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Ethical Foundations of Palliative Care for Alzheimer Disease

edited by Ruth B. Purtilo, Ph.D., and Henk A.M.J. ten Have, M.D., Ph.D. foreword by Christine K. Cassel, M.D.

Publication Year: 2010

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; Søren 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., Hôpital 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.

Published by: The Johns Hopkins University Press

Cover [Includes Copyright and Title Pages]

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pp. v-viii

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pp. ix-xi

Alzheimer disease has been a classic paradigm in medical ethics. The progressive and inexorable loss of cognitive function challenges every principle on which Western medical ethics is based. These include the fundamental respect for the autonomy of the individual on which the principles of informed consent are based, premised on an individual’s capacity and inalienable right to...

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pp. xiii-xvi

The editors and chapter contributors invite you, the reader, into a dialogue focused on a set of engaging and important issues emerging around Alzheimer disease (AD). As a group, we are exploring the ethical foundations of a palliative care approach to AD, drawing on the perspectives of scholars and clinicians in Europe and the United States. ...


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pp. xvii-xviii

List of Contributors

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pp. xix-xxi

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Introduction: Historical Overview of a Current Global Challenge

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pp. 1-4

Alzheimer disease (AD) was identified as a particular disease in 1910. The construct was rooted in the concepts and methods of psychiatry and neuropathology in nineteenth-century Germany. However, its existence was disputed from the time of its identification; in particular, it was controversial whether it was distinct from senile dementia and the normal processes of aging...

Part I: The Health Care Challenge of Alzheimer Disease: Basic Societal, Pathological, and Clinical Issues

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ONE: Darkness Cometh: Personal, Social, and Economic Burdens of Alzheimer Disease

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pp. 7-23

Alzheimer disease (AD) and related dementias impose immensely heavy burdens on individuals, families, and society. Those with AD suffer terribly, caregivers are robbed of familial and social relationships, families and society pay exorbitant costs for care and lost productivity. ...

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TWO: Neuropathology and Symptomatology in Alzheimer Disease: Implications for Caregiving and Competence

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pp. 24-46

Alzheimer disease (AD) is one of many conditions that produce the clinical syndrome of dementia, which is the insidiously progressive loss of intellectual, cognitive, and social abilities (Brumback & Leech, 1994). Dementia can occur at any age (e.g., adrenoleukodystrophy causing dementia in late childhood) (Riva, Boca, & Bruzzone, 2000). ...

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THREE: The Clinical Challenge of Uncertain Diagnosis and Prognosis in Patients with Dementia

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pp. 47-58

Alzheimer disease (AD) is most often thought of by the general public as being characterized by memory loss. But most humans experience a loss of memory with illness or old age, and in my years as a clinician I have learned that it can be difficult to distinguish a dementia from common age-related forgetfulness, although recent research would suggest that the latter...

Part II: European Voices on U.S. and European Models of Palliative Care

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FOUR: Expanding the Scope of Palliative Care

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pp. 61-79

The number of persons with Alzheimer disease will increase substantially over the forthcoming decades, as O’Brien illustrated in the first part of this book. A report of the Health Council of the Netherlands, for example, estimated that in the year 2000, one in every ninety-three people in the country had dementia. ...

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FIVE: Hospital-based Palliative Care and Dementia, or What Do We Treat Patients For and How Do We Do It?

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pp. 80-96

This chapter focuses on hospital-based palliative care in dementia. The symptoms of dementia are not of course limited to Alzheimer disease (AD), but almost all of what we offer applies well to the specific situation of AD. ...

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SIX: Elderly Persons with Advanced Dementia: An Opportunity for a Palliative Culture in Medicine

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pp. 97-111

For the last twenty to thirty years in the history of Western medicine, the risks of neglect because of therapeutic powerlessness have been endured by two categories of patients: patients who were going to die and those with dementia. ...

Part III: Philosophical and Theological Explorations

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SEVEN: Autonomy and the Lived Body in Cases of Severe Dementia

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pp. 115-130

In many countries, physical restraints and other coercive measures are daily practice in the care for persons with dementia. Mechanical measures that must guarantee the safety of the patient and of fellow patients are frequently taken, and these necessarily restrict the freedom of the patient. ...

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EIGHT: The Moral Self as Patient

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pp. 131-145

Our health care successes over the last few decades now confront us with the necessity of rethinking our model of medicine, our health care policy, and our medical ethics. We have lengthened life and prevented and controlled disease. But our mastery also presents us with the problems of elderly persons who, while they survive what might once have killed them at a younger...

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NINE: The Practice of Palliative Care and the Theory of Medical Ethics: Alzheimer Disease as an Example

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pp. 146-159

It is far from accidental that the origins of modern medical ethics and the origins of modern palliative care both can be traced to the end of the 1960s (Janssens & ten Have, 1999). Both movements came forth out of moral discomfort with a health care system that primarily focused on cure and life prolongation, sometimes employing disproportionate technological interventions. ...

Part IV: Clinical Ethics Issues: Focus on Patients and Caregivers

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TEN: The Tendency of Contemporary Decision-making Strategies to Deny the Condition of Alzheimer Disease

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pp. 163-180

Even the most cursory review of the contemporary bioethical literature reveals that respect for the autonomy of patients has become the leading bioethical principle, easily trumping more traditional principles such as the principles of nonmaleficence and beneficence. This principle has been operationalized most clearly in the patient’s right to grant informed consent to pro-...

