Ethical Foundations of Palliative Care for Alzheimer Disease

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

ma   e n d i x a The Declaration of Berg en Dal on Ethical Principles Guiding Palliative Care of Persons with Alzheimer’s Disease Preamble Alzheimer’s Disease presents a mounting challenge to caregivers and society at large.Palliative care is a promising interdisciplinary answer to this challenge.The following ethical principles are intended specifically to guide the provision of palliative care for persons with Alzheimer’s Disease, while acknowledging that general ethical principles in health care apply equally. 1. Principle of Respect for Dignity Persons with Alzheimer’s Disease have human dignity irrespective of their capacities . In preserving the dignity of these persons with Alzheimer’s Disease, we also acknowledge our own dignity. The dignity of persons with Alzheimer’s Disease demands that we not exclusively mourn their losses, but also acknowledge and encourage their present abilities, while respecting their past and fostering their future opportunities. 2. Principle of Well Being The well being of persons with Alzheimer’s Disease must be thoroughly considered when planning and providing care. 3. Principle of Participation Irrespective of their capacities, persons with Alzheimer’s Disease should be enabled to participate as much as possible in their own care. 4. Principle of Equal Consideration Structures of care must provide that the dignity and well being of caregivers of persons with Alzheimer’s Disease are considered equally with the dignity and well being of the persons receiving this care. 5. Principle of Non-Abandonment Persons with Alzheimer’s Disease and their caregivers should be adequately supported and never abandoned. 6. Principle of Moderation Care for persons with Alzheimer’s Disease should be provided in the least intrusive and least restrictive yet adequate manner. 7. Principle of Proportionality Care for persons with Alzheimer’s Disease should be offered at the level of organizational complexity that is proportionate to the needs and concerns of the persons with Alzheimer’s Disease and their caregivers. Commentary on the Declaration Jos V. M. Welie, M.MedS., J.D., Ph.D., and Bert Gordijn, Ph.D. Palliative care is a major focus of treatment for the more than 12 million su- fferers from Alzheimer disease worldwide. This condition is characterized by dramatic alterations in cognition, behavior and everyday activities of living. In recent years, a number of scholars have examined the ethical aspects surrounding the treatment of persons with Alzheimer disease as well as biomedical research of the disease itself and potential remedies (Berg, Karlinsky, & Lowy, 1991; Post, 1995; Nordenram, 1997; Post & Whitehouse, 1998). Notwithstanding signi- ficant diagnostic and therapeutical advances, most persons with Alzheimer disease still face an extended period of ever increasing debilitation in the final years of their lives. Yet clinicians, ethicists, and policymakers have only begun to examine the ethical concerns that arise in providing comfort care measures when the patient’s downward course persists for a decade or more and takes its toll on patients, families, and society (Luchins & Hanrahan, 1993; Rhymes & McCul344 Appendix A lough, 1994; Bonnel, 1996; Filley, Chapman, & Dubovsky, 1996; Simard, 1999; Volicer , 2001). In response to this void, an international and multidisciplinary research project was organized by the directors of the Center for Health Policy and Ethics at Creighton University Medical Center, Omaha, Nebraska, and the Department of Ethics, Philosophy, and History of Medicine at the University Medical Centre Nijmegen, the Netherlands. In the fall of 2001 and with the financial support of the Greenwall Foundation, New York, the participating scholars, representing eight countries and a variety of disciplines (including medicine, nursing, dentistry , pharmacy, bioethics, philosophy, theology, law, policy, and education) convened in the Dutch town of Berg en Dal (near the city of Nijmegen). One of the objectives of this working conference was to draft a declaration of ethical principles that can guide the provision of palliative care for persons with Alzheimer disease. Scope of the Declaration As is true of the research project overall, the Declaration of Berg en Dal specifically focuses on the provision of palliative care. It is not designed to cover all ethical principles that should guide care of persons with Alzheimer disease. In that regard, it differs from and is intended to complement existing declarations such as the 1994 Fairhill Guidelines, the legal rights of patients document developed by Alzheimer Europe, and similar ethical guidelines developed by the American Alzheimer’s Association (Post & Whitehouse, 1994; Alzheimer Europe www.alzheimer-europe.org; Alzheimer’s Association, 1988; Alzheimer’s Association , 1997...