Achieving Goal-Concordant End-of-Life Care: The Roles of Race/Ethnicity and Advance Care Planning

Abstract

Goal-concordant care, care that aligns with patients’ preferences, values, and goals, is an important component of quality healthcare, particularly for seriously ill older adults approaching the end of life who commonly face a period of increased contact with the healthcare system. Advance care planning (ACP) provides space for patients to identify their preferences, values, and goals regarding future healthcare treatment via advance directives (i.e., formal ACP) or goals-of-care conversations with loved ones and providers (i.e., informal ACP). ACP has been promoted as a means to achieve goal-concordant care, reduce overly intensive end-of-life care, and improve both patient and family member outcomes. Unfortunately, substantial research suggests inadequate completion of advance directives, particularly among racially and ethnically minoritized groups. Further, little is known about racial/ethnic differences in the prevalence of informal ACP among older adults and few studies have explored the relationship between either ACP type and goal-concordant end-of-life care among a racially and ethnically diverse sample of older adults. Finally, no studies known to this author have examined how either ACP type impacts the health-related bereavement outcomes of recently bereaved loved ones.

The purpose of this dissertation was to examine the use of formal and informal ACP among a racially and ethnically diverse sample of older adults and to identify relationships between both ACP types, goal-concordant end-of-life care, and the health-related bereavement outcomes of recently bereaved partners. This dissertation includes three manuscripts that summarize findings from studies using data from the 2012-2018 waves of the nationally representative, longitudinal Health and Retirement Study. The first manuscript summarizes findings from sequential, multinomial logistic regression modeling used to assess relationships between race/ethnicity and ACP type (i.e., no ACP, informal ACP only, formal ACP only, or both ACP types). Non-Hispanic Black and Hispanic respondents were more likely to report no ACP and less likely to report both ACP types compared to non-Hispanic White respondents. The second manuscript describes a study examining the relationship between the two ACP types and goal-concordant end-of-life care and examining whether the relationship between ACP types and goal-concordant care differed by race/ethnicity. Multivariable logistic regression models showed that informal ACP was associated with significantly higher odds of goal-concordant care, and formal ACP increased the predicted probability of goal-concordant care for Black respondents. The third manuscript describes the final study, which used multivariable ordinal and negative binomial regression to examine the association between decedents’ ACP and their bereaved partners’ self-rated health and depressive symptoms, respectively. Neither formal ACP nor informal ACP were significantly associated with bereaved partners’ self-rated health or depressive symptoms.

In summary, this dissertation supports important relationships between ACP, race/ethnicity, and end-of-life outcomes. Specifically, our findings indicate that informal ACP contributes to goal-concordant care, but racial/ethnic differences remain in ACP use and disparities may be present in receipt of goal-concordant care at the end of life. Future work must identify mechanisms for engraining appropriate ACP into routine healthcare for older adults, adapting existing ACP interventions to the needs and preferences of a racially and ethnically diverse older adult population, and addressing ongoing racial and ethnic disparities in end-of-life planning and care.