Positive Experiences of Seriously ill Lesbian, Gay, Bisexual, Transgender, and Queer Persons and Their Partners With Healthcare Providers: Project Respect

Abstract

Background:

There is strong evidence of discriminatory healthcare to seriously ill lesbian, gay, bisexual, transgender, and queer people, plus other sexual and gender identities (LGBTQ+).

Aim:

The aim is to describe positive, affirming, and culturally competent healthcare to seriously ill LGBTQ+ patients and their spouses, partners, and widows.

Design:

The authors conducted a cross-sectional study using an online survey. The data for this report are the responses to three open-ended questions describing care that was respectful, affirming, and competent provided the data.

Settings/Subjects:

There were 290 LGBTQ+ persons with a serious illness and their spouses, partners, and widows, recruited from a wide range of organizations in the U.S. that serve LGBTQ+ communities.

Results:

There were numerous reports of respectful, affirming, and competent care, including: healthcare providers who were open about discussing a respondent’s LGBTQ+ identity and their specific health concerns; intake and assessment forms that included pre-specified choices for sexual orientations and gender identities; using correct names, pronouns, and gender; healthcare providers who identified as LGBTQ+ or signaled being an ally; and treating spouses, partners, and widows respectfully and including them in decision-making.

Conclusion:

Culturally competent care is important for all individuals with a serious illness, particularly for those who identify as LGBTQ+. Such care builds trust, minimizes misunderstandings, and encourages meaningful communication with patients, thus increasing treatment effectiveness and patient satisfaction. Healthcare providers and healthcare systems are encouraged to become informed about caring for LGBTQ+ patients. Technology and inclusive intake forms and assessments may also contribute to making patients feel validated by using questionnaires that include questions about sexual orientation and gender identity. More can be done to educate healthcare professionals to provide culturally competent care to LGBTQ+ people and there are models for such training.

Introduction

There have been both positive and negative changes for the lesbian, gay, bisexual, transgender, and queer people and other sexual and gender minorities (LGBTQ+) in the U.S. in the recent past. Same-sex marriage is now the law in the U.S.¹ and 22 states and the District of Columbia have passed LGBTQ+ civil rights protections.² There is also greater societal acceptance of LGBTQ+ people.³ However, there has been a rise in reports of discrimination and hate crimes throughout the U.S., particularly toward people who identify as transgender and gender diverse. The American Civil Liberties Union is tracking 616 anti-LGBTQ+ bills in state legislatures, of which 141 are intended to restrict healthcare (as of January 7, 2026).⁴ GLAAD tracked at least 918 anti-LGBTQ+ incidents in 2024, of which 48% were against transgender and gender nonbinary people,⁵ including fatal violence,⁶ even as the crime rate in the U.S. has declined.^7,8

While the U.S. Supreme Court has protected transgender individuals from discrimination in employment,⁹ it most recently upheld a Tennessee state law that banned gender-affirming care for transgender youth.¹⁰ This decision likely supports similar laws restricting gender-affirming care, currently existing in 27 states, opening the door to greater backlash against the transgender community.¹¹ It will likely lead to more challenges against gender-affirming care for transgender adults.

We have reported disparities in the care of seriously ill LGBTQ+ individuals that is disrespectful and inadequate due to the patient’s sexual orientation or gender identity in a study of healthcare professionals,^12–14 and in a study of seriously ill patients and their spouses, partners, and widows (hereinafter: partners).^15,16 Deficiencies reported include being made to feel invisible, feeling judged and made fun of, having their partners ignored and disrespected, provider discomfort with their identities, and lack of awareness of LGBTQ+ health needs and sexual health concerns.¹⁷ Furthermore, LGBTQ+ patients fear discrimination, isolation, safety, and loss of dignity at end of life.¹⁸

Compared with cisgender heterosexual people, LGBTQ+ adults were less likely to seek health care, change providers, and report negative experiences with health care that caused their health to worsen,¹⁹ leading to increased anxiety, depression, and loneliness. Another recent study reported similarly higher rates of disrespect and discrimination toward LGBTQ+ people from healthcare providers compared with cisgender heterosexual individuals, also resulting in greater likelihood of delaying or avoiding needed health care.²⁰ Discriminatory care was reported at higher rates by LGBTQ+ respondents who were persons of color, had a disability, or identified as transgender, gender nonbinary, or intersex.^14,20

