Sage Journals: Discover world-class research

Abstract

Background:

Sexual and gender minorities experience considerable health disparities across the life span. End of life presents unique challenges for this population, further exacerbating existing disparities.

Aim:

We aimed to identify applied patient-level palliative care interventions for sexual and gender minorities and describe how said interventions met the needs of these populations at end of life.

Design:

We conducted a scoping review in keeping with the updated Arksey and O’Malley Framework. All included reports were analyzed qualitatively to describe the intervention and summarize thematically how it met the needs of sexual and gender minorities at end of life.

Data sources:

We conducted searches in MEDLINE, EMBASE, PsychInfo, and CINAHL from 1946 to June 10, 2023. Reports were eligible for inclusion if they described a palliative care intervention delivered to sexual and gender minorities, and if the palliative care intervention responded to at least one specific need of the sexual and gender minority population(s) in question.

Results:

We included and summarized 27 reports. We identified three overarching themes describing how palliative care interventions responded to the needs of sexual and gender minorities at end of life.

Conclusions:

This review responds to a need to improve palliative care delivery for sexual and gender minorities. Recommendations derived from these interventions, including how to center and advocate for sexual and gender minorities at end of life, can be applied by any interdisciplinary palliative care provider.

Keywords

Palliative care sexual and gender minorities health equity hospice and palliative care nursing health disparate minority and vulnerable populations patient-centered care

What is already known about the topic?

Sexual and gender minorities experience significant health care disparities and have unique needs at end of life. These communities continue to have difficulty accessing high quality palliative care. Existing literature focuses on summarizing the end of life needs and experiences of sexual and gender minorities and making recommendations for providing palliative care to this population.

What this paper adds?

This study provides a summary of documented palliative care interventions that respond to the needs of sexual and gender minorities. A qualitative review highlights central themes across interventions including that they were often delivered or conceptualized by members of the very community they served, that sexual and gender minorities were centered rather than merely included in care, and that providers of these interventions behaved as advocates for sexual and gender minorities.

Implications for practice, theory, or policy

Palliative care policy makers and providers from any interdisciplinary background can leverage the qualitative descriptions of these interventions as a practical guide for how to design or redesign end of life care interventions and improve access to high quality palliative care for these communities.

Background

Sexual and gender minorities include individuals and communities encompassed under the umbrella terms queer and 2SLGBTQIA+, as well as the various communities within this acronym, such as two-spirit, lesbian, gay, bisexual, transgender, non-binary, intersex, asexual, aromantic, gender-nonconforming, pansexual, and more. For the purposes of this article and to be inclusive of those who may not feel represented by the 2SLGBTQIA+ acronym, we will refer to these communities as sexual and gender minorities.

It is now well established that sexual and gender minorities experience significant health disparities compared to their heterosexual cisgender counterparts, including greater prevalence of certain cancers and cardiovascular disease, disproportionate rates of mental illness and substance use disorders, as well as higher rates of unstable housing and fewer educational opportunities.^1–8 Beyond the health disparities experienced throughout the life course, sexual and gender minorities also have unique vulnerabilities at end of life. Many sexual and gender minority adults are at higher risk of isolation and social precarity at end of life as a result of having been ostracized by families of origin or of choosing to withdraw from family rather than disclose their sexual orientation or gender identity.⁹ Others feel alienated by families of origin with whom they remain close but who downplay the importance of their sexual or gender identity. Although sexual and gender minorities often establish chosen family within their communities, they are less likely to have children, and chosen family members may also be frail, unwell, and unable to serve as a healthcare proxy or provide caregiving support at end of life.^10–12 This is especially true of sexual and gender minorities who survive a generation of peers who died either prior to the availability of highly active antiretroviral therapy for HIV, or since, due to lack of access. Furthermore, sexual and gender minorities may mistrust the medical system, which creates additional barriers to end-of-life planning conversations with healthcare professionals.^10,13–15 Sexual and gender minorities also describe needing to “re-enter the closet” and sacrifice identity expression when seeking end-of-life care in cis-heteronormative palliative care environments.¹⁶ Finally, spirituality and sexuality are often closely linked for sexual and gender minorities. While hospice and palliative care professionals are skilled in exploring the spiritual realm, they are less comfortable when discussing sexuality, which may limit opportunities for sexual and gender minorities to explore important parts of their identity at end of life.¹⁷

Each of these vulnerabilities creates unique needs for sexual and gender minorities at end of life. When palliative care teams fail to recognize these unique needs they reduce this population’s access to high quality goal-concordant care. In a recent qualitative study by Valenti et al.,¹⁸ lesbian and bisexual older women whose spouses had died within the last 5 years reported avoidance of care planning discussions, a lack of knowledge about end-of-life care, and missing or unhelpful end-of-life conversations with clinicians.¹⁸ With respect to appointment of a healthcare proxy, Dickson et al.¹⁹ found that nearly 40% of older sexual and gender minority adults in the Southern United States do not have an appointed healthcare power attorney, and this was especially true of those who were more socially isolated, single, or who identify as transgender or gender non-binary.¹⁹ Furthermore, when palliative care providers are uneducated about the unique needs of sexual and gender minorities at end-of-life or act on biased beliefs, their sexual and gender minority patients may experience discrimination.²⁰ In a study of sexual and gender minorities living in Zimbabwe, Hunt et al.²¹ found that participants experienced difficulty accessing palliative care due to stigma amongst their communities and healthcare providers, ultimately leading to a lack of spiritual support and even painful and undignified deaths.²¹

Several recent reviews have been published on the needs and preferences of as well as barriers faced by sexual and gender minorities at end of life.^22–26 However, to our knowledge, there are no studies that review applied patient-level palliative care interventions for this population. Our study was designed to answer the question “what applied patient-level palliative care interventions for sexual and gender minorities have been described in the literature, and how do said interventions meet the needs of sexual and gender minorities at end of life?”. In asking this question, we sought to center the work of those who have served sexual and gender minorities at end of life, as well as highlight and learn from the ways in which palliative care has been designed and delivered to meet the needs of sexual and gender minorities. We therefore conducted a scoping review and qualitative content analysis of interventions described and provide recommendations for how palliative care providers can best care for sexual and gender minorities at end of life.

Methods

We conducted a scoping review with a qualitative content analysis to answer the research question “what applied patient-level palliative care interventions for sexual and gender minorities have been described in the literature. and how do said interventions meet the needs of sexual and gender minorities at end of life.” This scoping review adheres to the updated Arksey and O’Malley methodology for scoping reviews and we reported our findings in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)—Extension for Scoping Reviews.^27,28

Search strategy

We designed our text word search and use of MeSH headings to reflect the diversity of sexual and gender minority communities (Table 1). To increase the sensitivity of our search we searched for reports pertaining palliative care or HIV/AIDS given the disproportionate impacts of the HIV/AIDS crisis on sexual and gender minority communities. Throughout its history, HIV/AIDS has been referred to by different terms, which were represented within our text words. With respect to palliative care, we included terms that are often used to describe the discipline including supportive care, end-of-life care, and death and dying, as well as environments where palliative care may be delivered, namely hospice. We did not include “intervention” as a concept given a lack of standardization in the definition of a healthcare intervention and in the interest of making our search as sensitive as possible.

