Needs,Experiences,and Preferences of Sexual Minorities for End-of-Life Care and Palliative Care: A Systematic Review

Abstract

Objectives:

To identify and appraise the existing evidence for the needs, experiences, and preferences for palliative and end-of-life (EOL) care in lesbian, gay, bisexual and transgender (LGBT) populations.

Method:

The databases searched were Medline (1950-present), PsycInfo (1806-2010), Cinahl (1982-2010), and ASSIA (1987-2010).

Results:

Among 4483 articles, 133 papers were chosen for further exploration. Overall, 12 papers were retained in the study. The majority of papers focused on the cancer experience of gay men and lesbian women. Only a few papers had evidence for the bisexual population, while no studies related to transgender people.

Conclusions:

Existing evidence is explicit and indeed repetitive in highlighting the educational needs of health care professionals to explore sexual preferences, avoid heterosexist assumptions, and recognize the importance of partners in decision making. There is also a significant need to research LGBT experiences and refine services for patients and their caregivers.

Introduction

Although a significant literature indicates that socially excluded populations receive poorer access to EOL care,¹ little attention has been paid to sexual minorities. LGBT persons have a higher incidence of life-limiting and life-threatening disease due to risk behaviors linked to the experience of homophobic discrimination. The risk of smoking and alcohol abuse is higher among LGBT persons.^2–10 and is attributed to stress from homophobia, discrimination, and marginalization. These rates of smoking and alcohol use are associated with higher risk of some cancers among LBGT populations.^11–13 Lesbians have a higher lifetime risk of breast, cervical, and ovarian cancer than heterosexual women,^14,15 and gay men have a much higher risk of anal cancer¹⁶ in addition to the burden of HIV-related cancers.^17–23 There is a greater risk of HIV, breast, and prostate cancer for male-to-female transgendered people,^11,24,25 and of ovarian, breast and cervical cancer for female-to-male transgender people.²⁵ As the general population ages, the needs of LGBT older people are emerging.^26,27

Fear of discrimination and stigma prevents patients from disclosing sexual identity and delays entry to care,^28–30 particularly among older lesbian women and gay men.^31,32 Both LGBT populations,^33,34 describe providers' attitude as vital to their care. Health providers need to deliver services in a nonjudgmental, empathetic environment.^31,35 Evidence suggests that some clinicians do discriminate on the basis of sexual orientation,^36,37 and gay men have expressed concern regarding potential hostility from church-affiliated providers of hospice care.³⁸ An important consideration for palliative care is the patient's family structure. Few countries have legally recognized same-sex relationships, and a partner's decisions and advanced plans may not be recognized by birth families, who can override decisions. In the United Kingdom, civil partnerships offer rights similar to those of heterosexual couples, and the Mental Capacity Act gives same-sex couples decision making rights regardless of civil partnership status. Other (mainly European) countries have enacted similar legislations. In the United States, a complex patchwork of legislation means that in a few states same-sex marriage is legal, while others may offer rights similar to marriage, limited rights, recognition only of same-sex marriage conducted elsewhere, or an outright ban. This provides a complex backdrop in which to practice EOL care and surrogate decision making. The American Medical Association (AMA) acknowledges that the ban on same-sex marriage contributes to health disparities,³⁹ and the American Institute of Medicine of the National Academies endorses the view that minority stress causes health disparities for LGBT communities.⁴⁰ The need to address these disparities is underlined by the relatively small, variable focus by medical education curricula on LGBT identity and health.⁴¹

The United Kingdom's National End of Life Care Strategy (2008) draws attention to the needs of lesbian and gay patients and carers, and notes that there are inequalities in access to hospice care. This issue of exclusion and inequality for LGBT patients and their families is particularly important for the field of palliative care. If we truly aim to deliver person-centered care to the patient and significant others and to assist them in meeting their physical, psychological, social, and spiritual needs, then recognition and acceptance of sexual orientation and identity is essential.