Good care results in positive outcomes for patients, partners, and families. For example, two recent studies described factors that fostered positive experiences with healthcare providers, including: involving partners and chosen family members; fostering trust, safety and comfort; expressing empathy and respect; using correct pronouns and names; and LGBTQ+ training.^21,22 Project Respect -- a mixed methods study of seriously ill LGBTQ+ people and their partners -- also revealed many instances of positive care. This report describes positive, affirming, and culturally competent healthcare provided to seriously ill LGBTQ+ patients and their partners, complementing prior reports that described disrespectful and inadequate care.

Methods

Study Design

A cross-sectional study using an online survey that took about 15 minutes to complete was conducted. This study was approved by the Institutional Review Boards at Yeshiva University (IRB #1303817 on 3-20-21) and Fordham University (#1830 on 4-30-21). Data were collected from 10-27-21 through 1-16-23).

Sample

LGBTQ+ persons with a serious illness and their partners (either married or not, and widows), were recruited from a wide range of organizations throughout the U.S., comprising healthcare organizations and medical centers, hospices and palliative care programs, and organizations that serve LGBTQ+ persons. These entities were identified by extensive online searches and reaching out to a wide range of organizational contacts at the national, state, and local levels. The study flyer was posted on organizational websites, social media, newsletters, and virtual and physical bulletin boards of these organizations.

Measures

Responses to the open-ended statement “We’d also like to hear about good experiences you had as an LGBTQ+ person receiving care for a serious illness” provided most of the data for this report. Some respondents described culturally competent care in response to these 2 open-ended questions: “Could you tell us more about times that you received poor care from healthcare providers because you are LGBTQ+?” and “Is there anything else you want to tell us about your experience as an LGBTQ+ person receiving care for your serious illness?” The questions on good care were included after the questions on disrespectful and inadequate care. All of the quotes included here are verbatim and have not been modified by the authors. When an individual or institution was mentioned, we indicated where that was omitted.

Data Analysis Plan

Data were downloaded from Qualtrics into a text file and then imported into Atlas.ti.²³ Verbatim responses were used, with the exception of omitting mentions of specific persons or institutions. A grounded theory approach with constant comparison was used to analyze the data.

The first two authors used in vivo coding first separately, and after confirming consistency, coded the remaining responses together. They then jointly reduced the number of codes and eliminated redundancy, sorted the first level codes into higher level categories, and then combined these into the final categories presented here.

Results

The sample of 290 included 173 patients, 82 spouses/unmarried partners, and 35 widows. It was diverse by gender identity, sexual orientation, age, race and ethnicity (Table 1). There were 174 respondents (60%) who provided responses used in the analysis reported here. Virtually all of the respondents who reported receiving positive care also reported disrespectful or inadequate care.

Table 1.

Sample Characteristics

Characteristic	N	%
Gender identity
Female	115	40.5
Male	100	35.2
Transgender man	25	8.8
Gender nonbinary	24	8.5
Transgender woman	15	5.3
Not listed	5	1.8
Sexual orientation
Lesbian	121	42.6
Gay	102	35.9
Queer	41	14.4
Bisexual	9	3.2
Heterosexual patient (spouse was LGBQ)	3	1.1
Not listed	8	2.8
Age
18-29 years	51	19.2
30-39 years	57	21.5
40-49 years	34	12.8
50-59 years	37	14.0
60-69 years	52	19.6
70-79 years	30	11.3
80-89 years	4	1.5
Race/Ethnicity (not mutually exclusive)
Non-Hispanic White	209	72.1
Hispanic/Latino	73	25.2
Black	34	11.7
East Asian	19	6.6
South Asian	12	4.1
Native American or Alaskan Native	12	4.1
Pacific Islander	8	2.8
Middle Eastern or North African	7	2.4
Not listed	7	2.4
Region
Northeast	101	39.6
West & Pacific	63	24.7
Southeast	41	16.1
Midwest	30	11.8
Southwest	20	7.8

There were numerous reports of respectful, affirming, and competent care.