Table 1.

Concept map for database search pertaining to patient-level palliative care interventions for sexual and gender minorities.

Concept 1 Who (Population)	Concept 2 (What)
Sexual and gender minorities text words: sexual and gender minorities/LGB/queer/gay/lesbian/transgend/bisexual/two-spirit/homosex/HIV/AIDS/human immunodeficiency virus/acquired immunodeficiency syndrome/GRID/gay-related immune deficiency	Palliative care text words: end-of-life care/palliative care/supportive care/palliat*/hospice/home palliative care/death and dying

We searched four databases, including MEDLINE, EMBASE, PsychInfo, and CINAHL, on June 10, 2023, using a combination of MeSH headings and keywords. The primary author designed all search strategies with the help of a university librarian. We did not apply timeframe restrictions. Complete search strategies and results are included in the Supplementary Materials (Supplemental Table 1A-D). To enhance the literature review, we conducted a hand-search of studies cited within reports subject to full text review.

Eligibility criteria

Eligibility criteria were discussed prior to and iteratively throughout article review. We considered reports to be eligible for inclusion if they described an applied palliative care intervention for patient(s) of any age with any terminal illness; if the described palliative care intervention was delivered by any interdisciplinary team member(s); and if the intervention was described as addressing at least one unique need of one or more sexual and gender minority population(s). The authors did not predefine the unique needs of this population, rather needs were identified as any population-specific care requirement to which the intervention was intended to respond. These unique needs are detailed in the results section. Interventions carried out in any country were eligible for inclusion. Reports of any methodological type were eligible for inclusion so long as a full text was available. Reports were excluded if the target population did not include a sexual and gender minority patient or patient population, if there was no description of a patient-level palliative care intervention—including if there was a recommended intervention but no description of its application—if the applied patient-level palliative care intervention did not respond directly to at least one need of the sexual and gender minority population(s) receiving care, and if the reference was not an original publication, a full text work, or if it was not available in the English language.

Study selection

All citations were imported into Covidence. Both authors independently reviewed all citations by title and abstract. Citations for which the title was promising but there was no available abstract were included for full text review, and we subsequently excluded them if no full text could be located. Any disagreements regarding citations to include for full text review were discussed. Each author reviewed all full text reports independently to avoid bias. Decisions on full text reports were then compared. Any disagreements were discussed until both authors agreed. We considered citations “not retrieved” if no publication was found after searching the University of Toronto online Libraries, Google Scholar, and Google, as well as visiting the University of Toronto Gerstein Stacks, in three instances.

Analysis

For each of the included reports we extracted type, year, and country of publication, the patient population in question, where palliative care was delivered, the type of patient-level palliative care intervention described, and the methodologies used within each publication. Together, both authors reviewed all included reports to generate a concise description of each intervention. To thematically summarize the data and describe how the included interventions met the needs of sexual and gender minorities at end of life, we conducted a conventional qualitative content analysis of all included reports.²⁹ Content was open coded manually by each author, and a deductive codebook was created as each article was reviewed. Deductive open codes were compared to triangulate findings, and any divergence was discussed. Together both authors sorted open codes into sub-themes and then into overarching themes through an iterative process to ensure familiarity with the content.

Findings

Search results

We retrieved 13,472 citations from MEDLINE, EMBASE, PsychINFO, and CINAHL. A total of 8743 non-duplicate citations were screened by title and abstract, and 259 reports were sought for retrieval. Of these, 45 could not be retrieved. A total of 214 reports were included for full-text review. Reasons for exclusion and the number of reports excluded for each reason are found in the PRISMA flow diagram (Figure 1). We included a total of 27 reports for data extraction and content analysis (Table 2).^30
–56

Figure 1.

PRISMA flow diagram for scoping review of applied patient-level palliative care interventions for sexual and gender minorities.

Table 2.

Publication features and qualitative themes identified in 27 reports included in a scoping review of applied patient-level palliative care interventions designed to meet the needs of sexual and gender minorities.

