Naming racism as a root cause of inequities in palliative care research: a scoping review

Abstract

Background: Racial and ethnic inequities in palliative care are well-established. The way researchers design and interpret studies investigating race- and ethnicity-based disparities has future implications on the interventions aimed to reduce these inequities. If racism is not discussed when contextualizing findings, it is less likely to be addressed and inequities will persist.

Objective: To summarize the characteristics of 12 years of academic literature that investigates race- or ethnicity-based disparities in palliative care access, outcomes and experiences, and determine the extent to which racism is discussed when interpreting findings.

Methods: Following Arksey & O'Malley's methodology for scoping reviews, we searched bibliographic databases for primary, peer reviewed studies globally, in all languages, that collected race or ethnicity variables in a palliative care context (January 1, 2011 to October 17, 2023). We recorded study characteristics and categorized citations based on their research focus-whether race or ethnicity were examined as a major focus (analyzed as a primary independent variable or population of interest) or minor focus (analyzed as a secondary variable) of the research purpose, and the interpretation of findings-whether authors directly or indirectly discussed racism when contextualizing the study results.

Results: We identified 3000 citations and included 181 in our review. Of these, most were from the United States (88.95%) and examined race or ethnicity as a major focus (71.27%). When interpreting findings, authors directly named racism in 7.18% of publications. They were more likely to use words closely associated with racism (20.44%) or describe systemic or individual factors (41.44%). Racism was directly named in 33.33% of articles published since 2021 versus 3.92% in the 10 years prior, suggesting it is becoming more common.

Conclusion: While the focus on race and ethnicity in palliative care research is increasing, there is room for improvement when acknowledging systemic factors - including racism - during data analysis. Researchers must be purposeful when investigating race and ethnicity, and identify how racism shapes palliative care access, outcomes and experiences of racially and ethnically minoritized patients.

Keywords: Health equity; Palliative care; Race and ethnicity; Racism.

Fig. 1

PRISMA flow diagram

Fig. 2

Research focus and interpretation of findings by year.  A Number of citations where race or ethnicity were the major focus or minor focus of the stated research purpose by year. B Number of citations that named racism, used a keyword, described systemic or individual provider factors, or none by year. Keywords include ‘bias’, ‘discriminat*’, ‘systemic’, ‘prejudic*’, and ‘stereotype’. Percent is calculated using the number of citations for that year as the denominator. 2023 includes up to October 17, 2023, only

Fig. 3

Sankey diagram of citations by research focus and interpretation of findings.  This sankey diagram shows the flow of citations from research focus (whether race or ethnicity were a major or minor focus of the stated research objective) across interpretation of findings, from indirect to direct. The colour of the path indicates research focus: Blue paths denote citations that had a major focus on race or ethnicity, and grey paths denote citations that had a minor focus on race or ethnicity. Keywords include ‘bias’, ‘discriminat*’, ‘systemic’, ‘prejudic*’, or ‘stereotype’. Percents are calculated using the size of the sample ( n  = 181) as the denominator.