All the clinicians were very respectful and sensitive to our needs. [Lesbian respondent]

Finding the right doctor and clinic is so important to feeling comfortable and respected. Staff have gone to great lengths to treat me with respect every time. [Gay respondent]

I have a primary physician who has nothing but respect for me and my relationship. When my husband died, she not only came to his funeral but offered me helpful resources for widowed LGBT folks. It meant the world to me! [Gay respondent]

I have been treated with nothing but respect, kindness and caring. I have always received exceptional care from my medical providers. [Lesbian respondent]

My most recent care was outstanding in terms of the acceptance of my sexual orientation and welcoming of my partner. [Lesbian respondent]

Current infectious disease doctor is comprehensive in following my complicated multiple health issues. Always concerned about my relationship, mental health, and professional life. Team around her is extraordinary as well. Focused on my complete health. [Gay respondent]

One respondent mentioned that their hospital reassigned staff who were not supportive.

We only had a few care workers that had a problem with us and we were able to get them reassigned. [Lesbian respondent].

Having healthcare providers who were easy to talk with about being LGBTQ+ was very important.

It’s hard to live being sick all the time. Having providers that don’t bat an eye when you talk about a same sex partner is golden. [Gender-nonbinary respondent]

Nurse Practitioner was informative and comfortable talking about returning to sexual activities. [Lesbian respondent]

I have been open about my sexuality, my sexual practices, and sexual behaviors and have never felt judged by any of my medical providers. [Lesbian respondent]

Some respondents praised the palliative and hospice care they received.

Palliative care and finally hospice team have been excellent and outstanding. [Gay respondent]

Hospice people were great. [Lesbian respondent]

The palliative care representative is outstanding. Has treated us with respect and professionalism always. [Lesbian respondent]

Excellent, responsive, humane care at [omitted]. Being gay was no issue. I was acknowledged as his husband. [Gay respondent]

The hospice had women who crocheted small blankets for each patient. They made a purple one because they thought it was a lesbian color thing. It was very sweet. [Lesbian respondent]

Questions about sexual orientation and gender identity on intake forms and during assessments that included choices appropriate for LGBTQ+ identities were valued.

They ask about sexual orientation on intake but the routine choices are all printed - you don’t have to check other and fill-in a blank. [Gay respondent]

An OB/GYN asked many appropriate questions about our pronouns, our relationship, and what we identify as. She respected everything we said. [Gender nonbinary respondent]

Respondents mentioned that their partners were treated respectfully and included in meetings and treatment decisions.

I was overwhelmingly treated well as a gay man. My spouse and my friends were welcomed to accompany me almost all the time they wanted to. [Gay respondent]

The entire team was respectful & sensitive to me as a person of color and being gay, also my age (I am a senior) [Gay respondent]

My husband was permitted to accompany me to all doctor and hospital procedures. He’s a full part of my support team. [Gay respondent]

I’ve been fortunate to be respected and treated like any other partner would be in my caregiver role. [Lesbian respondent]

Knowing that her identities and our relationship are respected without question is such a relief for both of us. [Lesbian respondent]

The care we received was very sensitive to the fact that we were spouses and [they] consulted me every step of the way. [Lesbian respondent]

The hematologist, the oncologist, the palliative care doctor, all were very caring and included me in all decisions. They always referred to her as “your wife.” Several of the nurses were very respectful and caring. [Gender nonbinary respondent]

There were reports of staff being supportive and encouraging affection expressed by the patient and partner.

We were treated consistently with respect and love. I was often in bed cuddling her when she was receiving chemo or other treatments, and even sometimes slept in the bed with her when she was an inpatient. The staff seemed to take pleasure in our close and loving relationship. [Lesbian respondent]

Everyone has been very accepting that I am the SPOUSE. Iwas always allowed to be with him. When the anesthesiologist was ready to take him in the operating room and said to us, this is when you kiss. We both laughed and then kissed. [Gay respondent]

Some respondents mentioned their appreciation for being treated no differently than any other patient or couple.

The good experiences are just when healthcare providers treat me like a person, not an LGBTQ person. [Lesbian respondent]

We’ve always been treated with great respect and treated like any other married couple. [Gay respondent]

I’ve had a number of extremely compassionate healthcare providers. I think the best providers are the ones who don’t say anything. They just treat me like a human. [Gay respondent]

Respectful and supportive care was attributed by some respondents to the efforts at change or the training their healthcare providers received.