Author, date, country	Population and setting of study	Research methodology	Intervention categories	Disciplines involved in intervention	Qualitative themes identified
Abrams et al.,³⁰ 1989, United States of America	Gay men living with HIV/AIDS and their supports in San Francisco receiving care from visiting nurses and Hospice of San Francisco	Program description	Community-Based and Residential Hospice Palliative Care Model for gay men living with HIV/AIDS	Primary caregiver, primary physician, RN, medical social worker, attendants, volunteers, bereavement counselors, others.	Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Acquaviva,³¹ 2017, United States of America	LGBTQ individuals with life-limiting illnesses	N/A, Book	Palliative Care Communication Tool (pp. 28–40) Palliative Care Assessment Tool (pp. 89–104)	No disciplines described explicitly. Any healthcare provider can use these interventions.	Centering sexual and gender minority identity at end of life
Arbiv and Carusone,³² 2018, Canada	Gay men living with HIV/AIDS in Toronto, Ontario receiving care at Casey House	Program description	HIV/AIDS Residential Hospice	Staff unspecified, group of activists, PLHA, and medical personnel involved in development	Palliative care by the community, for the community Palliative care providers as advocates with sexual and gender minorities
Arno,³³ 1986, United States of America	Gay men living with HIV/AIDS in San Francisco county receiving care from the Shanti project and/or Hospice of San Francisco	Program description	Psychosocial Support Program for gay men living with HIV/AIDS Community-Based and Residential Hospice Palliative Care Model for gay men living with HIV/AIDS	Shanti project: Psychologist, volunteers Hospice: Nurses, social workers, home attendants, volunteers, physicians, therapists, massage therapists	Palliative care by the community, for the community Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Arthur,³⁴ 2015, United States of America	Lesbian, Gay, Bisexual, and Trans (LGBT) elders, or older adults	Clinical tool description	Palliative Care Cultural Assessment Tool, LGBT Assessment Guide, Inclusive Disclosure Questions	Developed for use by social workers, applicable to many others	Centering sexual and gender minority identity at end of life
Barnes et al.,³⁵ 1993, Canada	Gay men living with HIV/AIDS admitted to Women’s College Hospital in Toronto, Ontario	Retrospective chart review of epidemiologic and psychosocial patient data	Hospital-Based Psychosocial Care Service for gay men living with HIV/AIDS	Core clinical services provided by psychologist, social worker, chaplain	Palliative care by the community, for the community Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Beringer et al.,³⁶ 2017, Canada	Canadian Lesbian, Gay, Bisexual, and Transgender (LGBT) older adults	Phase 3 of three-phase national project. Development of a web-based platform	Web-based platform for end-of-life conversations	N/A, any inter-disciplinary health care provider can refer patients to this resource	Palliative care by the community, for the community Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Brecher and Romero,³⁷ 2023, United States of America	Genderqueer patient at end of life desiring gender-affirming intervention at inpatient VA hospice	Case study, description of and reflection on clinical approach	Facilitating gender transition at end of life	Pharmacist, psychologist, social worker, chaplain, medical team.	Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Campbell and Catlett,³⁸ 2019, United States of America	Transgender elder receiving hospice care in the mid-Atlantic region of the United States	Case study with analysis of (1) interview with hospice volunteer (2) art created by patient in hospice	Spiritual care intervention for trans identified elder at end of life	Hospice volunteer	Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Chiotti and Joseph,³⁹ 1995, Canada	Gay men living with HIV/AIDS in Toronto, Ontario receiving care at Casey House	Case study; Program description, analysis of geographical location	HIV/AIDS Residential Hospice	Staff members not specified, volunteers	Palliative care by the community for the community
Day,⁴⁰ 2021, United States of America	Gay men living with HIV/AIDS in Toledo, Ohio receiving care at David’s House	Narrative analysis incorporating interview data and the author’s personal reflections	HIV/AIDS Residential Hospice	Staff members not specified, volunteers	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Fraser and Hesse,⁴¹ 1988, United States of America	Gay men living with HIV/AIDS in San Francisco county receiving care from the AIDS Homecare and Hospice Program	Program description	Community-Based and Residential Hospice Palliative Care Model for gay men living with HIV/AIDS	RN case manager, social worker, attendant care, volunteers, bereavement counselors, office staff, supervisors, program director, medical director, consultant psychiatrist	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities
Garvey,⁴² 1994, United States of America	Elderly lesbians and gay men living with HIV/AIDS in San Francisco County receiving care from the AIDS Home Hospice Model of the Visiting Nurses and Hospice of SF	Program description	Community-Based and Residential Hospice Palliative Care Model for elderly lesbians and gay men living with HIV/AIDS	Registered nurse case manager, social worker, counselors, therapists, nutritionist, home care aide, medical director, chaplain, volunteers, and an on-call system.	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities
Katoff and Dunne,⁴³ 1988, United States of America	Gay men living with HIV/AIDS in New York City receiving care from the Gay Men’s Health Crisis	Program description	Psychosocial Support Program for gay men living with HIV/AIDS	Volunteers, volunteer therapists, peer support persons, nurses, financial specialists, psychiatrists, social workers	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Knight,⁴⁴ 1990, United States of America	Gay men living with HIV/AIDS in Amarillo, Texas receiving care at St. Anthony’s Hospice	Program description	HIV/AIDS Residential Hospice Volunteer Program	Volunteers, staffing not otherwise specified	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Kotarba and Hurt,⁴⁵ 1995, United States of America	Gay men living with HIV/AIDS receiving care at Mercy House	Program description; ethnographic assessment incorporating formal interviews with stakeholders	HIV/AIDS Residential Hospice	Physician, volunteers, director of volunteer services, nurses	Centering sexual and gender minority identity at end of life
Ley,⁴⁶ 1988, Canada	Gay men living with HIV/AIDS in Toronto, Ontario receiving care at Casey House	Program description	HIV/AIDS Residential Hospice	Nurses, medical director, staff physicians providing evening/nighttime/weekend coverage, volunteers, social worker	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities
Lippe et al.,⁴⁷ 2021, United States of America	Transgender patient at end of life, particularly when their level of conscious-ness is reduced and they cannot communicate	Case study, palliative nursing context	Evidence-based approach to identifying ethical considerations when caring for trans patient at EOL	Primary palliative nurses	Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Lopez and Getzel,⁴⁸ 1984, United States of America	Gay men living with HIV/AIDS in New York City receiving care from the Gay Men’s Health Crisis	Program description	Modified Crisis Intervention Model for gay men living with AIDS	Social workers, volunteers	Palliative care by the community, for the community Palliative care providers as advocates with sexual and gender minorities
McCabe et al.,⁴⁹ 2022, Scotland	Gay men living with HIV/AIDS in Edinburgh Scotland receiving care at Milestone House	Program description	HIV/AIDS Residential Hospice	Nurses, physician, chaplain, social worker, childcare worker	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Murrant and Strathdee,⁵⁰ 1992, Canada	Gay and bisexual men living with HIV/AIDS in Toronto, Ontario receiving care at Casey House	Program description, Volunteer Program	HIV/AIDS Residential Hospice Volunteer Program	Volunteer coordinator, volunteers	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities
Russ,⁵¹ 1999, United States of America	Gay and bisexual men living with HIV/AIDS in San Francisco receiving care from the visiting nurses and Hospice of San Francisco (VNH)	Dissertation, ethnographic participatory study	Community-Based and Residential Hospice Palliative Care Program for gay and bisexual men living with HIV/AIDS	Nurses, home care aides, social workers, physicians, hospice director, volunteers	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Smolinski and Colon,⁵² 2006, United States of America	Lesbian couple encountering terminal illness	Case study, application of inclusive disclosure questions	Inclusive disclosure questions in palliative care social work	Social worker	Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Stephany,⁵³ 1989, United States of America	Gay and lesbian patients receiving hospice care	Commentary, personal reflection	Hospice provider coming out to sexual and gender minority patients	Hospice nurse	Palliative care by the community for the community Centering sexual and gender minority identity at end of life
Stephany,⁵⁴ 1993, United States of America	Older lesbians in hospice care	Case study, commentary	Inquiring about relationship status between older women in caregiving relationship	Hospice nurse	Centering sexual and gender minority identity at end of life
Stevens and Abrahm,⁵⁵ 2019, United States of America	Lesbian, Gay, Bisexual, Trans, Queer (LGBTQ) older adults receiving palliative and end-of-life care	Case study, description of and reflection on clinical approach	Facilitating non disclosure preference at end of life	Hospital staff, not explicitly discussed apart from oncology, palliative care teams	Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life
Wiener,⁵⁶ 2003, United States of America	Gay men living with HIV/AIDS in New York City receiving care at Memorial Sloan-Kettering Cancer Center	Program description, personal reflection	Psychosocial Support Program for gay men living with HIV/AIDS	Social workers	Palliative care by the community for the community Palliative care providers as advocates with sexual and gender minorities Centering sexual and gender minority identity at end of life

HIV: Human Immunodeficiency Virus; AIDS: Acquired Immunodeficiency Syndrome; PLHA: People living with HIV/AIDS; sexual and gender minorities: Sexual and gender minorities; (y)MSM: (young) men who have sex with men; LGBT(Q)(+): Lesbian, gay, bisexual, transgender, (queer, questioning), (plus); EOL: end-of-life; RN: registered nurse.

Study characteristics

Reports were published between the years of 1984 and 2023. Fifteen reports were published between the years of 1986 and 1999, representing reports released during the early years of the HIV/AIDS crisis. Twenty reports were written about palliative care interventions in the United States of America, six in Canada, and one in Scotland. Of the six Canadian reports, four pertained to a single residential hospice, Casey House, for people living with HIV/AIDS in Toronto, Ontario. Of reports written in the United States of America, five pertained to the AIDS Homecare and Hospice Program in San Francisco, California. Publication types included 23 journal articles, 2 books, 1 PhD dissertation, and 1 commentary. Few reports (n = 5) featured measurable outcomes with corresponding results (Supplemental Table 3).

