Ethical Foundations of Palliative Care for Alzheimer Disease [Hardcover]

Ruth B. Purtilo (Editor), Henk A.M.J. ten Have (Editor), Christine K. Cassel (Foreword)

Book Description

ISBN-10: 0801878705 | ISBN-13: 978-0801878701 | Publication Date: May 3, 2004 | Edition: 1

Alzheimer disease afflicts more than twelve million people worldwide, and its incidence is increasing at a staggering rate. People with the disorder are living longer than have those in previous generations, and they require interventions for quality-of-life issues associated with palliative care. However, the symptoms of Alzheimer disease often fail to place such persons into settings where palliative care resources are available to them. Indeed, clinicians and other caregivers may be unsure about what constitutes effective palliation in these cases. At the same time, the ethical issues involved in providing end-of-life care to persons with Alzheimer disease remain on the margins of mainstream bioethics.

In Ethical Foundations of Palliative Care for Alzheimer Disease, leading ethicists and clinicians from the United States and Europe explore ethical and scientific concerns about the diagnosis and prognosis of Alzheimer disease, challenges arising from applying palliative procedures to its symptoms, key philosophical and theological concepts central to our understanding of the disease and to end-of-life decisions, and the changing patterns of relevant medical, social, and economic policies. Cross-cultural, multidisciplinary, and state-of-the-art, this volume is a unique and important resource for bioethicists, clinicians, and policy makers everywhere.

Contributors: David A. Bennahum, M.D., University of New Mexico; Pierre Boitte, Ph.D., Catholic University of Lille, France; Roger A. Brumback, M.D., Creighton University Medical Center; Wim J. M. Dekkers, M.D., Ph.D., University Medical Centre Nijmegen, The Netherlands; Elizabeth Furlong, R.N., Ph.D., J.D., Creighton University Medical Center; Eugenijus Gefenas, M.D., Ph.D., Vilnius University, Lithuania; Bert Gordijn, Ph.D., University Medical Centre Nijmegen, The Netherlands; Amy M. Haddad, R.N., Ph.D., Creighton University Medical Center; Søren Holm, M.D., Ph.D., Dr.Med.Sci., University of Manchester; Franz J. Illhardt, D.D., Ph.D., Freiburg University; Rien Janssens, Ph.D., University Medical Centre Nijmegen, The Netherlands; Givi Javashvili, M.D., Ph.D., State Medical Academy of Georgia, Tbilisi; Judith Lee Kissell, Ph.D., Creighton University Medical Center; Gunilla Nordenram, D.D.S., Ph.D., Karolinska Institute, Stockholm; Richard L. O'Brien, M.D., Creighton University Medical Center; Marcel G. M. Olde Rikkert, M.D., Ph.D., University Medical Centre Nijmegen, The Netherlands; Winifred J. Ellenchild Pinch, R.N., Ed.D., Creighton University Medical Center; Patricio F. Reyes, M.D., Creighton University Medical Center; Anne-Sophie Rigaud, M.D., Ph.D., Hôpital Broca, Paris; Linda S. Scheirton, Ph.D., Creighton University Medical Center; Jos V. M. Welie, M.Med.S., J.D., Ph.D., Creighton University Medical Center.

