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

申请者描述(申请人提供)：本申请是针对PA-06-101，“危及生命的疾病临床决策研究(R21)”而提出的。由于危及生命的疾病，大多数美国人在生命末期无法参与护理决策。事实上，代理决策者通常是最亲密的家庭成员，他们通常会与医疗保健提供者一起做出临终治疗决定。不幸的是，关于代理决策的研究文献显示，老年患者和他们指定的代理决策者之间对于假设的健康状况不佳的情景的一致性很差。代理人和患者之间不一致的原因还不是很清楚。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。这种高度的不一致对患者自主、替代判断的理想和共享决策模式的力量的生命伦理学关注构成了严重的挑战。这项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对老年人及其指定的家庭代理决策者(老年人-代理决策者)将通过地区持续护理退休社区(辅助生活和独立住房)、老年中心招募，并在针对老年人口的出版物上展示广告。电话访问时长约45分钟，将(分别)与长者及其代理人进行电话访问，使用问卷评估对延长生命治疗的偏好、临终价值观、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。将确定影响老年人及其代理人的治疗偏好的因素。年长者-代理人不一致的程度也将被确定，以及与这种不一致相关的因素。确定导致老年人和他们的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。对这些因素的更好理解最终将改善医疗保健提供者和家人在生命末期为决定性丧失行为能力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.