Palliative Care Experiences Among Adults From Underrepresented Racial and Ethnic Groups in the United States: A Scoping Review

Abstract

Background Patients from underrepresented racial and ethnic groups (URGs) in the United States (US) experience disparities in accessing palliative care (PC) at the end of life (EOL). Additionally, little effort has been made to understand their experiences with PC. Objectives To identify and synthesize existing literature on PC experiences among adults from URGs in nursing homes, community settings, and hospitals in the US. Methods Guided by the Joanna Briggs Institute methodological recommendation and Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews, we conducted a scoping review. We searched PubMed, EMBASE, CINAHL, Scopus, and ProQuest Dissertations & Theses Global from inception to January 2024. Results We included five studies representing Hispanic/Latino, American Indian, African/Black American, and Chinese individuals. Data were organized around two themes: navigating PC pathway and choices and practices during PC. Navigating PC pathway theme highlights that despite the several barriers URGs face when accessing PC, they seek PC services due to their limited formal family assistance in managing their chronic conditions and pain. The choices and practices during PC theme emphasize the roles URG family members play in EOL care, the patient’s care preferences, and their spiritual practices and beliefs related to EOL care. Conclusion This scoping review reveals limited literature about URG experiences with PC and highlights the need for more studies to focus on making PC services more accessible to URGs and providing culturally sensitive care to meet the needs of the diverse growing US population.