Ethical Foundations of Palliative Care for Alzheimer Disease

Contents

Contents Foreword, by Christine K. Cassel ix Preface xiii Acknowledgments xvii List of Contributors xix Introduction: Historical Overview of a Current Global Challenge 1 Henk A.M.J. ten Have and Ruth B. Purtilo Part I / The Health Care Challenge of Alzheimer Disease: Basic Societal, Pathological, and Clinical Issues 5 o n e Darkness Cometh: Personal, Social, and Economic Burdens of Alzheimer Disease 7 Richard L. O’Brien t wo Neuropathology and Symptomatology in Alzheimer Disease: Implications for Caregiving and Competence 24 Roger A. Brumback t h r e e The Clinical Challenge of Uncertain Diagnosis and Prognosis in Patients with Dementia 47 David A. Bennahum m m Part II / European Voices on U.S. and European Models of Palliative Care 59 f o u r Expanding the Scope of Palliative Care 61 Henk A.M.J. ten Have f i v e Hospital-based Palliative Care and Dementia, or What Do We Treat Patients For and How Do We Do It? 80 Marcel G. M. Olde Rikkert and Anne-Sophie Rigaud s i x Elderly Persons with Advanced Dementia: An Opportunity for a Palliative Culture in Medicine 97 Pierre Boitte Part III / Philosophical and Theological Explorations 113 s ev e n Autonomy and the Lived Body in Cases of Severe Dementia 115 Wim J. M. Dekkers e i g h t The Moral Self as Patient 131 Judith Lee Kissell n i n e The Practice of Palliative Care and the Theory of Medical Ethics: Alzheimer Disease as an Example 146 Rien Janssens Part IV / Clinical Ethics Issues: Focus on Patients and Caregivers 161 t e n The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer Disease 163 Jos V. M. Welie vi Contents m m m e l ev e n Advance Directives and End-of-Life Decision Making in Alzheimer Disease: Practical Challenges 181 Winifred J. Ellenchild Pinch t w e lv e Saying No to Patients with Alzheimer Disease: Rethinking Relations among Personhood, Autonomy, and World 200 Franz J. Illhardt t h i rt e e n The Ethical Challenge of Treating Pain in Alzheimer Disease: A Dental Case 218 Gunilla Nordenram f o u rt e e n Alzheimer Disease and Euthanasia 226 Bert Gordijn Part V / Organizational Ethics Issues: Educational Initiatives, Laws, and Allocation Decisions 241 f i f t e e n The Role of Nurses and Nursing Education in the Palliative Care of Patients and Their Families 243 Elizabeth Furlong s i xt e e n Ethical Dimensions of Alzheimer Disease Decision Making: The Need for Early Patient and Family Education 261 Linda S. Scheirton s ev e n t e e n Changing Patterns of Protection and Care for Incapacitated Adults: Perspectives from a European Society in Transition 278 Eugenijus Gefenas e i g h t e e n Social Marginalization of Persons with Disability: Justice Considerations for Alzheimer Disease 290 Ruth B. Purtilo Contents vii m Commentary on Part V: A Clinician’s Commentary from a Post-Soviet Society on Organizational Issues of Care for Alzheimer Disease 305 Givi Javashvili Part VI / Research Underpinnings for an Ethical Model of Palliative Care 309 n i n et e e n Biomedical Research in Alzheimer Disease 311 Patricio F. Reyes t w e n t y Conducting Research in the Alzheimer Disease Population: Balancing Individual, Group, Family, and Societal Interests 320 Søren Holm twenty-one Drugs and Dementia: Pharmacotherapy and Decision Making by Primary Caregivers 330 Amy M. Haddad Appendix A. The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimer’s Disease 343 Commentary by Jos V. M. Welie and Bert Gordijn Appendix B. Framework for an Educational Module for Health Professionals 348 Richard L. O’Brien and Wim J. M. Dekkers Index 355 viii Contents m ...