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AUTONOMY

Autonomy expresses the idea that persons should direct their own actions and be free from coercion or undue influences by others on their actions and deliberations. The concept of autonomy has touched all areas of social life and has had a pronounced effect on medical ethics and medical practice. Patient autonomy emerged in the 1960s and 1970s in the great social movement that created a diverse range of civil rights, some constitutionally protected, including expanded individual rights in health care, such as access to abortion, end-of-life decision making, and privacy. The clearest expression of autonomy in medicine is the doctrine of informed consent.

Informed consent defines a set of patient rights and reciprocal obligations for health professionals. Informed consent means that patients have a right to make autonomous choices about their medical care. To do so, they must be given information about their medical condition, treatment alternatives, and the burdens and benefits associated with the recommended treatment and its alternatives. Since this information is largely in the hands of physicians, the doctrine of informed consent creates the obligation that physicians disclose information to patients and allow patients to make their own medical decisions. An implication of informed consent is that patients can refuse treatment.

The right to refuse treatment, including life-saving or life-sustaining treatments, has come to be firmly established in law. Recognizing that patients sometimes lack the ability to make their own medical decisions, legislatures created advance directives. Advance directives empower patients to direct their future medical care even when they have lost the ability to make their own medical decisions. These ideas have radically transformed late twentieth-century medicine. In a similar vein, the concept of autonomy has affected our understanding of aging and being old as well.

On the positive side, autonomy has supported criticisms of ageism and other social attitudes and practices that limited the freedom of elders or that relegated elders to a secondary social status. Autonomy has also supported the elimination or modification of age-based discrimination, such as a mandatory retirement age or the proscription of the use of age in employment decisions. Autonomy is also at work in the idea that elders in retirement should remain active and engaged. Their social function is to enjoy an earned leisure and to maintain independence from the responsibilities characteristic of their preretirement lives. The principle of autonomy has thus introduced into gerontology a focus on the individual who is regarded independent of other individuals or social structures like the family. It has highlighted a certain understanding of the autonomous individual as one who has the capacities for self-directed and independent action, deliberation, and decision-making, and it has made these values preeminent. These assumptions demarcate a standard view of autonomy that has important implications for aging.

Key features

Four features of this view of autonomy are particularly significant for aging. First, the autonomous person is regarded outside a developmental framework and is assumed to fully possess all autonomy-related faculties. Thus, the standard view of autonomy has no ready way to accommodate incapacity. Second, autonomy implies independence and self-direction. States of dependence are regarded as problematic for true autonomy. Third, autonomy focuses on the individual in abstraction from social structures like the family, so the aged individual is seen as possessing value, purpose, and rights separate from the social and personal relationships that provide everyday support and assistance. Fourth, the standard view of autonomy incorporates a simplifying assumption that freedom of choice or decision-making expresses the most important dimension of being autonomous. Each of these features of autonomy creates a range of problems in the context of aging.

Standard treatments of autonomy focus on individual action and choice without regard for the medical, psychological, or social context of the individual whose autonomy is at issue. This creates special problems for thinking about those processes of aging that create dependencies or compromise the capacities of the elder. In these situations, autonomy and its corollary of rights cannot fundamentally aid elders whose struggle is not against oppression, but to maintain a personal sense of worth and dignity in the face of loss. In stressing the robust exercise of freedom, autonomy can distort the complex phenomenology of aging by vastly oversimplifying what being autonomous involves as one grows old.

Actual expressions of autonomy throughout the life span are always subject to a wide range of circumstances and conditions. For example, metabolic states can induce confusion and alter one's ability to think clearly or to carry out intended choices. Psychological states can distort one's ability to perceive reality accurately and can affect decision-making. Social factors also influence the ways in which one experiences the world and the choices that one practically envisions.

A society that prizes an idealized view of individual action and choice and that values independence, self-direction, and self-control understandably tends to disvalue conditions that compromise action or involve decisional impairments or states of dependence. The paradox of autonomy in aging is that the ideal of autonomy expressed in the robust independent decision maker is incongruent with some of the realities of loss that are associated with growing old. This raises the question: How can the ideals of autonomy be reconciled with the realities of aging?

Implications for aging

Frail elders who have experienced medically related incapacity often receive medical care in home with assistance from family members, neighbors, or friends. They sometimes rely on others for assistance in securing health care, filling prescriptions, or in complying with recommended medical regimens. Respecting the actual autonomy of such an elder entails more than respecting the right of informed consent or confidentiality. Respecting the actual autonomy of the elder requires that health professionals carefully examine the ways that the standard delivery of health care services can compromise an already impaired autonomy. For example, if elders require assistance in receiving health care services because they have hearing or visual impairments, assistive hearing devices or large-type patient information material or prescription medicine instructions can minimize or eliminate the direct reliance of some elders on others for the most basic elements of medical care.

Emphasizing informed consent can be problematic whenever elders are inclined to defer to authority figures. Such elders are more inclined to accept physician advice than are people in their middle years. For these elders, the right to informed consent is less meaningful than is the opportunity to receive authoritative advice from a physician. Because these elders would prefer to be told what to do rather than being provided with an array of choices, the challenge for physicians involves identifying the basic values or beliefs of patients and incorporating them into a treatment plan.

