. . . And a Time to Die: How American Hospitals Shape the End of Life
http://www.100md.com
《新英格兰医药杂志》
Physician-Assisted Dying: The Case for Palliative Care and Patient Choice
Edited by Timothy E. Quill and Margaret P. Battin. 342 pp. Baltimore, Johns Hopkins University Press, 2004. $49.95 (cloth); $26.95 (paper). ISBN 0-8018-8069-6 (cloth); 0-8018-8070-X (paper).
After decades of study, our collective fascination with the care of dying patients shows no sign of receding. The dying patient remains the nexus of a complex interaction of medical and nursing care, ethics, law, and economics, and important questions still lack clear consensus. Should we legalize physician-assisted suicide? What is the appropriate medical care for a critically ill patient who may die but who also may live with aggressive treatment? How should physicians integrate patients' vague advance directives into clinical care? To what extent do market forces or acculturated behavior determine medical practices at the end of life?
The two books reviewed here make important contributions to answering these questions. . . . And a Time to Die is a medical anthropologist's study of dying in American hospitals that analyzes social, cultural, and institutional reasons for the evolution of normative medical and nursing practices. Physician-Assisted Dying is a collection of 21 essays defending the premise that physician-assisted suicide should be a legally permissible option for the few dying patients who need it and one that remains consistent with the principles of palliative care. The two books are complementary efforts to study the care of the dying patient in the United States: the former by reaching inductive conclusions from the intensive study of individual cases and social processes, and the latter by making persuasive arguments supported by data.
Sharon Kaufman, a professor of medical anthropology at the University of California, San Francisco, used an ethnographic process to approach her subject. She spent two years studying three California hospitals by immersing herself in the hospital culture. She followed, observed, and interviewed nurses, physicians, therapists, patients, family members, social workers, and others while trying to understand the factors that led to the prevailing practices. She was particularly interested in how hospitals organized dying as a result of acculturated behavior that was regarded as normal and unproblematic by practitioners who did not understand the origins of the behavior. She discovered how hospitals shape medical practices, how shared medical rhetoric frames decision making about dying patients, and how cultural factors determine the way death occurs in the hospital and even which patients are considered to be dying by physicians and nurses.
Kaufman was particularly intrigued by patterns of social behavior. She observed that today death usually is orchestrated by professionals in hospitals and no longer is waited for, a transition that has markedly shortened the "waiting time" for dying. She found that hospital procedures and bureaucracy produced the imperative to "move things along," mandating that health care professionals expedite decision making and produce the conditions for death. She identified "pathways" for moving things along, such as heroic intervention, and discussed how and why patients may stop moving along a pathway. Her ethnographic study features the detailed case histories of 27 patients culled from more than 100 dying patients she observed. In their clinical and social detail, multidisciplinary approach, and poignancy, many of the histories remind me of inpatient ethics consultations I have performed. Her analysis illuminates the complexity of the care of critically ill and dying patients; the ambiguity of slogans such as "death with dignity," "quality of life," and "stopping life support"; the idiosyncrasies of the American hospital system; and the social processes underlying American hospital subculture.
Timothy Quill and Margaret Battin's collection of essays was compiled in response to a set of essays, published in 2002 by Johns Hopkins University Press, entitled The Case against Assisted Suicide: For the Right to End-of-Life Care, edited by Kathleen Foley and Herbert Hendin. The present book consists of a point-by-point rebuttal of most of the criticisms raised in the earlier one, leading to the editors' conclusion that physician-assisted suicide should be a legally available option of last resort for that small group of dying patients for whom excellent palliative care remains inadequate. Most of the essays were commissioned for this volume, but a few are revisions of earlier work. The editors include relevant data from Oregon and the Netherlands and have written helpful introductory and concluding chapters that unite the points made by the contributors into a persuasive argument. Readers who are interested in a balanced counterpoint highlighting the best arguments of advocates and opponents of the legalization of assisted suicide should read both Physician-Assisted Dying and Foley and Hendin's book.
Essays of particular interest include Marcia Angell's reprise of her earlier essay "The Quality of Mercy," in which she points out that patients' existential suffering is frequently not amenable to excellent palliative care and that assisted suicide should be available on the grounds of mercy. Eric Cassell explains that relief of pain may not lead to relief of suffering because suffering is an afflicted state of being. He observes that "patients who are terminally ill look forward to death not because they want to die but because their suffering has made living intolerable." Robert Pearlman and Helene Starks provide data showing that the most common motivations for seeking a hastened death include feeling weak, tired, and uncomfortable and having a loss of function, a sense of loss of self, a desire for control, and fears about future quality of life and about dying. Linda Ganzini offers a useful summary of the experience in Oregon, where physician-assisted suicide has been legally available since 1997. She points out that only one third of Oregon physicians are willing to prescribe a lethal dose of medications on request, that 20 percent of requests come from depressed patients but that no depressed patient has received a prescription, and that palliative care in Oregon has improved since the passage of the law. Alan Meisel provides a scholarly chapter tracing the evolution of American law on dying patients and explaining trends in legal thinking.
Prudent public policy on end-of-life practices should be based on sound data about patients' disease courses, treatment wishes, and outcomes, as well as reasoned ethical and legal arguments and a thoughtful analysis of systems of decision making and medical care. These two books offer differing but constructive approaches to the ongoing debate and provide thought-provoking reading for everyone contemplating the ultimate fate of us all.
James L. Bernat, M.D.
