion and Quality Improvement Act of 2003 163–164 health care proxy 136 and advance directives 12, 13 African Americans with 14 Five Wishes at Work program 115 and life support systems 166 and living wills 136, 167 and power of attorney 214 durable 101 medical 136, 173, 214 health care team-patient interactions 151–152. See also physician-patient interactions health insurance 115, 171, 172, 173–175. See also insurance health maintenance organizations 171 hearse 136
heart disease 162, 164 American Indian/Alaska Native 25, 26 Asian American/Pacific Islander 35, 36 Hispanic American/Latino 140 heaven 19, 136, 206 Heinen, Tom 72 heirlooms 136–137 hell 19, 137 Buddhist beliefs 46, 47 and Hades 133 Hell, Kyshah 266 Helping the Bereaved: Therapeutic Interventions for Children, Adolescents, and Adults (Cook and Dworkin) 239 Hemlock Society (End-of-Life Choices) 109, 137 hereafter 137. See also afterlife Hermanson, Sharon 91 heroic measures 137 high brain death 137 Hill, Malinda Ann 34 Hindu beliefs 137–138 afterlife 17, 137 funeral rituals and mourning 121, 137–138 reincarnation 137, 224 Hippocratic Oath 110 Hispanic Americans and Latinos 87, 138–140 homicide victims 140, 142 infant death 149 maternal mortality 171, 172 organ and tissue donation 197 place of death 210 workplace 276 holidays. See celebration days Holliday, R. 17–18 Holmes, Thomas 78 home burial at 52, 140, 235 health care in 141
as place of death 210 telehospice services in 250–251 homicide 141–142 African American 15, 142 American Indians/Alaska Natives 25, 142 Hispanic American/Latino 140, 142 at school 233 and violent death 266 workplace 275 Horn, Miriam 91 horsemen of the Apocalypse 142 hospice 142–145 African Americans in 14 comfort care 142 and cost of dying 82, 142, 143–145 and end-of-life care 106, 107 Hispanic American and Latino beliefs 139 home health care compared 141 hospital services 146 insurance coverage 142, 143–145, 172 legislation on 163, 174 Medicaid 143, 144, 145, 172, 173 Medicare benefits 142, 143–144, 145, 163, 174 Kübler-Ross role 159 Last Acts report findings 144, 161 and life expectancy 107, 142, 144, 145 National Hospice and Palliative Care Organization 186 and nearing death awareness 189 palliative care 203, 204, 205 pet companions in 209
358 The Encyclopedia of Death and Dying hospice (continued) prison program 147–148 and quality of life 220 respite care services 226 rural programs 163, 174 service providers and organizations 143 telehospice 250–251 Veterans Administration initiative 263 will written in 272 hospital care 145–146 insurance coverage 145, 146, 174 Last Acts report findings 146, 161 Houdini, Harry 72 Houlbrooke, Ralph 243 Houran, J. 91 Howard, Anita 51 Howard, John D. 93 How We Die: Reflections on Life’s Final Chapter (Nuland) 70, 90 Hsu, Francis L. K. 28 Huffman, Grace Brooke 74 Hughes, Collin 184 humor 146 Humphry, Derek 109, 137 hydration and nutrition 32–33. See also nutrition and hydration
I Idziak, Janine Marie 32 immediate or direct burial 98 imminent death 90–91, 147 appetite and thirst changes 42, 244 breathing changes 42, 45–46, 94, 244 deathbed 90–91 deathwatch 94 deterioration 42–43, 244–245 hallucinations 42, 90–91, 133, 188
last hours of living 162 near death experiences 91, 188 nearing death awareness 189 statement or declaration in 90, 245 symptoms 42–43, 244–245 incarceration 147–148. See also prison income tax. See taxes incontinence in imminent death 42, 244 independent living centers 192 infant death 148–149 American Indian/Alaska Native 20, 25, 149, 190, 240 and life expectancy trends 164 natal 185 neonatal 185, 190 sudden infant death syndrome 148, 149, 164, 173, 239–240 informed consent 150 inheritance 150–151 family heirlooms 136–137 taxes 151, 249 wills 272 inhibited grief 151 inhumation 151 American Indian customs 26 initiatives improving end-of-life care 151 injection as execution method 111 inquest 151 insemination, artificial, and posthumous reproduction 212–213 insurance accidental death and dismemberment 7 beneficiary 39, 165 catastrophic death 60