With respect to the patient population of study, 16 of 27 reports pertained to gay and bisexual men; whether men were cis or transgender was not specified. Other target sexual and gender minority populations included exclusively transgender or gender nonconforming individuals (n = 3), lesbian, gay, bisexual, transgender, or queer individuals living with a terminal illness (n = 2), lesbian patients and their spouses (n = 2), and lesbian, gay, bisexual, transgender, or queer older adults (n = 4). All 27 reports addressed adult populations. With respect to the category of intervention, seven reports described a residential hospice palliative care program, five described a psychosocial support program for people living with HIV/AIDS, another five described an intervention consisting of both community-based and residential hospice palliative care delivery, two described volunteer programs, two describe the use of inclusive disclosure questions. The following were described in one report each: a web-based platform for LGBT adults to navigate end-of-life planning, a spiritual care intervention for a trans identified elder at end of life, an evidence-based approach to identifying ethical considerations when caring for transgender people at end of life, an example of coming out to one’s sexual and gender minority patients, a cultural assessment tool, an approach to facilitating non-disclosure preference at end-of-life, an example of facilitating gender-affirming intervention at end of life, and a palliative care assessment and communication tool for providers to use with LGBTQ adults. Some papers described more than one type of intervention, and therefore the total number of interventions listed (n = 30) exceeds the number of included reports.

In terms of the disciplines involved in delivering the described palliative care interventions to sexual and gender minorities, 12 reports described interdisciplinary teams, 5 reports described only volunteer service providers, 3 reports described an intervention delivered solely by social workers, 3 by palliative nurses, and a total of 4 reports did not describe the disciplines involved in the delivery of care. Across all 27 reports, a diverse array of disciplines were involved in the delivery of patient-level palliative care interventions to sexual and gender minorities (Table 2).

Thematic representation of sexual and gender minorities’ palliative care needs met by described interventions

All 27 reports were analyzed carefully by the authors, both of whom are queer-identified palliative care providers, to determine how the described interventions responded directly to the needs of the sexual and gender minority population(s) in question. We identified several emerging themes and subthemes that captured the overarching ways in which the included interventions responded to the needs of the sexual and gender minority population(s) to which they were providing care (Figure 2). A more detailed desc-riptive content analysis is available in Supplemental Table 2.

Figure 2.

All 27 reports containing descriptions of patient-level palliative care interventions for sexual and gender minorities were subjected to a qualitative analysis. Reports were open coded by each author to identify the way that the needs of sexual and gender minorities were considered and/or met by each intervention. Open codes from all 27 reports were organized into subthemes and then into overarching themes to provide a qualitative description of how the palliative care interventions identified through this scoping review responded to the needs of sexual and gender minority populations at end of life. Three major themes were identified, including (1) palliative care by the community, for the community (2) palliative care providers as advocates with sexual and gender minorities, and (3) centering sexual and gender minority identity at end of life. Each theme had at least three subthemes, seen above in white boxes below each corresponding overarching theme.

Theme I: Palliative care by the community, for the community

Of the 27 reports, 17 made reference to being delivered by and for sexual and gender minority communities.^{32,33,35,36,39–44,46,48–51,53,56} We observed this in three key ways (Figure 2).

IA: Care imagined, delivered, and funded by the community

This observation was most applicable to hospice-based interventions for sexual and gender minorities living with HIV/AIDS. For instance, David’s House, an HIV/AIDS hospice in Toledo, Ohio, was a grassroots organization led by radical queers and activists, and they acquired funding through local drag shows, all of which was directed toward personal care and functional supports for hospice residents.⁴⁰ Day wrote about David’s House that it served as a model of citizenship based on “vulnerability, receptivity, and physical susceptibility” and therefore reflected queer organizing ethos.⁴⁰ Similarly, many hospice staff at Coming Home Hospice in San Francisco were themselves gay men, therefore creating a sense of community and safety; this was also true of the volunteer programs described, as many volunteers were drawn from the gay and lesbian communities in particular.^{33,39–41,43–45,48,50}

IB: Care situated within the community, building community

Palliative care interventions described were often situated geographically within sexual and gender minority communities. Examples of this include Casey House, an HIV/AIDS hospice in Toronto, Canada, which was established mere blocks away from Toronto’s gay village; David’s House in Toledo where 12 gay bars were located at the time; and Coming Home Hospice in the Castro District, a predominantly gay male community in San Francisco.^{40,41,46,50,52} In their analysis, Chiotti and Joseph³⁹ suggest that by situating Casey House within the gay community, the hospice offered “a symbolic place which embodies the gay community’s defiance against AIDS and its empowerment to deal with an issue hitherto marginalized by the state.” Some palliative care interventions also facilitated new communities. For instance, a web-based platform for LGBT older adults seeking end-of-life resources included a forum and discussion board where terminally ill LGBT adults and their loved ones could share experiences and form connections.³⁶

IC: Collaboration with stakeholders including patients and grassroots organizations

A total of 14 palliative care interventions for sexual and gender minorities were developed in collaboration and/or consultation with stakeholders,^{32,33,35,36,39–44,46,48,49,51} including either patients themselves or grassroots organizations like Gay Men’s Health Crisis or AIDS Committee of Toronto.^35,43,48 For instance, the aforementioned web-based platform for LGBT older adults was designed in consultation with anticipated sexual and gender minority users of the platform,³⁶ and the Hospice of San Francisco was developed in collaboration with the San Francisco AIDS Foundation, which was an all-volunteer grassroots organization composed mainly of gay community leaders and physicians.³³

Theme II: Palliative care providers as advocates with sexual and gender minorities

Within the included reports, we observed four ways that interdisciplinary palliative care providers and teams behaved as advocates with their sexual and gender minority patients at end of life (Figure 2).

IIA: Anticipating and responding to interpersonal challenges particular to sexual and gender minorities

A number of reports described an awareness of interpersonal issues that sexual and gender minority populations may face at end of life such as approaching death without traditional familial supports, a desire to reconcile with families, coming out to care providers, and the need to prepare for disability and death at a young age, especially for those dying of AIDS-related illness.^{35,36,41,43,44,48,50,51,56} Some interventions responded to these issues through implementation of peer volunteer presence and psychosocial support programs.^36,43,44,48 In addition, at least two interventions recognized and responded to the unique experience of sexual and gender minority grieving as a collective and complex process in the context of mass deaths, predominantly of gay and bisexual men with AIDS, particularly prior to the availability of highly-active antiretroviral therapy.^41,56

IIB: Anticipating and responding to structural challenges particular to sexual and gender minorities

End of life teams also anticipated and responded to systemic challenges particular to their sexual and gender minority patients. A case study by Lippe et al.⁴⁷ reflects on the systemic barriers encountered when providing care to a transgender person at end of life including anti-trans attitudes and violence within healthcare that affect both the transgender individual and their loved ones. In response, Lippe et al.⁴⁷ describe having applied a structured approach to anticipating ethical questions and reflecting on one’s biases in this circumstance. Lopez and Getzel highlight how the Gay Men’s Health Crisis responded to abuse, neglect, and prejudice encountered by gay men living with AIDS when accessing the healthcare system and social service organizations, and how they integrated advocacy into their service approach.⁴⁸

IIC: Supporting patient self-determination and empowerment

Care providers were also advocates when supporting the self-determination and empowerment of their sexual and gender minority patients at end of life. For instance, a volunteer-based intervention at St. Anthony’s Hospice in Amarillo, Texas was designed in response to an understanding of sexual and gender minorities’ spirituality as a key means of exercising self-determination. Volunteers worked with sexual and gender minority patients to facilitate artistic production and experiential transcendence in what Knight describes as a “mode of immortality” and a means for sexual and gender minorities to leave a legacy and grieve at end of life.⁴⁴

