Abstract：
Unrepresented patients-people without capacity to make medical decisions who also lack a surrogate decision-maker-form a large and vulnerable population within the United States health care system. The burden of unrepresentedness has rightly prompted widespread calls for more and better advance care planning, in which still-healthy patients are encouraged to designate a surrogate decision-maker and thus avoid the risk of becoming unrepresented. However, we observe that some patients, even with available social contacts and access to adequate advance care planning services, simply decline to name a surrogate decision-maker. We propose a novel concept of \"informed refusal of representation\" (\"IRR\") to characterize the position held by some such patients, who are often overlooked in prior work on unrepresentedness. We then discuss physicians\' ethical obligations in the face of such a refusal and avenues by which physicians can support patients without surrogates in receiving goal-concordant care.
摘要：
无人代表的患者-没有能力做出医疗决定的人，也缺乏代理决策者-在美国医疗保健系统中构成了庞大而脆弱的人群。无代表性的负担正确地促使人们广泛呼吁进行更多和更好的预先护理计划，其中鼓励仍然健康的患者指定代理决策者，从而避免成为无人代表的风险。然而,我们观察到一些病人，即使有可用的社会联系和获得足够的预先护理计划服务，简单地拒绝任命代理决策者。我们提出了“知情拒绝代表”（“IRR”）的新概念，以表征某些此类患者的立场，在先前关于非代表性的工作中经常被忽视。然后，我们讨论面对这种拒绝的医生的道德义务，以及医生可以在没有代理人的情况下支持患者接受目标一致护理的途径。
