Academic journal article The Hastings Center Report

Ethical Challenges of Chronic Illness

Academic journal article The Hastings Center Report

Ethical Challenges of Chronic Illness

Article excerpt

Ethical Challenges of Chronic Illness

A Hastings Center Report

Special Supplement February/March 1988

This Special Supplement was derived from The Hastings Center project on Ethics and Chronic Illness, which was supported by a grant from the Henry Luce Foundation. The Special Supplement was edited by Courtney S. Campbell. Contents copyright 1988 by The Hastings Center. All rights reserved.

There is a specter haunting the American health care system. It is the prospect of widespread chronic illness and disability in an aging society. With it comes a daunting challenge to our health care delivery system, social welfare services, families, and communities. And it presents an equally difficult challenge to millions of us as individuals. For prolonged, slowly debilitating chronic illnesses will most likely be our companions in the twilight of our lives.

At present, it is unclear whether the American health care and social service systems are prepared to cope with the challenges, both financial and ethcial, that chronic illness poses to our society. Innovative policy ideas are needed, as are continuing research, extended and better coordinated social service programs, and educational programs that will equip health care providers to meet the special needs of persons with chronic illnesses.

The ethical dimensions of chronic illness and chronic care have been relatively neglected topics in the overall field of bioethics. Chronic care is a tedious, grinding labor of Sisyphus. It lacks the visibility and fascination of the high tech dramas played out in acute care settings. But the practical ethical dilemmas raised by chronic care are no less important than those in acute care, and the special characteristics of chronic illness make it an ideal domain in which to explore some new ethical and philosophical approaches. Chronic illness is not only a social issue that must be addressed, it is also a poignant and perplexing facet of the human condition where fresh insight can be sought. Meeting the needs of those with chronic illness, and treating them with justice and dignity as full-fledged members of the moral community, will tax our common energies, the public purse, and our moral imagination.

In 1984 The Hastings Center began a three-year project on Ethics and Chronic Illness with support from the Henry Luce Foundation. The project was premised on the hypothesis that the special nature of chronic care and the distinctive experience of chronic illness may lead to a transformation in many pervasive assumptions about the ethics and goals of medicine. The individualistic perspective behind much of the moral discourse of bioethics and social policy does not fare well in application to chronic illness and chronic care. Concepts such as patients' rights, autonomy, and best interests need to be revised in this context. In its confrontation with chronic illness, medicine's own understanding of its goals and mission must also be redefined. Intensive, high technology treatment oriented toward cure and full restoration of function, which has provided the dominant orientation for much of medicine in recent years, is usually inappropriate to the needs and problems of the chronically ill. A medical care system that lacks a sense of purpose beyond these goals will find itself increasingly uncertain and inept in the face of the demands placed upon it by chronic care.

The report offered here grows out of the overall work of the Ethics and Chronic Illness Project. Chronic illness is an exceedingly broad subject, and it has been more difficult than we imagined to capture a glimpse of the rich new agenda for bioethics that chronic illness provides. We hope nonetheless to have outlined some of that agenda in a way that will stimulate others to refine and pursue it further.

We are most grateful for the expert advice, guidance, and support we received from the members of the project research group, and others who took part in several meetings held during the past three years. …

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