IID: Palliative care providers as educators challenging bias

Across the interventions we examined, it was common for palliative care providers to engage in formal or informal education both within and outside of their organizations to challenge bias and stigma directed against sexual and gender minority communities. For instance, Stevens and Abrahm⁵⁵ describe a case wherein they facilitated non-disclosure of their patient’s sex assigned at birth in order to uphold their expressed wishes regarding privacy at end of life. Informal education of hospital staff was key to sustaining this practice and was achieved through debriefing the ethical complexities of non-disclosure to highlight non-normative cultural priorities and the importance of ascertaining and upholding them for sexual and gender minority patients.⁵⁵

Theme III: Centering sexual and gender minority identity at end of life

As an alternative to providing inclusive care, health care teams can design and deliver care that centers a given population or set of populations with shared needs. Many of the included reports effectively centered sexual and gender minority patients and their identities in the design and delivery of end-of-life care. Palliative care teams and interdisciplinary providers practiced centering in five key ways (Figure 2).

IIIA: Communicating anticipation of sexual and gender diversity

Communicating anticipation of sexual and gender diversity was best exemplified by two interventions involving the use of inclusive disclosure questions.^52,54 Smolinski and Colon⁵² anticipated and welcomed lesbian identity at end of life by using an inclusive set of questions when inquiring about a patient’s relationship status with their same-sex companion. In doing so they modeled for other team members how to use verbal and non-verbal cues to express anticipation of and comfort with lesbian patients, rather than assuming cis-heteronormative identity.⁵² Similarly, Stephany—herself a lesbian—used open-ended questions to understand the nature of a connection between two older women in caregiving relationship.⁵⁴ Stephany emphasizes the importance of recognizing generational differences in terminology, highlighting the impact of the institutionally sanctioned anti-lesbian violence of “the pre-Stonewall days” on the language used by older lesbians to describe their relationships in a healthcare context.

IIIB: Practicing cultural humility

Here, cultural humility refers to the ways in which palliative care providers sought to identify and intervene upon their own biases about sexual and gender minority communities, as well as appreciate and meet the diverse needs of their sexual and gender minority patients. Garvey describes how the AIDS Homecare and Hospice Model of the Visiting Nurses and Hospice of San Francisco delivered palliative care to elderly lesbians and gay men living with HIV/AIDS. They articulate the unique challenges faced by gay and lesbian seniors such as years of being closeted and concerns regarding stigmatization when accessing contemporary resources, but also highlight the strengths of elder gay and lesbian patients, such as high sexual health literacy and well-established self-help strategies.⁴²

IIIC: Sexual and gender minority cultural norms as institutional norms

Several palliative care interventions stood out for how their institutional practices reflected the cultural norms of their sexual and gender minority patients. These interventions included David’s House, Mercy House, Milestone House, and Coming Home Hospice—all residential hospice programs for gay and bisexual men living with HIV/AIDS—as well as the psychosocial support program at Memorial Sloan-Kettering Cancer Centre.^{40,45,49,51,56} These interventions adopted sexual and gender minority cultural norms through an emphasis on touch as an expression of spirituality and means of healing from the notion of being untouchable, the recognition of relationship as a critical part of healing and specifically the relationship between staff and patient as reciprocal and mutually beneficial, and the use of culturally relevant language and gender-vague pronouns by those being cared for and those providing care.^45,51,56 As Kotarba writes about AIDS hospice, “this culture allows for the mixing and melding of medicine, alternative healing, gay politics, government funding, and spirituality, as well as the unprecedented expansion of nurse and patient autonomy.”⁴⁵

IIID–E: Celebrating and affirming sexual and gender minority identities; embracing sexual and gender minority family structures

Multiple interventions were notable for celebrating and affirming the various identities of their sexual and gender minority patients, and/or for embracing non-normative sexual and gender minority family structures. Campbell and Catlett describe a volunteer’s interaction with a transgender woman receiving hospice care; through the collaborative compilation of a multimedia book about her life experiences, this patient met a spiritual need for connection and personal expression at end of life that is often disallowed to trans people in healthcare settings.³⁸ Brecher and Romero³⁷ describe the case of a genderqueer veteran admitted to an inpatient VA hospice, who desired gender-affirming treatments in their final 6 months of life. Although hospice staff were initially unfamiliar with how best to support this patient, they educated themselves, helped the veteran access gender-affirming hormone treatment, and normalized gender-affirming expression such as applying nail polish and wearing feminine clothing.³⁷ Finally, Stephany provides an example of how sexual and gender minority palliative care providers can offer a distinct type of affirmation to their sexual and gender minority patients by coming out to them, and makes a strong argument for the importance of sexual and gender minority representation in palliative care environments.⁵

Discussion

Main findings

We identified 27 reports published between the years of 1984 and 2023 describing applied palliative care interventions that respond to the needs of sexual and gender minorities living with a terminal illness. We qualitatively analyzed each report and identified three unifying themes including (1) palliative care by the community, for the community, (2) palliative care providers as advocates with sexual and gender minorities, and (3) centering sexual and gender minority identity at end of life.

What this article adds?

To our knowledge, this is the first scoping review of applied patient-level palliative care interventions for sexual and gender minorities, and the first study to provide a qualitative description of how applied palliative care interventions meet the needs of sexual and gender minority patients at end of life. Existing reviews pertaining to end-of-life care for sexual and gender minority populations summarize the needs of the community,²² the experiences and preferences of sexual and gender minorities with serious illness,^23,26 palliative and end-of-life care for sexual and gender minorities in the context of cancer,²⁴ and barriers to providing palliative care to members of this population with cancer.²⁵ In contrast, our review provides a summary of past and present real-life examples of end-of-life care interventions that meet the needs of sexual and gender minority populations. We also offer a set of recommendations grounded in our thematic findings, for how palliative care providers can better serve their sexual and gender minority patients (Box 1).

Box 1.

Recommendations for interdisciplinary palliative care providers delivering end-of-life care to sexual and gender minorities.

