Hastings Cent Rep. 2018 May;48(3):31-39. doi: 10.1002/hast.853.
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.
当患者缺乏决策能力时，根据美国标准临床伦理实践，医疗团队应寻求代理人的指导，该代理人可以是患者事先选定的，也可以由法院指定。如果没有愿意或能够行使替代判断的代理人，那么团队应选择促进患者最佳利益的干预措施。我们认为，即使有代理人的意见，患者的偏好也应该成为缺乏决策能力的患者的决策的另一个指导来源。我们的建议是建立在其他帮助缺乏决策能力的患者为自己的护理决策提供意见的努力的基础上。例如，“支持”、“辅助”或“指导”决策模型反映了对人文主义患者参与的承诺，并为患者、家庭和医疗团队创造了一个更具支持性的决策过程。但通常情况下，这些过程是支持性的，旨在引导患者做出代理人或团队认为符合患者最佳医疗利益的决策。另一种方法认为，认真对待此类患者的偏好可以帮助代理人更好地了解患者在保留决策能力的情况下会做出什么样的治疗选择；然后，代理人必须努力将患者以前理性自我的特征与患者目前受损自我的偏好相结合。这些努力旨在征求和使用患者的偏好来促进最佳利益，或者为代理人制作潜在的自主患者形象，从而为缺乏决策能力的患者提供良好的服务。然而，我们更进一步：没有决策能力的患者的偏好的道德原因不能简化为最佳利益或（代理人）自主权考虑，而是可以基于自由和尊重人的价值观。这对涉及这些弱势患者的治疗决策有重要影响。
