Ethical Foundations of Palliative Care for Alzheimer Disease

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Ruth B. Purtilo, Henk A.M.J. ten Have
JHU Press, Sep 1, 2010 - Medical - 396 pages

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; S°ren 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., H˘pital 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.

 

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Contents

Historical Overview of a Current Global Challenge
1
The Health Care Challenge of Alzheimer Disease Basic Societal Pathological and Clinical Issues
5
European Voices on US and European Models of Palliative Care
59
Philosophical and Theological Explorations
113
Clinical Ethics Issues Focus on Patients and Caregivers
161
Organizational Ethics Issues Educational Initiatives Laws and Allocation Decisions
241
Research Underpinnings for an Ethical Model of Palliative Care
309
Appendix A The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimers Disease
343
Appendix B Framework for an Educational Module for Health Professionals
348
Index
355
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About the author (2010)

Ruth B. Purtilo, Ph.D., is James Marsh Presidential Professor-at-Large at the University of Vermont and a professor emerita of the MGH Institute of Health Professions. Henk A.M.J. ten Have, M.D., Ph.D., is a professor of medical ethics at the University Medical Centre Nijmegen, the Netherlands, and director of the Division of Ethics of Science and Technology, UNESCO, Paris.

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