Improving End-of-Life Care for Diverse Populations: Communication, Competency, and System Supports

Abstract

Background: While disparities in end-of-life care have been well documented, explanations for the persistence of disparities are less clear. This study sought to examine diverse perceptions of end-of-life care, especially regarding how medical professionals can better serve all populations. Objective: To investigate similarities and differences in end-of-life care preferences, across racial and ethnic groups. Design: This work consists of a qualitative study utilizing in-depth focus group discussions. Setting/Subjects: Six community-based focus groups were conducted with a total of 39 participants. Two groups were composed of African American participants; two had Latino participants; and two groups had white participants. Results: Analysis produced three major themes: (1) Clear, comprehensive, and culturally relevant provider/patient communication regarding serious illness; (2) Provider characteristics & competency; and (3) Health system supports and barriers. While all groups had individuals who expressed a strong preference for direct communication, individuals varied within groups. All groups discussed concerns that the costs of care are high and that financial considerations are given more importance than high quality care. Groups diverged in their focus on provider characteristics and feelings of marginalization. African American and Latino groups emphasized a desire to match characteristics with providers, and African American groups discussed that their marginalization in the healthcare system requires hyper-vigilance to receive high-quality care. Conclusions: Improvements in care would come from acknowledging diversity within groups, provider demonstration of comfort and competence, more effective care coordination, and recruitment of providers who share similar characteristics with the communities they serve.

Racial and Ethnic Differences in Informal and Formal Advance Care Planning Among U.S. Older Adults

“…More broadly, ACP centers around traditionally western values (i.e., patient autonomy, informed decision-making, truth-telling, and discussing the dying process), excluding groups with different values who must adapt in order to complete traditional ACP (Blackhall et al, 1995; Sabatino, 2010; Zager & Yancy, 2011). Lower ACP rates among racially and ethnically minoritized groups may also be a consequence of a healthcare system that has historically failed to invest in culturally competent care models (Braveman et al, 2011; McCleskey & Cain, 2019; Washington, 2008). In our study, the relative risks of using each ACP type relative to no ACP were significantly higher for respondents born in the United States compared to those born elsewhere.…”

Racial Disparities in Utilization of Palliative Care Among Patients Admitted With Advanced Solid Organ Malignancies

“…[5][6][7][8][9] Black patients and caregivers are also less satisfied with physician communication and overall quality of health at EOL. 10,11 Palliative care improves quality of life, decreases depressive symptoms, and increases survival when incorporated early for patients with advanced malignancies. [12][13][14] Based on the extensive body of literature describing the benefits of palliative care, several professional societies advocate for the early incorporation of palliative care for patients with cancer.…”

Care processes and racial/ethnic differences in family reports of end‐of‐life care among Veterans: A mediation analysis

“…This finding supports prior studies that have described the importance of learning and providing for the emotional-and faithrelated needs of members of Black and African American communities in EOL care situations. 33,34 In our analysis of Veteran ethnicity, the Death Benefits factor demonstrated the largest % mediated effect (1.5%) of a poor/fair overall rating and points to implications for how benefits information is communicated to family members of Hispanic Veterans after the Veteran's death. Language barriers, such as limited English proficiency and incongruent translation of benefits materials, may be a potential source of these differences.…”