Autonomy Of The Dying Person Best Interests And Substituted Judgment

Driven by an understanding of autonomy indicating that an individual should have the freedom and right to accept or refuse treatment as an independent decision, the advance-directives movement has been seen as a positive step in caring for terminally ill patients. This strong sense of individual autonomy has held that surrogate decision makers should make decisions on the basis of what the patient would decide if the patient had been able to decide. On the other hand, for many years prior to the interest in advance directives, both the courts and the medical profession assumed parens patriae roles and acted according to what was considered best for decisionally incapacitated persons. Consequently, two standards for substituted decision making have emerged over the past two decades: best interests and substituted judgment.

Simply stated, the best-interests standard holds that surrogate decisions are acceptable on the grounds that they benefit the patient according to socially shared values of a hypothetical ''reasonable'' person. Factors such as relief of suffering, the usefulness or futility of an intervention, risks, benefits, and burdens are considered to provide an objective test. Such considerations may or may not reflect a patient's own preferences. By contrast, the substituted-judgment standard calls on surrogates to replicate the decision the patient would have made had the patient been capable. A substituted-judgment decision is based on the patient's own values, beliefs, and treatment wishes. For this reason, it is called a subjective test. The better a patient's own views and anticipated treatment decisions are known, the greater the likelihood that the surrogate decision can replicate the patient's decision. Patients may express their views through living-will documents, through conversations about the experiences of others, or through subscription to sets of beliefs, religious or not. Some persons may not have expressed such views or not have made them clear. In these cases, surrogates have no alternative but to use the best-interests standard.

Notwithstanding basic differences between the two standards, ethical and legal commentators, as well as the courts, have produced varying interpretations of each standard, particularly substituted judgment (Meisel, 1989). Some have held that substitute decisions require ''clear and convincing evidence'' of the prior wishes of the patient. For example, court opinions in Missouri (Cruzan v. Harmon, 1988) and New York (In re O'Connor, 1988) have imposed very high evidentiary standards concerning the principal's known wishes before allowing a surrogate to reject a life-sustaining treatment for a terminally ill patient. Other states have imposed less restrictive evidentiary rules. For example, the courts in Massachusetts have permitted surrogate, substituted-judgment decisions based on inferences of patient wishes and have sometimes extended the standard to surrogate decisions for patients who have never been capable of making decisions for themselves.

Because the substituted-judgment standard appears to promote individual autonomy more readily than the best-interests standard, it has been widely advocated as the ideal for surrogate decision making. For example, the aforementioned Patient Self-Determination Act was premised on that ideal. However, many ethicists and legal scholars continue to wrestle with the various interpretations of substituted judgment and sometimes attempt to bridge best interests and substituted judgment (Seckler, Meier, Mulvihill, & Paris, 1991). Arguments that the two standards cannot be easily separated in practice abound (Hamann, 1993; Harmon, 1990). Others have found fault with both standards (Rhoden, 1988) or have advocated for a modified version of the best-interests standard (Dresser & Robertson, 1989).

What have often been neglected in the debate are the preferences of patients themselves regarding the standards of surrogate decision making. Are elderly people mostly interested in having surrogate decisions made for them on the basis of substituted judgment, or are they more interested in who makes such decisions for them? Some empirical evidence is emerging suggesting that elderly people do not have a strong interest in having their own decisions replicated in surrogate decision making (High, 1989). Rather, it is frequently the case that elderly people prefer to rely informally on trusted surrogate decision makers without regard to whether the decision reflects one standard or the other. They are more interested in having the best decision made by whatever means. Frequently, elderly people believe that close family members, particularly spouses and/or trusted adult children, can make better decisions at the time of the medical crisis than they could by advance deliberation (High, 1988, 1990; High & Turner, 1987).

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