When physical infirmity associated with aging reduces a person's ability to act independently, it may not alter the person's decisional capacity. Focusing on independence of action may obscure the fact that actual expressions of autonomy always involve two distinct elements, a decisional and an executional element. A person may be autonomous in the sense of being able to make his or her own decisions, but may not be able to carry them out. Hence, autonomy is not lost when a person is unable to carry out a decision because of frailty or physical infirmity. To respect such a person's autonomy requires more than simply allowing them to make choices. It creates the obligation to assist them in carrying out their choices. Thus, respecting actual autonomy in the domain of choice entails that we assist elders in realizing their choices. This can be a formidable challenge in some instances, but in other circumstances minor accommodations are all that is needed.

Assistive devices ranging from hearing aids or wheelchairs to direct assistance in carrying out activities of daily living can serve to sustain the reality of autonomy in a frail elder. Autonomous choice in abstraction from the existential setting of choice is meaningless if the conditions required for its execution cannot be fulfilled. Autonomy that is impaired somewhat by executional inabilities can become a significant problem if the material means for providing executional assistance are not available. For this reason, poverty directly impairs one's autonomy, yet is a condition that is seldom regarded as infringing freedom. Although limitations in executional abilities occur throughout life, they are more significant as one ages and suffers the disabilities associated with growing old. Analogously, decisional impairments associated with dementia or Alzheimer's disease does not obliterate autonomy, but does create challenges for how autonomy of such persons is to be respected.

Because a person can no longer make autonomous choices, it does not mean that their autonomy cannot be respected. All autonomous choices are based on the person's preferences or values that are developed, often over a lifetime. The beliefs and values that guide a person's life is thus the key to respecting their autonomy whenever one's decisional capacity is impaired. In the absence of formal advance directives, these beliefs and values can provide a basis for respecting an elder's autonomy. To do so, however, one needs to know who the elder is. This requirement creates resource demands on caregivers and on a system of care that focuses on respecting patients' choices without regard for the background values or reasons that guide the choice.

Loss of independence is often regarded as the most serious impairment of autonomy. This view creates unrealistic expectations in the context of growing old. In America, ownership or occupancy of one's own home is a cultural value epitomized in the phrase that one's home is one's castle. It is no wonder, then, that living independently at home has become the last stand for elders struggling to maintain their self-respect and sense of dignity. Unfortunately, the requirements for assistance in daily living can become so great that elders cannot provide for themselves in the home. Hence, a struggle ensues between protecting the welfare of the elder and maintaining the elder's sense of identity and independence. Ironically, this struggle exists because we have not taken the demands of autonomy seriously enough.

Social considerations

As a society, we have ignored the material and social conditions that are required for autonomy to flourish. We have allowed autonomythwarting institutions to dominate the care of the infirm and sick old. Rather than building autonomy-sustaining institutions, long-term care of elders has accepted a medical paradigm of the delivery of services rather than a paradigm of providing an environment suitable for sustaining a compromised autonomy.

The nursing home in America has become the icon of the loss of independence. The nursing home often is a setting in which the individual is subject to impersonal institutional rules rather than self-control. Even when elders do not require skilled care, the medical model that dominates nursing homes creates a hierarchical and professionally dominated setting that forces residents to live under significant restrictions. In this context, it is understandable that reformers have used the concept of autonomy as a watchword for reform, but reforms that feature increased choices or rights cannot address the personal loss of dignity that elders experience.

Autonomy has traditionally supported liberation. In the nursing home, a patient rights' movement has developed that insists that residents of nursing homes be accorded basic rights, including degrees of self-governance and, most importantly, preservation of the rights that they possessed outside the nursing home. Liberating elders from an oppressive system, however, is not feasible if the elders truly need the supportive services that the nursing home provides.

While autonomy is an important value, respect for autonomy is a remarkably abstract formula for expressing the complex range of ethical obligations associated with respecting elderly persons. Persons deserve respect not only because they are capable of self-determination, but also because they are persons. In actuality, persons exhibit varying degrees and kinds of autonomy. Unfortunately, emphasizing the ideals of independence and unfettered decision-making that dominates most treatments of autonomy cannot be developmentally sustained throughout the life span. In contrast, respect for actual autonomy means that society must address the concrete actuality of the persons in question.

To respect autonomy thus requires that we develop policies and procedures that move beyond a focus on individual choice or decision-making to take into account developed personality and the limitations that actually define people as they age. The challenge of autonomy in aging is the challenge of respecting elders' actual expressions of autonomy in the face of compromised capacities without losing the protections afforded by the rights associated with traditional readings of the principle of autonomy.

GEORGE J. AGICH

See also ADVANCE DIRECTIVES FOR HEALTH CARE; AGE DISCRIMINATION; LIFE SPAN THEORY OF CONTROL; REFUSING AND WITHDRAWING MEDICAL ATTENTION.

BIBLIOGRAPHY

AGICH, G. J. Autonomy in Long-Term Care. New York: Oxford University Press, 1990.

GAMROTH, L. M.; SEMRADEK, J.; and TORNQUIST, E. M., eds. Enhancing Autonomy in Long Term Care: Concepts and Strategies. New York: Springer Publishing Company, 1995.

MCCULLOUGH, L. B., and WILSON, N. L., eds. Long-Term Care Decisions: Ethical and Conceptual Dimensions. Baltimore and London: John Hopkins University Press, 1995.

MOODY, H. R. Aging: Concepts and Controversies. Baltimore and London: John Hopkins University Press, 1998.

SCHNEEWIND, J. B. The Invention of Autonomy: A History of Modern Moral Philosophy. Cambridge: Cambridge University Press, 1997.