In this issue, Willemijn van Erp and colleagues describe the outcomes of a nationwide cohort of patients in the Netherlands diagnosed with unresponsive wakefulness syndrome (UWS), better known in the United States as vegetative state (VS). Outcomes of this cohort were noteworthy for 2 findings: the nearly complete absence of referrals to multidisciplinary neurorehabilitation centers at hospital discharge, and that half of the patients died from withdrawing medically provided hydration and nutrition— a decision triggered most often by an intercurrent illness— which was a mode of death that increased in frequency during the study period. The authors scrutinized the process of care of UWS/VS patients and identified a series of deficiencies they grouped into 3 categories that comprised a “vicious circle”: (1) epidemiological limitations resulting from diagnostic and prognostic uncertainty given the small number of patients, (2) suboptimal treatment of these patients because of disorganized systems of care, and (3) suboptimal clinical decision-making that favored allowing them to die by withdrawing medically administered hydration and nutrition. To address these deficiencies, the authors recommended interventions to improve the accuracy of diagnosis and prognosis, improve the systematization of care, and improve critical decision-making to enhance the quality of medical treatment. The first 2 components of the “vicious circle” identified in the Netherlands are easily transposable to the care of UWS/VS patients in the United States. But the authors’ analysis of the third component is not directly applicable because of prevailing medical practice and medicolegal differences in clinical decision-making between the Netherlands and the United States. In this commentary, I endorse the authors’ thoughtful analysis and recommended improvements but reorient their third component to make it compatible with accepted standards of end-of-life decisionmaking in the United States. The principal difference between medical decisionmaking in the Netherlands and the United States is the ultimate locus of decisional authority; in the Netherlands it is vested in the physician, whereas in the United States it is vested in the patient. Prior to the 1970s, medical decision-making in the United States, as in other countries, was physician-centered, meaning that it was physicians who determined treatment decisions. With the rise of the American civil rights movement and the expanding emphasis on patients’ rights and informed consent to (and refusal of) treatment, a gradual transition took place in the United States to a patient-centered decision-making locus. Now, patients are granted the right to accept or refuse offered tests and therapies, and physicians generally must acquiesce when a patient or lawful surrogate decision-maker refuses treatment. A relevant example is the decision to discontinue life-sustaining therapy in serious or terminal illness. In the former physician-centered model, it was the physician who determined when it was time to cease life-sustaining therapy, whereas in the current patient-centered model, it is the patient (or lawful surrogate) who makes that decision by refusing further treatment, a determination informed by discussions with the physician. The transition from a physician-centered to a patient-centered model currently may be starting in several European countries (including the Netherlands) because, as described by van Erp and colleagues, patients and their families are included in medical decisions, although these decisions ultimately remain under medical authority. Patients with UWS/VS obviously lack the capacity to make medical decisions, but their right to consent or refuse therapy is not surrendered; rather, it is transferred to a lawful surrogate decision-maker to exercise on their behalf. All states now offer legal means for citizens to name a lawful surrogate decision-maker while they retain capacity. These appointments are known variously as health care agents or durable powers of attorney for health care. Many states also enacted provisions that automatically appoint a lawful surrogate in situations in which a patient has become incapacitated and no health care agent had been appointed previously. Most states endow these agents with the same authority as the patient to consent or refuse treatments, although some restrict their authority to withdraw medically provided hydration and nutrition in certain circumstances. Physicians generally should conduct the same consent conversations with these lawful

中文翻译：

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意识障碍患者的临床决策

在本期杂志中，Willemijn van Erp 及其同事描述了荷兰全国范围内被诊断为无反应性觉醒综合征 (UWS) 的患者的结果，在美国更为人所知的是植物人状态 (VS)。该队列的结果有两个值得注意的发现：出院时几乎完全没有转诊到多学科神经康复中心，一半的患者因停止提供医疗提供的水和营养而死亡——这一决定最常由并发疾病触发——是一种在研究期间频率增加的死亡模式。作者仔细检查了 UWS/VS 患者的护理过程，并确定了一系列缺陷，他们将其分为 3 类，构成了一个“恶性循环”：(1) 由于患者数量少，诊断和预后的不确定性导致的流行病学限制，(2) 由于护理系统混乱，对这些患者的治疗不理想，以及 (3) 不理想的临床决策，有利于让他们因退出而死亡医学上的水合作用和营养。为了解决这些不足，作者建议采取干预措施来提高诊断和预后的准确性，提高护理的系统化程度，并改进关键决策以提高医疗质量。在荷兰确定的“恶性循环”的前两个组成部分很容易转移到美国 UWS/VS 患者的护理中。但作者对第三部分的分析并不直接适用，因为荷兰和美国之间在临床决策方面的普遍医疗实践和法学差异。在这篇评论中，我赞同作者深思熟虑的分析和改进建议，但重新调整了他们的第三个组成部分，使其与美国接受的临终决策标准兼容。荷兰和美国的医疗决策之间的主要区别在于决策权的最终位置；在荷兰，它属于医生，而在美国，它属于患者。在 1970 年代之前，与其他国家一样，美国的医疗决策以医生为中心，这意味着是医生决定了治疗决策。随着美国民权运动的兴起以及对患者权利和对治疗的知情同意（和拒绝）的日益重视，美国逐渐转变为以患者为中心的决策场所。现在，患者被授予接受或拒绝提供的检测和治疗的权利，当患者或合法的代理人决策者拒绝治疗时，医生通常必须默许。一个相关的例子是决定在严重或绝症时停止生命维持治疗。在以前的以医生为中心的模型中，由医生决定何时停止维持生命的治疗，而在当前以患者为中心的模型中，是患者（或合法代理人）通过拒绝进一步治疗做出决定，这是与医生讨论后做出的决定。从以医生为中心到以患者为中心的模式的转变目前可能正在几个欧洲国家（包括荷兰）开始，因为正如 van Erp 及其同事所描述的那样，患者及其家属被纳入医疗决策，尽管这些决策最终继续接受医疗授权。UWS/VS患者明显缺乏医疗决策能力，但并未放弃同意或拒绝治疗的权利；相反，它被转移给合法的代理决策者代表他们行使。现在，所有州都为公民提供法律手段，让他们在保留能力的情况下指定合法的代理人决策者。这些任命被称为医疗保健代理人或医疗保健持久授权书。许多州还颁布了在患者丧失行为能力且之前未指定医疗保健代理人的情况下自动指定合法代理人的规定。大多数州赋予这些代理人与患者相同的同意或拒绝治疗的权力，尽管有些州限制了他们在某些情况下撤回医疗提供的水分和营养的权力。医生通常应该与这些合法的人进行相同的同意对话。许多州还颁布了在患者丧失行为能力且之前未指定医疗保健代理人的情况下自动指定合法代理人的规定。大多数州赋予这些代理人与患者相同的同意或拒绝治疗的权力，尽管有些州限制了他们在某些情况下撤回医疗提供的水分和营养的权力。医生通常应该与这些合法的人进行相同的同意对话。许多州还颁布了在患者丧失行为能力且之前未指定医疗保健代理人的情况下自动指定合法代理人的规定。大多数州赋予这些代理人与患者相同的同意或拒绝治疗的权力，尽管有些州限制了他们在某些情况下撤回医疗提供的水分和营养的权力。医生通常应该与这些合法的人进行相同的同意对话。