Center sexual and gender minority identities at end of life:
• Anticipate sexual and gender diversity in care environments and communicate that anticipation to patients and loved ones (e.g. use inclusive and open-ended questions such as “who is important in your life?” or “what is your relationship to your primary caregiver?” rather than using heteronormative gendered language)
• Practice with cultural humility by seeking to identity and intervene upon your own biases about sexual and gender minorities, including internalized biases, and familiarizing yourself with the unique needs of various sexual and gender minority communities while retaining curiosity about the extent to which individuals may or may not identify with a community or its presumed needs^{22–26,57–63,67–70}
• Whether you are a care provider or an institutional leader in palliative care, consider how your institution can support the development and implementation of interventions by and for sexual and gender minorities
• Celebrate and affirm sexual and gender minority identities and family structures in your care environments (e.g. explore patients’ relationship to their sexuality at end of life, welcome all gender expressions, adapt to meet the needs of chosen families, hire sexual and gender minorities both in front-line and in leadership positions)
Engage as an advocate with sexual and gender minorities at end of life:
• Anticipate, acknowledge, and respond to the interpersonal and structural challenges faced by various sexual and gender minority communities at end of life (e.g. the possibility of alienation from family of origin, traumatic loss related to HIV/AIDS, mistrust of the healthcare system, experience of transphobia in care environments)
• Support sexual and gender minority patient self-determination and empowerment at end of life (e.g. recognize and leverage an individual’s strengths rooted in their sexual orientation and/or gender identity, assist people in meeting their goals at end of life even if grounded in a cultural context that is not your own)
• Challenge bias and stigma directed against sexual and gender minority communities when you see it in your care environments and intervene on abuse, neglect, or discrimination of a sexual and gender minority individual
• Leverage your position as a healthcare provider to engage in formal and informal education of others within or outside your organization (e.g. debrief ethically complex cases, help your colleagues understand and meet the needs of their sexual and gender minority patients at end of life, suggest alternative language when you see or hear inappropriate terminology used in reference to sexual and gender minorities)

While there is a body of primary research on interventions designed to improve end-of-life care for sexual and gender minority populations, those interventions are largely targeted at the level of healthcare education rather than patient-level care.^57,58 For example, Chidiac et al.⁵⁸ developed an education program for palliative care teams and were successful in increasing knowledge, confidence, and comfort with the unique issues and needs of sexual and gender minority patients in the palliative care setting. Others have recommended affirmative strategies including the collection of sexual or gender identity status at intake, demonstrating sensitivity, referring to culturally competent teams and community resources, creating a safe and inclusive environment by displaying markers of inclusion in clinical spaces, affirming relationships, and engaging in reflection to understand bias, however the implementation of these recommendations is not desc-ribed in the literature.^59
–63

Many publications document the impact of the early HIV/AIDS crisis on the delivery of hospice services. These publications focus primarily on the challenges existing hospice organizations faced in accommodating a younger population with needs, lifestyles, and family structures that were previously uncommon in their institutions.^64–66 In contrast, our review includes a subset of articles on this topic that describe interventions that went beyond accommodation and responded directly to the needs of sexual and gender minorities living with HIV/AIDS. About 16 of the 27 reports we analyzed described palliative care interventions for gay and bisexual men living with HIV/AIDS in the 1980s–1990s, of which 14 were notable for having been in some way delivered or conceptualized by members of sexual and gender minority communities. This subset of publications represents a proliferation of formalized end-of-life care interventions designed specifically for and by sexual and gender minorities. Interventions from this era, such as the various hospice programs we include, and the programs delivered by the Gay Men’s Health Crisis are born directly from the cultural needs and strengths of sexual and gender minorities. In both their number and qualitative richness, these articles illustrate that much of our understanding of how to provide end-of-life care to sexual and gender minority communities is grounded in the early work of those affected by HIV/AIDS.

Importantly, one of the central themes we identified in our qualitative analysis of the interventions included in this review was “centering sexual and gender minority identity at end of life.” Centering sexual and gender minorities in the provision of palliative care both recognizes that one’s sexual orientation and gender identity are important parts of their life and does not presume what role these identities may or may not play in their end-of-life care. To effectively center each sexual and gender minority patient with terminal illness, there must also be palliative care interventions that intentionally serve to meet the needs of transgender and gender nonconforming people, sexual and gender minority people of color, Indigenous sexual and gender minorities, and sexual and gender minorities with other intersecting identities. Although not all reports included in this review referred to the racial or gender identities of those they served, those that did described a predominantly White cisgender gay male community. This observation likely represents a failure to document the true diversity of sexual and gender minority populations receiving palliative care interventions and highlights a gap in the literature. Similarly, the literature included in this review is almost exclusively North American despite having not limited our search geographically, suggesting that palliative care interventions for sexual and gender minorities outside North America may be essentially undocumented in the academic literature. This limits our insights into how to meet the needs of sexual and gender minorities at end of life to the sociocultural contexts of North America. To this end, although there were qualitative commonalities across described palliative care interventions, it bears remembering that sexual and gender minorities belong to a diverse array of communities and sub-communities, each of which has their own set of individual needs based on their socioeconomic contexts, geopolitical contexts, and intersecting identities.

Limitations of this article

This scoping review was limited to a search of the extant literature and did not incorporate a survey of palliative care providers or organizations. We are cognizant of patient-level palliative care interventions for sexual and gender minorities whose applications are not represented in the literature and therefore were not included in the present review. One such example is the Canadian Virtual Hospice Two-Spirit and LGBTQ+ Proud, Prepared, and Protected online resource.⁶⁷ Similarly, we searched four large databases, however we may have included additional publications had we searched others. It is possible that some excluded palliative care interventions did consider and respond to the needs of sexual and gender minorities, but if this was not clearly described in the article it was assumed to be of minimal importance to the development of the intervention and was therefore excluded. For example, while most HIV/AIDS services likely provided care to gay and bisexual men, publications referencing these were excluded if they did not explicitly describe members of their patient population as sexual and gender minorities or did not specify how they developed and delivered their intervention(s) to meet these communities’ unique needs.

Finally, most reports in this review did not include outcome measurements or results. This scoping review therefore serves primarily as a description and qualitative analysis of included reports and does not provide information about the efficacy of most palliative care interventions described.

Implications for policy and future research

This review provides a list of examples and recommendations for how palliative care providers and policy makers might best provide end-of-life care to sexual and gender minorities. However, there still exists a paucity of literature describing end-of-life care interventions for this population, particularly outside of North America. This review also highlights a gap in evaluation, with few of the included publications including measured outcomes and corresponding results; this represents an area for further research. Furthermore, we have commented on the lack of literature pertaining to palliative care interventions for sexual and gender minorities who also belong to intersecting minoritized and racialized communities. There is therefore a need for further program description and evaluation in this area, and likely for enhanced program development.

Recommendations for care

In the absence of an abundance of literature on applied patient-level palliative care interventions for sexual and gender minorities, we encourage palliative care providers and policy makers to identify and reach out to local sexual and gender minority-focused programs and experts with specific questions about how they can serve their patient populations. Providers should also refer to existing reviews on the needs and preferences of sexual and gender minorities at end of life, as well as those providing recommendations and best practices.^{22
–26,57–63} We recommend accessing specific palliative care resources for sexual and gender minorities including the Canadian Virtual Hospice Two-Spirit and LGBTQ+ Proud, Prepared, and Protected online resource⁶⁷ and the National Health Service’s guide on achieving quality for lesbian, gay, bisexual, and transgender people at end of life.⁶⁸ For general resources pertaining to healthcare for sexual and gender minorities we recommend educational resources offered by the National Resource Centre on LGBTQ+ Aging and Health⁶⁹ and Rainbow Health Ontario,⁷⁰ as well as Caring for LGBTQ2S People: A Clinical Guide, Second Edition.⁷¹

Based on our qualitative analysis and knowledge of the literature, the authors make the following practical recommendations, and we challenge palliative care providers from all disciplines to begin implementing these strategies in their practice (Box 1). These recommendations are rooted in qualitative data as well as the authors’ expert opinions, and therefore are not assigned a grade.