Objective

Taking into consideration the increased risk of life-limiting and life-threatening disease in LGBT populations and the need to deliver care in line with the philosophy of palliative care, this systematic review aims to identify and appraise the evidence of the needs, experiences, and preferences for palliative and EOL care in LGBT people.

Methods

Search strategy

In July 2010 we searched four electronic databases. The databases searched were Medline (1950-present), PsycInfo (1806-2010), Cinahl (1982-2010), and ASSIA (1987-2010). These are a multiprofessional and interdisciplinary group of common databases of both high impact and lower impact specialist journals that carry papers of relevance to this search. The search terms were piloted and developed to ensure broad inclusivity. The final terms used were the union of (palliative care/palliative medicine/terminal care/terminally ill/hospice/hospice care/hospitals/death and dying/end of life/progressive disease or illness or condition/advanced disease or illness or condition/bereavement) intersected with the union of (homosexual/lesbian/gay/transgender/bisexual). The reference lists of papers identified in the search were also reviewed.

Inclusion and exclusion criteria

Papers were restricted to English language and were included if they described LGBT needs, experiences, or preferences in palliative care. Papers were excluded if they failed to disaggregate between the heterosexual and homosexual data when describing their results. Data from any study design were included.

Nonprimary data and data from theses or dissertations, non-English studies, editorials, and case studies were excluded. Therefore, in line with standard practice of systematic reviewing, this review identifies only peer-review (and not gray) literature.

Following the search conduct and initial screening (by EE), the remaining abstracts and full papers were appraised against the inclusion criteria by the full group of authors, and the lead author took the role of adjudicator in decision making. Reviewers were not blinded.

Data synthesis

A PRISMA statement on the search returns has been included to provide transparency of the search results, and the whole review was conducted in line with PRISMA methodological guidance.⁴² The details of the papers were entered into common tables: the reference, the country of origin, the study aims, the method, population, and main findings were contrasted. Because of heterogeneity in the studies' aims, methods, and designs we were not able to combine results into a meta-analysis.

Results

Initially we identified 4483 articles from the electronic searches, totalling 3452 excluding duplicates. Reviewing the titles, 133 abstracts were chosen for further exploration. Of significance was that, among those 133 papers, the majority of titles and abstracts reviewed focused on bereavement, multiple bereavements, and bereavement risk in gay men and their caregivers. Although we recognize this is a component of palliative care, this topic was not included in the current review and is being reported separately. The final sample included 12 papers. The PRISMA flowchart is shown in Figure 1.

FIG. 1.

PRISMA flow chart of search hits.

Origin and study designs

The reported data were collected in the following regions: U.S., N=10, U.K., N=1; and Canada, N=1. A total of six qualitative studies,^43–48 five quantitative studies,^49–53 and one mixed-method study⁵⁴ were identified. The studies are summarized in Table 1.

Table 1.

