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Cover image of Ethical Foundations of Palliative Care for Alzheimer Disease
Cover image of Ethical Foundations of Palliative Care for Alzheimer Disease
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Ethical Foundations of Palliative Care for Alzheimer Disease

edited by Ruth B. Purtilo, Ph.D., and Henk A.M.J. ten Have, M.D., Ph.D.
foreword by Christine K. Cassel, M.D.
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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...

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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.

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Reviews

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

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

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

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

Highly recommended for physicians and other health care professionals.

— Michael Gordon — Canadian Journal on Aging
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About

Book Details

Publication Date
Status
Available
Trim Size
6
x
9
Pages
396
ISBN
9780801898396
DOI
Illustration Description
6 line drawings
Subject
Table of Contents

Foreword
Preface
Acknowledgments
List of Contributors
Introduction. Historical Overview of a Current Global Challenge
Part I: The Health Care Challenge of Alzheimer Disease: Basic Societal, Pathological

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Foreword
Preface
Acknowledgments
List of Contributors
Introduction. Historical Overview of a Current Global Challenge
Part I: The Health Care Challenge of Alzheimer Disease: Basic Societal, Pathological, and Clinical Issues
Chapter 1. Darkness Cometh: Personal, Social, and Economic Burdens of Alzheimer Disease
Chapter 2. Neuropathology and Symptomatology in Alzheimer Disease: Implications for Caregiving and Competence
Chapter 3. The Clinical Challenge of Uncertain Diagnosis and Prognosis in Patients with Dementia
Part II: European Voices on U.S. and European Models of Palliative Care
Chapter 4. Expanding the Scope of Palliative Care
Chapter 5. Hospital-based Palliative Care and Dementia, or What Do We Treat Patients For and How Do We Do It?
Chapter 6. Elderly Persons with Advanced Dementia: An Opportunity for a Palliative Culture in Medicine
Part III: Philosophical and Theological Explorations
Chapter 7. Autonomy and the Lived Body in Cases of Severe Dementia
Chapter 8. The Moral Self as Patient
Chapter 9. The Practice of Palliative Care and the Theory of Medical Ethics: Alzheimer Disease as an Example
Part IV: Clinical Ethics Issues: Focus on Patients and Caregivers
Chapter 10. The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer Disease
Chapter 11. Advance Directives and End-of-Life Decision Making in Alzheimer Disease: Practical Challenges
Chapter 12. Saying No to Patients with Alzheimer Disease: Rethinking Relations among Personhood, Autonomy, and World
Chapter 13. The Ethical Challenge of Treating Pain in Alzheimer Disease: A Dental Case
Chapter 14. Alzheimer Disease and Euthanasia
Part V: Organizational Ethics Issues: Educational Initiatives, Laws, and Allocation Decisions
Chapter 15. The Role of Nurses and Nursing Education in the Palliative Care of Patients and Their Families
Chapter 16. Ethical Dimensions of Alzheimer Disease Decision Making: The Need for Early Patient and Family Education
Chapter 17. Changing Patterns of Protection and Care for Incapacitated Adults: Perspectives from a European Society in Transition
Chapter 18. Social Marginalization of Persons with Disability: Justice Considerations for Alzheimer Disease
Commentary on Part V: A Clinician's Commentary from a Post-Soviet Society on Organizational Issues of Care for Alzheimer Disease
Part VI: Research Underpinnings for an Ethical Model of Palliative Care
Chapter 19. Biomedical Research in Alzheimer Diseas
Chapter 20. Conducting Research in the Alzheimer Disease Population: Balancing Individual, Group, Family, and Societal Interests
Chapter 21. Drugs and Dementia: Pharmacotherapy and Decision Making by Primary Caregivers
Appendix A. The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimer's Disease
Appendix B. Framework for an Educational Module for Health Professionals
Index

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Author Bios
Featured Contributor

Ruth B. Purtilo, Ph.D.

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.
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Henk A.M.J. ten Have, MD, PhD
Featured Contributor

Henk A.M.J. ten Have, MD, PhD

Henk A.M.J. ten Have, MD, PhD (AMSTERDAM, NL) is a research professor in bioethics at Universidad Anáhuac México and professor emeritus at Duquesne University's Center for Healthcare Ethics. He is the author of Wounded Planet: How Declining Biodiversity Endangers Health and How Bioethics Can Help and the coauthor of Bioethics, Healthcare and the Soul.
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