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ELEVEN: Advance Directives and End-of-Life Decision Making in Alzheimer Disease: Practical Challenges

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pp. 181-199

Practical challenges in palliative care, advance directives, and end-of-life decision making in the context of Alzheimer disease (AD) encompass all individuals in these circumstances: the person who has been diagnosed as well as those who serve as caregivers, both professional and lay persons, and anyone who in turn is in contact with them. ...

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TWELVE: Saying No to Patients with Alzheimer Disease: Rethinking Relations among Personhood, Autonomy, and World

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pp. 200-217

During a geriatric symposium at Freiburg University, a visiting theologian introduced his lecture with the remark that he liked to be invited to Freiburg because of the chance to visit his elderly father, who had dementia and lived in a nursing home nearby. ...

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THIRTEEN: The Ethical Challenge of Treating Pain in Alzheimer Disease: A Dental Case

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pp. 218-225

Dementia may be defined as an acquired global impairment of intellect, memory, and personality, but without impairment of consciousness. Many types of dementia disorders exist, of which Alzheimer disease (AD) is the most common. AD involves serious communication problems, speech being limited to a few words or incomprehensible sounds. ...

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FOURTEEN: Alzheimer Disease and Euthanasia

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pp. 226-239

Alzheimer disease (AD) is the most common form of irreversible dementia. It is a progressive, irreversible brain disorder. There is still a lot to learn about the causes of the disease and a cure has yet to be developed. Among the symptoms are memory loss, confusion, impaired judgment, personality changes, disorientation, and loss of language skills. ...

Part V: Organizational Ethics Issues: Educational Initiatives, Laws, and Allocation Decisions

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FIFTEEN: The Role of Nurses and Nursing Education in the Palliative Care of Patients and Their Families

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pp. 243-260

A hospice program is one ethical model of delivering palliative care to patients with Alzheimer disease (AD) in the terminal stages. This chapter, while addressing the role of nurses in promoting a palliative model of hospice care, also provides insight into nursing education challenges in this area. ...

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SIXTEEN: Ethical Dimensions of Alzheimer Disease Decision Making: The Need for Early Patient and Family Education

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pp. 261-277

She had been with us for one month. She seemed somewhat detached or depressed, perhaps. She stood in the kitchen at dusk, with the last vestiges of light coming through the window illuminating her frail figure as she moved among the shadows. You could see the individual strands of grey hair recklessly uplifted in slight disarray, as the stream of remaining light...

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SEVENTEEN: Changing Patterns of Protection and Care for Incapacitated Adults: Perspectives from a European Society in Transition

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pp. 278-289

The idea of developing a European-American dialogue on palliative care for persons with Alzheimer disease (AD) presupposes two more or less homogeneous groups of discussion partners bringing different perspectives on the issue. The problem is, however, that the European counterpart of this dialogue is no longer a homogeneous one. ...

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EIGHTEEN: Social Marginalization of Persons with Disability: Justice Considerations for Alzheimer Disease

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pp. 290-304

The trends that point to an increasing number of persons with Alzheimer disease (AD) worldwide and the perceptions of escalating financial and other burdens occasioned by this increase have prompted growing discussion by governments, private insurers, and national and international organizations about how best to allocate resources to address the new challenges. ...

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Commentary on Part V: A Clinician’s Commentary from a Post-Soviet Society on Organizational Issues of Care for Alzheimer Disease

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pp. 305-308

In this part of the book (part V), my collaborators have addressed organizational issues of care for persons with Alzheimer disease (AD) raising ethical aspects of care. They emphasize correctly that the goal is to actually change the lives of people with AD. But for these changes to occur, a variety of organizational issues must be given attention, including development of an ap-...

Part VI: Research Underpinnings for an Ethical Model of Palliative Care

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NINETEEN: Biomedical Research in Alzheimer Disease

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pp. 311-319

Until three and a half decades ago, there was little biomedical research in aging—not in aging in general, nor in Alzheimer disease (AD) in particular. This was largely because for many years societal efforts and resources were geared toward the young. Aging and medical conditions that affect older patients were viewed with fatalism by the lay and scientific communities. ...

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TWENTY: Conducting Research in the Alzheimer Disease Population: Balancing Individual, Group, Family, and Societal Interests

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pp. 320-329

Research into the best ways of providing palliative care for persons with Alzheimer disease (AD) and other dementias is of paramount importance. The number of people with dementia is projected to rise rapidly in most countries (Fratiglioni, DeRonchi, & Aguero Torres, 2000). Although treatments are being developed and marketed, most of them are not targeting the underly-...

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TWENTY-ONE: Drugs and Dementia: Pharmacotherapy and Decision Making by Primary Caregivers

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pp. 330-342

The overall aim of this chapter is to review the literature regarding the experiences of primary caregivers (i.e., family members who care for a person with Alzheimer disease) and decisions about drug therapy. Specifically, the purpose is to describe the experience of acetylcholinesterase inhibitor (AChEI) therapy of primary caregivers of persons...

Appendix A. The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimer’s Disease

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pp. 343-347

Appendix B. Framework for an Educational Module for Health Professionals

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pp. 348-353


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pp. 355-368

E-ISBN-13: 9781421403687
E-ISBN-10: 1421403684
Print-ISBN-13: 9780801898396
Print-ISBN-10: 0801898390

Page Count: 396
Illustrations: 6 line drawings
Publication Year: 2010