Moye Jennifer, Catlin Casey, Kwak Jennifer, Wood Erica, Teaster Pamela B
VA Boston Healthcare System and Harvard Medical School, 150 South Huntington Ave, Jamaica Plain, MA, 02130, USA.
Boston VA Research Institute, Inc., 150 South Huntington Ave, Jamaica Plain, MA, 02130, USA.
HEC Forum. 2017 Jun;29(2):171-189. doi: 10.1007/s10730-016-9317-9.
Adults who are incapacitated and alone, having no surrogates, may be known as "unbefriended." Decision-making for these particularly vulnerable patients is a common and vexing concern for healthcare providers and hospital ethics committees. When all other avenues for resolving the need for surrogate decision-making fail, patients who are incapacitated and alone may be referred for "public guardianship" or guardianship of last resort. While an appropriate mechanism in theory, these programs are often under-staffed and under-funded, laying the consequences of inadequacies on the healthcare system and the patient him or herself. We describe a qualitative study of professionals spanning clinical, court, and agency settings about the mechanisms for resolving surrogate consent for these patients and problems therein within the state of Massachusetts. Interviews found that all participants encountered adults who are incapacitated and without surrogates. Four approaches for addressing surrogate needs were: (1) work to restore capacity; (2) find previously unknown surrogates; (3) work with agencies to obtain surrogates; and (4) access the guardianship system. The use of guardianship was associated with procedural challenges and ethical concerns including delays in care, short term gains for long term costs, inabilities to meet a patient's values and preferences, conflicts of interest, and ethical discomfort among interviewees. Findings are discussed in the context of resources to restore capacity, identify previously unknown surrogates, and establish improved surrogate mechanisms for this vulnerable population.
失去行为能力且孤身一人、没有代理人的成年人可能被称为“无依无靠者”。对于医疗服务提供者和医院伦理委员会来说,为这些特别脆弱的患者做决策是一个常见且棘手的问题。当解决代理人决策需求的所有其他途径都失败时,失去行为能力且孤身一人的患者可能会被转介进行“公共监护”或作为最后的手段进行监护。虽然从理论上讲这是一种合适的机制,但这些项目往往人员不足且资金短缺,将不足之处的后果留给了医疗系统和患者本人。我们描述了一项针对马萨诸塞州临床、法院和机构环境中的专业人员进行的定性研究,内容涉及解决这些患者的代理人同意问题的机制及其存在的问题。访谈发现,所有参与者都遇到过失去行为能力且没有代理人的成年人。满足代理人需求的四种方法是:(1)努力恢复行为能力;(2)寻找此前未知的代理人;(3)与机构合作以获取代理人;(4)利用监护系统。使用监护与程序挑战和伦理问题相关,包括护理延误、短期收益与长期成本、无法满足患者的价值观和偏好、利益冲突以及受访者的伦理不适。研究结果将在恢复行为能力的资源、识别此前未知的代理人以及为这一弱势群体建立改进的代理人机制的背景下进行讨论。