Aging and End-of-Life Care Planning Among Transgender and Nonbinary Individuals: A Systematic Review

The objective of this review was to identify perceptions of end-of-life (EOL) care needs among transgender and nonbinary (TNB) individuals.

A systematic review was conducted following the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines. We used PubMed and Web of Science databases to identify EOL care needs, experiences, and preferences related to TNB individuals, with publication dates spanning January 1, 1988, through February 20, 2024. Articles were required to be written or translated in English, focus on EOL care factors, and include TNB individuals in the study sample; all study types were included worldwide. Duplicates across databases were removed and full-text review of all articles was conducted, with subsequent forward and backward citation review. Prominent themes were identified using thematic analysis.

Forty-two articles were selected for full-text review during database extraction, including nine articles that ultimately met inclusion criteria. An additional eight articles were identified during forward and backward citation review, resulting in 17 eligible articles included in this systematic review. We identified five major themes during thematic analysis: fear of discrimination in long-term care facilities, fear of loss of independence, maintaining social circles with aging, obstacles to EOL logistics, and what defines successful aging. Additional subthemes included fear about loss of identity, preference for euthanasia versus loss of identity, participation in EOL planning, and advance care plan/will completion.

Psychosocial aspects were the most substantial barriers to successful EOL planning. Future work is needed to support TNB individual autonomy during EOL planning and care.