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

Introduction

Health care discrimination against the lesbian, gay, bisexual, transgender, queer and/or questioning (LGBTQ) community is a topic that continues to have a growing body of documented evidence even to the present day.¹ Transgender and nonbinary (TNB) individuals face heightened levels of political, structural, and social marginalization.^2–4 When it comes to health care, there have been many advances for TNB individuals, such as expanded awareness and access to gender-affirming hormone therapies and procedures.⁵ Within the United States, the success of this access is dependent on regional and local legislation with substantial political actions aimed at impeding access despite established care guidelines and medical consensus.^2–4 Fear of gender discrimination is a main reason TNB individuals avoid seeing a health care provider for medical concerns.^6–9

Health care avoidance becomes especially relevant for the TNB population as they age because of growing needs for medical care and end-of-life (EOL) planning (also referred to as advance care planning). Initiating conversations about EOL care can be difficult from both a patient and provider viewpoint. Among terminally ill patients of all genders, 37% reported having an EOL discussion with their provider,¹⁰ and among those who engaged in shared decision-making, patients received less aggressive medical care and reported increased overall quality of life.¹⁰ Regarding documentation, one study of nearly 8000 U.S. adults aged 18 years or older indicated that 26.3% of participants had completed an advanced directive. The most frequent reported reason for incompletion was lack of awareness.¹¹ Another study showed that barriers to advanced care planning completion included a lack of knowledge along with lack of motivation to complete documents.¹² Given the growing breadth of literature on EOL care, we sought to systematically review published research to identify overall opinions and obstacles to aging well, EOL care, and advance care planning among the TNB community.

Methods

Selection criteria

Selection and review of articles in this review was conducted under the Preferred Reporting Items for Systematic reviews and Meta-Analysis guidelines.¹³ This study did not meet criteria for engagement in human subjects research; institutional review board approval was not required for this review. Article inclusion criteria included peer-reviewed and non-peer-reviewed publications, explicit inclusion of TNB individuals, and mention of experiences around obstacles to aging well, EOL care, and/or advance care planning. Primary articles and systemic reviews were included. Due to the limited amount of literature available on this topic in general, articles were not exclusive to the U.S. population.

The authors determined that the inclusion of articles from outside of the U.S. was important to obtain as wide a breadth of information as possible, and that any information that was deemed to be exclusive to the U.S. would be explicitly pointed out as necessary. Our search spanned publication dates from January 1, 1988, through February 20, 2024. Exclusion criteria included articles that were not written in English, did not have explicit inclusion of TNB individuals, and/or did not have mentions about obstacles to aging well, EOL care, and/or advance care planning.

Search strategy

Two databases were utilized: PubMed (National Library of Medicine’s PubMed.gov) and Web of Science (Clarivate’s Web of Science). The search strategy was developed in collaboration with a research technician at the Medical College of Wisconsin Library using Boolean AND/OR operators. Key terms included, but were not limited to, advance care planning, EOL, palliative care, LGBTQ, sexual and gender minorities, transgender persons, queer, intersex, TNB, and nonbinary (see Table 1 for the complete search strategy).

Table 1.

Databases and Search Terms

Database	Search terms
PubMed	([“barriers” OR “Health services accessibility” OR “socioeconomic factors” OR “disparities” OR “health services needs” OR “equit” OR “inclusi”] AND (“end of life” OR “advance care planning”[MAJR] OR “terminal care” OR “Attitude to death” OR death [MAJR] OR hospice OR “palliative care”)) AND (“LGBTQ*” OR “Sexual and gender minorities” OR “Gender identity” OR “Transgender persons” OR “Queer” OR “intersex” OR “TNB” OR “Nonbinary”)
Web of Science	“barriers” OR “Health services accessibility” OR “socioeconomic factors” OR “disparities” OR “health services needs” OR “equit” OR “inclusi” (All Fields) and “end of life” OR “advance care planning” OR “terminal care” OR “Attitude to death” OR death OR hospice OR “palliative care” (All Fields) and “LGBTQ*” OR “Sexual and gender minorities” OR “Gender identity” OR “Transgender persons” OR “Queer” OR “intersex” OR “TNB” OR “Nonbinary” (All Fields) and English (Languages), others

