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Capacity for Preferences: Respecting Patients with Compromised Decision-Making

When a patient lacks decision-making ca­pacity, then according to standard clini­cal ethics practice in the United States, the health care team should seek guidance from a surrogate decision-maker, either previously selected by the patient or appointed by the courts. If there are no surrogates willing or able to exercise substi­tuted judgment, then the team is to choose inter­ventions that promote a patient’s best interests. We argue that, even when there is input from a surro­gate, patient preferences should be an additional source of guidance for decisions about patients who lack decision-making capacity.

Our proposal builds on other efforts to help pa­tients who lack decision-making capacity provide input into decisions about their care. For example, “supported,” “assisted,” or “guided” decision-mak­ing models reflect a commitment to humanistic patient engagement and create a more supportive process for patients, families, and health care teams. But often, they are supportive processes for guid­ing a patient toward a decision that the surrogate or team believes to be in the patient’s medical best interests. Another approach holds that taking seri­ously the preferences of such a patient can help surrogates develop a better account of what the patient’s treatment choices would have been if the patient had retained decision-making capacity; the surrogate then must try to integrate features of the patient’s formerly rational self with the preferences of the patient’s currently compromised self. Patients who lack decision-making capacity are well served by these efforts to solicit and use their preferences to promote best interests or to craft would-be autono­mous patient images for use by surrogates. How­ever, we go further: the moral reasons for valuing the preferences of patients without decision-making capacity are not reducible to either best-interests or (surrogate) autonomy considerations but can be grounded in the values of liberty and respect for persons. This has important consequences for treat­ment decisions involving these vulnerable patients.

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