Data Extraction Table

Authors	Study aims	Methods	Population	Main findings	Comments
Qualitative studies
Katz, 2009, Canada	To explore the cancer experiences of gay and lesbian people	Design: qualitative study using semistructured interviews Recruitment: convenience sample; recruitment from a gay and lesbian newspaper	3 gay men and 4 lesbian women with a history of cancer or cancer treatment All were Caucasian; age range 31-69 (M=48.3); 6 had graduated college; an average of 4.7 years since diagnosis	All participants had informed their cancer care provider about their sexuality “[It was important] not to be dancing around with who I am as a person and who my support people are.” Some received positive response, for others the response was neutral or was ignored “I was out with my surgeon. After the first couple of sentences I said my partner X will be here…the physician didn't really care.” The presence of the patient’s partner at diagnosis and treatment of cancer was important for all participants Participants highlighted the lack of support groups for lesbian/gay people; it was difficult to disclose their personal life and experiences in heterosexual support groups “I am not ‘out’ in that group and so only part of me is really able to benefit from that experience.”	It is important to include the partner in decision making and to avoid heterosexist assumptions until sexuality is clarified either by the patient or the provider
Hash & Netting, 2007, USA	To explore long-term plans and decisions made by midlife and older gay and lesbian people	Design: Qualitative study using semistructured interviews Recruitment: purposive sampling method;recruitment via newspapers, social, spiritual, and political organizations	19 gay men and lesbians were currently providing or provided care to chronically ill same-sex partners 90% (17) Caucasian; age range 50-77 (M=60); 74% (14) had bachelor's degree; 53% (10) employed, 37% (7) retired	Majority reported that patients had advanced directives mainly to protect the carer from family members who did not approve their relationship and to be sure that health professionals understood their wishes The majority preferred to be cared for at home rather than in a long-term care facility due to fear of harassment and discrimination from staff Even with advanced directives and financial settlements, participants were still unsure that their wishes and plans will be respected, since their relationship is not protected by legal marriage; social workers may help to minimize those fears	No information on the illness from which patients suffered The majority were well educated; this might reinforce advanced planning in regards to advanced directives, financial issues, and retirement This is an older population, and as studies show, people are more likely to plan for the future due to higher age
Varner, 2004, USA	To explore the experience and effect of spirituality and religion with cancer	Design: pilot qualitative study Recruitment: convenience sample through announcements made at two lesbian groups, flyers, and newspapers	8 lesbian women All participants were Caucasian; age range 41-55; range of length since initial diagnosis 10 months to 3 years	All lesbian women found spirituality support was a way to cope with cancer and its uncertainty Definitions of spirituality though varied were closer to feminist theorists than to male theologians. Definitions such as “connecting with people,” “something that is in me all the time,” “internal journey” were used It was important for the lesbian women to be accepted by clinical teams.	Providers need to identify patient's sexuality, respect and accept them as individuals
Price, 2010, UK	To explore the experience of ‘coming out’ in gay and lesbian individuals who are caring for or cared for a person with dementia	Design: qualitative study using semistructured interviews Recruitment: snowballing method; initial contact within Alzheimer's Society	11 lesbian women and 10 gay men All were Caucasian, age range 20-69; all cared for a person with dementia; 14 were the patient's parent; 12 had at least a bachelor's degree	Participants' decision to disclose their sexuality was mediated by experiences of negative reactions, perceived discrimination, and anticipation of discrimination Some participants chose active disclosure; “I'm afraid my partner had been referred to as mybrother or something like that…. I'll say, ‘Oh, he's my partner’…You know…I've always made it clear that I was gay;” others chose passive disclosure, i.e., having clues of their sexuality such as photographs, gay literature, etc., or passive nondisclosure “The general feeling when we went to the meetings later, very much later on, in the proceedings, that you know, to be gay wasn't a good thing to be and that everyone should be straight. So it wasn't a very good thing and that put me off.”	The decision participants made to disclose their sexuality was very much situation-based; thus, depending on the situation and the professionals, they chose a different way to disclose their sexuality
