Book Review

Autonomy and Long-Term Care

N Engl J Med 1993; 329:2044-2045December 30, 1993

Article

Autonomy and Long-Term Care
By George J. Agich. 197 pp. New York, Oxford University Press, 1993. $35. ISBN: 0-19-507495-5

The literature of medical autonomy deals with crises and conflicts of short-term care, but in long-term care most of the struggles concern mundane, routine experiences. The standards of autonomy in short-term care are rarely challenged in long-term care, and little effort has been made to study their effect on long-term care. Agich's thesis is that autonomy must be understood not in abstract terms but phenomenologically. Autonomy (independence or self-rule) in the context of long-term care must be radically reconsidered. Agich is dissatisfied with the traditional liberal theory of autonomy and proposes a developmental perspective that emphasizes the position of the individual, interdependent in the world rather than isolated and self-reliant.

Agich begins with a discussion of the reasons that autonomy has become such a powerful concept in Western thought. He argues that its importance lies in the political and legal domains. Paternalism is of concern when independence and noninterference are primary goals, but Agich observes that we are not really independent in most areas of our lives. Our interdependence makes the application of the “ideal autonomy” unworkable, particularly in settings of dependence.

This mismatch between ideal theoretical concepts and actual individual experience is examined in the next section, which considers the myth and reality of traditional views of autonomy in the nursing home and during home care. The effect of illness on the psychological and physical capacity for autonomy is enormous, and our reliance on others for comfort and basic survival in sickness necessitates an alternative understanding of autonomy.

Agich's core examination of “actual autonomy” follows from this question: “If autonomous action is ruled out because of lack of cognitive and volitional capacity, then what is the ground for insisting on respect or support of autonomy?” A developmental perspective helps us face the reality that dependence is an essential characteristic of humanness. We must recast our ideal of autonomy to recognize the social arrangements of existence -- family, friendship, community. Agich leans heavily on our responsibility to understand patients' lives, their experience of illness and disability, and their attempts to cope with loss and anxiety, particularly anxiety about approaching death.

This examination leads Agich to ask about the choices available to patients in long-term care. Are these choices meaningful to patients? Are they valued? Four areas of long-term care define much of patients' daily experience, and the author asks whether choices in these spheres are worth making or whether they are tragic, without satisfactory worth. How can patients' autonomy be respected in the way that space, the environment of their lives, is made available? What influence do they have on the use of time? How can the absence of meaningful activity be addressed? How do patients perceive communication to and about them? And, finally, affectivity, the “glue . . . that joins the various episodes and pieces of one's life into a coherent whole,” is often absent from the long-term care setting.

Agich, in summary, proposes that a positive concept of autonomy remain the primary ethical value in long-term care, but he believes it must be grounded in the world of the patient, not the ivory tower of the thinker. We must begin to address the qualities he discusses in the lives of institutionalized patients and be less obsessed with the documents (such as forms for informed consent or advance directives) of classic medical autonomy.

This book has been hailed by critics as a milestone in medical ethics. For practicing physicians, the language of ethics and the reference to philosophical concepts make it hard reading. For those with a devotion to geriatrics and long-term care, the book is well worth the struggle, because it challenges clinicians to reexamine many of the ethical principles on which they have based their interactions with patients in long-term care.

Katherine Hesse, M.D.
Mount Auburn Hospital, Cambridge, MA 02238