Vicki Freedman

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

Research Project Description
James F. Burke, Lesli E. Skolarus, Kenneth M. Langa, Vicki Freedman, Chithra R. Perumalswami

This application seeks to understand the role of preferences for care at the end-of-life on patient centered and caregiver outcomes as well as assess the impact of advance care planning (ACP) visits. The United States population is aging and as a result ACP will increase. ACP seeks to clarify older adults? values and outcome expectations and refine end-of-life treatment preferences which, in turn, guide specific treatment decisions at

the end-of-life. This application will clarify and refine ACP by informing outcome expectations across end-of-life preferences. Specifically, we will inform data driven ACP by determining the association between end-of-life treatment preferences and both individual and caregiver outcomes. We will specifically focus on disability, mortality, wellbeing, participation in valued social activities and receipt of caregiving. For caregivers, we will focus on positive and negative aspects of caregiving, depression and anxiety symptoms, subjective well-being, financial/emotional/physical difficulty as a result of caregiving and restriction in participation in valued social activities. Furthermore, we will identify clinical scenarios where preferences are most likely to change will allow

for a more refined approach on when to provide additional support for ACP. The timing is optimal for strategies to enhance ACP visits, given Medicare's recent decision to reimburse ACP visits. As such we will explore the predictors of ACP visits and implications on patient-centered outcomes. The data needed to inform how preferences influence outcomes has only recently been collected. The National Health and Aging Trends Study (NHATS), a longitudinal survey of Medicare beneficiaries, obtained the first

nationally representative data on end-of-life care preferences and how preferences change over time. Our application will builds upon NHATS with linked data sources of Medicare, NHATS last month of life survey and the National Survey on Caregiving (NSOC). This proposal will serve as the basis for future patient-centered,

data-driven ACP. Results of this proposal can be immediately incorporated into ACP strategies and will inform future development of data-driven patient-facing ACP tools. In addition, results will directly inform ACP policymakers.

National Institute on Aging

Funding Period: 9/30/2018 to 5/31/2023

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