Database

Search terms

PubMed

([“barriers” OR “Health services accessibility” OR “socioeconomic factors” OR “disparities” OR “health services needs” OR “equit*” OR “inclusi*”] AND (“end of life” OR “advance care planning”[MAJR] OR “terminal care” OR “Attitude to death” OR death [MAJR] OR hospice OR “palliative care”)) AND (“LGBTQ*” OR “Sexual and gender minorities” OR “Gender identity” OR “Transgender persons” OR “Queer” OR “intersex” OR “TNB” OR “Nonbinary”)

Web of Science

“barriers” OR “Health services accessibility” OR “socioeconomic factors” OR “disparities” OR “health services needs” OR “equit*” OR “inclusi*” (All Fields) and “end of life” OR “advance care planning” OR “terminal care” OR “Attitude to death” OR death OR hospice OR “palliative care” (All Fields) and “LGBTQ*” OR “Sexual and gender minorities” OR “Gender identity” OR “Transgender persons” OR “Queer” OR “intersex” OR “TNB” OR “Nonbinary” (All Fields) and English (Languages), others

LGBTQ, lesbian, gay, bisexual, transgender, and queer and/or questioning; TNB, transgender and nonbinary.

Starting with PubMed, articles were considered eligible for inclusion if they focused on palliative/EOL care needs, experiences, and preferences related to TNB individuals. Article abstracts were initially reviewed by the first author and, if deemed potentially eligible for inclusion, were explicitly searched for mention of “transgender,” “nonbinary,” and/or “trans.” Articles that included key terms such as “lesbian, gay, bisexual, transgender,” or “LGBT” were screened and excluded if there was no evidence of inclusion of TNB individuals specifically within the content. Once duplicates between databases were removed, each article was thoroughly reviewed for inclusion. To avoid missing additional articles not identified by our search terms, a forward and backward citation review was conducted of each article included in this review by the lead author (G.H.K.).

Data and analysis

Data were analyzed using inductive thematic analysis.¹⁴ Articles were read and inductively coded line-by-line into reoccurring descriptive themes by the lead author (G.H.K.). Information extracted from articles included summaries of themes identified, either directly by the article or through inductive analysis, along with statistical figures from quantitative articles. Analytic team meetings were used for codebook refinement, expansion, and consensus. The resulting themes were then organized for result reporting.

Results

Our systematic search procedures identified 111 articles in PubMed and 156 in Web of Science for screening (see Fig. 1).¹³ Forty-two articles were selected for full-text review, which identified nine articles that ultimately met inclusion criteria. An additional eight articles were identified during forward and backward citation review, resulting in 17 eligible articles for this systematic review (see Table 2).^1,15–30 Research predominantly occurred in the United States,^{1,16,20,21,23,24,26–29} with two articles from Canada,^18,25 one article from Australia,²² and four articles involving a combination of data from the United States, Canada, Australia, Sweden, and the United Kingdom.^15,17,19,30 Five analytical themes were identified during thematic analysis related to EOL care planning, which included fear of discrimination,^1,16–23 fear of loss of independence and identity,^{15–18,24,27,28} anticipated obstacles managing social circles,^{16–18,21,22,24–27,29} potentially unique challenges related to EOL planning logistics,^{15,16,19,24–26,28} and mechanisms for successful aging.^17,30

FIG. 1.

Flow diagram showing the literature search and selection process.¹³ TNB, transgender and nonbinary.

Table 2.