Boehmer & Case, 2004, USA	To describe the disclosure of sexual orientation in lesbian and bisexual women with cancer	Design: qualitative semistructured Recruitment: community based purposive sampling and snowball sampling	39 lesbian and bisexual women with breast carcinoma 95% (37) Caucasian; age range 26-67; 51.3% (20) went to graduate school, 46.2% (18) college	11 women chose not to share their sexual orientation with their physician because (1) physicians were unwilling to ask, (2) homophobia, (3) being single, (4) sexual orientation is private “My kind of – I guess overall reaction to that kind of thing is that they asked me what they needed to know, and didn't go beyond that, and that kind of approach is actually perfect, as far as I'm concerned….I'm in a closet, because I don't live in one. I just think that my personal life is my business.” However, 28 of the 39 women disclosed their sexual orientation because (1) although their providers did not ask, they felt ‘safe’ and were prepared to disclose their sexual identity: “I think living in Boston; it's kind of a gay enclave. I mean, there are a lot of gay people here. And it's pretty well tolerated.” For those patients who disclosed their sexual orientation, the physician's reaction was neutral and thus perceived as negative: “I mean thinking mostly of like going to the gynecologist, you know, and they like ask you if you're sexually active and you say, “Yes. And I'm a lesbian.” And then they don't say anything else because they don't…I don't feel it as discrimination as much as like ignorance.” Those that did not disclose it were treated as heterosexual patients “I can remember going into the hospital the first time for the pre-op visit, and having the anaesthesiologist come in, and call me Mrs. (XYZ). Now, how he is–you know, his assumption that I was a Mrs., you know, was like–it just floored me. I hadn't been around that in so long, and it just made me feel like, oh, well, I'm you know, invisible. I'm going to be treated based on assumptions.”	Some environments perceived as safe reinforce disclosure; professionals should not base their care on assumptions but reinforce inclusive communication so that lesbians do not feel invisible and are not treated based on assumptions Even if professional adopt an inclusive communication style and reinforce a safe environment, there will still be some patients who will not disclose their sexual orientation, as they believe this is private
Matthews, 1998, USA	To explore clinical issues for lesbian women with cancer	Design: qualitative study using focus groups and follow-up individual interviews with participants Recruitment: from a community-based agency	24 lesbian women with cancer 79% (19) European American, 20% (5) African American; age range 20-68 years (M=42); 58% (14) had breast cancer diagnosis	Health providers lack the knowledge and sensitivity to lesbians needs. All participants perceived the medical establishment as hostile towards them “I wouldn't have said that I was lesbian if it wasn't that I was having female problems. I really expected him to have a little more professionalism. When his face turned red and he couldn't look me in my eye he had totally lost control. He left the room and didn't come back in. He sent a nurse in after that. [I thought] Am I the first lesbian to walk through this door?” Many women wished for their partner to be part of their decision making and treatment planning and thus be treated as spousal equivalent by providers “My doctors will discuss information with my partner, but they are less willing to provide her with support. For example, after my latest surgery the doctor didn't even speak to her. She was just left there waiting. She's a nurse herself and was shocked…very shocked.” Heterosexist bias increased distress as some women wished to reveal their sexuality but fear of stigmatization compromised care Some women reported increased distress as the heterosexist bias in their care prevented them from disclosing their sexuality, even though they wished to. This led them to feel their case was compromised.	Professionals need to ask questions about sexual orientation to acknowledge individual circumstances, needs, and concerns
Teno et al., 1990, USA	To examine the knowledge, receipt of counselling, and execution of prior directives such as living wills and power of attorney	Design: cross-sectional quantitative survey Recruitment: clients from each of nine cities of the AIDS Health Services Program were randomly recruited from a client database; sampling occurred within strata formed by recruitment setting	1031 clients with AIDS, 76% gay/bisexual	Patients who were male, white, gay or bisexual, and well educated were more likely to know about, receive counselling about, and execute a prior directive	Authors fail to comment from whom gay men or bisexual clients received counselling about prior directives
Stein & Bonuck, 2001, USA	Preferences regarding end of life (EOL) care and practices in advanced care planning	Design: cross-sectional study using a 64-item instrument Recruitment: snowball sampling through local health care and social service organizations	575 participants 61% (348) gay, 31% (180) lesbian, 6% (36) bisexual, (2 heterosexuals & 6 ‘other’) 76% (437) Caucasian, age range 19-83 (M=45), 45% (257) graduate degree, 35% (206) graduated college, 46% (261) income over $50,000	The majority (86%) preferred palliative care (pain relief) instead of EOL care (extending life) (14%) Those 30 years old or younger were more likely to prefer extending life The majority knew about advanced care planning (72%) and living wills (90%) but for only some this translated into action, 42% and 38% respectively Most (43%) preferred their partner to take decision in times of incapacity but only 21% reported partners having the legal capacity to be a surrogate decision maker	Communication between these individuals and health providers is important so that patients share with the professional their EOL preferences
