Ethical foundations of palliative care for Alzheimer disease

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書誌事項

Ethical foundations of palliative care for Alzheimer disease

edited by Ruth B. Purtilo and Henk A.M.J. ten Have ; foreword by christine K. Cassel

Johns Hopkins University Press, 2010

Johns Hopkins Paperback ed.

  • pbk.

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内容説明・目次

内容説明

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; Soren 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.

目次

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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