Description of Identified Articles

Authors (year of publication) reference	Study year(s)/location	Article type (number of TNB participants)	Findings related to aging and/or EOL care
Javier (2021)¹	Not applicable/United States of America	Review article	Fear of discrimination from providers in health care; experiences of having to educate medical professionals about trans-specific care
Witten (2014)¹⁵	2009–2010/United States of America, Canada, Australia, Sweden, United Kingdom, others	Survey analysis: Analysis of the Trans-MetLife Survey (N = 1963 participants)	Survey analysis found that participants expressed fears of loss of independence with aging; participants expressed fear of discrimination in long-term care facilities; participants expressed low confidence about logistics of aging such as who would be their caretakers; participants in the 61+ age group had lower rates of living will completion but higher rates of advance directive completion compared with those in the 60 and younger age groups
Adan et al. (2021)¹⁶	Not reported/United States of America	Individual semi-structured in-person interviews (N = 19 participants)	Participants mentioned experiences of abuse and assault due to their gender identity; fear of lack of control of health care treatment with aging and loss of independence; importance of maintaining identity at the EOL; mention of difficulties maintaining romantic relationships, which can exacerbate isolation; mention of financial struggle due to lost jobs due to gender identity discrimination
Witten (2014)¹⁷	2009–2010/United States of America, Canada, Australia, Sweden, United Kingdom, others	Survey analysis: Analysis of the Trans-MetLife Survey (N = 1963 participants)	Survey analysis found concerns for loss of independence with aging; concern for being treated with dignity and respectful care at the EOL; fear of loss of identity; fear of dying alone; fear of discrimination for transgender elders living with significant comorbidities
Kortes-Miller et al. (2018)¹⁸	Not reported/Canada	Semi-structured in-person group interviews (N = 23 participants)^a	Fear of long-term care facilities, specifically fear of discrimination from other residents and health care providers; fear of loss of physical and mental independence; recognition of smaller social circles with aging and fear of whether social needs could be adequately met; desire for safe and inclusive spaces for TNB and LGB adults
Witten (2015)¹⁹	2009–2010/United States of America, Canada, Australia, Sweden, United Kingdom, others	Survey analysis: Analysis of the Trans-MetLife Survey; participants who identified as lesbian, referred to as trans-lesbian (N = 276 participants)	23.1% of trans-lesbian responders did not know who would be their primary caretaker in the event of significant illness; nearly a quarter (27.2%) of respondents did not have a pension or reported “small pension” or “disability pension” to fund their EOL care needs
Rawlings (2012)²⁰	Not reported/United States of America	Case study	Fear of discrimination from health care providers; next-of-kin laws not always being applicable to same-sex couples
Catlett et al. (2023)²¹	2021/United States of America	Semi-structured video group “think-tank” interviews (N = 19 participants)^b	Conflicted with the idea of having to choose between living openly or being accepted by loved ones at the EOL; decrease initiation for EOL care planning due to perceived lack of longevity
Roberts et al. (2022)²²	2020/Australia	Mixed method approach of online interviews and semi-structured phone interviews (N = 46 transgender participants)^b	Fear of discrimination from providers and ability to receive palliative care; concern for substandard care due to lack of knowledge about LGBTQ-specific care; concern about needing to “degay” homes when requesting palliative care to avoid discrimination; fear of rejection from biological families which could exacerbate loneliness; fear of whether same-sex spouses who are assigned as health care decision-makers would be treated with respect equivalent to opposite-sex spouses
Henry et al. (2020)²³	Not reported/United States of America	Online survey (N = 154 participants)	Younger TNB adults in their 20–30s also expressed concerns about discrimination from health care providers and lack of trans-specific health care knowledge; concern for loss of autonomy with aging; low motivation to engage in EOL planning whether due to current age, social circles, or lack of clear guidance
Kcomt and Gorey (2017)²⁴	Not applicable/United States of America	Integrative review (N = 8 surveys)	Concerns of mistreatment and abuse due to gender identity; fear of becoming dependent due to loss of physical autonomy; fear of having to choose between living openly or being accepted by loved ones at the EOL; fear of whether same-sex spouses who are assigned as health care decision-makers would be treated with respect equivalent to opposite-sex spouses; poor will and durable power of attorney documentation completion rates; lack of financial planning for EOL
Pang et al. (2019)²⁵	2015–2016/Canada	Series of focus group interviews and individual semi-structured interviews (N = 24)	Intense feelings of apprehension about long-term care facilities due to combination of elderly age and gender identity; concern about small social circles due to increased stigma against TNB individuals even within the LGBTQ community, making it difficult to create relationships close enough to designate a power of attorney in substitute of biological family/spouse; concern for lost job opportunities, especially for those who transition later in life; lack of initiation for EOL planning could stem from those who transitioned later in life focusing more on living in the present
Lowers (2017)²⁶	2015/United States of America	Series of focus group interviews and individual semi-structured interviews (N = 5 transgender participants)^b	Concern about whether long-term care facilities could provide adequate trans-specific gender-affirming health care; TNB individuals face difficulties with finding and maintaining relationships with people to feel comfortable about appointing them as their health care proxy, but also acknowledging that without one biological families who are unsupportive could result in inappropriate gender-specific care; desire for primary care physician to initiate conversations about EOL care planning
Knochel et al. (2021)²⁷	2016/United States of America	Individual semi-structured interviews (N = 24)	Fear of not receiving gender-affirming care; fear of mistreatment due to loss of physical and/or mental independence; preferences for dying from illness, trauma, or suicide over being sent to a long-term care facility due to fear of mistreatment; concerns about whether same-sex spouses had the capacity to be caregivers as both participants and their spouses reach EOL simultaneously
MetLife Mature Market Institute (2010)²⁸	2009–2010/ United States of America	Online survey (N = 1206)^a	Fear of loss of independence; low rates of end-of-life care planning documentation completion
Dickson et al. (2021)²⁹	2018/United States of America	Online survey (N = 31 transgender participants)^b	TNB respondents had a higher rate of appointing a spouse/significant other as their health care power of attorney compared with cisgender respondents
Walker et al. (2017)³⁰	2009–2010/United States of America, Canada, Australia, Sweden, United Kingdom, others	Survey analysis: Analysis of the Trans-MetLife Survey; participants who completed sections on gender self-perception, caregiving, and perceptions of aging (N = 384)	Overall, participants viewed large social networks and high levels of confidence in health care providers as being associated with an increased perception of successful aging

