Ethical Foundations of Palliative Care for Alzheimer Disease

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  • Edition: 1st
  • Format: Paperback
  • Copyright: 2010-08-01
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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; S?ren 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.

Author Biography

Ruth B. Purtilo, Ph.D. is James Marsh Presidential Professor-at-Large at the University of Vermont and 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.

Table of Contents

Forewordp. ix
Prefacep. xiii
Acknowledgmentsp. xvii
List of Contributorsp. xix
Introduction: Historical Overview of a current Global Challengep. 1
The Health Care Challenge of Alzheimer Disease: Basic Societal, Pathological, and Clinical Issuesp. 5
Darkness Cometh: Personal, Social, and Economic Burdens of Alzheimer Diseasep. 7
Neuropathology and Symptomatology in Alzheimer Disease: Implications for Caregiving and Competencep. 24
The Clinical Challenge of Uncertain Diagnosis and Prognosis in Patients with Dementiap. 47
European Voices on U.S. and European Models' of Palliative Carep. 59
Expanding the Scope of Palliative Carep. 61
Hospital-based Palliative Care and Dementia, or What Do We Treat Patients For and How Do We Do It?p. 80
Elderly Persons with Advanced Dementia: An Opportunity for a Palliative Culture in Medicinep. 97
Philosophical and Theological Explorationsp. 113
Autonomy and the Lived Body in Cases of Severe Dementiap. 115
The Moral Self as Patientp. 131
The Practice of Palliative Care and the Theory of Medical Ethics: Alzheimer Disease as an Examplep. 146
Clinical Ethics Issues: Focus on Patients and Caregiversp. 161
The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer Diseasep. 163
Advance Directives and End-of-Life Decision Making in Alzheimer Disease: Practical Challengesp. 181
Saying No to Patients with Alzheimer Disease: Rethinking Relations among Personhood, Autonomy, and Worldp. 200
The Ethical Challenge of Treating Pain in Alzheimer Disease: A Dental Casep. 218
Alzheimer Disease and Euthanasiap. 226
Organizational Ethics Issues: Educational Initiatives, Laws, and Allocation Decisionsp. 241
The Role of Nurses and Nursing Education in the Palliative Care of Patients and Their Familiesp. 243
Ethical Dimensions of Alzheimer Disease Decision Making: The Need for Early Patient and Family Educationp. 261
Changing Patterns of Protection and Care for Incapacitated Adults: Perspectives from a European Society in Transitionp. 278
Social Marginalization of Persons with Disability: Justice Considerations for Alzheimer Diseasep. 290
Commentary on Part V: A Clinician's Commentary from a Post-Soviet Society on Organizational Issues of Care for Alzheimer Diseasep. 305
Research Underpinnings for an Ethical Model of Palliative Carep. 309
Biomedical Research in Alzheimer Diseasep. 311
Conducting Research in the Alzheimer Disease Population: Balancing Individual, Group, Family, and Societal Interestsp. 320
Drugs and Dementia: Pharmacotherapy and Decision Making by Primary Caregiversp. 330
The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimer's Disease Commentaryp. 343
Framework for an Educational Module for Health Professionalsp. 348
Indexp. 355
Table of Contents provided by Ingram. All Rights Reserved.

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