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.

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