Gender demographics for this study were not reported overall; thus, it is unclear how many transgender and nonbinary individuals were in the study.

These studies included cisgender LGB participants; the N shown specifies those who identified as transgender or nonbinary.

EOL, end-of-life; LGB, lesbian, gay, bisexual; LGBTQ, lesbian, gay, bisexual, transgender, queer and/or questioning.

Fear of discrimination in long-term care facilities

A prominent theme identified in this review was related to fear of discrimination in long-term care facilities.^1,16–23 When asked about aging and care, responses from TNB and lesbian, gay, and bisexual (LGB) adult groups in Ontario shared intense fear of discrimination within long-term care spaces, with anticipated discrimination from health care providers and fellow long-term care residents.¹⁸ Transgender participants in the United States, expressed concerns of mistreatment ranging from being misgendered to being abused and assaulted.^16,24 Surveys of LGBTQ elders that included TNB individuals in New South Wales, Australia, also reported fear of discrimination from staff and providers regarding receiving palliative care. Examples of specific concerns reported were a lack of understanding regarding LGBTQ-specific needs and receiving substandard care due to gender identity.²²

This concern about a lack of knowledge is highlighted in an analysis of a 2010 report in which transgender participants reported having to educate medical providers about trans-specific health care.¹⁹ Younger TNB adults in their 20s–30s had similar concerns regarding aging.²³ In one report from a 19-person think tank, it was recognized that long-term care facilities are not necessarily safe even for cisgender elders, and they were predicted to be especially unsafe for TNB individuals. Fear of discrimination from cisgender people stems from both within and outside of the TNB community; the need for transgender-specific training and competent facilities was noted.²¹ In separate survey results from Canada, participants stated that vulnerability with age, combined with vulnerability as a gender minoritized person, created intense feelings of apprehension and fear regarding long-term care facilities.²⁵

A concern unique to the TNB community about long-term care facilities was whether they could provide adequate care to those with specific gender embodiment needs.²⁶, In interviews with 24 TNB older adults in Minnesota, participants mentioned a fear of not receiving affirming care, such as hormone therapy or daily facial shaves for transgender women.²⁷ A similar concern was echoed in focus groups in the New York City area, in which a participant mentioned concern about whether health care providers would have adequate knowledge about care following gender-affirming surgeries, such as how to properly use vaginal lubrication and dilators, or an understanding of how to administer hormone therapy appropriately.²⁶

Fear of loss of independence and identity

Another theme identified in our review was fear of loss of independence and identity with aging.^{15–18,24,27,28} In one article looking at survey results from individuals in Ontario, Canada, many voiced concerns about increased dependence as they decline—both physically and mentally.¹⁸ Participants emphasized the importance of autonomy in decisions about their care. This opinion was echoed in other research in which TNB elders were interviewed, such as one participant in New York, who stated that the fear of treatment was mainly about decision-making being out of their control.¹⁶ An article gathering thoughts from transgender lesbian individuals found that more than a quarter (27.6%) were concerned that they would become unable to independently take care of themselves through the course of aging, and up to 57.5% were worried that they would become dependent due to a lack of physical ability.¹⁹

