Whole Person Care
Tom A. Hutchinson Editor
Whole Person Care A New Paradigm for the 21st Century
Editor Tom A. Hutchinson McGill University, McGill Programs in Whole Person Care Pine Ave W. 546 H2W 1S6 Montreal Québec Canada
[email protected] Excerpt taken from: “When Good Doctors Go Bad” in Complications: A Surgeon’s Notes on an Imperfect Science by Atul Gawande Copyright 2002 by Atul Gawande. Reprinted by permission of Henry Holt and Company, LLC. Quotation taken from: Medicine in Translation by Danielle Ofri Copyright 2009 by Danielle Ofri. Reprinted by permission of Beacon Press, Boston. Quotation taken from: Pragmatics of Human Communication. A Study of Interactional Patterns, Pathologies, and Paradoxes by Paul Watzlawick, Janet Beavin Bavelas, and Don D. Jackson Copyright 1967. Reprinted by permission of W.W. Norton & Company, Inc. Chart taken from: Re-Authoring Lives: Interviews & Essays by Michael White Copyright 1995. Reprinted by permission of Dulwich Centre Publications. Figure taken from: Complementary functional specializations of the human cerebral hemispheres in R. Levi-Montalcini (Ed.), Nerve Cells, Transmitters and Behaviour by Brenda Milner Copyright 1980. Reprinted by permission of Brenda Milner. The Placating Stance, Blaming Stance, Super-Reasonable Stance, Irrelevant / Distracting Stance taken from: The Satir Model: Family Therapy and Beyond by Virginia Satir, John Banmen, Jane Gerber, and Maria Gomori Copyright 1991. Reprinted by permission of Science and Behavior Books, Inc.
ISBN 978-1-4419-9439-4 e-ISBN 978-1-4419-9440-0 DOI 10.1007/978-1-4419-9440-0 Springer New York Dordrecht Heidelberg London Library of Congress Control Number: 2011926588 © Springer Science+Business Media, LLC 2011 All rights reserved. This work may not be translated or copied in whole or in part without the written permission of the publisher (Springer Science+Business Media, LLC, 233 Spring Street, New York, NY 10013, USA), except for brief excerpts in connection with reviews or scholarly analysis. Use in connection with any form of information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed is forbidden. The use in this publication of trade names, trademarks, service marks, and similar terms, even if they are not identified as such, is not to be taken as an expression of opinion as to whether or not they are subject to proprietary rights. Printed on acid-free paper Springer is part of Springer Science+Business Media (www.springer.com)
Introductory
“The practice of medicine is an art, not a trade; a calling, not a business; a calling in which your heart will be exercised equally with your head.” William Osler, 1903 “The computer cannot participate in the true art of medicine. It has none of the subtle sensory perception, intellectual imagination, and emotional sensitivity necessary for communicating with people and giving clinical care.” Alvan R. Feinstein, 1967 “To be not the servants of science, nature, nations, personal beliefs or even our desire to preserve life. Understanding the reality of our own mortality, we endeavour, instead, to heal our fellow human beings and free them from constraint, so that they may flourish.” McGill Medical Class of 2012, Pledge at White Coat Ceremony, 2009
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Foreword
“Not everything that can be counted counts and not everything that counts can be counted.” Albert Einstein1
Why a book on “Whole Person Care”? This book addresses issues that are profoundly relevant to each of us – both as caregivers and in our daily lives. It suggests that we have the opportunity to participate in the birth of a new paradigm, one that entails a radical reframing of both diagnosis and therapeutics; how we see those we are caring for; how we see others; how we see ourselves. Science historian and philosopher Thomas Kuhn suggested that instead of advancing in a linear fashion, scientific progress is marked by intermittent crossroads at which the accepted conceptual world view is replaced by a new one, a perspective that scientists previously would not have considered valid. The former paradigm (the “old” way of seeing) now is considered “thinking inside the box,” while the new is the product of “thinking outside the box.” The new does not necessarily negate the old. For example, Newtonian mechanics still offered a good model for understanding speeds below the speed of light, even after it had given way to the new paradigm represented by Einstein’s theory of relativity and quantum physics2 [1–3]. From Hippocrates (460–377 B.C.E.) until the early years of the nineteenth century C.E., the dominant paradigm of western medicine was “humorism,” a system which appeared to provide a useful framework for understanding the human body and its ills. The four humors of Hippocratic medicine were black bile (melankholia), yellow bile (cholera), phlegm (phlegma), and blood (sanguis). Each humor had its own ascribed associations and properties: health required that the four humors be “in balance” [4, 5]. As its influence waned over the early decades of the nineteenth century, humorism was folkloric in tone and passed on through brief, loosely structured preceptorship programs, many of dubious quality. A growing array of observations during the latter half of the nineteenth century led to a new norm, that of science-based healthcare. For example, the observations, in France, of microbiologist and chemist Louis Pasteur (1822–1895) resulted in the germ theory of disease.3In 1864, the English surgeon Joseph Lister (1827–1912), Professor of Surgery in Glasgow, was told of Pasteur’s work and correctly suspected vii
