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

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.

Race and birth country are associated with discharge location from hospital: A retrospective cohort study of demographic differences for patients receiving inpatient palliative care.

BACKGROUND: While past studies investigated access to palliative care among marginalized groups, few assessed whether there are differences in clinical process indicators based on demographics among those receiving palliative care. We aimed to: describe demographics among patients receiving inpatient palliative care; and evaluate whether demographic variables are associated with differences in disposition (i.e., discharge location), length of stay (LOS), and timing of inpatient palliative care referral and consultation. METHODS: Retrospective cohort study using electronic medical record data to study patients seen by inpatient palliative care at Mount Sinai Hospital in Toronto, Canada between April 2018 to March 2019. Primary outcome was disposition. Secondary outcomes were LOS, time from admission to palliative referral, and time from referral to consultation. We summarized quantitative data descriptively and used fisher exact tests to explore relationships between categorial variables. For continuous outcomes, we ran one-way ANOVA tests. FINDINGS: A total of 187 patients were referred to palliative care and met inclusion criteria. Mean age was 68·8 and 55·6% were female. 46·7% were born in Canada, 58·2% were White and 78·4% preferred English communication. Variables significantly associated with disposition were: birth country (p = 0·04), and race/ethnicity (p = 0·03). Language (F ratio = 3·6, p = 0·004) was significantly associated with time from admission to palliative care referral. No variables were associated with LOS or time from referral to consult. INTERPRETATION: Inequalities in disposition, and how long it takes to refer to palliative care may exist. Further studies should focus on understanding the underlying practices that constructed, and maintained these inequalities in care. FUNDING: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.