Racial and Ethnic Disparities in Palliative Care: A Systematic Scoping Review

Abstract

Beginning with the modern hospice movement over a half century ago, palliative care has provided patient-centered, evidence-informed care that reduces symptom burden, limits unnecessary hospitalizations, and increases well-being for individuals and families living with serious illness. Despite well-documented advances in specialist palliative care and the proliferation of programs around the nation (Dumanovsky et al., 2016), significant gaps in access and utilization persist (Goldsmith, Dietrich, Du, & Morrison, 2008; Smith & Brawley, 2014). Reflecting systemic inequities in health and health care, disparities in palliative and end-of-life care are experienced by communities of color; people who are economically disadvantaged; lesbian, gay, bisexual, and transgender individuals; and members of other marginalized groups. African 809083F ISXXX10.

Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Review of Recent Literature

“…After searching almost fourthly-thousand citations, 284 articles were included in our study, of which 147 were manuscripts that directly addressed end-of-life and hospice care, palliative care, as well as advance care planning and directives that include non-Hispanic Blacks. 4 …”

“…280 Receiving palliative care for people with serious illness, and hospice services for people approaching the end of life is no exception. 11 , 13 , 18 , 23 , 24 , 37 , 38 , 44 , 45 , 47 , 50 , 52 , 54 , 58 , 71 , 74 , 75 , 83 , 91 , 93 , 116 , 141 , 142 , 173 , 181 , 188 , 281 It is urgent that we understand and eliminate both disparities in serious illness care and disparities in end-of-life care. The story about race and palliative and hospice care in United States is very much the same story of racism in health care.…”

Invited Editorials

“…16,17 A growing body of USA and UK research points towards limited access to palliative care services. 16,18,19 Moreover, there is evidence that those from minority ethnic backgrounds are less likely to receive adequate assessment and treatment for pain, 20,21 agitation and psychological distress 17 and less likely to receive adequate information. [22][23][24] Multiple reasons are offered to explain these disparities and include a greater prevalence of non-malignant conditions in minority ethnic groups, filial responsibilities, lack of awareness and misconceptions of services, financial concerns, religious and cultural preferences, a reluctance to engage in advance care planning and language barriers.…”

“…21,28 These include providing access to trained translators, cultural competency and communications skills training for staff and organisations, and developing information resources accessible to all literacy levels and in a range of languages. 17,21,[29][30][31][32] There are recommendations to build partnerships with communities to develop policies and services, and the recruitment of a diverse workforce at all levels including policymaking and research. 21,33…”

Theory-driven role model stories improve palliative care knowledge among a diverse older population

“…Moreover, the vast majority (>90%) of protagonists were white. Given the extensive documentation of ethnic disparities in access to end-of-life care (LoPresti et al, 2016), and potential distrust of the health care system among some ethnic groups (Gardner et al, 2018), alternate palliative care educational approaches are needed.…”