Fobair et al., 2001, USA	To compare lesbian and heterosexual women's mood, coping, interpersonal relations, social support, and access to and utilization of medical care	Design: cross-sectional quantitative study using questionnaires Measures: Profile of Mood State (POMS), Impact of Events Scale (IES), Body Image and Sexuality Scale (BISS), Sexual Activity Questionnaire (SAQ), Family Relations Index (FRI), Social Network and Support Assessment (SNSA), Cancer Rehabilitation Evaluation System (CARES), Patient Rating Scale of Physicians (PRSP), Courtauld Emotional Control Scale (CECS), the 29-item version of the Mental Adjustment to Cancer scale (Mini-MAC) All measures are valid and reliable except the BISS, which is invalidated Recruitment: heterosexual women from 2 academic sites and 9 oncology practices; lesbian women from the Bay Area of northern California	29 lesbian & 246 heterosexual women with breast cancer	Lesbian women were more likely to receive support from friends (p=0.03), have more positive body image prior to having breast cancer (p=0.001) as well as following breast cancer (p=0.01), express their anger (p=0.05), and have more negative experiences with medical care than heterosexual women (p>0.01) Lesbian women were less likely to share their emotions, use avoidance coping (p=0.03), and show fighting spirit (p=0.02) than heterosexual women No significant differences emerged in mood and sexual activity or relational issues	Time since diagnosis may have influenced psychological states, mood, and emotional distress The different coping strategies are evident in these groups. Thus, professionals need to acknowledge this
Curtis et al., 1999, USA	The assess the patient-clinical quality of communication about EOL care	Design: prospective cohort quantitative study Measures: preferences for life sustaining treatments and measure of satisfaction with general medical care Recruitment: advertisements in community-based organizations, university, private clinics, and an AIDS research clinic	57 patients with AIDS 37 gay/bisexual men, 12 injection drug users, 8 other 65% (37) Caucasian, mean age 39 years, 70% (40) college education, time since AIDS diagnosis from 6 months to 2 years	Gay and bisexual men were more likely to discuss EOL issues with clinicians The quality of communication was better for the gay/bisexual group than the other groups	Authors separated between the experiences of gay/bisexual men and other groups, as they might have different preferences or experiences
Boehmer et al., 2005, USA	To assess differences in coping and adjustment to breast cancer between sexual minority women	Design: cross-sectional quantitative study Measures: dependent POMS, the 29-item version of the Mental Adjustment to Cancer scale (Mini-MAC); all measures were valid and reliable Independent: sexual identity, disclosure to others, and social support using an abbreviated social support scale from the Medical Outcome Study (MOS) Recruitment: target community sampling further enhanced with snowball sampling	64 lesbian & bisexual women with breast cancer 92% (59) Caucasian, mean age 50 years old, 48% (31) graduated college, 48% (31) graduate school, 53% (34) worked full time	Lesbian identity related to lower distress and avoidance coping Women's perceived support (r=0.32^*) and number of friends were both positively related to more fighting spirit (r=0.25^) Women's cancer stage was related to their distress	It may be that lesbian women who choose to disclose their sexuality are more likely to be in a relationship and thus wish their partner to be involved in their care
Mixed method
Matthews et al., 2002, USA	To explore lesbian and heterosexual patients' experiences regarding cancer, medical interactions, and quality of life	Design: qualitative study using focus groups and a self-report survey instrument Questionnaires: demographics, medical characteristics, cancer-related distress, Multidimensional Scale of Perceived Social Support (MPSS), satisfaction with treatment and treatment-related support Recruitment: newspaper advertisements, community and hospital based support groups, flyers in medical centers, advertisements in newspapers for African American and Latino women	28 heterosexual and 13 lesbian patients with breast cancer Lesbian women: 84% Caucasian, all had some college or advanced degree, 54% worked full time, 61% earned more than $50,000, and 77% had private insurance Their mean age at time of diagnosis was 47 years, and 3.6 years was the average time since diagnosis	Lesbian patients reported higher levels of stress associated with initial diagnosis and treatment (9.3 versus 7.7, t(39)=–2.1, p<0.05) In all areas lesbian patients reported less satisfaction with medical interactions (75%) than heterosexual women (95%) Lesbian responders who disclosed sexual orientation to the health care provider did not notice any apparent change in the physician's attitude or a decline in the quality of treatment Many of them had a difficult time finding a cancer support group appropriate for their needs and concerns; thus, their emotional needs were unmet when they attended support groups for heterosexual women where the main focus was breasts as sexual attraction to men “I sat through two…heterosexual support groups. So finally I had had it.…[The issue] was the man's attachment to the woman's breast. It had nothing to do with whether she was going to get better.”	It is possible that those lesbian women who were dissatisfied with the health professionals did not disclose their sexual orientation to the providers and thus failed to receive the relevant care