One of my care providers who was originally in the category above has actively made an effort to correct her own ignorance. [Lesbian respondent]

I know this healthcare system offers more training in LGBTQIA+ care for all of their providers and I really do see a difference. [Transgender male respondent]

[NAME OF PROGRAM] is a model. Whatever they are doing in terms of training and supervision on this issue should be studied and replicated! [Lesbian respondent]

One respondent expressed appreciation for staff who used their religiosity in a positive way.

There have been so many times when elder Black women who are working as care attendants, or janitors, have come and sat with me. She held my hand and prayed for me. It helped anchor me. [Lesbian respondent]

One respondent mentioned being surprised at receiving sensitive care due to living in a rural area.

I live in a rural area and have been surprised to find that healthcare practitioners [are] sensitive to LGBTQ experience. [Gay respondent]

There was also appreciation when staff used the correct pronouns and recognized the patient’s gender identity.

I have had several nurses who were very kind, respectful of my pronouns and identity, and took me seriously. [Transgender male respondent]

Use of my pronouns consistently. [Queer respondent]

Many respondents reported that their healthcare providers identified as LGBTQ+ and that this made a major difference in the care they received.

My specialists are all LGBTQIA+ affirming and treat my spouse well. She is kept updated regarding my progress and is always allowed to visit me or attend appointments with me. Our relationship is never questioned. [Lesbian respondent]

We have both been treated kindly and respectfully. [Lesbian respondent]

My spouse’s MS Care Center is phenomenal. Not only do they provide excellent care, but they have been welcoming of me, our relationship, and my contributions from Day 1. [Lesbian respondent]

A surgeon was 100% respectful of our relationship, and that gave me the courage to come out to all of our providers. She spoke to the hospital at my request to let them know I wanted my partner respected and given full access to me. And they did respect her. [Lesbian respondent]

It helped we have a lesbian NP working with our oncologist. This makes ALL the difference in the world to improving our care and connecting with the team! [Lesbian respondent]

I go to a gay practice and everyone is treated with respect and care. [Lesbian respondent]

The only good experience I have had was when I found the national LGBT cancer network. They are awesome and the groups are amazing. [Lesbian respondent]

After many tries, I secured wonderful home medical care. Our geriatric specialist was a gay Latino doctor. [Lesbian respondent]

Respondents also mentioned excellent care from providers who signaled that they are an ally.

My OB/GYN is fantastic! A straight woman, she wears rainbow pins and has rainbows all over her office. [Lesbian respondent]

Discussion

There were numerous reports of respectful, affirming, and competent care provided to the study respondents. These included: healthcare providers who welcomed openness about discussing their LGBTQ+ identity and their specific health concerns and sexual issues; intake and assessment forms that included pre-specified choices for sexual orientations and gender identities; using their correct names and pronouns; having healthcare providers who were LGBTQ+ or openly signaled being an ally; being treated the same as other patients and couples; staff being supportive of expressions of affection between patients and partners; and treating their partners respectfully and including them in patient care and decision-making. These findings are consistent with prior research.²⁴ As noted previously, most respondents who reported positive experiences with healthcare providers also reported disrespectful and inadequate care from other providers. This is one of the first studies to report on positive experiences of seriously ill LGBTQ+ patients and partners, which adds an important dimension to understanding healthcare received by this population.

Culturally Competent Care Matters

Living with a serious illness can be frightening, anxiety-provoking, and destabilizing. It may bring financial, social and psychological challenges. This may be layered on top of previous traumas due to homophobia and transphobia, as well as racism for LGBTQ+ persons of color^14,20 and discrimination based on age or disability. Culturally competent care is important for all patients, particularly those who identify as LGBTQ+. This means care delivered by healthcare providers who are knowledgeable about the patient’s culture, aware of their own beliefs and biases, skilled in effective communication with patients belonging to the cultural group, and who have an attitude of respect and interest in learning about the patient’s culture.²⁵ Such care builds trust, minimizes misunderstandings, and encourages meaningful communication with patients, thus increasing treatment effectiveness and patient satisfaction.²⁵ Cultural competence should also be an integral part of the health system in which the provider practices.²⁶

