Black Communities Face Barriers to Advance Care Planning

A lack of trust and cultural competence are two factors fueling disparities in advance care planning and palliative care among underserved African American communities.

Black populations have long-faced a history of racism that has affected the ways they access and receive care, according to a recent study. This has contributed to widespread mistrust of the health care system among some communities. It can also deter them from receiving much-needed services during times of serious or terminal illness, researchers indicated.

“The health care system, in both private and public settings, that is engaged with financing, managing, and providing palliative and hospice care must directly address the issue of racism, discrimination, and disparities, particularly among marginalized underserved non-Hispanic Blacks,” authors stated in the study. “Mistrust in health care providers more than ever remains one of the most frequently mentioned barriers, and is rooted in pervasive discrimination on the part of the health care system and providers against minority populations, particularly non-Hispanic Blacks. We need innovative, multi-faceted, multi-disciplinary, theory-based, culturally sensitive, community- and faith-based participatory interventions.”

Researchers from Charles R. Drew University of Medicine and Science (CDU) and the David Geffen School of Medicine at UCLA analyzed data from 147 studies that addressed trends in palliative, hospice and advance care planning utilization among non-Hispanic Black communities nationwide.

The study was funded in part by the U.S. Center for Medicare & Medicaid Services (CMS), the National Institute on Minority Health and Health Disparities (NIMHD), the California Black Health Network (CBHN) and the California Health Care Foundation (CHCF).

The body of research around health inequities among Black populations has grown in recent years.

For instance, more than half (57%) of 10,000 older adults said in a 2021 survey that African Americans are less likely than caucasians to name a health care surrogate

Additionally, Black seniors 50 and older were less likely to engage in end-of-life and serious illness care conversations with their health care professionals than other racial groups, a 2016 study found. Fewer than 24% of Black participants had completed an advance directive, compared to 44% of caucasians who had.

Advance directives (AD) and other goals-of-care documentation often lack information related to cultural, religious and spiritual affiliations, as well as personal health values, the 2016 research indicated.

“Older adults who only have [a power of attorney for health care] or only have [a living will)] significantly differed in racial identity, [socio-economic status] and health,” the researchers noted. “Being a racial minority was associated with a lower likelihood to have both ADs and only [power of attorney]. The findings highlight the importance of examining the completions of two AD documents and indicate the necessity of developing distinct and concrete strategies to promote the completion of PA and [living wills.]”

Palliative and hospice care providers can be the linchpins in improving advance care planning disparity issues among African Americans, according to Karen Bullock, professor of social work at Boston College.

Serious illness care providers could do more outreach and education within their faith communities to better foster trust and understand their values, she indicated. Conversations that incorporate religious and spiritual values around end-of-life care options and goals of care could go a long way towards improving understanding and utilization, Bullock stated.

“Black people tend to trust their faith leaders, and so if the church is saying this is a good thing to do, then we will be willing to try it,” Bullock told the digital magazine Undark.