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The Hospice Heritage: Celebrating Our Future
BOOK REVIEWS Negotiating a Good Death: Euthanasia in The Netherlands By Robert Pool, Ph.D. New York, London, Oxford, The Haworth Press, 2000 253 pages, ISBN 0-7890-1080-1 Reviewed by Harold I. Schwartz, M.D.
N
egotiating a Good Death is a rather surprising book that examines how euthanasia decisions are made in The Netherlands. The author, Robert Pool, a medical anthropologist, conducted in-depth case studies of terminally ill patients at a Dutch hospital over a 2-year period. He presents 10 cases in great detail, describing how euthanasia requests develop and evolve, the patient and family dynamics that influence these requests, the reactions of medical staff to them, and how they are implemented and reported. The biggest surprise is learning how, despite the reputation of The Netherlands for leading the way on euthanasia matters, many of the complexities surrounding this practice remain clouded in uncertainty. The confusion begins with the legal context: euthanasia remains against the law in The Netherlands, although it is rarely prosecuted if physicians follow established “rules of due care.” The physicians interviewed in this study are clearly “looking over their shoulders” as they consider when and how to meet euthanasia requests and how to distinguish, for reporting purposes, death due to natural causes from euthanasia. At the same time, Pool describes an “ideology of easy death” (euthanasia means good death) in The Nether-
376
lands, which leads some patients to believe they have a right to die in a manner of their choosing and that physicians have a concomitant obligation to cooperate. Many of the core clinical and social issues that bedevil the physician-assisted suicide debate in the United States remain at issue in The Netherlands. These include the assessment of competency to make end-of-life decisions, the influence of family members (for better or worse) in the decision-making process, the role that inadequate palliative care may play in euthanasia requests, and the so called “double effect” experienced when increased doses of morphine, necessary for symptom alleviation, also hasten death. The doctors in these casestudies are especially aware of this last issue. As Pool notes, patients may be considering euthanasia or actually request it, while, at the same time, requiring increasing doses of pain medication. At such a time “it is only the physician’s own interpretation of his or her motive that determines whether his or her actions are euthanasia or normal medical practice.” This subjective interpretation influences the physician’s interactions with the patient, family, and nursing staff, as well as how the death is reported. Contrary to expectations, many of the euthanasia requests Pool reports do not stem from the absence of adequate palliative care and, especially, inadequate pain control. He considers the “right to selfdetermination,” expressed as a desire to be in control, a key aspect of Dutch culture, making control over one’s death the most important element of a good death. Recent reports of the Oregon experience with physician-assisted suicide (PAS)
suggest this sentiment may not be uniquely Dutch, as concerns about loss of control are reported to play a very significant role in PAS requests in that state. Although the issues raised in Pool’s study are challenging, the method of the study has led to a style of presentation that can be tedious. The case studies are constructed from lengthy interviews with patients, family members, and professionals, which are presented in great detail (sparing none of the ambivalence of all parties). Interest in this book will likely be limited to medical anthropologists and serious scholars of euthanasia and physician-assisted suicide. Dr. Schwartz is Psychiatrist-inChief and Vice President, Behavioral Health at the Institute of Living/Hartford Hospital and Associate Professor of Psychiatry at the University of Connecticut School of Medicine.
The Hospice Heritage: Celebrating Our Future Edited by Inge B. Corless, RN, Ph.D., FAAN, and Zelda Foster, M.S.W. The Haworth Press, Inc. New York, 1999 270 pages plus index, ISBN 0-78900847-5, $29.95 Reviewed by Carolyn Turvey, Ph.D.
T
he Hospice Heritage: Celebrating Our Future is an edited collection of articles about the development of hospice care in the United States. It reads like a progress report because it reviews the early de-
Am J Geriatr Psychiatry 11:3, May-June 2003
Book Reviews velopment of hospice, progress made until now, and issues that need to be addressed in order for hospice to remain a viable part of end-of-life care. The book was copublished as a special edition of The Hospice Journal. Accordingly, it conveys the less formal tone of a group of seasoned experts in a roundtable discussion, offering candid insights into some of the challenges facing hospice care. The book begins with three chapters about the foundations of hospice, with a contribution from none other than Dame Cicely Saunders, the founder of hospice, and a review by the founders of early hospice in the United States. These personal accounts convey the inspirational story of how genuine caring, combined with a good idea, can start an effective grassroots movement in medicine. Nonetheless, the realities of healthcare politics were inescapable. The section on the early foundations of hospice concludes with a chapter contributed by Larry Beresford and Stephan Conner that reads like a suspense novel. They describe the many ingenious twists and fortuitous breaks that led to the development of the National Hospice Organization and the establishment of the Medicare Hospice Benefit. Perhaps the most important contribution of this book is the frank discussion of the shortcomings of the current structure of hospice. The majority of hospice recipients are middle-class, white adults, and only 15% to 20% of Americans who die are in hospice. Several contributors discuss what is causing this limited access to care, as well as current programs trying to remedy the situation. One of the biggest barriers to receiving hospice care is
the difficulty of making an accurate prognosis for fatal chronic illnesses such as heart failure and chronic obstructive pulmonary disease. Medicare reimbursement eligibility criteria require a prognosis of 6 months or less, which is not easy to make with reasonable certainty for fatal chronic illnesses. Therefore, patients with less predictable chronic illness may not use hospice, though they too would benefit from compassionate end-of-life care. Hospice is currently developing programs to address these problems, as well as to improve methods for documenting effectiveness. The one shortcoming of the book is that these innovations are discussed too briefly, whereas the early history of hospice is recapped by several contributors, making the book quite repetitious. The book would have been far more informative if the contributors discussing new programs or the development of research provided more detail about these programs and left the review of hospice history to the earlier contributors. As it is, the reader is left wanting to know more about the innovations and future directions of hospice, even though the book title suggests this was the express purpose of the book. Nonetheless, the book contains insights into the inner workings of hospice that are not likely to be found elsewhere. The capacity to be openly self-critical reveals that the hospice organization remains as vital and committed to quality endof-life care as it was during its idealistic grass-roots beginning. Carolyn L. Turvey, Ph.D., is Assistant Professor, Department of Psychiatry, University of Iowa College of Medicine.