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its relevance to surgical wound infections.4 This insight resulted in the development of antisepsis and a dramatic decrease in surgical risks. Before Lister, a two to three hundred bed hospital might record 400 operations a year, 25% of them being amputations. After Lister, the same hospital might undertake 4,000–5,000 operations a year, with less than 1% amputations! [6]. A giant step toward a science-based understanding of disease had been taken. The work of Marie Curie5 and Florence Nightingale,6 the development of laboratory medicine and radiology, and the founding of the Rockefeller Institute for Medical Research in 19017 were among the many advancements that assured the continuing growth of medical science and the increasing use of its celebrated tools, the randomized double blind clinical trial and evidence-based therapeutics. The academic seal of approval for this emerging paradigm with its inductive approach to logical thinking, took the form of a detailed review of North American medical education by the nonmedical educator Abraham Flexner, a study sponsored by the Carnegie Foundation for the Advancement of Teaching. The result, known as the Flexner Report [7], triggered sweeping reforms in medical education standards, organization and curriculum, through the adoption of a science-based model of disease coupled with obligatory hands-on clinical experience. As a result, many existing preceptorship training programs were closed and the remaining schools were reformed to conform to Flexner’s recommendations. Over the ensuing years, statistically-significant data, generated by rigorous quantitative studies became the only portal to acceptability in medical research, practice, and teaching. Some voiced concern that in the process something had been lost; that the objectifying, depersonalizing, and quantifying had perhaps carried with it an element of reductionism. But the results spoke for themselves! And yet, and yet … ! Something was missing. The science-based paradigm often failed to reflect lived experience. Why? When, over a quiet lunch, I asked one eminent quality of life (QOL) theorist why he had casually dropped “spirituality” from the list of QOL determinants cited by respondents in his study, he commented, “It didn’t correlate statistically with the other variables, and besides, they don’t give research grants to study spirituality”8 [8, 9]. That was understandable. The accepted paradigm drives the research agenda, and after all, “spirituality” seemed an unlikely source of cutting-edge scientific insight. The lack of precision in defining some elements of subjective experience remains problematic. Concepts such as “spirit,” “spiritual,” “soul,” “existential,” “love,” “suffering,” “dignity,” “healing,” … are vague, at best. Often, such terms mean simply what the user wants them to mean; nothing more, nothing less. Furthermore, the domains in question seem to concern fantasy rather than tangible fact. The waters negotiated as one passes from considerations physical, to social, to psychological, to spiritual become mirky indeed. Why, French paleontologist, biologist, and philosopher Teilhard de Chardin (1881–1955), who spent his life trying to integrate religious experience with natural science, went so far as to say, “We are not human beings having a spiritual experience, but spiritual beings having a human experience.” How can one put a p-value on such things? The social sciences have used qualitative research techniques to investigate such issues, but those strategies were deemed unreliable by quantitative science purists.
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Meanwhile, daily experience has suggested that transcendence, meaning, hope, and “healing connections,” may lift one beyond despair and reduce, even eliminate, suffering; conversely, uncertainty, fear, and an experience of loss of control, may amplify suffering even in the absence of physical distress. If, as suggested by the ancient metaphorical schema, we are “body, mind and spirit,” (however understood), those elements are inseparable and interdependent, and, that mix of influences consistently modifies our experience of health and illness. Nevertheless, this is largely ignored in the diagnoses and therapy embodied in the science-based paradigm. Variables that fall peripheral to the accepted science-based view of disease, appear to directly influence human suffering, sense of well-being, and even length of life. The evidence surfaces on a daily basis. • In the midst of the unimaginable hell of a Nazi concentration camp, Viktor Frankl experienced transcendence. He described the moment. “In a last violent protest against the hopelessness of imminent death, I sensed my spirit piercing through the enveloping gloom. I felt it transcend that hopeless, meaningless world, and from somewhere I heard a victorious “Yes” in answer to my question of the existence of an ultimate purpose” [10]. Why and how did that occur? • Amid the torrent of feelings pouring from his pen, the dying 31-year-old poet Ted Rosenthal commented, “I’m changed; I’ll always be changed. I’ll always be happier for what I have been through, only because it has enabled me to have the courage to open myself up to anything that happens and I am no longer afraid of death. At least I am not afraid of death the way I might have been had I not become sick” [11]. “Happier?” As a poet, Rosenthal chose the word with care. If QOL is relevant in all health care (not simply in end-of-life care) our scientific curiosity must surely be broadened to include the why and how of Rosenthal’s improbable statement. • A dying patient commented to Dr. Cicely Saunders on admission to St. Christopher’s Hospice, “I never would have dreamed that it would be safe to die here.” Safe to die? What factors fostered the utterance of that apparent oxymoron? • In a study of 50 cancer patients, Kagawa-Singer and colleagues found that subjective well-being did not correlate with physical status. Surprisingly, one-third of their sample assessed themselves to be “fairly well” and two-thirds rated themselves “very well,” including 12 who died during the study. The coping objective common across subjects was “to maintain self-integrity” [12]. Should a medical paradigm that furthers the best interests of our patients not ask what determines a sense of “self-integrity” both in far advanced illness and in health. Should it not ask how that end is fostered? • Cohen et al documented the significant contributions to QOL made by the existential-spiritual domain (Ex’l/Sp) using the McGill QOL Instrument (MQOL): With cancer patients: Ex’l/Sp was a significant QOL contributor for people at various stages of the disease; it was as important as any other domain measured by MQOL subscales [13, 14]; With HIV patients: Ex/Sp was only significant when CD4 count was
