Book Review

Long-Term Care Decisions: Ethical and conceptual dimensions

N Engl J Med 1995; 333:1511November 30, 1995

Article

Long-Term Care Decisions: Ethical and conceptual dimensions
Edited by Laurence B. McCullough and Nancy L. Wilson. 246 pp. Baltimore, Johns Hopkins University Press, 1995. $40. ISBN: 0-8018-4993-4

Long-term care is a part of medical practice that affects enormous numbers of people and consumes a rising percentage of the health care budget, but to which comparatively little academic effort is devoted. Defined as the medical care, social services, and personal care provided to people with diminished functional capacity over an extended period, long-term care is the lifeline for all 1.5 million elderly persons currently in nursing homes and approximately 1.5 million more who live in the community. The essays in this collection are an important contribution to research in the field because they address the unique ethical issues arising in home care and nursing home care.

The central theme of Long-Term Care Decisions is that the prevailing bioethical model of decision making, with its emphasis on individual autonomy and life-sustaining medical care at the very end of life, is inadequate. It is inadequate because the chronically ill person who depends on multiple supports for survival, in a nursing home or at home, cannot function as an isolated person in making decisions any more than in the rest of daily life: that person's intimate involvement with family and professional care givers necessitates their participation. The autonomy model of medical decision making in acute care is also insufficient, because the decisions that may be of most importance to the person needing long-term care are often those involving seemingly mundane aspects of life, not the crises of acute care medicine. Building on the earlier work of many of the contributors, such as Everyday Ethics: Resolving Dilemmas in Nursing Home Life, edited by Rosalie A. Kane and Arthur Caplan (New York: Springer Publishing, 1990), and Autonomy and Long-Term Care by George J. Agich (New York: Oxford University Press, 1993), the essays in this book examine the implications of these observations for case managers, spouses and children, and members of nursing home staffs.

To provide a context for the discussion, two excellent chapters summarize the history of long-term care and the prevailing demographic and institutional realities. The review by Holstein and Cole reminds us that the existing system of care delivery depends as much on its historical antecedents as on economic or cultural necessities, whereas the review by Wilson succinctly describes the social and medical services available under a variety of programs.

At its core, the book attempts to formulate a new way of thinking about making decisions for those who need long-term care. Two essays — the one by Bart Collopy on safety and independence and the one by John Arras on resolving conflicts of interest — are outstanding contributions to the literature on ethics in long-term care. Collopy makes his argument clearly: the “highly medicalized, protectionist, risk-wary model of care” tends to protect people from injury, poor nutrition, poor hygiene, and the like. But the way to maintain personhood despite diminished physical or mental competence is by “charting our way through the minute and mundane realities of daily life,” even if the chosen path jeopardizes physical safety. Such autonomy, Collopy suggests, means more than the more commonly discussed right to make decisions about issues such as resuscitation and chemotherapy. Arras argues that to make truly ethical decisions in long-term care, we need to move beyond the patient-centered framework to a “family-centered deliberative process” based on such notions as accommodation and negotiation.

This book should be read by all leaders in long-term care, including nursing home administrators, case managers of home care agencies, and medical directors of nursing homes. Although little here is radically new, the essays articulate the problems of standard decision making in a readily comprehensible manner. They demonstrate both the weakness of conventional thinking and the virtue of the proposed reconceptualization by analyzing various aspects of long-term care. Only if we heed the message of this book will the models of long-term care developed over the next decades succeed in delivering care that is ethically sound as well as comprehensive and cost effective.

Muriel R. Gillick, M.D.
Hebrew Rehabilitation Center for Aged, Boston, MA 02131