Needs

Only one study reported data on a specific need, although data under the category of “experiences” provides further insight into what is needed by LGBT patients at EOL. For gay men and lesbian women, partners were important to the decision making and support in the cancer experience, and responders highlighted the lack of support groups for gay and lesbian patients with cancer.⁴⁵

Experiences

The studies reporting data on experience of care focused on communication and disclosure. A study of gay and lesbian dementia caregivers explored mechanisms of sexuality disclosure to professional staff.⁴³ The study revealed three strategies: active disclosure, passive disclosure, and passive nondisclosure (i.e., patients neither revealed their sexuality nor claimed a heterosexual identity). In a further study, lesbian women with cancer experienced a heterosexually biased environment and were mainly receiving their physical and emotional support from friends and partners. Lesbian women wished that their partners were included in decision making and treatment planning and highlighted the importance of open communication between them and the health care providers for more holistic, patient-centered care.⁴⁸

A study of lesbian and bisexual women with breast carcinoma indicated that some women were reluctant to disclose their sexuality to health professionals while others chose to disclose it.⁴⁴ Disclosure often received a neutral reaction from professionals, which was perceived negatively, while nondisclosure was associated with presumed heterosexuality.

In a prospective cohort study, gay and bisexual men were more likely to discuss EOL issues with their clinicians compared to women with high-risk sex partners and drug users. The quality of the consultation was felt to be better in the former than in the latter group.⁵³ No other data were disaggregated between the groups.

A study exploring the knowledge of prior directives showed that patients with HIV disease who were white, male, gay or bisexual, and well educated were more likely to be knowledgeable and to have received counselling about prior directives.⁴⁹

A study of lesbian and heterosexual women with newly diagnosed breast cancer found that lesbian women were more likely to receive support from their partner and friends.⁵¹ They also had a poorer perception of the medical system than heterosexual women, since they were less satisfied with the care they received and with the inclusion of their partner in decision making. Lesbian women were significantly more likely to express their anger and significantly less likely to report a fighting spirit.

A study with sexual-minority women showed that those women who were open with their sexuality or disclosed their sexual orientation to their providers perceived higher levels of support. Women with lesbian or bisexual identity reported less cognitive avoidance coping, while lesbian women reported significantly lower level of distress. For all women, more fighting spirit was positively related to the perceived level of social support and number of friends.⁵²

In a mixed-method study, quantitative findings showed that lesbian women with breast cancer reported higher stress associated with initial diagnosis and treatment and less satisfaction with medical interactions and the care they received from physicians, compared to heterosexual women.⁵⁴ Qualitative findings indicated no significant differences between the two groups in regards to satisfaction with care, the patient-provider relationship and emotional response to their treatment. Lesbian women reported having difficulties in finding cancer support groups appropriate to their needs and concerns, as the majority of available support groups were comprised mostly of heterosexual women whose needs and concerns differed from theirs particularly with respect to breasts in relation to attractiveness to male partners.