The importance of this topic was apparent in an analysis of the 2010 “Trans MetLife Survey on Later-Life Preparedness and Perceptions in Transgender-Identified Individuals,” where becoming dependent on others was the third top concern with regard to aging, as well as 89% of transgender respondents being moderately concerned about loss of independence with aging.^15,17,28 In a qualitative survey of TNB adults with a mean age of 30, loss of autonomy and being able to care for oneself were reported as a concern for that group as well.²³ Lastly, some participants recorded fear of mistreatment linked explicitly to a lack of physical/mental independence as they aged and that it could result in a situation where they are not able to report instances of abuse.²⁷

Along with concerns about independence, participants also expressed fear of both forgetting their identity and their identity being forgotten by others due to dementia/Alzheimer’s.¹⁸ Researchers leading an Ontario-based survey found that fear of being forced back into the closet would also lead to loss of identity. Many older transgender adults reported feeling forced to choose between their identity and safety.¹⁸ In a New York-based study, participants emphasized the importance of maintaining their identity through the end-of-life and after death.¹⁶

This was reflected in multiple other articles, in which survey respondents mentioned preferring to die at home rather than be subjected to care in a nursing facility. Concerns were expressed about whether they would receive adequate pain management, respect, and the ability to live their last moments with dignity.^17,24 Similarly, in one of the Trans MetLife Survey analyses, some individuals feared that their final days and wishes would be disrespected or that their gravestones would not present their chosen name/identity.¹⁵

Furthermore, participants expressed preferences for dying, whether from illness, trauma, or suicide, over being sent to a long-term care facility due to the fear of mistreatment.²⁷ Fear of cognitive decline and preference for death was seen in the analysis of the Trans MetLife Survey, in which respondents mentioned fear of forgetting their identity due to dementia and considerations of suicide over being mistreated in a long-term care facility.^15,17 Interestingly, when asked whether respondents were confident that they would be treated with dignity and respect by health care professionals at the end of life, the 61 and older age group had the highest confidence rate compared with respondents in the 18–60 range. In contrast, overall, 39% had little to no confidence.¹⁵

Managing social circles with aging

Another theme identified in the literature was the effects of social stigma on relationships,^21,22,24 circle size,^16–18,25 lavender/chosen families,^22,25 and designated health care power of attorney.^22,26,27,29

Social isolation was brought up in one survey as participants noted smaller social circles as they aged and were concerned about whether their social needs could be adequately met as they approached end of life.¹⁸ A survey of transgender lesbian individuals identified fear of being abandoned at the end of life due to gender identity and having to decide between living openly or being accepted by loved ones.¹⁹ Similarly, a think tank article echoed this idea of choosing between living openly or being accepted in a long-term care community.²¹ Responses from LGBTQ individuals, which included TNB individuals in New South Wales, revealed similar concerns about the ability to live openly, specifically in regard to having to “de-gay” their homes and keep their identity secret when requesting palliative care.²²

This thought was reflected in an article that commented on participants’ desires for safe and inclusive spaces for aging TNB and LGB adults.¹⁸ In another study, smaller social circles raised concerns due to the lack of an advocating voice when participants could not speak for themselves.¹⁶ Participants in this study also mentioned difficulties with romantic relationships that transgender individuals may face, which can lead to lower rates of unions—resulting in lower rates of extended families, such as children or in-laws—and further exacerbating isolation.¹⁶

A Canadian survey had mixed responses regarding isolation and designated health care power of attorney.²⁵ Some individuals said they had designated spouses or family, whereas others mentioned having no one. They also emphasized how TNB individuals are often minoritized within the LGBTQ community itself, making it even harder to form friendships close enough to entrust as a health care power of attorney.²⁵ Results from New South Wales also showed that there was concern about family rejection, especially participants who have not disclosed their identity to their biological family, which could exacerbate loneliness for those with small social circles.²² An analysis of the Trans MetLife Survey indicated that respondents considered the potential of dying alone as an unfavorable outcome.¹⁷