company notification of death 114, 165 death benefits 91, 165 accelerated 4–5 Social Security 236 viatical settlement 265 end-of-life care benefits 115, 174 home health care benefits 141 hospice benefits 142, 143–145, 172 legislation on 163, 174 Medicaid 143, 144, 145, 172, 173 Medicare 142, 143–144, 145, 163, 174 hospital care benefits 145, 146, 174 legislation expanding coverage 163–164, 174 long-term care 168–169, 172–173 managed care 171 Medicaid 172–173. See also Medicaid Medicare 173–175. See also Medicare Medigap 175 pain management coverage 201 palliative care benefits 173, 204 prescription drug benefits 174, 175 respite care benefits 144, 226 viatical settlement 265 Insurance Information Institute 39 interaction with health care team 151–152. See also physician-patient interactions interment 151 American Indian customs 26 International Classification of Diseases 61–62, 69–70
Index 359 Internet funeral broadcast 271 obituary notice 193 virtual sympathy notes 266–267 inurnment 152 Islam, beliefs 152–153, 184 afterlife 19, 152, 206 angels 28, 29 autopsy 38, 152, 213 burial 49, 153, 184 embalming 105, 152 grave liner 125 paradise 152, 206
J Jablon, Robert 223 Jackson, John Zen 196, 197, 260 Jalland, Pat 266 Jamison, Kay Redfield 273 Jarrell, Randall 212 Jarvik, Elaine 191 jazz funerals 155 Jean’s Way (Humphry) 109 Jefferson, Thomas 51 Jind, L. 185 Jones, Constance 120–121 Judaism 155–157 afterlife 17, 18–19, 156 announcement of death 30 autopsy 38, 156, 213 burial 59, 125, 156 embalming 105, 156 grave liner 125 shiva 156–157, 235 Jupp, Peter C. 182, 259 Jurgenson, Friedrich 72
K Kahn, Ada P. 11, 17, 28, 48, 124, 130, 181, 189, 231 Kaltman, Stacey 255 Kandt, Victoria E. 10
Kaplan, J. 213 Kaufman, Marc 242 Kay, Andrea 277 Kayser-Jones, J. 219 Keister, Douglas 172 Kelly, Nellie 249 Kelly, Patricia 189 Kemmler, William 111 Kerstens, Elizabeth Kelley 181–182 Kessler, David 68, 87, 227, 247 Kevorkian, Jack 159 Kirksey, K. M. 37 Klein, Allen 146 Klein, Karen E. 257 Koop, David 126 Koop, Everett 2 Koran 19, 153 Kramer, Kenneth 96–97 Kreeft, Peter 124 Krout, R. E. 183 Kübler-Ross, Elisabeth 44, 159, 252 legacy 163 preparatory grief 215 stages of dying 5, 29, 39, 96, 97, 237 talking about death with dying 247 Kumari, Ranjana 101 Kutscher, Austin H. 117 Kuykendall, George 5
L labor-inducing abortion 3 LaGrand, Louis 16 Lahiri, Tripti 270 Lamers, William 118 Lange, R. 91 Last Acts organization 161–162 and Last Chapters organization 162 Partnership for Caring 161, 206 report findings 161
end-of-life care 106, 161 hospice care 144, 161 hospital care 146, 161 pain management 161, 199 place of death 210 working caregivers 274 and SUPPORT study 243 last hours of living 162. See also imminent death last rites 61, 162 Latino and Hispanic Americans 87, 138–139. See also Hispanic Americans and Latinos Laukhuf, Greg 237 laws 162, 163–164. See also legal issues leading causes of death 162–163 African American 15–16 American Indian/Alaska Native 24–26 Asian American/Pacific Islander 35–36 Hispanic American/Latino 140 and life expectancy trends 164–165 Leavitt, Lewis 67 legacy 163 heirlooms 136–137 inheritance 150–151 legal issues 162, 163–164 abortion 1 advance directives 11, 12–13, 163 alternative containers 22 artificial hydration and nutrition 32 assisted suicide 36 physician-assisted 195–196, 210 brain death 44–45 brokering body parts 46 burial-transit permit 52 capital punishment 55–56 cemetery regulations 62, 63 competency 55, 73
360 The Encyclopedia of Death and Dying legal issues (continued) cremation 83 criteria of death 44–45, 86 do-not-resuscitate orders 100 estate planning 108 euthanasia 110 fraud in funeral industry 117–118 Funeral Rule 121. See also Funeral Rule grave liner 125 health care proxy 136, 173 home burial 140 informed consent 150 inheritance 151 life support systems 166 living trusts 166–167 living will 167–168 Medicaid benefits 172–173 military funeral honors 179 Native American Grave Protection and Repatriation Act 135, 187, 223 next of kin 190 nondisclosure 191 opiates 195 Oregon Death with Dignity Act 195–196 organ and tissue donation 86, 197, 259–260 Patient Self-Determination Act of 1991 12–13, 207–208 posthumous reproduction 212–213 power of attorney 214 medical 173 prearrangement of funeral 215 probate 216 Quinlan case 221 right-to-die 221, 226–227, 232–233 Schiavo case 208, 232–233 surrogate decision making 243
