Whole Person Care: A New Paradigm for the 21st Century PDF
Preview Whole Person Care: A New Paradigm for the 21st Century
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 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 com- municating 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 v 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 partici- pate 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 2 represented by Einstein’s theory of relativity and quantum physics [1–3]. From Hippocrates (460–377 B.C.E.) until the early years of the nineteenth cen- tury 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 struc- tured 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 3 germ theory of disease. In 1864, the English surgeon Joseph Lister (1827–1912), Professor of Surgery in Glasgow, was told of Pasteur’s work and correctly suspected vii viii Foreword 4 its relevance to surgical wound infections. 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 ampu- tations. 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 under- 5 standing of disease had been taken. The work of Marie Curie and Florence 6 Nightingale, the development of laboratory medicine and radiology, and the found- 7 ing of the Rockefeller Institute for Medical Research in 1901 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 para- digm 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 expe- rience. 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 quantita- tive 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 ele- ment 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 spiritu- 8 ality” [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. Foreword ix 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 con- sistently 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 sub- jective 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 <100 (i.e., with AIDS), but then it was the most important contributor to QOL [15].
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