Systematic review of the primary research on minority ethnic groups and end-of-life care from the United Kingdom

Abstract

Context: Patients from minority ethnic groups experience lower rates of referrals to end-of-life (EoL) care services, higher levels of dissatisfaction with services, and perceive some services as culturally inappropriate.

Objectives: To systematically review original studies of minority ethnic groups and EoL care in the U.K. and appraise their quality.

Methods: Searches were carried out in 13 electronic databases, eight journals, reference lists, and the gray literature. Studies of minority ethnic groups and EoL care in the U.K. were included. Studies were graded for quality and key themes were identified.

Results: Forty-five studies met inclusion criteria. Study quality was good on average. Identified key themes included age structure; inequality by disease group; referrals; caregivers; place of care and death; awareness of services and communication; and cultural competency. Strategies described for the reduction of inequities were partial and reactive. The format of 10 studies prevented quality grading; these were, however, reviewed as they provided unique insights. Variations in terminology and sampling frames complicated comparison across studies.

Conclusion: The results highlight the multiple and related factors that contribute to low service use and substandard quality of services experienced by minority ethnic groups, and the need for authors to clarify what they mean by "culturally competent" EoL care. The synthesis of diverse and disparate studies underpins a number of key recommendations for health care professionals and policymakers. Tackling these epidemiological, demographic, institutional, social, and cultural factors will require a systematic and organization-wide approach rather than the current piecemeal and reactive interventions.