Ethical Foundations of Palliative Care for Alzheimer Disease

by Purtilo, Ruth B.

• ISBN13: 9780801898396
• ISBN10: 0801898390
• Edition: 1st
• Format: Paperback
• Copyright: 2010-08-01
• Publisher: JOHNS HOPKINS UNIV PRESS

Summary

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., Hopital 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.

Author Biography

Ruth B. Purtilo, Ph.D. is James Marsh Presidential Professor-at-Large at the University of Vermont and 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.

Table of Contents

Foreword	p. ix
Preface	p. xiii
Acknowledgments	p. xvii
List of Contributors	p. xix
Introduction: Historical Overview of a current Global Challenge	p. 1
The Health Care Challenge of Alzheimer Disease: Basic Societal, Pathological, and Clinical Issues	p. 5
Darkness Cometh: Personal, Social, and Economic Burdens of Alzheimer Disease	p. 7
Neuropathology and Symptomatology in Alzheimer Disease: Implications for Caregiving and Competence	p. 24
The Clinical Challenge of Uncertain Diagnosis and Prognosis in Patients with Dementia	p. 47
European Voices on U.S. and European Models' of Palliative Care	p. 59
Expanding the Scope of Palliative Care	p. 61
Hospital-based Palliative Care and Dementia, or What Do We Treat Patients For and How Do We Do It?	p. 80
Elderly Persons with Advanced Dementia: An Opportunity for a Palliative Culture in Medicine	p. 97
Philosophical and Theological Explorations	p. 113
Autonomy and the Lived Body in Cases of Severe Dementia	p. 115
The Moral Self as Patient	p. 131
The Practice of Palliative Care and the Theory of Medical Ethics: Alzheimer Disease as an Example	p. 146
Clinical Ethics Issues: Focus on Patients and Caregivers	p. 161
The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer Disease	p. 163
Advance Directives and End-of-Life Decision Making in Alzheimer Disease: Practical Challenges	p. 181
Saying No to Patients with Alzheimer Disease: Rethinking Relations among Personhood, Autonomy, and World	p. 200
The Ethical Challenge of Treating Pain in Alzheimer Disease: A Dental Case	p. 218
Alzheimer Disease and Euthanasia	p. 226
Organizational Ethics Issues: Educational Initiatives, Laws, and Allocation Decisions	p. 241
The Role of Nurses and Nursing Education in the Palliative Care of Patients and Their Families	p. 243
Ethical Dimensions of Alzheimer Disease Decision Making: The Need for Early Patient and Family Education	p. 261
Changing Patterns of Protection and Care for Incapacitated Adults: Perspectives from a European Society in Transition	p. 278
Social Marginalization of Persons with Disability: Justice Considerations for Alzheimer Disease	p. 290
Commentary on Part V: A Clinician's Commentary from a Post-Soviet Society on Organizational Issues of Care for Alzheimer Disease	p. 305
Research Underpinnings for an Ethical Model of Palliative Care	p. 309
Biomedical Research in Alzheimer Disease	p. 311
Conducting Research in the Alzheimer Disease Population: Balancing Individual, Group, Family, and Societal Interests	p. 320
Drugs and Dementia: Pharmacotherapy and Decision Making by Primary Caregivers	p. 330
The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimer's Disease Commentary	p. 343
Framework for an Educational Module for Health Professionals	p. 348
Index	p. 355
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