End of Life Decisions: Differences in Patient and Proxy Treatment Preferences

描述（由申请人提供）：本申请是为了回应PA-06-101，“威胁生命的疾病的临床决策研究（R21）"而提交的。大多数美国人无法参与护理决定在生命的最后，由于危及生命的医疗条件。事实上，代理决策者，通常是最亲密的家庭成员，通常与医疗保健提供者一起做出生命结束的治疗决定。不幸的是，关于代理决策的研究文献揭示了老年患者和他们指定的代理决策者之间关于假设的健康状况不佳的情况下的协议。代理人和患者之间不一致的原因尚不清楚。没有任何旨在提高代理决策者准确性的干预措施是有效的。这种高度的不一致性对患者自主性的生物伦理学关注、替代判断的理想和共享决策模型的强度提出了严重挑战。拟议的研究将研究老年人及其代理人的治疗偏好以及影响他们治疗偏好的因素。200对老年人和他们指定的家庭代理决策者（老年人代理二人组）将通过地区持续护理退休社区（辅助生活和独立住房），老年中心和针对老年人口的出版物中的显示广告招募。电话访问约45分钟，将与长者及其代理人（分别）进行，使用问卷评估对延长生命治疗的偏好，生命结束价值观，社会支持因素，宗教/精神取向，健康和人口特征。数据分析（主要是多元回归）将评估老年人及其代理决策者的治疗偏好。将确定影响长者及其代理人治疗偏好的因素。还将确定老年人代理不一致的程度以及与这种不一致相关的因素。找出导致长者与其代理人之间治疗偏好不一致的因素，将具有重要的临床、教育和研究应用价值。更好地了解这些因素将最终改善医疗保健提供者和家庭在生命结束时为决策能力丧失的患者所做的共同决策。

DESCRIPTION (provided by applicant): This application is submitted in response to PA-06-101, "Research on Clinical Decision Making in Life- threating Illness (R21)". Most Americans are unable to participate in care decisions at the end of life due to life-threatening medical conditions. In fact, proxy decision makers, usually the closest family member, usually make the end of life treatment decsions with healthcare provdiers. Unfortunately, the research literature on proxy decision making reveals poor agreement between elderly patients and their designated proxy decision makers regarding hypothetical poor-health scenarios. The reasons for the discordances between proxies and patients are not well understood. No intervention designed to improve the accuracy of proxy decision makers has been effective. This high discordance poses a serious challenge for the bioethical concern with patient autonomy, the ideal of substituted judgment and the strength of the shared decision making model. The proposed research will study the treatment preferences of elders and their proxies and factors that influence their treatment preferences. Two hundred pairs of elders and their designated family proxy decision makers (elder-proxy dyads) will be recruited through area continuing care retirement communities (assisted living and independent housing), senior centers, and display ads in publications that target elderly populations. Telephone interviews, about 45 minutes long, will be conducted with elders and their proxies (separately), using questionnaires that assess preferences for life-prolonging treatment, end of life values, social support factors, religious/spiritual orientation, health, and demographic characteristics. Data analysis, primarily multiple regressions, will assess the treatment preferences of elders and their proxy decision makers. Factors influencing the treatment preferences of elders and their proxies will be identified. The magnitude of elder-proxy discordance will also be determined as well as factors associated with this discordance. Identification of the factors contributing to the discordance in treatment preferences between elders and their proxies will have important clinical, educational and research applications. A better understanding of these factors will ultimately improve the shared decision making done between healthcare providers and families at the end of life for decisionally-incapacitated patients.