terminal sedation 252 transporting human remains 254 trust funds 257 Uniform Anatomical Gift Act 86, 197, 259–260 will 272 withholding or withdrawal of treatment 274 wrongful death 277–278 Leichtentritt, Ronit D. 219, 2 73 Leimer, Christina 267 LeMoyne, Julius 83 Let Me Die Before I Wake (Humphry) 109 letters of condolence 74–75 virtual sympathy notes 266–267 Lewis, James R. 18 lie in state 164 life after death. See afterlife Life after Life (Moody) 188 life expectancy 164–165 and accelerated death benefits 4–5 African-American 16 American Indian/Alaska Native 26 Asian American/Pacific Islander 35 and hospice benefits 107, 142, 144, 145 in persistent vegetative state 209 technology affecting 250 and widowhood 271 life insurance 165 beneficiary 39, 165 catastrophic death 60 company notification of death 114, 165 death benefits 91, 165, 265 accelerated 4–5 term and permanent types 165
trust fund arrangement 257 viatical settlement 265 life-prolonging treatment decisions 107, 165–166 cost issues 82 and death with dignity 95 and do-not-resuscitate orders 100 futile interventions 173 heroic measures 137 living wills on 167–168 Lifespan Respite Care Act 163 life support systems 166, 249–250 artificial hydration and nutrition 32–33 in persistent vegetative state 166, 209 Quinlan case 221 and right-to-die 221, 226–227 Schiavo case 208, 232–233 ventilator 263–264, 273–274 withholding or withdrawal 273–274 Lin, Maya 175 Lin, Yutang 47 Lincoln, Abraham 104 living trusts 166–167 living wills 12, 167–168 advance directives 12, 167–168 African Americans with 14 competency issues 73 computerized registry 261 Five Wishes at Work program 115 and health care proxy 136, 167 imminent death treatment options 147 in unconscious state 259 livor mortis 168 local death in necrosis or gangrene 168
Index 361 Locsin, Rozzano C. 236 loneliness 168 long-term care 168–169 insurance coverage 168–169, 172–173 types of facilities 191–192 Lord, Janice Harris 80 Lovasik, Darlene 249 LSD 217 lunchtime abortion 3 Lynn, Joanne 33, 68, 69
M Machan, Eileen 133–134 Maillet, Julie O’Sullivan 259 managed care 171 postmortem examination in 213 man-made death 171 marijuana 217–218 markers for grave. See grave markers Marsalis, Ellis L., Jr. 155 Marshall, Victor W. 250 Marzo, Donna 243 Mass of Christian Burial (Funeral Mass) 60, 171 maternal mortality 171–172 Matsunami, Kodo 269 mausoleum 63, 172, 190 May, J. P. 147 McCabe, Melvina 24 McIlwain, Charlton 225 McKechnie, Heather 98 McMahon, Patrick 147 McNeil, Donald G., Jr. 134 The Meaning of Death (Feifel) 252 media representation of death and dying 224–225 Medicaid benefits 172–173 accelerated death benefits affecting 5 and costs of dying 81, 82 end-of-life care 115, 172
hospice care 143, 144, 145, 172, 173 hospital care 145 long-term care 168 medical care at end-of-life. See end-of-life care medical examiner 81, 93, 173 medical futility 173 medical intervention 173 medical power of attorney 136, 173, 214. See also health care proxy medical schools anatomical gifts to 27, 43–44, 53–54 autopsy studies 37–38 brokering body parts 46 cadaver use 43–44, 53–54, 126 and grave robbing 44, 126 and death education 92, 103. See also death education hospice information 143, 145 pain management courses 200–201 palliative care courses 204–205 Medicare benefits 172, 173–175 Advantage program 174 Choice plan 174–175 and costs of dying 81, 82 end-of-life care 115 home health care 141 hospice care 142, 143–144, 145, 174 legislation on 163, 174 hospital care 145, 174 long-term care 168 palliative care 204 prescription drug 174, 175 respite care 144, 226 supplemental insurance 175
Medicare Payment Restoration and Benefits Improvement Act of 2003 163 Medigap insurance 175 mediums for communication with the dead 72–73, 218, 233–234 Meisel, Alan 252 memento mori 243, 244 memorial 175 for coworker 77 for friend 77 gravestone 126–127 monument 180 for parent 78 quilts 220–221 memorial cards 181–182 Memorial Day 175 memorial service 175–176 for coworker 76 in direct burial 98 in direct cremation 98 and remembrance service 224 memorial society 120, 176 Funeral Consumers Alliance 119, 176, 211, 254, 267 prearrangement of funeral 215 memory care centers 192 men and grief 123, 176–177 menstrual aspiration abortion procedure 3 mercy killing 177 and assisted suicide 36, 210 and euthanasia 109–110 Mesrkhani, Violet Hovsepian 66 Michalopoulou, A. 182, 235 Michalopoulou, E. 182, 235 Middle Ages period in Europe 177–178 midwife or guide in dying process 178 mifepristone inducing abortion 2–3