Supplemental Material

sj-pdf-1-pmj-10.1177_02692163231214123 – Supplemental material for Applied patient-level palliative care interventions designed to meet the needs of sexual and gender minorities: A scoping review and qualitative content analysis of how to support sexual and gender minorities at end of life

Supplemental material, sj-pdf-1-pmj-10.1177_02692163231214123 for Applied patient-level palliative care interventions designed to meet the needs of sexual and gender minorities: A scoping review and qualitative content analysis of how to support sexual and gender minorities at end of life by Lilian Robinson and Cam Matamoros in Palliative Medicine

Supplemental Material

sj-pdf-2-pmj-10.1177_02692163231214123 – Supplemental material for Applied patient-level palliative care interventions designed to meet the needs of sexual and gender minorities: A scoping review and qualitative content analysis of how to support sexual and gender minorities at end of life

Supplemental material, sj-pdf-2-pmj-10.1177_02692163231214123 for Applied patient-level palliative care interventions designed to meet the needs of sexual and gender minorities: A scoping review and qualitative content analysis of how to support sexual and gender minorities at end of life by Lilian Robinson and Cam Matamoros in Palliative Medicine

Footnotes

Author contributions

Both authors made a substantial contribution to the design of this work as well as the acquisition, analysis, and interpretation of data. All authors either drafted or critically revised this article, approved the version to be published, and have participated sufficiently in the work to take public responsibility for appropriate portions of the content.

Consent and data sharing

No patient data was used and therefore no consent was obtained. Data extracted from included reports is available in Table 2 and the . Most reports included in this review are available through academic institutional access. Please contact the corresponding author if a report(s) cannot be obtained.

Declaration of conflicting interests

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

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical approval

Research Ethics Board approval was not required for this work.

Registration and protocol

A protocol was not prepared. Complete search strategies are available in the .

ORCID iD

Lilian Robinson

Supplemental material

Supplemental material for this article is available online.

References

Brown

Tracy

JK.

Lesbians and cancer: an overlooked health disparity. Cancer Causes Control 2008; 19(10): 1009–1020.

Quinn

Sanchez

Sutton

, et al. Cancer and lesbian, gay, bisexual, transgender/transsexual, and queer/questioning (LGBTQ) populations. CA Cancer J Clin 2015; 65(5): 384–400.

Mustanski

Garofalo

Emerson

EM.

Mental health disorders, psychological distress, and suicidality in a diverse sample of lesbian, gay, bisexual, and transgender youths. Am J Public Health 2010; 100(12): 2426–2432.

Alzahrani

Nguyen

Ryan

, et al. Cardiovascular disease risk factors and myocardial infarction in the transgender population. Circ Cardiovasc Qual Outcomes 2019; 12(4): e005597.

Trans PULSE Canada. Trans Pulse Canada quickstat #2—Primary care and unmet health care needs [Internet]. Trans PULSE Canada. https://transpulsecanada.ca/results/quickstat-2-primary-care-and-unmet-health-care-needs/ (2020, accessed 12 December 2022).

Scheim

Bauer

Shokoohi

Drug use among trans-gender people in Ontario, Canada: disparities and associations with social exclusion. Addict Behav 2017; 72: 151–158.

Fantz

Roberts

TK.

Barriers to quality health care for the transgender population. Clin Biochem 2014; 47(10-11): 983–987.

Casey

The health of LGBTQIA2 communities in Canada. Report of the standing committee on health. House of Commons [Internet]. https://www.ourcommons.ca/Content/Committee/421/HESA/Reports/RP10574595/hesarp28/hesarp28-e.pdf (2019, accessed 12 December 2022).

Westwood

Willis

Fish

, et al. Older LGBT+ health inequalities in the UK: setting a research agenda. J Epidemiol Community Health 2020; 74(5): 408–411.

10.

Valenti

Jen

Parajuli

, et al. Experiences of palliative and end-of-life care among older LGBTQ women: a review of current literature. J Palliat Med 2020; 23(11): 1532–1539.

11.

Cartwright

Hughes

Lienert

End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex 2012; 14(5): 537–548.

12.

de Vries

Gutman

. End-of-life preparations among LGBT older adults. Generations 2016; 40(2): 46–48.

13.

de Vries

Gutman

Humble

, et al. End-of-life preparations among LGBT older Canadian adults: the missing conversations. Int J Aging Hum Dev 2019; 88(4): 358–379.

14.

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(6): e5926–e5945.

15.

Walker

Powers

Witten

TM.

Transgender and gender diverse people’s fear of seeking and receiving care in later life: a multiple method analysis. J Homosex 2023; 70(14): 3374–3398.

16.

Lutz

Ehrlich

Barriers to LGBTQIA-inclusive palliative care. Am J Hosp Palliat Med 2023; 40(6): 580–584.

17.

Fair

TM.

Lessons on older LGBTQ individuals’ sexuality and spirituality for hospice and palliative care. Am J Hosp Palliat Med 2021; 38(6): 590–595.

18.

Valenti

Janssen

Enguidanos

, et al. “By the time she got sick it was just kind of too late”: a qualitative study on advanced care planning among bereaved lesbian, gay, and bisexual older women. Palliat Med 2022; 36(2): 375–385.

19.

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 Med 2021; 38(11): 1291–1298.

20.

Stein

Berkman

O’Mahony

, et al. Experiences of lesbian, gay, bisexual, and transgender patients and families in hospice and palliative care: perspectives of the palliative care team. J Palliat Med 2020; 23(6): 817–824.

21.

Hunt

Bristowe

Chidyamatare

, et al. ‘So isolation comes in, discrimination and you find many people dying quietly without any family support’: accessing palliative care for key populations–an in-depth qualitative study. Palliat Med 2019; 33(6): 685–692.

22.

Lintott

Beringer

, et al. A rapid review of end-of-life needs in the LGBTQ+ community and recommendations for clinicians. Palliat Med 2022; 36(4): 609–624.

23.

Rosa

Roberts

Braybrook

, et al. Palliative and end-of-life care needs, experiences, and preferences of LGBTQ+ individuals with serious illness: a systematic mixed-methods review. Palliat Med 2023; 37(4): 460–474.

24.

Cloyes

Candrian

Palliative and end-of-life care for sexual and gender minority cancer survivors: a review of current research and recommendations. Curr Oncol Rep 2021; 23(4): 39.

25.

Haviland

Burrows Walters

Newman

Barriers to palliative care in sexual and gender minority patients with cancer: a scoping review of the literature. Health Soc Care Community 2021; 29(2): 305–318.

26.

Harding

Epiphaniou

Chidgey-Clark

Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med 2012; 15(5): 602–611.

27.

Levac

Colquhoun

O’Brien

KK.

Scoping studies: advancing the methodology. Implement Sci 2010; 5; 69.

28.

Tricco

Lillie

Zarin

, et al. PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med 2018; 169(7): 467–473.

29.

Hsieh

H-F

Shannon

SE.

Three approaches to qualitative content analysis. Qual Health Res 2005; 15(9): 1277–1288.

30.

Abrams

Parker-Martin

Unger

KW.

Psychosocial aspects of terminal AIDS. Patient Care 1989; 23(19): 41–52.

31.

Acquaviva

KD.