Practicing Culturally Competent Care

The reports of positive care in this study reflect cultural competency by their healthcare provider. Healthcare providers are encouraged to become informed about caring for LGBTQ+ patients and to reflect on their own attitudes and biases. Simple things can be effective in establishing a respectful and trusting relationship with LGBTQ+ patients, such as introducing themselves to patients specifying their pronouns and asking open and curious questions about sexual orientation and gender identity, signaling their open and respectful stance through a symbol, such as a pin, or stating this,²⁷ and using culturally-appropriate language that conveys respect and safety.²⁸ Technology and inclusive intake forms and assessments may also contribute to making patients feel validated by using questionnaires that include questions about sexual orientation and gender identity.²⁴

Education and Training

Some respondents attributed the respectful and supportive care they received to train their healthcare providers. More is needed to educate healthcare providers to provide competent care to LGBTQ+ people based on the goals and objectives In Healthy People 2030 for improving the health and well-being of LGBTQ+ people.^29,30 While some medical schools voluntarily include content on providing competent care to LGBTQ+ people, the Liaison Committee on Medical Education, which accredits U.S. and Canadian medical schools, does not mandate this. The number of hours of education on LGBTQ+ patient care in undergraduate medical education is considered insufficient.^31,32

Similarly, it is not mandatory for nursing programs to require education on LGBTQ+-competent care³³ and requirements for such education in both nursing school³³ and continuing education³⁴ should be strengthened. The Council on Social Work Education, which accredits social work undergraduate and graduate programs, requires content on LGBTQ+ issues in the curriculum.³⁵

Escalations in anti-LGBTQ+ policies, stigmatizing language, and strong evidence of disrespectful and discriminatory behavior by healthcare providers, indicate that staff training is critical to promote respectful, nondiscriminatory, and competent care to LGBTQ+ persons.¹⁷

There are models for training. Acquaviva advocates inclusive institutional environments, including guidance on nondiscrimination policies, staff training, intake forms and processes that address sexual orientation and gender identity, and community outreach and marketing.³⁶ Rosa et al. describe knowledge-based and experiential learning that increase healthcare providers’ confidence in communicating with patients with diverse sexual orientation and gender identities.³⁷ Several organizations provide continuing education and resources to enhance cultural competence for working with LGBTQ + patients and families.^38–43

Strengths and Limitations

The convenience sampling limits the generalizability of these findings to all members of the LGBTQ+ population. The relatively small numbers within each of the LGBTQ+ communities limited the ability to report findings by sexual orientation, gender identity, and race and ethnicity of respondents. However, this was one of the first studies to inquire about discriminatory and positive care to LGBTQ+ patients and their partners. The research team included social workers, nurses, physicians, and lawyers, from different ethnic and racial backgrounds, regions of the U.S., work settings, and gender identities and sexual orientations, which enhanced the study design, data analysis, and writing this report.

Future Research

Understanding the characteristics of healthcare providers that result in LGBTQ+ patients feeling respected, safe, and competently cared for would be useful for designing training. This should be determined for each of the LGBTQ+ communities, including by sexual orientation, gender identity, race and ethnicity. Results from the present study can inform future research on this topic. It would also be useful to examine the attitudes and concerns of healthcare providers about caring for subgroups within the LGBTQ+ population, particularly people who identify as transgender or gender nonbinary, in order to design training that is responsive to their needs. It would also be useful to examine the relationship between healthcare provider behavior and institutional culture, including training, outreach, nondiscrimination policies, and creating a welcoming environment.

Conclusion

Culturally competent care is important for all patients with a serious illness, particularly for those who identify as LGBTQ+. While this study reflects the behaviors that foster a trusting, safe, and respectful relationship for serious illness care, this also applies to caring for patients regardless of illness severity. In the current environment where LGBTQ+ community members are very concerned about how they will be treated by healthcare providers, the behaviors described by study respondents provide a blueprint for culturally competent care.

Healthcare providers are encouraged to become informed about caring for LGBTQ+ patients. Inclusive intake and assessments contribute to making patients feel validated by including questions about sexual orientation and gender identity. More can be done to educate healthcare professionals to provide competent care to LGBTQ+ people and there are models for such training.

Data Availability Statement

The data that support the findings of this study are not publicly available due to ethical restrictions related to protecting participant privacy.