Am J Geriatr Psychiatry 11:3, May-June 2003
Qualitative Gerontology: A Contemporary Perspective, 2nd Edition Edited by Graham D. Rowles, Ph.D., and Nancy E. Schoenberg, Ph.D. New York, Springer, 2002 290 pp, ISBN 0-8261-1335-4, $44.95 Reviewed by Lisa A. Auslander, Ph.D.
T
his fine book provides a muchneeded appraisal of how the use of qualitative gerontology can provide a richness to exploring the aging experience. The editors have selected contributors who are the top experts in their field, producing chapters that are uniformly scholarly and readable. The book goes beyond a mere black-letter exposition of rudimentary concepts in an effort to present contemporary issues in qualitative methods. The book is not intended to be a comprehensive review of qualitative research in gerontology, but is, instead, a refreshing series of essays that describe and enumerate the changes and advances in the field. The book is suitable for beginning students entering the field as well as experienced gerontologists exploring new trends in this area. In the first section, “Life Stories and Autobiographies,” Gary Kenyon provides eloquent arguments for the utilization of autobiographies in exploring the aging experience. Johannes, Schroots, and Birren’s article is a wonderfully written description of two innovative approaches to generating individual life stories: “The Lifeline Interview Method” and “Guided Autobiography.” The Lifeline Inter-
377
N
egotiating a Good Death is a rather surprising book that examines how euthanasia decisions are made in The Netherlands. The author, Robert Pool, a medical anthropologist, conducted in-depth case studies of terminally ill patients at a Dutch hospital over a 2-year period. He presents 10 cases in great detail, describing how euthanasia requests develop and evolve, the patient and family dynamics that influence these requests, the reactions of medical staff to them, and how they are implemented and reported. The biggest surprise is learning how, despite the reputation of The Netherlands for leading the way on euthanasia matters, many of the complexities surrounding this practice remain clouded in uncertainty. The confusion begins with the legal context: euthanasia remains against the law in The Netherlands, although it is rarely prosecuted if physicians follow established “rules of due care.” The physicians interviewed in this study are clearly “looking over their shoulders” as they consider when and how to meet euthanasia requests and how to distinguish, for reporting purposes, death due to natural causes from euthanasia. At the same time, Pool describes an “ideology of easy death” (euthanasia means good death) in The Nether-
376
lands, which leads some patients to believe they have a right to die in a manner of their choosing and that physicians have a concomitant obligation to cooperate. Many of the core clinical and social issues that bedevil the physician-assisted suicide debate in the United States remain at issue in The Netherlands. These include the assessment of competency to make end-of-life decisions, the influence of family members (for better or worse) in the decision-making process, the role that inadequate palliative care may play in euthanasia requests, and the so called “double effect” experienced when increased doses of morphine, necessary for symptom alleviation, also hasten death. The doctors in these casestudies are especially aware of this last issue. As Pool notes, patients may be considering euthanasia or actually request it, while, at the same time, requiring increasing doses of pain medication. At such a time “it is only the physician’s own interpretation of his or her motive that determines whether his or her actions are euthanasia or normal medical practice.” This subjective interpretation influences the physician’s interactions with the patient, family, and nursing staff, as well as how the death is reported. Contrary to expectations, many of the euthanasia requests Pool reports do not stem from the absence of adequate palliative care and, especially, inadequate pain control. He considers the “right to selfdetermination,” expressed as a desire to be in control, a key aspect of Dutch culture, making control over one’s death the most important element of a good death. Recent reports of the Oregon experience with physician-assisted suicide (PAS)
suggest this sentiment may not be uniquely Dutch, as concerns about loss of control are reported to play a very significant role in PAS requests in that state. Although the issues raised in Pool’s study are challenging, the method of the study has led to a style of presentation that can be tedious. The case studies are constructed from lengthy interviews with patients, family members, and professionals, which are presented in great detail (sparing none of the ambivalence of all parties). Interest in this book will likely be limited to medical anthropologists and serious scholars of euthanasia and physician-assisted suicide. Dr. Schwartz is Psychiatrist-inChief and Vice President, Behavioral Health at the Institute of Living/Hartford Hospital and Associate Professor of Psychiatry at the University of Connecticut School of Medicine.
