A personalised approach isn't always enough-specialist palliative and hospice services response to people from ethnic minority groups diagnosed with COVID-19: An observational study (COVPALL)

Background: The disproportionately high death rate of those from ethnic minority groups from COVID-19 is well documented. Little is known about how palliative care services have responded. Aims: To map and develop insights into the response of palliative care services caring for patients and families from ethnic minority groups during the COVID-19 pandemic. Methods: (design, data collection, analysis): Cross-sectional on-line survey of UK palliative care services' response to COVID-19. Quantitative data were summarised descriptively and chi-square tests used to explore relationships between categorical variables. Open-ended responses were analysed using reflexive thematic analysis. Results: 93/277 (34%) responding palliative care services reported on care for COVID-19 patients from ethnic minority groups (60/123 (49%) hospital palliative care teams and 35/152 (23%) hospice inpatient teams). Nearly two-thirds (59%) of services offered care across multiple settings. Services who supported those from ethnic minority groups were more likely to have hospital palliative care teams (χ2 =15.21, p <0.001) and less likely to have inpatient hospice (χ2 = 30.11, p <0.001) or home palliative care teams (χ2 = 7.05, p= 0.008). 61/93 (66%) responding services stated there was no difference in how they supported or reached ethnic minority groups. Five main themes were identified from free-text comments: 1) disproportionate adverse impact of restricted visiting 2) compounded communication challenges 3) unmet religious and faith needs 4) mistrust of services and 5) equal but inequitable service response. Conclusion / Discussion: Policies introduced during the COVID-19 pandemic may have disproportionately adversely impacted those from ethnic minority groups. The palliative care response may have been both unequal and inequitable. The traditional focus of personalised care is not enough. We provide urgent recommendations for service providers and policymakers.