362 The Encyclopedia of Death and Dying military deaths 178–179 burial expenses 63–64, 179, 264 burial flag 179, 186, 202, 264–265 Dover Air Force Base mortuary 100 funeral honors 179, 248, 258 memorial quilt 221 Tomb of the Unknowns 253 veterans burial benefits. See veterans burial benefits in war 175, 185, 270 Miller, Lisa 136 minimum or alternative container 22 minisuction abortion procedure 3 miscarriage 1, 113–114, 179, 185, 238–239 misoprostol inducing abortion 2 Mitchell, Bruce M. 26 Mitford, Jessica 50, 63, 116, 180, 181, 186 Mogielnicki, R. P. 32 molecular death 180 Montgomery, Christine 175 monument 180 epitaph 108, 126, 127 and grave markers 126, 180 and gravestones 126–127 and memorials 175, 180 symbolism on 127, 243–244 and tombstones 180, 253 Moody, Raymond 188 Moore, Rob 269 morbidity 180 morgue 180–181 moribund 181 Morin, Suzanne M. 10, 11 Mormon beliefs on paradise 206 morphine 194, 195, 199 mortality statistics 181 mortician 119, 181, 186, 259
mortuary 181 Dover Air Force Base 100 motor vehicle-related deaths 6–7, 25, 36 fetal 114 mounds, burial 51 mourners, hired or professional 181, 269 mourning 181–182 and bereavement 40 Buddhist beliefs 48 and cannibalism ritual 54–55 childhood 66 clothing 182, 265–266 in complicated grief reaction 74 grief therapy in 129 Jewish beliefs 156–157, 235 quilt customs 220–221 tasks of 129 and wailing customs 269 mourning cards 181–182 multifetal pregnancy reduction 234 mummification 20, 95, 103, 183 muscle spasms and death agonies 90 music dirge 98 jazz funeral 155 in pain management 202 Taps 248 therapy in dying 183–184 Muslim beliefs 152–153, 184. See also Islam, beliefs mythology 184
N natal loss 185 national cemeteries 63–64, 179, 185–186, 264 Arlington National Cemetery 31–32, 175, 253 National Family Caregivers Association 57
National Funeral Directors Association 186 National Guardianship Organization 131 National Hospice and Palliative Care Organization 143, 186 National Safe Kids Campaign 6 Native American Grave Protection and Repatriation Act 135, 187, 223 Native Americans 24–27, 87 afterlife beliefs 18 burial customs 26–27, 51, 232, 257 capital punishment beliefs 56 grave protection and repatriation 135, 187, 223 homicide victims 25, 142 infant death 149, 190, 240 maternal mortality 171 suicide rate 241 natural death 187 and death with dignity 95 and green burials 128 Natural Death Centre 128, 187 natural disaster deaths 98, 187–188 Navy burial at sea 49 near death experiences 91, 188 nearing death awareness 189 necrophagia 54–55 necrophilia 189 necrophobia 189–190 necrosis and local death 168 The Needs of the Dying (Kessler) 68, 87 Neimeyer, Robert A. 129 Nelson, Lynn Harry 41 neocortical death 190 neonatal death 185, 190 nerve blocks in pain management 199, 200 neuropathic pain 200, 201 New Orleans jazz funerals 155 mausoleum burial 172
Index 363 newspaper obituary notice 30, 193, 224 next of kin 190 death certificate copies for 92 niche 71, 172, 190 nirvana 136, 206 nondisclosure 191 Nossaman, Nicholas 31, 270 Nuland, Sherwin B. 70, 90 numbness and shock stage of grief 130, 131, 238 in traumatic death 255 nursing homes 191–192 costs and insurance coverage 168–169 pet companions in 209 Nussbaum, Jon F. 30 nutrition and hydration 32–33 tube feeding 32–33 withholding or withdrawal 32–33, 273–274 choice to stop eating and drinking 68–69, 244 dehydration benefits 32–33, 95–96 hastening death 68–69, 134–135
O obituary notice 224 announcement of death in 30, 193 on Internet 193 occupational injuries and deaths 275–277 odor corpse flower 81 detection by cadaver dog 54 in imminent death 42 O’Driscoll, Patrick 223 OMEGA—Journal of Death and Dying 194 omens of death 194 On Death and Dying (KüblerRoss) 159, 215, 237
On Our Own Terms: Moyers on Dying 194 opiates 194–195, 199, 200, 201 Oregon, physician-assisted suicide in 36, 195–196, 210 organ and tissue donation 43, 196–198 and anatomical gifts 27 Uniform Anatomical Gift Act 86, 197, 259–260 criteria of death 45, 86 Hispanic American and Latino beliefs 139–140 Jewish beliefs 156 quilts for donor families 99–100 ossuary 198
