Ethical Foundations of Palliative Care for Alzheimer Disease

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.

• ForewordPreface AcknowledgmentsList of Contributors Introduction. Historical Overview of a Current Global ChallengePart I: The Health Care Challenge of Alzheimer Disease: Basic Societal, Pathological, and Clinical IssuesChapter 1. Darkness Cometh: Personal, Social, and Economic Burdens of Alzheimer DiseaseChapter 2. Neuropathology and Symptomatology in Alzheimer Disease: Implications for Caregiving and CompetenceChapter 3. The Clinical Challenge of Uncertain Diagnosis and Prognosis in Patients with DementiaPart II: European Voices on U.S. and European Models of Palliative CareChapter 4. Expanding the Scope of Palliative CareChapter 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 MedicinePart III: Philosophical and Theological ExplorationsChapter 7. Autonomy and the Lived Body in Cases of Severe DementiaChapter 8. The Moral Self as PatientChapter 9. The Practice of Palliative Care and the Theory of Medical Ethics: Alzheimer Disease as an ExamplePart IV: Clinical Ethics Issues: Focus on Patients and CaregiversChapter 10. The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer DiseaseChapter 11. Advance Directives and End-of-Life Decision Making in Alzheimer Disease: Practical ChallengesChapter 12. Saying No to Patients with Alzheimer Disease: Rethinking Relations among Personhood, Autonomy, and WorldChapter 13. The Ethical Challenge of Treating Pain in Alzheimer Disease: A Dental CaseChapter 14. Alzheimer Disease and EuthanasiaPart V: Organizational Ethics Issues: Educational Initiatives, Laws, and Allocation DecisionsChapter 15. The Role of Nurses and Nursing Education in the Palliative Care of Patients and Their FamiliesChapter 16. Ethical Dimensions of Alzheimer Disease Decision Making: The Need for Early Patient and Family EducationChapter 17. Changing Patterns of Protection and Care for Incapacitated Adults: Perspectives from a European Society in TransitionChapter 18. Social Marginalization of Persons with Disability: Justice Considerations for Alzheimer DiseaseCommentary on Part V: A Clinician's Commentary from a Post-Soviet Society on Organizational Issues of Care for Alzheimer DiseasePart VI: Research Underpinnings for an Ethical Model of Palliative CareChapter 19. Biomedical Research in Alzheimer DiseasChapter 20. Conducting Research in the Alzheimer Disease Population: Balancing Individual, Group, Family, and Societal InterestsChapter 21. Drugs and Dementia: Pharmacotherapy and Decision Making by Primary CaregiversAppendix A. The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimer's DiseaseAppendix B. Framework for an Educational Module for Health ProfessionalsIndex

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 2005 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 2005 Highly recommended for physicians and other health care professionals. -- Michael Gordon Canadian Journal on Aging 2006 A short book review cannot do justice to the magnitude and worth of this book... It is a compendium of hope. -- David Kuhl Ageing and Society 2005