Academic journal article The Hastings Center Report

Individual Preferences and Advance Directives

Academic journal article The Hastings Center Report

Individual Preferences and Advance Directives

Article excerpt

The concept of "preference" embraces both the act of preferring and the power of choosing. Over the past several decades, there has been increasing emphasis on individual autonomy, and expanded opportunities to express preferences and make choices around health care decisions. This focus on individual autonomy in health care is both time and culture bound, however, and may be a luxury of modern Western economies. Moreover, individuals from separate age-cohorts and sub-cultures may not share common values regarding the importance of autonomy or the role of the individual in personal and health care decisions. Further, issues of central importance to patient advocates may not take primacy for specific individuals or population groups.

One aspect of autonomy is the right of the individual to control his or her own life. Several studies indicate that the presence or absence of control, variously defined, exerts important influences on emotional and physical well-being.[1] Studies of interventions to enhance feelings of control in nursing homes and other health care settings have refueled interest in the concept of "learned helplessness," a term used to describe the frequently replicated finding that humans (or animals) exposed to a series of uncontrollable aversive events develop generalized performance deficits.[2] Alison Piper and Ellen Langer contrast "mindful control" with learned helplessness, describing a cycle in which the individual is told in various ways that he or she is no longer competent (that is, his or her actions no longer influence desired outcomes).[3] The individual accepts this negative image, loses feelings of self-worth, and, consequently, makes little or no attempt to disprove the label, thus supporting the notion of incompetence by becoming unduly helpless.

Langer and others have conducted several studies which support her assertion that it is not the actual level of control that explains these findings, but rather the perception or "illusion" of control. What matters is the belief that one does or does not control circumstances and outcomes.[4] Nonetheless, perceptions of personal control over one's life and environment provide a rich arena of investigation and a topic of powerful advocacy.

Preferences and Personal

Autonomy

Rational choice provides expression of uniquely individual beliefs, desires, preferences, and values. The "ideal" expression of autonomy is behavior that is spontaneous, self-initiated, and "manifests intentionality."[5] Making choices usually involves the balancing of burdens and benefits, and may entail consideration of competing values. However, an apparent "choice," even as regards life and death issues, may be superficial, uneducated, or the result of habit rather than the culmination of thoughtful and informed consideration of deeply held values and lifelong preferences. Moreover, choices are made in a social context, based in the relationships and needs of others.

Obviously, care must be taken to honor expressed values when possible, but the current emphasis on die opportunity to make choices should be tempered by a recognition that not all persons wish to be involved in all choices. Choosing not to choose is an important theme for future investigation.

Although many advocates presume that all individuals wish to be involved in advance care decisions, a growing body of research indicates that some persons do not wish to be involved in or to discuss advance care with their physicians.[6] Although there is a suggestion that older patients are less likely to wish involvement than younger patients, there are no clearly discernible trends regarding characteristics of persons who prefer not to have such discussions, nor do we have clear data to indicate why they do not wish to be involved.

Most studies, however, indicate that a majority of persons do wish to be involved, in some way, in end-of-life decisions. …

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