P Pacific Islanders/Asian Americans. See Asian Americans/ Pacific Islanders pain management 199–202 children 201–202 comfort care 72 dehydration benefits 33, 95–96 elderly 201 end-of-life care 106, 199–202 Last Acts report findings 161, 199 non-drug approaches 201, 202 opiates 194–195, 199, 200, 201 palliative care 203, 204 and quality of dying and death 219 and quality of life 220 terminal sedation 252 pall 171, 202, 203 and veteran burial flag 179, 186, 202, 264–265 pallbearer 202–203
palliative care 203–205 children 205 and comfort care 72, 203 and hospice care 203, 204, 205 insurance coverage 173, 204 Last Acts report findings 161 National Hospice and Palliative Care Organization 186 pet companions in 209 and quality of life 220 Veterans Administration initiative 263 parade of cows festival 138 paradise 206 heaven 136, 206 Islam beliefs 152, 206 Taoist beliefs 206, 248 Valhalla 206, 263 parent coping with death of child 75–76 Compassionate Friends support group 73, 76, 132 gender differences 123 guilt feelings 132 natal loss 185 parent death 77–78 anger in 29 childhood grief 65, 66, 67 adolescent 8–9, 11 delayed grief 96 inheritance issues 150–151 Parker-Pearson, Mike 231 partner or spouse death. See spouse or partner death Partnership for Caring 13, 40, 206, 249 Last Acts Partnership 161, 206 passive euthanasia 109 pastoral caregivers 206–207 pathology, forensic 116 patient-centered care 207 Patient Self-Determination Act of 1991 12–13, 207–208
364 The Encyclopedia of Death and Dying Patrick, Donald L. 219 Paul, Barbara J. 190 Pauli, Richard M. 238 Pearson, Cynthia 106 Pearson, Mike Parker 50 Pedersen, Donald M. 191 Penn, William 56 Perez, Anthony 7 Periyakoil, Vyjeyanthi S. 97, 215 perpetual care fee of cemetery 63, 107, 208 persistent vegetative state 208–209 and life support systems 166, 209 Quinlan case 221 Schiavo case 208, 232–233 personification of death 209, 244 angel of death 28 Grim Reaper 28, 131, 209, 244 poetry 212 pets 209 companionship 209 death of 79–80 discounted grief in 99 mummification in 183 in heaven 136 phantom or ghost 123–124, 135, 184 physician-assisted suicide 36, 109–110, 210 Hemlock Society 137 measures hastening death 134–135 and midwife in dying process 178 Oregon Death with Dignity Act 195–196 and right-to-die 227 and terminal sedation 252 physician-patient interactions 151–152 cultural differences 14, 87, 150, 152 disease-centered 207
informed consent 150 nondisclosure 191 patient-centered 207 Pierce, William L. 150 place of death 210 school 233 workplace 275–277 plague, Black Death in 41–42, 228 planning books 211 Plato 18 plays on end-of-life issues 211 poetry 211–212 on death and dying 211–212 and ring-around-a-rosy game 228 as therapy 211 and music therapy 183–184 Pollan, Michael 217 Post, Paul 26 post-abortion syndrome 4 Postal Service cremain regulations 84 posthumous reproduction 212–213 post-life industry 91 postmortem birth 71 postmortem examination 213–214. See also autopsy post-traumatic stress disorder 255, 256 potlatch 20–21, 214 potter’s field 214 power of attorney 214 durable 101 medical 136, 173, 214. See also health care proxy Powers, John 46 prearrangement of funeral 214–215. See also funeral, planning and prearrangement pregnancy abortion 1–4 fetal death 113–114, 185, 234, 238–239
maternal mortality 171–172 miscarriage 179 posthumous reproduction 212–213 stillbirth 238–239 prematurity, neonatal death in 190 preparatory grief 215 and anticipatory grief 30–31 and depression 97, 215 prescription drug insurance benefits 174, 175 preservation techniques cryonics 86 embalming 104–105 mummification 183 and posthumous reproduction 212–213 Presidential Memorial Certificate 179, 186, 264 prison death camp 91 death row 94 Grace Project 125, 148 hospice program 147–148 terminal illness of inmates 125, 147–148 probate proceedings 39, 114, 216 and living trusts 166–167 and will 272 Project GRACE 11, 216 Project on Death in America 14, 216, 228 promised land 136, 206 Promoting Excellence in Endof-Life Care 216 Protestant beliefs 83, 216–217 proxy for health care decisions. See health care proxy psychedelic drugs 217 psychic mediums 72–73, 218, 233–234 psychotherapy in dying 218 in grief 129 traumatic 256
