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

Abstract

Purpose:

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

Methods:

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.

Results:

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.

Conclusion:

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.

Keywords

advance care planning aging discrimination end-of-life care gender non-binary transgender

Get full access to this article

View all access options for this article.

References

1. Javier

. Palliative care needs, concerns, and affirmative strategies for the LGBTQ population. Palliat Care Soc Pract 2021; 15: 26323524211039234.

2. Resneck

. Everyone deserves quality medical care delivered without bias. American Medical Association: Chicago, IL, https://www.ama-assn.org/about/leadership/everyone-deserves-quality-medical-care-delivered-without-bias (2022, accessed 12 September 2025).

3.American Psychological Association. APA policy statement on affirming evidence-based inclusive care for transgender, gender diverse, and non-binary individuals, addressing misinformation, and the role of psychological practice and science. Washington, DC, https://www.apa.org/about/policy/transgender-nonbinary-inclusive-care (2024, accessed 6 April 2025).

4.American Medical Association. Clarification of evidence-based gender-affirming care H-185.927. Chicago, IL, https://policysearch.ama-assn.org/policyfinder/detail/%22Clarification%20of%20Evidence-Based%20Gender-Affirming%20Care%22?uri=%2FAMADoc%2FHOD-185.927.xml (2024, accessed 12 September 2025).

5. Coleman

, Radix

, Bouman

, et al. Standards of care for the health of transgender and gender diverse people, version 8. Int J Transgend Health 2022; 23: S1–S259.

6. Grant

, Mottet

, Tanis

, et al. Injustice at every turn: A report of the national transgender discrimination survey. National Center for Transgender Equality and National Gay and Lesbian Task Force: Washington, DC, https://transequality.org/sites/default/files/docs/resources/NTDS_Report.pdf (2011, accessed 12 September 2025).

7. Paine

. Embodied disruption: “sorting out” gender and nonconformity in the doctor’s office. Soc Sci Med 2018; 211: 352–358.

8. Rastogi

, Menard

, Miller

, et al. Health and wellbeing: A report of the 2022 U.S. transgender survey. Advocates for Transgender Equality: Washington, DC, https://ustranssurvey.org/download-reports/ (2025, accessed 12 September 2025).

9. Seelman

, Colón-Diaz

MJP

, LeCroix

, et al. Transgender noninclusive healthcare and delaying care because of fear: Connections to general health and mental health among transgender adults. Transgend Health 2017; 2: 17–28.

10.

10. Wright

, Zhang

, Ray

, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008; 300: 1665–1673.

11.

11. Rao

, Anderson

, Feng-Chang

, et al. Completion of advance directives among U.S. consumers. Am J Prev Med 2014; 46: 65–70.

12.

12. Dark-Freudeman

and Bensadon

. Advance care planning: End-of-life hopes and fears among community dwelling adults. J Health Psychol 2022; 27: 3177–3189.

13.

13. Page

, McKenzie

, Bossuyt

, et al. The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ 2021; 372: n71.

14.

14. Braun

and Clark

. Using thematic analysis in psychology. Qual Res Psychol 2006; 3: 77–101.

15.

15. Witten

. End of life, chronic illness, and trans-identities. J Soc Work End Life Palliat Care 2014; 10: 34–58.

16.

16. Adan

, Scribani

, Tallman

, et al. Worry and wisdom: A qualitative study of transgender elders’ perspectives on aging. Transgend Health 2021; 6: 332–342.

17.

17. Witten

. It’s not all darkness: Robustness, resilience, and successful transgender aging. LGBT Health 2014; 1: 24–33.

18.

18. Kortes-Miller

, Boulé

, Wilson

, et al. Dying in long-term care: Perspectives from sexual and gender minority older adults about their fears and hopes for end of life. J Soc Work End Life Palliat Care 2018; 14: 209–224.

19.

19. Witten

. Elder transgender lesbians: Exploring the intersection of age, lesbian sexual identity, and transgender identity. J Lesbian Stud 2015; 19: 73–89.

20.

20. Rawlings

. End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals. Int J Palliat Nurs 2012; 18: 29–34.

21.

21. Catlett

, Acquaviva

, Campbell

, et al. End-of-life care for transgender older adults. Glob Qual Nurs Res 2023; 10: 23333936231161128.

22.

22. Roberts

, Harvey

, Poulos

, et al. Lesbian, gay, bisexual, transgender and gender diverse and queer (LGBTQ) community members’ perspectives on palliative care in New South Wales (NSW), Australia. Health Soc Care Community 2022; 30: e5926–e5945.

23.

23. Henry

, Perrin

, Coston

, et al. Transgender and gender non-conforming adult preparedness for aging: Concerns for aging, and familiarity with and engagement in planning behaviors. Int J Transgend Health 2020; 21: 58–69.

24.

24. Kcomt

and Gorey

. End-of-life preparations among lesbian, gay, bisexual, and transgender people: Integrative review of prevalent behaviors. J Soc Work End Life Palliat Care 2017; 13: 284–301.

25.

25. Pang

, Gutman

and de Vries

. Later life care planning and concerns of transgender older adults in Canada. Int J Aging Hum Dev 2019; 89: 39–56.

26.

26. Lowers

. End-of-life care planning for lesbian, gay, bisexual, and transgender individuals. J Hosp Palliat Nurs 2017; 19: 526–533.

27.

27. Knochel

and Flunker

. Long-term care expectations and plans of transgender and nonbinary older adults. J Appl Gerontol 2021; 40: 1542–1550.

28.

28.The Metlife Mature Market Institute and The American Society on Aging. Still out, still aging: The MetLife study of lesbian, gay, bisexual, and transgender baby boomers. Westport, CT, https://www.sageusa.org/wp-content/uploads/2025/08/sageusa-still-out-still-aging.pdf (2010, accessed 12 September 2025).

29.

29. Dickson

, Bunting

, Nanna

, et al. Appointment of a healthcare power of attorney among older lesbian, gay, bisexual, transgender, and queer (LGBTQ) adults in the Southern United States. Am J Hosp Palliat Care 2021; 38: 1291–1298.

30.

30. Walker

, Powers

and Witten

. Impact of anticipated bias from healthcare professionals on perceived successful aging among transgender and gender nonconforming older adults. LGBT Health 2017; 4: 427–433.

31.

31. Rupprecht

, Martin

and Lang

. Aging-related fears and their associations with ideal life expectancy. Eur J Ageing 2022; 19: 587–597.

32.

32. Corner

and Bond

. Being at risk of dementia: Fears and anxieties of older adults. J Aging Stud 2004; 18: 143–155.

33.

33. Donavan

and Blazer

. Social isolation and loneliness in older adults: Review and commentary of a National Academies report. Am J Geriatr Psychiatry 2020; 28: 1233–1244.

34.

34. Hajek

, König

, Buczak-Stec

, et al. Prevalence and determinants of depressive and anxiety symptoms among transgender people: Results of a survey. Healthcare (Basel) 2023; 11: 705.

35.

35. Caspi

. Residents’ fear of retaliation in America’s nursing homes: An exploratory study. J Appl Gerontol 2024; 43: 497–514.

36.

36. Mattimore

, Wenger

, Desbiens

, et al. Surrogate and physician understanding of patients’ preferences for living permanently in a nursing home. J Am Geriatr Soc 1997; 45: 818–824.

37.

37. Weideman

BCD

, Ecklund

, Alley

, et al. Research funded by National Institutes of Health concerning sexual and gender minoritized populations: A tracking update for 2012-2022. Am J Public Health 2025; 115: 374–386.