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The Moral Challenge of Alzheimer Disease

Ethical Issues from Diagnosis to Dying

Stephen G. Post

Publication Year: 2000

Society today, writes Stephen Post, is "hypercognitive": it places inordinate emphasis on people's powers of rational thinking and memory. Thus, Alzheimer disease and other dementias, which over an extended period incrementally rob patients of exactly those functions, raise many dilemmas. How are we to view—and value—persons deprived of what some consider the most important human capacities? In the second edition of The Moral Challenge of Alzheimer Disease, Post updates his highly praised account of the major ethical issues relating to dementia care. With chapters organized to follow the progression from mild to severe and then terminal stages of dementia, Post discusses topics including the experience of dementia, family caregiving, genetic testing for Alzheimer disease, quality of life, and assisted suicide and euthanasia. New to this edition are sections dealing with end-of-life issues (especially artificial nutrition and hydration), the emerging cognitive-enhancing drugs, distributive justice, spirituality, and hospice, as well as a critique of rationalistic definitions of personhood. The last chapter is a new summary of practical solutions useful to family members and professionals.

Published by: The Johns Hopkins University Press

Title Page, Copyright

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pp. i-iv

Contents

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pp. v-

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Preface

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pp. vii-viii

This is a second edition of a work that has received wide critical acclaim and also has been appreciated by family caregivers. Since 1995, however, when The Moral Challenge of Alzheimer Disease was first published, many relevant scientific and social changes have occurred. Further, my own thinking has matured and evolved. The reader will still find the terms that I coined in 1995, such as the...

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Acknowledgments

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pp. ix-

I thank the Cleveland Chapter of the Alzheimer’s Association for facilitating an estimated forty focus-group sessions on ethical issues with family caregivers and persons with mild dementia. I am grateful to Stephen McConnell, Ph.D., senior vice president for public policy of the association, as well as his colleague in charge of chapter advocacy, Michael Splaine, for facilitating my educational efforts with chapters...

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1 The Moral Challenge of Alzheimer Disease: Defining the Task

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pp. 1-19

Seldom does human experience require more courage than in living with the diagnosis and the gradual decline of irreversible progressive dementia. While the body of a person with dementia often will remain strong for a number of years, mental capacities as well as the accumulated competencies and memories of a lifetime painfully slip away. This slippage is less emotionally traumatic for affected individuals only when...

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2 The Family Caregiver: Partnership in Hope

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pp. 20-43

The first task of dementia ethics is to secure the underpinnings of care for people who are affected by progressive dementia. Once care is in place, the issues that emerge in the natural course of the disease can be addressed in an informed manner. Informal family caregivers are vital in the culture and practice of care. Building on the previous chapter, I wish now to ground the discussion of care in a lived experience. Edna Mae Kincaid had been caring for...

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3 Fairhill Guidelines on Ethics and the Care of People with Alzheimer Disease

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pp. 44-65

In the first two chapters of this book, much of the focus is on the moral challenge of inclusivity and care for deeply forgetful persons and the family’s role in meeting this challenge. The remainder of the book addresses very specific ethical quandaries and issues about which the family and professional caregiver must be critically informed. There is no better way to make this transition to specific issues than to present...

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4 Genetic Education for a Too-Hopeful Public

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pp. 66-77

Family members whose loved one has a diagnosis of AD often ask, “Will I be next?” The answer is that the normal form of AD (onset after age 60) is not genetically caused, although it is true that having a firstdegree relative (a parent or sibling) with AD may somewhat elevate your statistical risk for the disease. Informal estimates are that, at current life expectancies, the risk of eventual AD is about one in five in a random sampling...

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5 The Humane Goal: Enhancing the Well-being of Persons with Dementia

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pp. 78-95

This chapter is about what we should be doing for people with AD, focusing on the goal of enhanced well-being as an alternative to the protraction of morbidity and dying. Before clarifying this goal, however, I offer a critical prelude addressed to those philosophers and ethicists who view with skepticism our concern with enhanced well-being in dementia care because persons with dementia lack certain rationalistic features. ...

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6 Dying with Dignity: The Case against Artificial Nutrition and Hydration

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pp. 96-109

Of the 1.8 million persons with AD in nursing homes, an estimated 76,500 are in the mild stage, 323,000 are in the moderate stage, and 450,000 are in the advanced stage (Welch, Walsh, and Larson 1992). The advanced stage is usually marked by certain major thresholds of decline, including loss of the capacities to communicate by speech and to recognize loved ones and loss of control of bowel and bladder. AD is a terminal...

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7 An Argument against Assisted Suicide and Euthanasia in the Context of Progressive Dementia

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pp. 110-126

AD and other irreversible neurodegenerative diseases figure prominently in the debate over physician-assisted suicide and euthanasia. The policies that emerge from this debate will have monumental significance for people with dementia and will greatly affect social attitudes toward the arduous task of providing care, as preemptive death is cheaper and easier. What is cheap and easy, however, may not be best. While I recommend to all persons with AD, their families, and professionals that a...

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8 Toward a New Ethics of Dementia Care

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pp. 127-142

What I have written in these pages about caregivers, ethics, and the person with dementia is based not on a set of incontrovertible facts but on the weight of human experience. In the tradition of Aristotle’s practical reasoning and consistent with so-called grounded theories of knowledge, I endeavor to found knowledge in attentive listening and interpretation of the consensus of feeling and thinking among the AD constituency. ...

References

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pp. 143-155

Index

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pp. 157-162

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About the Author

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pp. 163-

Stephen G. Post, Ph.D., is professor and associate director for educational programs, Center for Biomedical Ethics, School of Medicine, Case Western Reserve University. He is a senior research scholar in the Becket Institute at St. Hugh’s College, Oxford University. Ethics editor for the journal Alzheimer Disease and Associated Disorders, Post is also a member of the Medical and Scientific Advisory Panel of Alzheimer’s Disease International. ...


E-ISBN-13: 9780801870156
E-ISBN-10: 0801870151
Print-ISBN-13: 9780801864100
Print-ISBN-10: 0801864100

Page Count: 176
Publication Year: 2000

Edition: second edition