Index 365 purgatory 218 pyramids in ancient Egypt 218 pyre, funeral 120–121, 138
Q quality of dying and death 219 quality of life 219–220 hospice care 142 life support systems 166 nursing home 191, 192 Quill, Timothy E. 134, 199, 252 quilts 99–100, 220–221 Quinlan, Karen Ann 221
R Rahe, Richard 78 Randolph, Laura B. 271 Randolph, Linda 99 Rasmussen, Knud 20 Ratcliffe, Margaret 147 rattle sound in breathing 42, 94, 244 reburial 223 Native American Grave Protection and Repatriation Act 135, 187, 223 records needed at death 92, 114, 223–224 Reese, D. J. 14 registry service for living wills 261 reincarnation 18, 19, 224 Buddhist beliefs 46, 224 Hindu beliefs 137, 224 relaxation techniques in pain management 202 relics 224 remembrance, rosemary for 229 remembrance services 224 and memorial services 175–176 reorganization stage of grief 131, 238 reproduction, posthumous 212–213
requiem mass (Mass of Christian Burial) 60, 171 research on end-of-life 151, 225–226 Resnick, P. J. 189 respite care 144, 163, 226 restlessness in imminent death 42 resuscitation 226 and do-not-resuscitate orders 12, 100, 147, 226 retort cremation chamber 84, 226 Rettig, Kathryn D. 219, 273 Rich, Tracey R. 18 rifle firing at funerals 179, 248, 258 right-to-die 226–227 euthanasia issues 109 Quinlan case 221 Schiavo case 208, 232–233 and technological advances 250 and withholding or withdrawal of treatment 221, 226–227, 273–274 The Right to Die: Understanding Euthanasia (Humphry and Wickett) 109 rigor mortis 227 ring-around-a-rosy 227–228 Rinpoche, Sogyal 2 R.I.P. (Jones) 121 rituals 228 sacrificial 231 River Styx 71, 127, 133, 228 Roberts, Darryl J. 50 Robert Wood Johnson Foundation 82, 228 Education for Physicians on End-of-Life Care grant 103 Last Acts funding 161, 228, 243 Promoting Excellence in End-of-Life Care 216 Rogak, Lisa 209
Rome, ancient 228 catacombs 59–60, 228 cremation 83, 228 death masks 93 Hades 133, 228 life expectancy 164 pallbearers 203 River Styx 71, 133, 228 sarcophagus use 231 Romilly, Esmond 180 Roscoe, S. T. 183 rosemary 229 Rosman, J. P. 189 Rotstein, Gary 203, 204 Roubenoff, R. 113 Roy, F. Hampton 108, 164, 188 RU-486 inducing abortion 2–3 Rural Communities Hospice Care Access Improvement Act of 2003 163 rural hospice programs 163, 174 Rush, Benjamin 56 Russell, Charles 79, 108, 164, 188 Russell, William 259 Ruysch, Frederic 104
S Sabatino, Charles P. 13 sacrifice 231 Sahler, Olle Jane 191 Salinas, Robert 211 Salisbury, David F. 54–55 Salsbury, Robert E. 26 San Filippo, R. David 5, 46, 47 sarcopenia and failure to thrive 113 sarcophagus 231 Tomb of the Unknowns 253 Satel, Sally L. 130 Saunders, Cicely 143 saved by the bell 231–232 Saynor, John Kennedy 77 scaffold burial 232 Scannell, Kate 57 Schaller, James 183
366 The Encyclopedia of Death and Dying Schiavo, Terri 208, 232–233 Schmadeke, Steve 254 Schmidt, Kamen 46 Schmidt, L. M. 205 school death 233 adolescent grief 8 Schroeder-Sheker, Therese 184 Schvaneveldt, Jay D. 118 Schwab, R. 123 Schwartz, Morrie 21 Seabrook, Charles 126 sea burial 23, 48, 49–50 cremains 49–50, 83 séance 233–234 sedation, terminal 134, 251–252 sedentary deaths 234 Seilhean, D. 38 selective multifetal reduction 234 sepulcher 234 American Indian customs 26 Sexton, James 146 sexual activity autoerotic deaths 37 necrophilia 189 Shangri-la 136, 206 Sharp, Deborah 241 Shaw, Eva 177 Shear, M. Katherine 255, 256 Sheikh, A. 184 shiva 156–157, 235 shock and numbness stage of grief 130, 131, 238 shroud 235 green burial 128, 235 Shur, Barry 86 sibling death 80 adult sibling 80 anger in 29 in childhood and adolescence 9, 65, 66, 80 Compassionate Friends support group 73, 80 Sidelau, Barbara Flynn 9 Silvestri, G. A. 195 Simpson, Suzanne M. 188
skin changes cyanosis 87 livor mortis 168 near death 42, 245 Slade, Joann 249 slave burials 15 sleep changes in imminent death 42, 244 Slovik, Eddie 111 Smith, Ian Maclean 81, 239 Smith, Richard J., III 24 social death 235–236 and anticipatory grief 30–31, 236 Social Security Administration accelerated death benefits affecting eligibility 5 accidental death definition 6 death benefits 236 notification of death 114 Socrates 2, 5 somatic death 41, 236 Southern, Eileen 155 spector or ghost 123–124, 135, 184 sperm donation in posthumous reproduction 212–213 Spier, Leslie 28, 124 spiritual care 236–237 Spiritualism and communication with the dead 72–73 spouse or partner death 78–79 loneliness 168 next of kin 190 widowhood 271 stages of dying 237 acceptance 5, 29, 237 anger 29, 237 bargaining 39, 237 denial 96, 237 depression 97, 237 Kübler-Ross 159 stages of grief 128, 129, 130, 131, 237–238 acceptance 6, 131 anger 29, 130, 238