Focusing on isolation, the same Trans MetLife Survey analysis showed that up to 40% of respondents had never been married.¹⁵ There was a statistically significant difference between those who identified as trans masculine versus trans feminine, with trans feminine individuals reporting higher marriage rates. This difference was mirrored when asked about children, with 60.9% of trans feminine individuals having children compared with only 26.6% of trans masculine individuals. Overall, 30.7% responded that they currently live alone, with 25.2% of trans masculine participants reporting living alone compared with 44.3% of trans feminine participants reporting that they live alone. In addition, up to 30% were unsure who would care for them in case of a major illness.¹⁵

A separate analysis of transgender lesbian individuals specifically showed that about half (51.3% of 276) were in some form of a committed relationship, and a similar number (51.8% of 276) reported having children; out of the entirety of the study, 30.7% of participants reported living alone. When asked who their primary caregiver would be in the event of significant illness, 23.1% stated they did not know who would care for them. Of those who responded this way, 92% reported that they were assigned male at birth.¹⁹

Furthermore, concerns about whether same-age spouses would have the capacity to be caregivers as they both near the end of life were also brought up.²⁷ In a survey of LGBTQ older individuals in select Southern U.S. states, nearly half (48.4%) of TNB respondents stated that they had an appointed health care power of attorney compared with 62.1% of cisgender respondents.²⁹ This study also found that TNB respondents had a much higher rate of appointing a spouse/significant other as their health care power of attorney compared with the cisgender demographic.²⁹

Those from the New South Wales study showed concern about whether assigned health care decision-makers would be respected if they were same-sex spouses.²² A TNB participant from a New York-based focus group mentioned the importance of having a health care proxy to prevent family members from misgendering the individual.²⁶ In the same article, however, a participant talked about the struggle of not having a designated health care power of attorney and not wanting to feel like a burden among friends if that is all who is available to them.²⁶

Managing the logistics of EOL planning

Unsurprisingly, the logistics of EOL planning were discussed widely throughout this review and were broken down into subtopics of documentation,^15,24,26,28 financial planning,^{15,16,19,24,25} and willingness to participate in planning.^21,25

When it comes to EOL planning and documentation, responses from transgender lesbian individuals showed that overall, less than half (47.8%) had completed a will, and 38.1% had a durable power of attorney.¹⁹ From a Trans MetLife Survey analysis, 14.1% had a completed will, 13.1% had a living will, and even fewer (10.7%) had a durable power of attorney.¹⁵ Other legal EOL planning, such as funeral planning, EOL ceremonies, insurance care, etc., were at a < 4% completion rate. When stratified by age bracket, those in the 61 and older category had the lower rate (8.1%) of a completed will compared with 17.9% in the 18–30 age group but had higher completion rates for an advance directive and durable power of attorney at 9.1% and 7.4% respectively (compared with 2.2% and 1.0% in the 18–30 group).¹⁵

Reports from a survey with a mean demographic age of 30 years old showed that among trans masculine, trans feminine, and nonbinary adults, the nonbinary adults had lower completion rates for EOL planning such as wills and health care power of attorney.²³ It was also reported that a significant portion of respondents were not planning to participate in EOL care, whether due to their current age, social circles, or not having a good guide to help facilitate those activities.²³ Finally, respondents from New York mentioned the desire for their primary care provider to be the one to initiate conversations about advance care planning rather than it coming up only in situations of severe illness.²⁶

The ability to fund EOL care was discussed throughout this analysis. When asked about plans for funding EOL care, more than a fifth (21.2%) of participants in one study stated that they did not know how.²⁴ One of the New York-based studies addressed difficulties with job security and financial stability, wherein participants mentioned being fired based solely on their transgender identities.¹⁶ In a Canadian study, there was concern for those who transition later in life and the difficulty for them to hold employment due to discrimination.²⁵ In a Trans MetLife Survey analysis looking solely at transgender lesbian individuals, respondents’ questions about pension and retirement revealed that those who made <$49,999 (27.2% of group respondents) did not have pensions. Others reported living on a “small pension” or a “disability pension.”¹⁹

The same Trans MetLife Survey reported that 59.9% of participants responded “yes” to having a pension.¹⁵ Those who answered no came mainly from income earning <$34,999, corresponding to 37% of participants. Still, some individuals mentioned that the intersection between their gender identity and financial struggles caused them to forego planning for an economic future, as resources such as jobs, are stripped away due to discrimination. Nearly one third of respondents in this study were unsure how they would pay for EOL care.¹⁵

