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Preface
- Johns Hopkins University Press
- Chapter
- Additional Information
Preface 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. Today’s student may assume that AD “has always been with us,” but—as the introduction to this book highlights—it is a relative newcomer to the world of identified diseases. Not surprisingly, new information continues to be released about how to diagnose and treat the condition as well as the toll that AD is taking on individuals, families, caregivers in the health professions, and society. Not surprisingly, either, debate about this information flourishes. The personal, clinical, and social burdens of AD slowly are reaching a level of global consciousness. The growing concern is not only that a sufficient level of care be provided but also that care services meet high moral standards. To articulate and implement such standards, we need ethical research and reflection. Moreover, with the recognition that prevention and cure are ultimate goals but may be many years into the future, that AD as an incurable condition calls for palliative measures, and that the scope and utility of palliative interventions are still being assessed, we identified the need to focus on ethical foundations of palliative care that will serve at least U.S. and European societies well in their attempts to deal humanely with the challenge AD poses. The purpose of this book is to provide a resource for: • health professionals, policymakers, and ethicists on both sides of the Atlantic who are becoming aware of and beginning to address challenges imposed on individuals, family members, and society by the presence of AD; m • philosophers and theologians who are prompted to rethink such basic notions as dignity, personal identity, autonomy, authenticity, solidarity, and community in face of the presence of AD; and • other scholars and policymakers who are focused on creating a just allocation of resources but who are finding themselves pressed to accommodate the financial and other burdens of the condition. All of these groups must make decisions in, add to the scholarship about, provide thoughtful input into, or prepare others for situations involving palliative care for persons with AD. Today these activities must be carried out within a largely unexplored ethical terrain, since in the main the ethical issues, with rare exceptions, remain at the margins of consideration in mainstream U.S. and European bioethics. This book adds relevant expertise while redressing an increasingly serious gap in the literature. Claiming what we saw as an important opportunity to provide leadership in this emerging area, the editors of this volume contacted thirty scholars whom we believed were not only qualified but would be willing to contribute to a joint European —U.S. exploration into the ethical foundations of palliative care for AD. Each was to participate in the dialogue over a period of at least three years. The twenty-two who responded favorably included health professionals (physicians, nurses, a physical therapist, a dentist) and scholars in the fields of bioethics, philosophy , and law. Everyone contributed a draft manuscript to be critiqued in a working conference sponsored by the Greenwall Foundation, New York. The conference was held in Berg en Dal, Netherlands, in November 2001. Participants returned home to further develop their articles as well as engage in continuing online discussion with each other and other scholars in the fields represented. During the next two years, the articles were updated and further refined, then peer reviewed in preparation for publication in this volume. Several practical challenges have arisen in this multidisciplinary, international exploration. One was the term to use in referring to persons who have AD. Authors varied in their terminology, some using“demented patient”or“patients with dementia”as well as“patients with Alzheimer disease.”Through discussion, we learned that the term “demented” is more acceptable in Europe than in the United States. In any case, we were aware that any terminology is a reflection of moral viewpoints. For example, a quandary arose over use of the term “Alzheimer patient.” The U.S. Alzheimer’s Association and several other U.S. groups xiv Preface [54.81.185.66] Project MUSE (2024-03-19 13:09 GMT) are trying to get away from that designation, substituting, instead, “patient [or, preferably, person] with Alzheimer disease...