Wendler David, Wesley Robert, Pavlick Mark, Rid Annette
Department of Bioethics, NIH Clinical Center.
Biostatistics and Clinical Epidemiology, NIH Clinical Center.
AJOB Empir Bioeth. 2016;7(4):251-259. doi: 10.1080/23294515.2016.1182235. Epub 2016 Apr 26.
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.
Self-administered survey of patients at a tertiary care center.
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.
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 which 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.
目前的做法是依靠患者指定的代理人及近亲代理人,在与临床医生协商后,为失去自主决策能力的患者做出治疗决策。然而,关于这种方法是否符合患者在决策能力丧失时希望谁为其做出治疗决策的偏好,相关数据却很匮乏。
对一家三级医疗中心的患者进行自我管理式调查。
总体而言,1169名受访者完成了调查(回复率=59.8%)。在229名之前指定了代理人的受访者中,78.2%希望其代理人在决策能力丧失时做出治疗决策,而21.8%希望其医生做出治疗决策。在822名未指定代理人的受访者中,66.1%希望其家人做出治疗决策,而33.9%希望其医生做出治疗决策。对于受访者为何希望其代理人或家人在决策能力丧失时为他们做出治疗决策,最常见的解释是相信亲人了解患者的治疗偏好。
与当前做法相反,33.9%未指定代理人的受访者以及21.8%已指定代理人的受访者表示,他们希望医生在决策能力丧失时为他们做出治疗决策。此外,许多希望其代理人或家庭成员做出治疗决策的人解释这种偏好的原因是相信亲人了解患者的治疗偏好。但先前的研究对这一观点提出了质疑,该研究表明代理人和家庭成员常常无法预测其委托人会希望接受哪些治疗。未来的研究应评估当前做法中的这两个问题,并在必要时确定解决这些问题的方法。