Along with documentation and finances, there was also a discussion about the general willingness of TNB individuals to participate in EOL planning. One topic mentioned by the 19-person think tank was not preparing for EOL care due to a lack of perceived longevity, that is, respondents had not anticipated living long enough to require EOL care.²¹ This thought was similar to responses reported in a Canadian study, wherein participants mentioned that the stress of dealing with day-to-day life prevents TNB individuals from even considering EOL care and planning. In addition, for those who may have transitioned later in life, their lack of initiation for EOL planning stemmed from spending their time attempting to “catch up” with what they missed in their youth before transitioning.²⁵

Successful aging

The final theme identified in our analysis was perceptions of successful aging among the TNB population. In extrapolated data from 384 participants of the Trans MetLife Survey, researchers aimed to determine how the perception of treatment from health care professionals affected their thoughts on what defines successful aging.³⁰ They were asked questions that addressed their confidence in health care professionals, their social network, their disability status, caregiver status, “out” status, and more. They reported that 13.3% of participants answered “no confidence” about being treated with respect by a health care professional. Overall, they found that large social networks and high levels of confidence in health care providers were associated with an increased perception of successful aging.³⁰

In one of the Trans MetLife Survey analyses, it was found that there was also an incidence of those who fear being outed in their death, that is, if they were not able to discard their gender-affirming belongings before death. There was also fear of exacerbated discrimination for transgender elders who are also living with comorbidities.¹⁷

Discussion

This systematic review aimed to identify thoughts regarding and obstacles to adequate EOL care for the TNB population. Our review highlights the continued gaps in advanced care and EOL planning for the TNB community, with topics relating to psychological and/or social aspects being the most frequent. The most common concern among TNB patients was fear of discrimination in health care, whether from providers or their peers in a long-term care facility. Consistent with their daily lives, TNB groups find themselves subjected to both social and legal discrimination, even in the most progressive societies.⁶

Other aging concerns identified were loss of identity and independence as well as social isolation. These concepts at face value are not especially unique to the TNB community. One study found that fears related to aging among the cisgender population include age-related diseases, especially dementia and stroke.³¹ Another study with a small sample of cisgender participants from the United Kingdom, also found that they feared the loss of independence, cognition, identity, and dignity related to dementia.³² Extensive research shows that social isolation in older adults has detrimental effects on mortality that rival other modifiable risk factors such as obesity and smoking.³³ For TNB older adults, the complications associated with these aging concerns are certainly exacerbated when factoring in gender identity. Understandably, one fears losing the ability to take care of oneself; the loss of function can be compounded with a loss of self-esteem and self-identity. For example, if a transgender woman cannot keep up with daily shaves, it could increase anxiety and discomfort about their gender expression and identity. When faced with these challenges, assistance typically falls on partners first, then additional family members, friends, and, if no one else, a third-party caregiver.

TNB individuals who have been rejected by close friends and family are at heightened risk of developing the consequences of social isolation, such as depression and anxiety.³⁴ This was relevant to Witten’s analysis, which showed that up to 30% of survey participants were unsure who would care for them in the event of a significant illness.¹⁵

From a logistical standpoint, rates of completion for documentation, such as health care power of attorney and a living will, for TNB individuals tend to be lower when compared with their cisgender counterparts.¹⁵ Specifically, for health care power of attorney, there was concern about whether the participant’s wishes would be respected if left in the hands of an estranged family member. Anticipation of facing difficulties due to gender identity may prompt early preparation among this group, ensuring that partners and/or close friends are responsible for carrying out EOL requests properly.

In addition to documentation, financing EOL care was discussed as participants were unsure if/how they could afford the necessary care. Adan et al. and Pang et al. mention how TNB discrimination makes it difficult to find and maintain steady employment, making both day-to-day financial planning and retirement planning and saving cumbersome.^16,25

A finding that is especially worth noting was the mention of a preference for early natural death/euthanasia over admission to a long-term care facility.^15,27 Negative sentiments about nursing homes among elderly adults are not a novel concept. One large study found that residents have great concern for their well-being while living in nursing homes due to fear of abuse and mistreatment, specifically related to retaliation on residents by long-term care staff.³⁵ This results in lower reported rates of rights violations and care concerns, leading to increased levels of fear, anxiety, anger, sadness, and depression among these residents.³⁵