Editorial Reviews

From The New England Journal of Medicine

Death with dementia challenges a society not only to rethink but also to revalue its health care system. Moreover, as Ethical Foundations of Palliative Care for Alzheimer Disease reveals, care for persons dying with dementia exposes bioethics as a profession that has not adequately risen to the moral challenges posed by Alzheimer's disease. The problems of dementia far exceed its frightening epidemiology and economic effect. They expose the hardening of the categories of experts who advocate a scientifically driven, technological fix for all the ills of aging as well as the limitations of approaches to ethics that are based on principle and dominated by autonomy. Palliative care emerged out of social concern for improving the quality of life at the end of life. As this book points out, dementia came late to the attention of the movement. Early in the history of palliative care, its proponents opposed euthanasia. Given the book's attempt to juxtapose the U.S. perspective (at least as it is expressed in Omaha, Nebraska, where Purtilo is based) and the Dutch (as expressed in Nijmegen, the Netherlands, where ten Have resides), there is surprisingly little information about the Dutch or U.S. experience with physician-assisted suicide or euthanasia. One chapter on the topic of euthanasia in the Netherlands is disappointingly unbalanced; it concludes that euthanasia should never be permitted for anyone who has dementia, whether or not he or she is incompetent. Throughout the book, the different views from the United States and Europe should have been brought into better proximity in terms of broad cultural understandings and integrated approaches. Language offers one example. How should we label people who suffer from progressive, age-related cognitive impairment? Are they "victims"? The establishment of the Declaration of Berg en Dal, a list of ethical guidelines that resulted from the conference held in the city for which the list was named and on which the book was based, was an attempt to generate some consensus among the participants. However, a more elaborate portrayal of the process of deliberation would have been helpful. The declaration begins with a defense of the importance of dignity, a key value for end-of-life care. Today, the concept of Alzheimer's disease is being challenged by the introduction of new terms, such as "mild cognitive impairment," and by the confusion caused by the overlapping features of syndromes such as vascular dementia and Alzheimer's disease. In fact, any book about the moral challenges of Alzheimer's disease should not ignore the issues related to values that surround the use of the term "Alzheimer's disease" itself. Is Alzheimer's disease really one form of brain aging? The condition is, first and foremost, not a brain disease but a label that we apply to people. Can the quality of life and the dignity of persons with cognitive challenges be enhanced by an avoidance of the tendency to pathologize aging? Voices that are not well heard in this book but are at least present include those from Eastern Europe. These voices, in some sense, represent the rest of the world outside the wealthy countries of North America and Europe. These Eastern European authors highlight the competing priorities that their societies are facing in regard to public health. In our enthusiasm to address the challenges of age-related dementias, we must not forget the health challenges that face children around the world. Even in the domain of dementia, should we not be paying more attention to the damage to children's brains caused by their exposure to lead and other toxins, or to head injury? Preparation for death through the development of ethical wills and advance directives should be an activity of early, not late, life. Philosophers and spiritual leaders suggest that the incorporation of the notion of personal mortality into life can add vitality and a sense of freedom to our lives. Death is not the last chapter of our lives, because our legacies extend in the minds and hearts of those we touched while on the planet. The values and challenges involved in the provision of appropriate end-of-life care for those who suffer from age-related cognitive impairment go far beyond those raised in this book. Even so, the editors and authors ought to be congratulated for creating a space that allows us to retell our individual and social stories of dying with dementia. Peter J. Whitehouse, M.D., Ph.D.
Copyright © 2004 Massachusetts Medical Society. All rights reserved. The New England Journal of Medicine is a registered trademark of the MMS.

Review

The editors ought to be congratulated for creating a space that allows us to retell our individual and social stories of dying with dementia.

(Peter Whitehouse, M.D., Ph.D New England Journal of Medicine 2005)

Books like this, which take a global view of the effects of disease, are much needed. All of us working in palliative care would benefit from reading this book as it exposes assumptions derived from the treatment mostly of cancer patients and encourages us to review our thoughts on the intrinsic value of all life, however opaque.

(Palliative Medicine 2005)

Offers valuable insights into the philosophy and practice of palliative care in AD from perspectives of a group of American and European experts... It raises important questions and poses solutions to a variety of pressing clinical issues.

(American Journal of Alzheimer's Disease and Other Dementias 2006)

This volume is a definite resource for any geriatric care manager... It presents many viewpoints and provides a number of good insights.

(Anita H. Miller Inside GCM 2005)

Highly recommended for physicians and other health care professionals.

(Michael Gordon Canadian Journal on Aging )

A short book review cannot do justice to the magnitude and worth of this book... It is a compendium of hope.

(David Kuhl Ageing and Society )

This is the finest set of perspectives on dementia, Alzheimer disease, and dying that has yet been produced. It combines some of the best thinking in the United States with insights from Europe, making it truly unique. Highly recommended for specialists in dementia care, hospice, and bioethicists.

(Stephen G. Post, Case Western Reserve University )

See all Editorial Reviews

Product Details

• Hardcover: 396 pages
• Publisher: The Johns Hopkins University Press; 1 edition (May 3, 2004)
• Language: English
• ISBN-10: 0801878705
• ISBN-13: 978-0801878701
• Product Dimensions: 9.3 x 6.2 x 1.2 inches
• Shipping Weight: 1.5 pounds
• Amazon Best Sellers Rank: #2,472,260 in Books (See Top 100 in Books)