Understanding Implications of End-of-life Preferences to Optimize Advance Care Planning Among Older Americans

项目摘要 在生命末期照顾老龄人口，既是一个重大挑战，也是改善以患者为中心的护理的机会。老龄化和垂死往往需要在接受医疗护理方面做出艰难的决定，特别是在患有阿尔茨海默病或阿尔茨海默氏症相关痴呆的老年人中。此外，这些决定是在不了解通常构成这些决定的残疾和死亡率之间的权衡的情况下做出的。通过包括这样的以患者为中心的数据来优化提前护理计划(ACP)具有增强共享决策和避免不良结果的潜力。 ACP确定并澄清患者的价值观和期望，以制定临终治疗偏好，这些偏好随后为生命末期的治疗决策提供参考。然而，ACP经常发生在数据真空中。提供者很难准确预测，患者，特别是那些患有阿尔茨海默病或阿尔茨海默氏症相关痴呆的患者，可能会错误地估计他们的偏好将如何影响结果。该项目旨在通过实现三个关键目标来改善机场核心计划。首先，确定临终关怀偏好对老年人和照顾者结局的影响。第二，探索与改变临终偏好相关的因素，特别强调阿尔茨海默病或阿尔茨海默氏症相关痴呆。最后，确定患者(例如阿尔茨海默病或阿尔茨海默氏症相关痴呆)、提供者、ACP就诊的区域预测因素以及对以患者为中心的结果的影响。 直到最近，才收集到向这些关键问题提供信息所需的数据。国家健康和老龄化趋势研究(NHATS)是对医疗保险受益人的纵向调查，获得了第一个具有全国代表性的关于临终关怀偏好的纵向数据。此外，与NHATS的数据链接将向NHATS受访者中的照顾者和临终体验提供信息。这项建议对患有阿尔茨海默病或阿尔茨海默氏症相关痴呆的老年人尤其重要，因为它将为认知衰退患者提供ACP的最佳时机，并更好地向代理决策者提供信息。这项建议将作为未来以患者为中心、数据驱动的ACP的基础，其结果可以立即由临床医生合并到现有的ACP中，并将向研究人员和政策制定者提供如何优化ACP的信息。

Project Summary Caring for the aging population at the end of life presents both a major challenge and opportunity to improve patient-centered care. Aging and dying often necessitate difficult decisions about the receipt of medical care, particularly among older adults with Alzheimer’s disease or Alzheimer’s related dementias Further, these decisions are made without an understanding of the trade-offs between disability and mortality that commonly underlie them. Optimizing advance care planning (ACP) by including such patient-centered data has the potential to enhance shared decision making and avoid undesired outcomes. ACP identifies and clarifies patients’ values and expectations to formulate end-of-life treatment preferences which later inform treatment decisions at the end of life. Too often, though, ACP occurs in a data-vacuum. Providers struggle to accurately prognosticate and patients, particularly those with Alzheimer’s disease or Alzheimer’s related dementias, may misestimate how their preferences will influence outcomes. This project seeks to improve ACP by accomplishing three key goals. First, to determine the influence of end-of-life care preferences on older adult and caregiver outcomes. Second, to explore factors associated with changing end of life preferences with a particular emphasis on Alzheimer’s disease or Alzheimer’s related dementias. Finally, to determine the patient (e.g. Alzheimer’s disease or Alzheimer’s related dementias), provider, and regional predictors of ACP visits and implications on patient-centered outcomes. Only recently has the data needed to inform these critical questions been collected. The National Health and Aging Trends Study (NHATS), a longitudinal survey of Medicare beneficiaries, obtained the first nationally representative longitudinal data on end-of-life care preferences. Additionally, data linkages with NHATS will inform caregiver and end-of-life experiences amongst NHATS respondents. This proposal will be particularly important for older adults with Alzheimer’s disease or Alzheimer’s related dementias because it will inform the optimal timing of ACP in patients with cognitive decline and better inform proxy decision makers. This proposal will serve as the basis for future patient-centered, data-driven ACP with results that can be immediately incorporated by clinicians into existing ACP and will inform researchers and policy-makers on how to optimize ACP.