Jack, who is seventy‐five years old, is in the hospital with a terminal condition that has undermined his cognitive faculties. He has left no advance directive and has never had a conversation in which he made his treatment wishes remotely clear. Yet now, a treatment decision must be made, and in modern American medicine, the treatment decision for Jack is supposed to be made by a surrogate decision‐maker, who is supposed to use a decision‐making standard known as “substituted judgment.” According (...) to the substituted judgment standard, Jack’s surrogate decision‐maker, his wife, is supposed to decide on his treatment by determining what Jack would do if he did have decisional capacity. That is, she is supposed to answer the question, what would the patient choose? I will argue that this is the wrong question to ask because when the question has a determinate answer, that answer is sometimes not sufficiently connected to the value that is supposed to make the question morally salient, and because sometimes, perhaps often, there is no determinate answer to the question of what the patient would choose. Jointly, these two problems suggest the need for a different question. (shrink)

Background: Current practice relies on patient-designated and next-of-kin surrogates, in consultation with clinicians, to make treatment decisions for patients who lose the ability to make their own decisions. Yet there is a paucity of data on whether this approach is consistent with patients' preferences regarding who they want to make treatment decisions for them in the event of decisional incapacity. Methods: Self-administered survey of patients at a tertiary care center. Results: Overall, 1169 respondents completed the survey (response rate = 59.8%). (...) Of the 229 respondents who had previously designated a surrogate, 78.2% wanted their surrogate to make treatment decisions in the event of decisional incapacity, whereas 21.8% wanted their doctors to make treatment decisions. Of the 822 respondents who had not designated a surrogate, 66.1% wanted their family to make treatment decisions, whereas 33.9% wanted their doctors to make treatment decisions. The most common explanation provided for why respondents wanted their surrogate or family to make treatment decisions for them in the event of decisional incapacity was the belief that loved ones knew the patient's treatment preferences. Conclusions: Contrary to current practice, 33.9% of respondents who had not designated a surrogate and 21.8% of those who had designated a surrogate indicated that they wanted their doctors to make treatment decisions for them in the event of decisional incapacity. Moreover, many of those who wanted their surrogates or family members to make treatment decisions explained this preference by citing a belief that loved ones knew the patient's treatment preferences. This belief is undermined by prior research that suggests that surrogates and family members frequently are unable to predict which treatments their charges would want. Future research should assess these two concerns with current practice and, where necessary, identify approaches to address them. (shrink)