Preferences

Data on preferences focused mainly on place and nature of care, and spiritual well-being. In a study of older gay and lesbian carers, the majority of patients had made advanced directives mainly to protect them and their partner (carer) from family members and professionals who might have disregarded their plans. Thinking about their future care in retirement, carers did not wish to reside in a long-term care facility fearing stigmatization and harassment.⁴⁶

All lesbian women in Varner's⁴⁷ study who suffered from cancer valued spirituality, and although their definitions varied they all described ‘peace’ and ‘hope’ as an outcome of spirituality. They commonly relied on spirituality to deal with their fears of cancer and its uncertainty. Not all participants believed that religion was helpful but felt that religion was a tool towards spirituality.

In Stein & Banuck's⁵⁰ study, sexual minority participants overwhelmingly preferred palliative care to extending life. The majority were more likely to know about living wills and health care proxies, but less likely to have completed any. Those under the age of 30 were more likely to prefer extending life over pain relief, and less likely to know about health care proxies or to have signed one. For the majority of participants, their partners were the most commonly chosen person to take decisions. However, most participants were not asked by their care provider who should make medical decisions if they were unable to do so.

Discussion

This systematic review aimed to identify and appraise the evidence of the needs, experiences, views and preferences of the LGBT population in relation to palliative and EOL care.

There is a paucity of literature that aims to explore the needs, preferences, views, and experiences of the LGBT population in EOL care and palliative care. Among the 14 included studies in this review, the majority of the results concentrated on lesbian women (n=10) and gay men (n=6), with only four studies providing data for bisexual individuals. No studies were found that aimed to explore the needs and experiences in EOL care and palliative care for transgender individuals. Despite a large literature on preferences at EOL for different sections of the population, for example on place of death and preferences for extended versus quality of life, none was available with respect to sexuality identity.

So there is a significant need for health care professionals to acknowledge the patient's social identity by exploring sexual preferences; avoiding heterosexual assumptions; and providing an open, nonjudgmental environment. These can enable patients to discuss their needs and concerns in a situation where the anticipatory grief and loss of a loved one is explored. To accomplish this, professionals need to acknowledge potential discrimination in staff, address and ensure sensitive assessment, and recognize plurality of meanings in family-centered care. If professionals fail to have an open discussion with the patient about sexuality, patients may be less likely to reveal their sexuality, and thus the completion of the patient's family history and genogram will be inaccurate. In clinical practice, the need to minimize discrimination is important due to mental health issues among sexual minority individuals.^55,56 In working with terminal patients, clinicians should be able to assist patients in activities such as reflecting on their life and events. Therefore, professionals should be aware of potential experiences of hostility and discrimination during the patient’s life.

There is in the literature a predominating focus on gay men's experience with HIV, gay men's and their parent's or partner's experience with HIV related bereavement and grief, gay men's experience with multiple bereavements, and their partner's life after bereavement. This plethora of data around HIV, bereavement, and grief in the gay population should reinforce the exploration of these experiences in other sexual minority groups such as lesbian, bisexual, and transgender individuals.

Attention should be directed towards experiences other than bereavement, such as patient preferences, concerns, and needs concerning their care pathway in different terminal ill diseases. Such attention can lead to development of research studies and services based on patient needs and preferences in EOL care and palliative care. The data that has been generated from the significant burden of HIV among gay men should not be directly related to other life-limiting conditions, due to the highly specific social, clinical, and cultural dimensions of the HIV epidemic.

Limitations

The majority of papers reported a limited sample due to possible lack of self-identification. Therefore, studies often report convenience samples via LGBT organizations. It is possible that these individuals are more open with their sexuality and bias results. In addition, the majority of responders in the articles appear to be white, middle class, and well-educated individuals, with a paucity of data about the experiences, needs, preferences, and views of LGBT individuals who come from ethnic minority groups.

