Unintended Harm? Race Differences in the Relationship Between Advance Care Planning and Psychological Distress at the End of Life

Research has revealed racial disparities in advance care planning and intensity of end-of-life care. Studies of the relationship between advance care planning and sadness and anxiety at the end of life are inconclusive. The objective of this study was to determine the extent to which the relationship between advance care planning and sadness and anxiety at the end of life differs by race. This study analyzes data from 315 Medicare beneficiaries from the 2011–2016 National Health and Aging Trends Study. Caregiver-assessed sadness/anxiety at decedent's end of life was categorized as none, managed needs, and unmanaged needs. We used multinomial logistic regression and calculated relative risk and predicted probability of reporting sadness/anxiety by race and advance care planning status, controlling for demographic and health characteristics. Among non-Hispanic black/African-Americans who died, end-of-life discussions and having a health care proxy increased the predicted probability of caregivers reporting unmanaged needs related to sadness/anxiety by factors of 2.6 and 3.5, respectively (discussions: from 15% to 39%, P = 0.03; health care proxy: from 12% to 42%, P = 0.008). By contrast, among non-Hispanic white decedents, end-of-life discussions and naming a health care proxy were not associated with caregivers reporting unmanaged needs related to sadness/anxiety. Advance care planning may not work the same way for black and white individuals. End-of-life discussions and naming a health care proxy are potentially harmful to dying black patients' mental health. This finding suggests a need for additional research to understand why caregivers report unmanaged sadness/anxiety for dying black patients who engaged in advance care planning and increased attention to these patients' mental health at the end of life.