Ethical Foundations of Palliative Care for Alzheimer Disease

Erscheinungsjahr 2004
ISBN: 978-0-8018-7870-1
Verlag: Johns Hopkins University Press

Buch, Englisch, 396 Seiten, Format (B × H): 152 mm x 229 mm, Gewicht: 680 g

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.

Autoren/Hrsg.

Purtilo, Ruth B.

ten Have, Henk A.M.J.

Weitere Mitwirkende

Cassel, Christine K.

Inhaltsverzeichnis

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

Über Autor(innen)

ten Have, Henk A.M.J.
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.

Purtilo, Ruth B.
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.

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.