There are several limitations to the interpretation of the findings from this systematic review of English language articles. In addition to the convenience sampling and possible selection bias, reporting bias is also possible, because sampling limitations might prevent some studies from having completed data and thus reaching peer review publication. Lack of disaggregation is also possible, as this is not often feasible due to the unknown but small percentage of sample who identify as LGBT. The lack of inclusion of gray literature may have reduced our reporting of available literature, but it is important in systematic reviews to focus on findings that have been peer reviewed. However we do recognize the greater risk of publication bias when considering LGBT studies as there may be difficulties in securing funds for LGBT palliative and EOL research, and also potential publication bias against the topic of inquiry. With respect to study quality, the heterogeneity of study designs identified by our search strategy disallowed a uniform analysis of quality. If we had restricted the review to a single study design (e.g., empirical, quantitative data) we would have further reduced the amount of peer-review data reported here.

We draw a number of research recommendations from the study. Firstly, the paucity of the data reveals a number of further topics of clinical relevance. Issues such as family caregiver outcomes in LGBT family groups, concepts of what constructs “family” for these patients, and policy and legal analysis of national laws on same-sex relationships in relation to palliative and EOL care are required. We have identified a need for educational intervention for health care professionals, and these training interventions should be evidence based and evaluated. The lack of evidence for transgender patients warrants further evidence to guide professionals who may have little experience of appropriate care for transgendered persons. And the methodological challenge of recruitment and data collection from LGBT patients and families requires attention. Studies may benefit from LGBT community representation on research study project committees to guide better recruitment and disclosure. Sexuality should be considered as a sample characteristic variable (as recommended by the U.S. Institute of Medicine of the National Academies)⁴⁰ and should be reported in publication of results. In order to reduce the risk of publication bias, well argued and constructed studies of LGBT populations are needed to maximize possibility of publication. We note that this bias may have prevented available data being accessible for this review, and although we did not include gray literature in order to include only data that had passed peer review, we recognize that some credible data may have been rejected for publication due to the topic. Lastly, we note that the vast majority of the identified evidence was generated in the United States, and we urge researchers to undertake similar work in other regions.

Conclusion

There is a paucity of literature about LGBT needs, preferences, views, and experiences with EOL and palliative care. There is a significant need to explore these experiences and further develop services for patients and their carers incorporating these experiences and concerns. The recent WHO guidance of a public health approach to enhance HIV services for men who have sex with men and transgender persons may offer a useful template for palliative and EOL services.⁵⁷

Interventions and educational programs are needed to help health care professionals to avoid discrimination against LGBT patients and their families, and to facilitate disclosure that can allow holistic patient-centered care for LGBT patients and their families.

Despite the relatively small number of studies addressing the needs, experiences, and preferences of the LGBT population, the evidence suggest the following conclusions for professional practice. First is the need for professional education for clinical team members (including medicine, nursing, and allied health professionals) to promote comfort and acceptance, identify and diminish bias, facilitate disclosure of sexuality, and minimize heterosexual assumptions within assessment and care, and thus strengthen open communication. Patients would then be enabled to reveal their sexuality in a safe environment, discuss needs and concerns specific to their sexuality, and thus ease their perceived invisibility. With professionals being aware of their patients' sexualities, a more holistic, patient-centered care may be provided to the patient.

Second is the need to recognize the importance of respecting the patient's wishes and involve the partner in decision making and treatment discussions. Professionals should be aware of the legal situation for same sex couples in their country and establish mechanisms to ensure that patient and partner preferences can be met. Third is to recognize the need for supportive groups where individuals feel safe to reveal their sexuality, feel accepted and understood by the support group as these individuals emphasize different concerns, needs, and dissatisfactions.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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