Dartmouth–Hitchcock Medical Center
Lebanon, NH 03756
bernat@dartmouth.edu(Sharon R. Kaufman. 400 pp)
Edited by Timothy E. Quill and Margaret P. Battin. 342 pp. Baltimore, Johns Hopkins University Press, 2004. $49.95 (cloth); $26.95 (paper). ISBN 0-8018-8069-6 (cloth); 0-8018-8070-X (paper).
After decades of study, our collective fascination with the care of dying patients shows no sign of receding. The dying patient remains the nexus of a complex interaction of medical and nursing care, ethics, law, and economics, and important questions still lack clear consensus. Should we legalize physician-assisted suicide? What is the appropriate medical care for a critically ill patient who may die but who also may live with aggressive treatment? How should physicians integrate patients' vague advance directives into clinical care? To what extent do market forces or acculturated behavior determine medical practices at the end of life?
The two books reviewed here make important contributions to answering these questions. . . . And a Time to Die is a medical anthropologist's study of dying in American hospitals that analyzes social, cultural, and institutional reasons for the evolution of normative medical and nursing practices. Physician-Assisted Dying is a collection of 21 essays defending the premise that physician-assisted suicide should be a legally permissible option for the few dying patients who need it and one that remains consistent with the principles of palliative care. The two books are complementary efforts to study the care of the dying patient in the United States: the former by reaching inductive conclusions from the intensive study of individual cases and social processes, and the latter by making persuasive arguments supported by data.
Sharon Kaufman, a professor of medical anthropology at the University of California, San Francisco, used an ethnographic process to approach her subject. She spent two years studying three California hospitals by immersing herself in the hospital culture. She followed, observed, and interviewed nurses, physicians, therapists, patients, family members, social workers, and others while trying to understand the factors that led to the prevailing practices. She was particularly interested in how hospitals organized dying as a result of acculturated behavior that was regarded as normal and unproblematic by practitioners who did not understand the origins of the behavior. She discovered how hospitals shape medical practices, how shared medical rhetoric frames decision making about dying patients, and how cultural factors determine the way death occurs in the hospital and even which patients are considered to be dying by physicians and nurses.
Kaufman was particularly intrigued by patterns of social behavior. She observed that today death usually is orchestrated by professionals in hospitals and no longer is waited for, a transition that has markedly shortened the "waiting time" for dying. She found that hospital procedures and bureaucracy produced the imperative to "move things along," mandating that health care professionals expedite decision making and produce the conditions for death. She identified "pathways" for moving things along, such as heroic intervention, and discussed how and why patients may stop moving along a pathway. Her ethnographic study features the detailed case histories of 27 patients culled from more than 100 dying patients she observed. In their clinical and social detail, multidisciplinary approach, and poignancy, many of the histories remind me of inpatient ethics consultations I have performed. Her analysis illuminates the complexity of the care of critically ill and dying patients; the ambiguity of slogans such as "death with dignity," "quality of life," and "stopping life support"; the idiosyncrasies of the American hospital system; and the social processes underlying American hospital subculture.
Timothy Quill and Margaret Battin's collection of essays was compiled in response to a set of essays, published in 2002 by Johns Hopkins University Press, entitled The Case against Assisted Suicide: For the Right to End-of-Life Care, edited by Kathleen Foley and Herbert Hendin. The present book consists of a point-by-point rebuttal of most of the criticisms raised in the earlier one, leading to the editors' conclusion that physician-assisted suicide should be a legally available option of last resort for that small group of dying patients for whom excellent palliative care remains inadequate. Most of the essays were commissioned for this volume, but a few are revisions of earlier work. The editors include relevant data from Oregon and the Netherlands and have written helpful introductory and concluding chapters that unite the points made by the contributors into a persuasive argument. Readers who are interested in a balanced counterpoint highlighting the best arguments of advocates and opponents of the legalization of assisted suicide should read both Physician-Assisted Dying and Foley and Hendin's book.
Essays of particular interest include Marcia Angell's reprise of her earlier essay "The Quality of Mercy," in which she points out that patients' existential suffering is frequently not amenable to excellent palliative care and that assisted suicide should be available on the grounds of mercy. Eric Cassell explains that relief of pain may not lead to relief of suffering because suffering is an afflicted state of being. He observes that "patients who are terminally ill look forward to death not because they want to die but because their suffering has made living intolerable." Robert Pearlman and Helene Starks provide data showing that the most common motivations for seeking a hastened death include feeling weak, tired, and uncomfortable and having a loss of function, a sense of loss of self, a desire for control, and fears about future quality of life and about dying. Linda Ganzini offers a useful summary of the experience in Oregon, where physician-assisted suicide has been legally available since 1997. She points out that only one third of Oregon physicians are willing to prescribe a lethal dose of medications on request, that 20 percent of requests come from depressed patients but that no depressed patient has received a prescription, and that palliative care in Oregon has improved since the passage of the law. Alan Meisel provides a scholarly chapter tracing the evolution of American law on dying patients and explaining trends in legal thinking.
Prudent public policy on end-of-life practices should be based on sound data about patients' disease courses, treatment wishes, and outcomes, as well as reasoned ethical and legal arguments and a thoughtful analysis of systems of decision making and medical care. These two books offer differing but constructive approaches to the ongoing debate and provide thought-provoking reading for everyone contemplating the ultimate fate of us all.
James L. Bernat, M.D.
Dartmouth–Hitchcock Medical Center
Lebanon, NH 03756
bernat@dartmouth.edu(Sharon R. Kaufman. 400 pp)