Ethical Foundations of Palliative Care for Alzheimer Disease

Foreword

Foreword 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 decide what should be done with his or her own body. As one loses one’s memory , one’s personality, and indeed one’s identity to the dementing illness of Alzheimer disease, all of those principles are called into question. The tidy nostrum of advance directives does not really provide psychological, spiritual, or personal reassurance that one is doing the right thing for a patient who seems to be a different person from the one who executed the directive. Of course, directives themselves have not been used as widely as ethicists had hoped, leaving many people facing decisions throughout the course of their medical care where quality of life must be balanced by surrogate decision makers. Health care professionals who value intelligence—perhaps above all else—struggle to make sense of quality-of-life determinations for a person who does not recognize even the closest family members and must be assisted in every aspect of basic daily living functions. Alzheimer disease has also challenged the deeper philosophies of mind and of identity. The very nature of personhood and the meaning of memory are challenged by this disorder. In the United States, our focus is almost entirely on the rights and values of the individual patient and yet the experience of dementing illness—as much as any other human experience—is one that is shared with family, friends, caregivers, and those who happen to share one’s room in the nursing home. What has been the meaning of the phenomenon of dementia not m only in the person who suffers the illness but also in the person who suffers the experience of watching it happen? Or in the broader community of aging societies around the world? Does it give rise to a collective empathy that transcends individualism? Does it vary from society to society,even within Western nations? Dementing illness has a major role in our understanding of societal attitudes about aging—an issue of enormous importance as the success story of the aging of advanced civilizations worldwide challenges our concepts of family, of priorities , and of the productivity and role of older people in our society. I believe that dementing illness is the single most powerful factor in the negative attitudes about aging that occur in our society and throughout the world. If modern biomedical science can find an effective treatment or preventive measure for this disease, it would do more to improve attitudes toward aging than would anything else. This, of course, is vitally important because the vast majority of older people do not have dementia; and as we move into a time in the next few decades when one out of five individuals in this country and in developed European nations that participated in this conference will be over the age of 65, it is essential that this population not be marginalized but rather find an integral and meaningful role in every aspect of society. The stereotype of the elderly person as inevitably “losing it” is an enormous barrier to progress in productive aging. And yet, frailty is an inevitable concomitant of our increased longevity. How we treat our most vulnerable citizens is as much a marker of progress as the advance of biomedical science. Moral dimensions of this challenge are identified and clarified by the authors of the essays in this volume. They treat the issues with the full complexity they deserve, in a spectrum from early diagnosis to endof -life care. The palliative care movement in the United States has reminded modern medicine of human mortality and has shown us that even though we cannot cure many illnesses, it is not true that “there is nothing left to do.” The leaders in palliative care have dramatically shifted our understanding of the role of medicine , health care, and indeed communities and families in enhancing the quality of life to relieve suffering and give meaning to each day. This movement has progressed beyond the pharmacological treatment of pain and the model of an individual with widely metastatic cancer in rapid decline to the less predictable, more prolonged, and more clinically challenging question...