LGBTQ-inclusive hospice and palliative care: a practical guide to transforming professional practice. New York, NY: Columbia University Press, 2017, p. 297.

32.

Arbiv

Carusone

SC.

The evolution of Casey house: the response to a changing HIV patient population. Univ Toronto Med J 2018; 95(1): 31–32.

33.

Arno

PS.

The nonprofit sector’s response to the AIDS epidemic: community-based services in San Francisco. Am J Public Health 1986; 76(11): 1325–1330.

34.

Arthur

DP.

Social work practice with LGBT elders at end of life: developing practice evaluation and clinical skills through a cultural perspective. J Soc Work End Life Palliat Care 2015; 11(2): 178–201.

35.

Barnes

Barrett

Weintraub

, et al. Hospital response to psychosocial needs of AIDS in patients. J Palliat Care 1993; 9(2): 22–28.

36.

Beringer

Gutman

de Vries

Developing a web-based platform to foster end-of-life planning among LGBT older adults. Gerontechnology 2017; 16(1): 48–55.

37.

Brecher

Romero

MS.

A request for gender-affirming treatment in end-of-life care: a case study from an inpatient VA hospice program. Am J Hosp Palliat Med 2023; 0(0): 1–3. https://journals.sagepub.com/doi/abs/10.1177/10499091231174245

38.

Campbell

Catlett

Silent illumination: a case study exploring the spiritual needs of a transgender-identified elder receiving hospice care. J Hosp Palliat Nurs 2019; 21(6): 467–474.

39.

Chiotti

Joseph

AE.

Casey house: interpreting the location of a Toronto AIDS hospice. Soc Sci Med 1995; 41(1): 131–140.

40.

Day

Care, crisis and coalition: imagining antiprophylactic citizenship through AIDS hospice activism. Cult Health Sex 2021; 23(11): 1532–1544.

41.

Fraser

Hesse

AIDS homecare and hospice in San Francisco: a model for compassionate care. J Palliat Care 1988; 4(4): 116–118.

42.

Garvey

AIDS care for the elderly: a community-based approach. AIDS Patient Care 1994; 8(3): 118–120.

43.

Katoff

Dunne

Supporting people with AIDS: the gay men’s health crisis model. J Palliat Care 1988; 4(4): 88–95.

44.

Knight

CF.

Networking with the gay community to meet the needs of AIDS patients: special considerations for volunteer training. Am J Hosp Care 1990; 7(1): 31–35.

45.

Kotarba

Hurt

An ethnography of an AIDS hospice: toward a theory of organizational pastiche. Symb Interact 1995; 18(4): 413–438.

46.

Ley

DC.

The Casey house model. J Palliat Care 1988; 4(4): 111–115.

47.

Lippe

Eyer

Rosa

, et al. Caring for an unconscious transgender patient at the end of life: ethical considerations and implications. J Hosp Palliat Nurs 2021; 23(4): 300.

48.

Lopez

Getzel

GS.

Helping gay AIDS patients in crisis. Soc Casework 1984; 65(7): 387–394.

49.

McCabe

Richardson

Taylor

, et al. Milestone house: the story of a hospice for people with HIV/AIDS. J R Coll Physicians Edinb 2022; 52(1): 73–79.

50.

Murrant

Strathdee

AIDS, hospice and volunteers. The Casey House volunteer program. A case study. J Volunt Adm 1992; 10(4): 11–17.

51.

Russ

AJ.

Giving, dying, and the practice of care in AIDS hospice. Cornell University, Ithaca, NY, 1999.

52.

Smolinski

Colon

Silent voices and invisible walls: exploring end of life care with lesbians and gay men. J Psychosoc Oncol 2006; 24(1): 51–64.

53.

Stephany

TM.

Lesbian hospice nurse: the visible presence. Am J Hosp Care 1989; 6(5): 13–14.

54.

Stephany

TM.

Lesbian hospice patients. Home Healthc Now 1993; 11(6): 65.

55.

Stevens

Abrahm

JL.

Adding silver to the rainbow: palliative and end-of-life care for the geriatric LGBTQ patient. J Palliat Med 2019; 22(5): 602–606.

56.

Wiener

Group intervention in the early days of the GRID epidemic: a reflection. In: Willinger

Rice

(eds) A history of AIDS social work in hospitals: a daring response to an epidemic. New York, NY: Haworth Press, 2003, pp.143–154.

57.

Sprik

Gentile

Cultural humility: a way to reduce LGBTQ health disparities at the end of life. Am J Hosp Palliat Med 2020; 37(6): 404–408.

58.

Chidiac

Grayson

Almack

Development and evaluation of an LGBT+ education programme for palliative care interdisciplinary teams. Palliat Care Soc Pract 2021; 15: 26323524211051388.

59.

Maingi

Radix

Candrian

, et al. Improving the hospice and palliative care experiences of LGBTQ patients and their caregivers. Prim Care 2021; 48(2): 339–349.

60.

Maingi

Bagabag

O’mahony

Current best practices for sexual and gender minorities in hospice and palliative care settings. J Pain Symptom Manage 2018; 55(5): 1420–1427.

61.

Bristowe

Hodson

Wee

, et al. Recommendations to reduce inequalities for LGBT people facing advanced illness: ACCESSCare national qualitative interview study. Palliat Med 2018; 32(1): 23–35.

62.

Javier

NM.

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

63.

Barrett

Wholihan

Providing palliative care to LGBTQ patients. Nurs Clin North Am 2016; 51(3): 501–511.

64.

Andersen

MacElveen-Hoehn

Gay clients with AIDS: new challenges for hospice programs. Hosp J 1988; 4(2): 37–54.

65.

Kovacs

Rodgers

AY.

Meeting the social service needs of persons with AIDS: hospices’ response. Hosp J 1995; 10(4): 49–65.

66.

Librach

SL.

Acquired immunodeficiency syndrome: the challenge for palliative care. J Palliat Care 1987; 3(2): 31–33.

67.

Canadian Virtual Hospice. Two-spirit and LGBTQ+ proud, prepared, and protected [Internet]. Canadian Virtual Hospice. https://www.virtualhospice.ca/2SLGBTQ (2021, accessed 8 February 2023).

68.

National Health Service. The route to success in end of life care – achieving quality for lesbian, gay, bisexual and transgender people [Internet]. National End of Life Care Programme. https://www.england.nhs.uk/improvement-hub/wp-content/uploads/sites/44/2017/10/End-of-Life-Care-Route-to-Success-Achieving-Quality.pdf (2012, accessed 23 September 2023).

69.

National Resource Center on LGBTQ+ Aging. Featured resources [Internet]. Sage, Advocacy and Services for LGBTQ+ Elders. https://www.lgbtagingcenter.org/resources/ (2010–2023, accessed 23 September 2023).

70.

Rainbow Health Ontario. Resource library [Internet]. Rai-nbow Health Ontario. https://www.rainbowhealthontario.ca/lgbt2sq-health/resource-library/ (2022, accessed 23 Sep-tember 2023).

71.

Bourns

Kucharski

Peterkin

, et al. Caring for LGBTQ2S people: a clinical guide. 2nd ed. Toronto; Buffalo; London: University of Toronto Press, 2022.

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.55 MB