Bowlby model 44, 237–238 denial 96 disorganization and despair 131, 238 duration 128 in grief counseling and therapy 129 reorganization 131, 238 shock and numbness 130, 131, 238, 255 symptoms 130 in traumatic death 255 workplace 277 yearning and searching 131, 238 state funerals 238 Steenburgh, Jason van 195 Stefansson, Vihjalmur 20 Steigman, Carmen K. 213 Steinberg, Deborah L. 7 Steinhauser, Karen E. 219 stillbirth 238–239 stress, caregiver 57, 105–106, 274–275 stroke 25, 140, 162, 164 Stubbs, Margaret 106 suction curettage abortion procedure 3 sudden death 239 infant 148, 149, 164, 173, 239–240 traumatic 254–255 sudden infant death syndrome 148, 149, 164, 239–240 death investigation 173, 239 suicide 240–242 American Indian/Alaska Native 25 anger phase of grief in 29 assisted 36. See also assisted suicide and breast implants 242 children and adolescents 241, 242 at school 233 in depression 97, 241
Index 367 elderly 241 and equivocal death 108 guilt feelings in 132 hanging method 134 hara-kiri ritual 134 Hemlock Society 137 Islam beliefs 152 physician-assisted 210. See also physician-assisted suicide as sacrifice 231 and violent death 266 Sullivan, Lawrence 206 sundown syndrome and failure to thrive 113 Sunoo, Brenda Paik 277 Sunoo, Jan Jung-Min 277 superstitions 242 African-American 14–15 omens of death 194 SUPPORT study 146, 243, 250 surrogate decision making 243 survivor benefit 91. See also death benefits survivor guilt 131–132, 243 in suicide 132 in traumatic death 243, 255 suttee 121 sweating in imminent death 42–43 Sweeting, H. N. 236 symbols and symbolism 244 gravestone 127, 243–244 horsemen of the Apocalypse 142 memento mori 243, 244 omens of death 194 personification of death. See personification of death superstitions 194, 242 sympathy notes letters of condolence 74–75 virtual 266–267 symptoms of impending death 42–43, 244–245 Syuber, Margaret L. 66
T Talan, Jamie 136 talking about death 247 health care team-patient interactions 152 Hispanic American and Latino beliefs 139 talk therapy. See psychotherapy Taoism (Daoism) 206, 248 Taps 248 taxes 249 and accelerated death benefits 5 and charitable gifting 64–65 and estate planning 108, 249 on inheritance 151, 249 and living trusts 167 Taylor, Richard P. 257 technology impact on death and dying 249–250 teenagers. See adolescents telehospice 250–251 telemonitoring 250 television representation of death and dying 225 temperature of body in algor mortis 21–22 in imminent death 245 Teno, Joan M. 201 terminal care 251 hospice. See hospice pain management in. See pain management palliative. See palliative care terminal condition 251 terminal sedation 134, 251–252 terrorist attacks adolescent grief 8 afterlife beliefs 17 anniversary reactions 30 classification system on death and injury in 70 disaster deaths in 98 memorial quilts 220
mortality rate trends 164–165 survivor guilt 243 thanatology 159, 252 Foundation of Thanatology 117 music 184 thanatophobia 252–253 theme funeral 253 Thera, Ven D. 116 thirst changes 42, 244 artificial hydration and nutrition in 32–33 and choice to stop drinking 68–69, 244 and dehydration benefits 32–33, 95–96 Thomas, Dylan 212 Thomas, Norma D 14, 87, 124 Thornton, V. K. 263 Thunder, James M. 213 tissue and organ donation 196–198. See also organ and tissue donation Tlingit Indians 20–21 tolling of church bell for announcement of death 30, 93 tomb 125, 253 ancient Egypt 103, 104, 218 vault 253, 263 Tomb of the Unknowns 32, 253 tombstone 253 epitaph 108, 126, 127 grave marker 126, 253 monument 180 total dependence 253 Totten trust 253–254 touch sensations in imminent death 43 toxicology, forensic 117 trajectory in dying process 101–102 transplantation procedures, organ and tissue donation for 196–198. See also organ and tissue donation
