Racial Inequalities Persist in End-of-Life Care for Dementia Patients

The findings of a new study reveal that Black and Hispanic patients with dementia are far less likely to utilize end-of-life services than their white counterparts. The full report underscores the importance of understanding how end-of-life care decisions are informed by previous lived experiences with racism and how utilization, treatment preferences and outcomes can differ across racial and ethnic groups.

The study, published earlier this summer by the Journal of the American Medical Association (JAMA), focuses on racial and ethnic differences in hospice use by patients with dementia. Using data from the Health and Retirement Study linked with Medicare claims, the researchers tracked the frequency and cost of hospice care, emergency department visits, and hospitalizations among more than 5,000 Medicare beneficiaries diagnosed with dementia. 

Black and Hispanic patients included in the study used less hospice care and they used the emergency department and inpatient services more frequently, incurring higher Medicare inpatient expenditures at the end of life compared with non-Hispanic white patients. Furthermore, the proportion of beneficiaries with dementia who completed advance care planning documentation was significantly lower among Black and Hispanic groups compared with white populations. Advance care planning is the process of planning for future medical care in the event that the individual becomes unable to make their own decisions.

The study’s findings suggest that many Black and Hispanic dementia patients may be receiving suboptimal care at the end of life, missing out on services that could improve their comfort and lend support to their caregivers. These results are in line with other similar trends in end-of-life care studies showing that historically underserved groups are less likely to utilize options like hospice or complete advance care directives

The authors argue that these disparities in the use of end-of-life care services are not intrinsic to race or ethnicity, but reflect many “social determinants of health, such as education, income, social support, and language” that create barriers to receiving patient-directed care at the end of life. In other words, the very inequalities that beset marginalized groups through the life course continue to negatively impact end-of-life planning and care.

Accessing hospice care after a dementia diagnosis can be difficult. In order to qualify for the Medicare hospice benefit, two different physicians must independently certify that a patient has a terminal illness with less than 6 months to live, but that’s not always possible to determine given the unpredictable trajectory of dementia. However, when the data demonstrates that hospice admission for dementia differs so drastically by race (50.5% of White dementia patients accessed hospice care, compared with 38.2% of Black dementia patients and 42.9% of Hispanic dementia patients), it exposes the reality that access to hospice care for patients with dementia is not distributed equitably across racial and ethnic groups. Although hospice is not a one-size-fits-all solution for everyone’s end-of-life needs, it’s imperative that the option of hospice care is available and equally accessible for all who qualify and prefer it.

The data in this study helps to illuminate the difference in end-of-life care utilization between racial and ethnic groups; however, it doesn’t help us understand the “why” behind these disparities, a complex and multifaceted question. To answer this question, several outside commentaries have offered their expert opinions to help fill in this gap. 

Dr. Joanna Hart, assistant professor of medicine and medical ethics at the Palliative and Advanced Illness Research Center at the University of Pennsylvania, said that “it makes sense that hospice, which is often seen as taking care away, might be viewed skeptically by members of the Black community, who might have different levels of trust in the health care system because of the very real and historic things that have happened that have marginalized them.” A myriad of historical injustices offer reason for this skepticism, such as the infamous 1932 Tuskegee experiment in which Black people in the American South were subjected to unregulated experimentation without their full consent resulting in the death of hundreds. Additionally, Black patients are still consistently undertreated for pain, and the majority of recent medical school graduates hold at at least one false belief about the biological differences between races. The racialized history and present of the American healthcare system certainly justifies a persisting skepticism in the medical establishment among Black populations. 

Dr. Jessica Besbris, director of neuropalliative care at Cedars-Sinai Medical Center, adds that “it requires an enormous amount of trust in your health care provider to talk about end-of-life care. The lack of an ongoing relationship with a provider or a previous experience with feeling unheard might make it especially hard for patients to engage in these conversations.” She implores other physicians to approach end-of-life conversations with cultural competence and humility to make sure that their patients can truly chart their own end-of-life course with full knowledge of their options. 

Several initiatives are already underway to restore some trust between historically marginalized groups and the medical establishment. Dr. Maisha Robinson, assistant professor of neurology and chair of the division of palliative care at Mayo Clinic in Jacksonville, FL, has been encouraging members of the African American community to think more proactively about their end-of-life options. As the daughter of Black church pastors herself, Dr. Robinson has personal experience with the cultural, religious, and family values that might make it hard for some people to discuss end-of-life plans, let alone consider hospice. But she is adamant that conversations about end-of-life wishes should begin before a person's situation becomes urgent. 

Dr. Robinson previously took part in a University of California, Los Angeles pilot study that invited Black pastors to become involved in efforts to increase end-of-life planning among their congregants. And after some initial success in that program, she is now involved with a similar project in Jacksonville, engaging African American community members as “advance care planning ambassadors” to encourage discussions about end-of-life care preferences in people with mild cognitive impairment and their caregivers.

“These types of efforts encourage thoughtful discussion while addressing some of the known barriers to advance care planning in African Americans including mistrust of the health care system and spiritual considerations,” Dr. Robinson said.

Compassion & Choices recognizes the urgency of the findings in this new study. Our mission is to ensure that everyone is empowered to chart their own end-of-life journey. This will only be made possible by recognizing, confronting, and addressing the systemic barriers that create the inequalities in end-of-life care utilization that we see reflected in this data. It is imperative that we continue to create opportunities and policies that allow everyone to discover what end-of-life care options most align with their priorities, values, and beliefs.