Racial disparities in advance care planning and end‐of‐life care preferences among decedents in the health and retirement study (2002‐2019)

Abstract

AbstractBackgroundAlzheimer’s Disease and Related Dementias (ADRD) is more prevalent among racial/ethnic minority older adults who also experience disparities in end‐of‐life care quality. The rate and timing of advance care planning conversations among individuals living with ADRD vary by race/ethnicity and other sociodemographic factors. As cognitive impairment progresses, caregivers, communities, and healthcare providers face challenges related to end‐of‐life care planning and management. Early advance care planning provides the opportunity to align care management with the wishes of the patients with ADRD. Our purpose was to examine EOL care preferences and ACP in racial minority ADRD patients.MethodThe Health and Retirement Study (HRS) Exit files (2002‐2019) were used to conduct a descriptive analysis of advance care planning and end‐of‐life care preferences among decedents.ResultOf the 7,214 decedents from the HRS sample, 13% had a diagnosis of dementia, 30% were cognitively impaired but not diagnosed with dementia, and 57% were cognitively intact. The results showed significant relationships between cognitive functioning, race, gender, and marital status. The mean cognitive impairment scores were worse for racial/ethnic minority participants compared to white participants, women compared to men, and widowers compared to married participants.Among the 3,102 participants with cognitive impairment or ADRD diagnosis, Black participants were 78.5% less likely to have a living will and 57.8% less likely to have a discussion about end‐of‐life care compared to non‐Hispanic white participants. Similarly, participants of other racial minority groups were 88% less likely to have a living will and 57.5% less likely to have an end‐of‐life discussion compared to white participants. Gender and marital status were not significant predictors of having discussed end‐of‐life care preferences. In terms of end‐of‐life care preferences, Black participants were 3.29 times more likely to prefer all possible end‐of‐life care and 66% less likely to refuse extensive care measures compared to white participants.ConclusionBlack older adults with ADRD had lower rates of advance care planning and preferred intensive care measures vs. comfort care compared to their white counterparts. Recognition of these differences can inform the design and provision of interventions and educational programs to improve equity in end‐of‐life care.