The Hospice Heritage: Celebrating Our Future Edited by Inge B. Corless, RN, Ph.D., FAAN, and Zelda Foster, M.S.W. The Haworth Press, Inc. New York, 1999 270 pages plus index, ISBN 0-78900847-5, $29.95 Reviewed by Carolyn Turvey, Ph.D.
T
he Hospice Heritage: Celebrating Our Future is an edited collection of articles about the development of hospice care in the United States. It reads like a progress report because it reviews the early de-
Am J Geriatr Psychiatry 11:3, May-June 2003
Book Reviews velopment of hospice, progress made until now, and issues that need to be addressed in order for hospice to remain a viable part of end-of-life care. The book was copublished as a special edition of The Hospice Journal. Accordingly, it conveys the less formal tone of a group of seasoned experts in a roundtable discussion, offering candid insights into some of the challenges facing hospice care. The book begins with three chapters about the foundations of hospice, with a contribution from none other than Dame Cicely Saunders, the founder of hospice, and a review by the founders of early hospice in the United States. These personal accounts convey the inspirational story of how genuine caring, combined with a good idea, can start an effective grassroots movement in medicine. Nonetheless, the realities of healthcare politics were inescapable. The section on the early foundations of hospice concludes with a chapter contributed by Larry Beresford and Stephan Conner that reads like a suspense novel. They describe the many ingenious twists and fortuitous breaks that led to the development of the National Hospice Organization and the establishment of the Medicare Hospice Benefit. Perhaps the most important contribution of this book is the frank discussion of the shortcomings of the current structure of hospice. The majority of hospice recipients are middle-class, white adults, and only 15% to 20% of Americans who die are in hospice. Several contributors discuss what is causing this limited access to care, as well as current programs trying to remedy the situation. One of the biggest barriers to receiving hospice care is
the difficulty of making an accurate prognosis for fatal chronic illnesses such as heart failure and chronic obstructive pulmonary disease. Medicare reimbursement eligibility criteria require a prognosis of 6 months or less, which is not easy to make with reasonable certainty for fatal chronic illnesses. Therefore, patients with less predictable chronic illness may not use hospice, though they too would benefit from compassionate end-of-life care. Hospice is currently developing programs to address these problems, as well as to improve methods for documenting effectiveness. The one shortcoming of the book is that these innovations are discussed too briefly, whereas the early history of hospice is recapped by several contributors, making the book quite repetitious. The book would have been far more informative if the contributors discussing new programs or the development of research provided more detail about these programs and left the review of hospice history to the earlier contributors. As it is, the reader is left wanting to know more about the innovations and future directions of hospice, even though the book title suggests this was the express purpose of the book. Nonetheless, the book contains insights into the inner workings of hospice that are not likely to be found elsewhere. The capacity to be openly self-critical reveals that the hospice organization remains as vital and committed to quality endof-life care as it was during its idealistic grass-roots beginning. Carolyn L. Turvey, Ph.D., is Assistant Professor, Department of Psychiatry, University of Iowa College of Medicine.
Am J Geriatr Psychiatry 11:3, May-June 2003
Qualitative Gerontology: A Contemporary Perspective, 2nd Edition Edited by Graham D. Rowles, Ph.D., and Nancy E. Schoenberg, Ph.D. New York, Springer, 2002 290 pp, ISBN 0-8261-1335-4, $44.95 Reviewed by Lisa A. Auslander, Ph.D.
T
his fine book provides a muchneeded appraisal of how the use of qualitative gerontology can provide a richness to exploring the aging experience. The editors have selected contributors who are the top experts in their field, producing chapters that are uniformly scholarly and readable. The book goes beyond a mere black-letter exposition of rudimentary concepts in an effort to present contemporary issues in qualitative methods. The book is not intended to be a comprehensive review of qualitative research in gerontology, but is, instead, a refreshing series of essays that describe and enumerate the changes and advances in the field. The book is suitable for beginning students entering the field as well as experienced gerontologists exploring new trends in this area. In the first section, “Life Stories and Autobiographies,” Gary Kenyon provides eloquent arguments for the utilization of autobiographies in exploring the aging experience. Johannes, Schroots, and Birren’s article is a wonderfully written description of two innovative approaches to generating individual life stories: “The Lifeline Interview Method” and “Guided Autobiography.” The Lifeline Inter-
377