Even the preference for death over living in a nursing home is not a new concept for aging adults, with one study showing that 30% of elderly survey respondents reported that they would prefer to die over living permanently in a nursing home.³⁶ However, the reasons behind this notion differ between TNB older adults and their cisgender counterparts. For TNB older adults, much of their hesitance revolves around fear of discrimination and mistreatment specifically related to their gender identity and gender-affirming care, a concern that their cisgender counterparts do not have to worry about. Like most older adults, TNB individuals have a desire to avoid mistreatment during a time in their lives when they are particularly vulnerable—thinking critically about what it means to have a good quality of life as they age. When individuals begin to seek death over life, it demands reflection about the current state of our health care systems and society.

Limitations

Several limitations of this review merit mention. First, the number of TNB persons participating in these studies ranged extensively from 2 to 1963, with 9 out of the 17 included studies having an n < 47—limiting generalizability.^1,15–30 More extensive surveys of TNB persons are warranted to explore EOL planning more fully among this population. Second, the diversity of participants included in the reviewed studies was lacking, with most participants being White, English speaking, having higher education, and being from higher-income countries such as the United States, Canada, and Australia.

Overall, the topics in this review could benefit greatly from more robust studies. Gaps in our knowledge in these areas would be improved by studies with larger sample sizes and greater ethnic and socioeconomic distribution among the participants, as further research is needed to identify the intersectional needs of racial/ethnic minoritized TNB persons regarding EOL planning.

There is also a severe deficit in understanding about the accessibility of gender-affirming care as one ages, whether that be access within ones’ home or in a long-term care facility. As many of the perceived fears of discrimination from long-term care facilities reported were not direct experiences, there is also an obvious lack of in-depth research on personal experiences from TNB older adults in long-term care facilities. There is also little research about how gender identity affects TNB older adults’ ability to complete EOL documents, which is important as legislation continues to fluctuate and possibly makes it more difficult for those who do not identify as their assigned sex at birth to participate in government social services.

As this review did not seek to directly compare TNB older adults with cisgender older adults, we are limited in having an incomplete list of strictly unique needs of aging TNB adults. Reasons for the absence of these data are likely related to the history of LGBTQ discrimination on both a national and global scale. With the ever-changing political climate, interest and funding for research about TNB health specifically waxes and wanes.³⁷ Furthermore, TNB participants who are open and willing to discuss these topics are limited because of possible fear of discrimination if confidentiality is inadvertently breached. Given their potentially unique needs, more research with adequate research protections is needed among TNB persons who are living in oppressive communities, including but not limited to the United States.

Conclusion

In this review, we found that TNB individuals have both common and potentially unique EOL planning considerations and care needs. Psychological and social aspects were the most substantial barriers to successful EOL planning. Fear of discrimination, loss of identity, loss of independence, and social isolation were all primary considerations in how TNB persons thought about EOL planning. Further research is needed to ensure that TNB communities are receiving proper care to help them prepare for the end of life.

Authors’ Contributions

G.H.K.: Conceptualization, methodology, formal analysis, investigation, writing—original draft; G.N.R.: Writing—review and editing, formal analysis; E.A.P.: Writing—review and editing, formal analysis; W.O.B.: Writing—review and editing, formal analysis; S.A.J.: Writing—review and editing, formal analysis, supervision, and funding acquisition. In accordance with International Committee of Medical Journal Editors’ guidelines, all authors provided: (1) substantial contributions to the design of the work; or acquisition, analysis, or interpretation of the data; and (2) contributions to drafting or reviewing the article critically for intellectual content; and (3) approval of the final article; and (4) agreement to be accountable for all aspects of the work.

Ethical Considerations

This study did not meet criteria for engagement in human subjects research; institutional review board approval was not required for this review.

Footnotes

Acknowledgments

The authors thank Ori O’Malley and the rest of the library staff at the Medical College of Wisconsin for their contributions to the literature review portion of this article, as well as Kevin Robinson for their support during the early phase of project conceptualization. The authors also thank Sarai Luna and Heidi Fall for their contributions to editing this article.

Declaration of Conflicting Interest

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding Statement

The authors are grateful for the funding support of the Medical College of Wisconsin’s Department of Psychiatry and Behavioral Medicine, which provided stipend support to the lead author in the early phases of this project.

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