Ethical Foundations of Palliative Care for Alzheimer Disease

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  • Edition: 1st
  • Format: Hardcover
  • Copyright: 2004-05-01

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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 the Mabel L. Criss Professor of Ethics and Director of the Center for Health Policy and Ethics at Creighton University Medical Center. Henk A.M.J. ten Have, M.D., Ph.D., is 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

Foreword, by Christine K. Cassel ix
Preface xiii
Acknowledgments xvii
List of Contributors xix
Introduction: Historical Overview of a Current Global Challenge 1(4)
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(54)
ONE Darkness Cometh: Personal, Social, and Economic Burdens of Alzheimer Disease
Richard L. O'Brien
TWO Neuropathology and Symptomatology in Alzheimer Disease: Implications for Caregiving and Competence
Roger A. Brumback
THREE The Clinical Challenge of Uncertain Diagnosis and Prognosis in Patients with Dementia
David A. Bennahum
Part II European Voices on U.S. and European Models of Palliative Care 59(54)
FOUR Expanding the Scope of Palliative Care
Henk A.M.J. ten Have
FIVE Hospital-based Palliative Care and Dementia, or What Do We Treat Patients For and How Do We Do It?
Marcel G.M. Olde Rikkert and Anne-Sophie Rigaud
SIX Elderly Persons with Advanced Dementia: An Opportunity for a Palliative Culture in Medicine
Pierre Boitte
Part III Philosophical and Theological Explorations 113(48)
SEVEN Autonomy and the Lived Body in Cases of Severe Dementia
Wim J.M. Dekkers
EIGHT The Moral Self as Patient
Judith Lee Kissell
NINE The Practice of Palliative Care and the Theory of Medical Ethics: Alzheimer Disease as an Example
Rien Janssens
Part IV Clinical Ethics Issues: Focus on Patients and Caregivers 161(80)
TEN The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer Disease
Jos V.M. Wehie
ELEVEN Advance Directives and End-of-Life Decision Making in Alzheimer Disease: Practical Challenges
Winifred J. Ellenchild Pinch
TWELVE Saying No to Patients with Alzheimer Disease: Rethinking Relations among Personhood, Autonomy, and World
Franz J. Illhardt
THIRTEEN The Ethical Challenge of Treating Pain in Alzheimer Disease: A Dental Case
Gunilla Nordenram
FOURTEEN Alzheimer Disease and Euthanasia
Bert Gordijn
Part V Organizational Ethics Issues: Educational Initiatives, Laws, and Allocation Decisions 241(68)
FIFTEEN The Role of Nurses and Nursing Education in the Palliative Care of Patients and Their Families
Elizabeth Furlong
SIXTEEN Ethical Dimensions of Alzheimer Disease Decision Making: The Need for Early Patient and Family Education
Linda S. Scheirton
SEVENTEEN Changing Patterns of Protection and Care for Incapacitated Adults: Perspectives from a European Society in Transition
Eugenijus Gefenas
EIGHTEEN Social Marginalization of Persons with Disability: Justice Considerations for Alzheimer Disease
Ruth B. Purtilo
Commentary on Part V: A Clinician's Commentary from a Post-Soviet Society on Organizational Issues of Care for Alzheimer Disease
Givi Javashvili
Part VII Research Underpinnings for an Ethical Model of Palliative Care 309(34)
NINETEEN Biomedical Research in Alzheimer Disease
Patricio F. Reyes
TWENTY Conducting Research in the Alzheimer Disease Population: Balancing Individual, Group, Family, and Societal Interests
Soren Holm
TWENTY-ONE Drugs and Dementia: Pharmacotherapy and Decision Making by Primary Caregivers
Amy M. Haddad
Appendix A. The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimer's Disease 343(5)
Commentary by Jos V.M. Welie and Bert Gordijn
Appendix B. Framework for an Educational Module for Health Professionals 348(7)
Richard L. O'Brien and Wzm J.M. Dekkers
Index 355

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