The Moral Challenge of Alzheimer Disease: Ethical Issues from Diagnosis to Dying

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

44 I Fairhill Guidelines on Ethics and the Care of People with Alzheimer Disease with Peter J. Whitehouse, M.D., Ph.D. three 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 the finding of a major focus group initiative, the Fairhill Dialogue. Some issues touched on in this dialogue are covered elsewhere in this book at greater length, but it is important to include the full dialogue report for the reader to appreciate that the positions I take throughout the book are informed by a consensus process and do not emerge from my solitary consciousness. This dialogue is historically important not only for the resulting publication of the Fairhill Guidelines in an abbreviated form for clinicians (Post and Whitehouse 1995) but also because it inspired representatives from the Alzheimer Society of Canada who audited these focus group sessions to carry out the national Canadian initiative of ethics dialogue that resulted in the publication of “Tough Issues,” featured on the first page of the Toronto Globe and Mail (18 April 1997, A1; Alzheimer Society of Canada 1997). The influence of the Fairhill Dialogue has been widely acknowledged (Fisk et al. 1998). Between October 1993 and June 1994, the Center for Biomedical Ethics of the School of Medicine and the University Alzheimer Center of Case Western Reserve University, together with the Cleveland Chap- ter of the Alzheimer’s Association, sponsored a community dialogue on ethical issues in dementia care. At monthly meetings, volunteer family caregivers and individuals with dementia of the Alzheimer type identi- fied and spoke on ethical issues in dementia care following the chronology of the illness. An interdisciplinary and interprofessional group of individuals involved in dementia care listened attentively, raised questions, and discussed the issues with the volunteers. The group included directors of nursing (from long-term care settings, home health care agencies, and hospices), geriatricians, gerontologists, lawyers, ethicists, administrators , anthropologists, sociologists, political scientists, neurologists, psychiatrists, adult day care directors, and the leadership of the Alzheimer ’s Association Chapter. These practical guidelines represent a consensus statement for ideal care. We do not want to suggest that current circumstances always permit adherence to these guidelines or that caregivers who do not follow all our recommendations are not providing good care. We also understand that these guidelines largely presume a caring family, which does not always exist.The guidelines are named for the Fairhill Center for Aging , founded by the Benjamin Rose Institute and University Hospitals of Cleveland Health System.The center was the site of our meetings and is a model of ongoing cooperation and collaboration across organizational and disciplinary boundaries. Being Truthful: Issues in Diagnostic Disclosure 1. Physicians should sensitively inform affected individuals and their families about the diagnosis of probable Alzheimer disease (AD). The communication of the diagnosis should occur in a joint meeting with the affected individual and family to provide the individual with emotional support, except in rare cases when the individual objects to this. Almost without exception, individuals and their family members approach clinicians together to jointly understand the diagnosis and its implications for the future of the family unit. Hence, confidentiality is seldom a concern, but it may be. The content, timing, and manner of disclosure must be appropriate for the affected person and family, consistent with cultural variations and values as well as with knowledge of family dynamics. Disclosure of diagnosis should allow sufficient time for questions from family and the person diagnosed and for recommendations from the physician and Fairhill Guidelines I 45 health care team. It is helpful to include in the family meeting an additional member of the team, such as a social worker or nurse, to follow up on questions and discuss recommendations and resources. A followup session is beneficial to further discuss the diagnosis and available support systems. As a result of the communication process, the affected person and the family should come to understand that: (1) the loss of memory is not normal, but results from changes in the brain; (2) expectations for the future...