Advance care planning and appointing a healthcare proxy can be detrimental to the mental health of African American patients at the end of their lives, causing unmanageable needs related to anxiety and sadness, according to a study published in the Journal of Pain and Symptom Management.

Burdensome, aggressive, and potentially futile measures are common in end-of-life care, especially for African American patients. Although advance care planning can help reduce unnecessary treatments, black patients do not necessarily benefit as much as white patients do from this planning. Researchers at Weill Cornell Medicine in New York City, New York sought to examine how the relationship between advance care planning and anxiety and sadness at end of life can differ according to race.

Using the 2011 to 2016 National Health and Aging Trends Study, data from 315 Medicare beneficiaries were analyzed. Anxiety/sadness (as assessed by caregivers) was categorized as unmanaged needs, managed needs, and none. While controlling for health and demographic characteristics, calculated relative risk and multinomial logistic regression were used to predict probability of reporting anxiety and sadness by status of advance care planning and race.  

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In the study, non-Hispanic white patients who died did not experience unmanaged needs related to anxiety and sadness due to end-of-life planning discussions and naming a healthcare proxy, but African Americans who died did. Advanced care planning and appointing a healthcare proxy could predict the probability of caregivers reporting patients’ unmanaged needs due to anxiety and sadness by factors of 3.5 and 2.6, respectively. End-of-life discussions led to 15% to 39% increases (P =.03), and having a healthcare proxy led to 12% to 42% increases (P =.008).

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Study investigators noted that advance care planning might have unintended negative mental health outcomes for African American patients at the end of their lives, and that additional research is needed to understand why a tool intended to improve patient experiences “is associated with increased and unaddressed distress among older black adults.” The concluded, “Our findings also highlight a need for clinicians to pay increased attention to and work with caregivers to address these patients’ mental health as life draws to a close.”


Luth EA, Prigerson HG. Unintended harm? Race differences in the relationship between advance care planning and psychological distress at the end-of-life. J Pain Symptom Manage [published online August 7, 2018]. doi:10.1016/j.jpainsymman.2018.08.001