Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: A systematic mixed-methods review

Abstract

Background: Lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ+) individuals experience discrimination throughout the care continuum, including during serious illness and at end of life. High-quality palliative care requires that health professionals deliver individualized services that reflect the needs, experiences, and preferences of LGBTQ+ persons. Aim: To identify and appraise existing evidence related to the needs, experiences, and preferences for palliative and end of life care among LGBTQ+ individuals with serious illness. Design: Data-based convergent synthesis design reported per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Data sources: PubMed, Embase, Cochrane CENTRAL, PsycINFO, CINAHL, and Scopus from January 1, 2010 to November 6, 2020. Results: Of 4875 results captured, 69 articles underwent full-text review and 13 were retained for analysis. Most studies were from North America with trans individuals represented in 10 of 13 studies. Needs ( n = 6) included increased social support, institutional safety, economic and legal supports, and advocacy to mitigate health barriers.Experiences ( n = 12) were driven by fear and worry associated with discrimination/stigma,providers’ hetero-/cisnormative assumptions, homophobia and transphobia, social isolation, and an undignified death. Preferences ( n = 6) pertained to inclusion of chosen families in decision-making, disclosure of LGBTQ+ identity based on safety of the clinical environment, and a desire to maintain autonomy. Conclusions: The robustness of the science has improved regarding the needs, experiences, and preferences of trans individuals. Actionable, inclusive policies coupled with sustained and integrated cultural sensitivity training for health workers are mandatory. Interventional research is critical to enhance tailored palliative care for LGBTQ+ people and their chosen families.