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

项目摘要 在生命的最后时刻照顾老龄化人口是一个重大的挑战，也是改善以病人为中心的护理的机会。衰老和死亡往往需要关于接受医疗护理的困难决定，特别是在患有阿尔茨海默病或阿尔茨海默病相关痴呆症的老年人中。此外，这些决定是在不了解通常作为其基础的残疾和死亡率之间的权衡的情况下做出的。通过包括此类以患者为中心的数据来优化提前护理计划（ACP），有可能增强共享决策并避免不期望的结果。 ACP识别并澄清患者的价值观和期望，以制定生命终了时的治疗偏好，从而为生命终了时的治疗决策提供信息。然而，ACP经常发生在数据真空中。提供者很难准确地说明和患者，特别是那些患有阿尔茨海默氏症或阿尔茨海默氏症相关痴呆症的患者，可能会错误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ACP。首先，确定临终关怀偏好对老年人和照顾者结果的影响。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病相关痴呆症。最后，确定患者（例如阿尔茨海默病或阿尔茨海默病相关痴呆）、提供者和ACP访视的区域预测因素以及对以患者为中心的结局的影响。 直到最近才收集到为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的数据链接将告知NHATS应答者的护理人员和临终经历。这一建议对于患有阿尔茨海默病或阿尔茨海默病相关痴呆症的老年人尤其重要，因为它将为认知能力下降的患者提供ACP的最佳时机，并更好地为代理决策者提供信息。该提案将作为未来以患者为中心，数据驱动的ACP的基础，其结果可以立即被临床医生纳入现有的ACP，并将告知研究人员和政策制定者如何优化ACP。

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.