368 The Encyclopedia of Death and Dying transporting human remains 254 in air tray 19, 254 in body donation 43–44 to burial place 52, 254 burial-transit permit in 52 cremains 52, 84, 254 embalmed 105, 254 in hearse 136 in sealed casket 58 traumatic death 254–256 survivor guilt 243, 255 violent 266 tree burial 48, 257 Treuhaft, Robert 180 Trinkley, Michael 15 trust funds 257 living trusts 166–167 Totten trust 253–254 Tschann, J. M. 72 Tsuiji, Takashi 224 tube feeding 32–33 Tuesdays With Morrie 21 Turkington, Carol 71 Tuttas, Carol A. 152 21-gun salute 258
U unconscious state 259 vegetative 208, 259 persistent. See persistent vegetative state undertaker 119, 181, 186, 259 Uniform Anatomical Gift Act 86, 197, 259–260 urn 260–261 cremains in 83, 152, 260–261 in niche 172 U.S. Living Will Registry 261
V vacuum aspiration abortion procedure 3 Valhalla 206, 263
Valko, Nancy Guilfoy 252 Van Dover, Leslie J. 236 van Steenburgh, Jason 195 vault 263 columbarium 71 grave liner 125, 263 mausoleum 172 tomb 253, 263 vegetative state 208, 259 persistent 208–209. See also persistent vegetative state ventilator 263–264 withholding or withdrawal 263–264, 273–274 Veterans Administration burial benefits 264–265. See also veterans burial benefits Hospice and Palliative Care Initiative 263 veterans burial benefits 63–64, 179, 185–186, 264–265 burial at sea 49 burial flag 179, 186, 202, 264–265 headstone and grave marker 63, 179, 186, 264 and military funeral honors 179, 248 rifle firing 179, 248, 258 Taps 248 national cemeteries 63–64, 179, 185–186, 264 Arlington National Cemetery 31–32, 175, 253 Presidential Memorial Certificate 179, 186, 264 viatical settlement 265 Viaticum (last rites) 61, 162 Victorian mourning rituals 182 clothing 265–266 videoconferencing 250 viewing and visitation 267 Jewish beliefs 156 violent death 266 military 179, 270 traumatic grief 255
virtual sympathy notes 266–267 vision changes in imminent death 42, 244 visitation 267, 270 and anatomical gifts 27 visits to graves 267 visual hallucinations 42, 90–91, 188 vital signs 267–268 Volunteers of America 125
W wailing 269 wake 267, 269–270 Catholic beliefs 60 Jewish beliefs 156 Wald, Florence 143 Walter, T. 224 Walton, Nathan 48 war deaths 175, 185, 270 Warí cannibalism ritual 54–55 wasting away and failure to thrive 113 marijuana therapy in 217–218 Waterbury, Barbara 214 water-divining 270–271 Watstein, Sarah Barbara 30, 101, 136, 141, 197 Watters, Derek 17 Waugh, Earle 64 webcasting funerals 271 Weber, Leonard J. 86 Webster, George 1 Weissert, Will 64 Wells, Robert B. 228 Welsh, Lesley A. 10, 11 Welsh, T. S. 213 Werner, Harry 237 What to Do When a Loved One Dies (Shaw) 177 White, Gayle 206 whole body donation 27, 43–44, 53–54. See also body donation whole brain death 271 Whoriskey, Peter 120
Index 369 Wickett, Ann 109 widowhood 271 Wiigh-Masak, Susanne 50 Wilbur, Richard 212 will 272 beneficiary 39, 272 bequest 40, 272 estate planning 108 executor 111–112 heirlooms in family 136–137 Williams, Ted 86 will to live or survive 272–273 and wish to die 94–95, 273 Wiseman, Richard 233, 234 wish to hasten death 273 and death wish 94–95 and right to die 226–227 withholding or withdrawal of treatment 273–274 benefits and burdens analysis 39–40 bioethics 41 decision making 107 do-not-resuscitate orders 100 euthanasia 109–110 futile interventions 173 hastening death 134–135
hydration and nutrition 32–33, 273–274 choice to stop eating and drinking 68–69, 244 dehydration benefits 32–33, 95–96 hastening death 68–69, 134–135 and life-prolonging decisions 166 living wills on 167–168 Quinlan case 221 and right-to-die 221, 226–227, 273–274 Schiavo case 208, 232–233 and terminal sedation 251–252 ventilator 263–264, 273–274 women and grief 123 woodland burial 128 Woods, Michael 61 Wooten, Patty 146 Wordsworth, William 212 workplace 274–277 bereavement leave policies 40, 106 caregivers in 105–106, 274–275
coping with death of coworker 76–77, 277 Five Wishes at Work 115 grief in 76–77, 277 injuries and death in 275–277 World Heath Organization guidelines pain management 195 palliative care 204 wrongful death 277–278
Y Yager, Jan 77 yearning and searching stage of grief 131, 238
Z Zaslow, Jeffrey 52 Zerbe, Kathryn J. 7 Zisook, Sidney 10, 80 zoning restrictions funeral home 120 home burial 140 Zoroastrianism 18, 28, 206
