Palliative care, end of life care, and clinical trials shape comfort, choice, and hope for many people with cancer. For lesbian, gay, bisexual, transgender, queer, and intersex people, these parts of care often feel harder, less safe, and less fair than they should.
Research shows three patterns.
- Sexual and gender minority people receive palliative care later and less often.
- Many face extra stress and disrespect near the end of life.
- LGBTQ people appear far less often in cancer clinical trials, even when trials would fit their medical needs. 13 (PMC)
Let’s explains what palliative and end of life care and clinical trials are, how gaps show up for LGBTQ people, and what steps start to close those gaps.
What palliative care and end of life care mean
Palliative care is a medical and emotional support service. The team focuses on pain, symptoms, stress, and quality of life. Palliative care works alongside other treatments such as surgery, chemotherapy, radiation, and targeted drugs. A person does not need to be near death to receive this support. 1 (PMC)
End of life care is palliative care during the last part of life. This stage often involves hospice, comfort-focused treatment, and planning for where someone wants to be, who will be present, and how choices will be made.
Good palliative and end of life care listens to values, honors family and partners, and protects dignity. Reviews of lesbian, gay, bisexual, and transgender cancer care show that many services fall short of these goals for sexual and gender minority people. 13 (PMC)
How palliative care falls short for LGBTQ people
A review of palliative and end of life care for sexual and gender minority cancer survivors found that support across this part of the cancer journey often feels fragmented and unsafe. Many survivors describe weak pain control, poor emotional support, and few chances to talk about identity, family, or fears. 2 (PubMed)
A newer scoping review on palliative care use among 2SLGBTQIA+ people found three main barriers.
- Social barriers such as stigma, fear of discrimination, and past bad treatment in health systems.
- Psychological barriers such as shame, worry about being judged, and stress from hiding identity.
- System barriers such as forms that ignore sexual orientation and gender identity, staff without training, and lack of clear policies on partners and chosen family. 3 (BioMed Central)
These reviews show that many LGBTQ people delay palliative care or avoid it altogether because they expect harm or erasure.
Partners and chosen family often left out
Many LGBTQ people rely on partners, friends, and community more than on biological relatives. Studies of lesbian, gay, and bisexual cancer survivors describe partners and close friends as main caregivers. Yet hospitals and palliative teams often treat these people as “visitors” instead of family. 15 (PMC)
Articles on palliative and end of life care for lesbian, gay, bisexual, and transgender people report repeated stories.
Staff talk only to legal relatives even when a partner provides daily care.
Forms list “spouse” or “next of kin” without space for chosen family.
Visitors’ rules feel unclear or unfair for same sex partners or trans partners. 13 (PMC)
These patterns increase stress, block support, and weaken trust at a time when support should feel strongest.
Fear, hiding, and minority stress near the end of life
LGBTQI cancer patients report high distress and poor quality of life across the cancer journey. A large online survey of 430 LGBTQI people with cancer found high levels of anxiety, depression, and fear of recurrence. Minority stress and lack of social support linked strongly with distress. 5 (Frontiers)
A follow-up analysis showed that many people feared discrimination from health staff. Those who had faced more hostility or rejection in the past reported worse mental health and poorer quality of life. 5 (Frontiers)
Near the end of life, these fears often grow stronger. Reviews of palliative care for sexual and gender minority people note that many try to judge whether a team feels safe before sharing identity. Some never share. Others change how they speak, dress, or describe partners to avoid poor treatment. 13 (PMC)
Trans and nonbinary people describe even higher stress. Qualitative reports show worries about misgendering, unsafe bathroom access, and lack of respect for gender expression when they feel too weak to correct staff. 26 (PubMed)
Gaps in provider skills and policies
Palliative care teams often want to support LGBTQ patients, yet lack knowledge and tools. A large survey of oncology health workers across several countries found that most staff felt “comfortable” caring for LGBTQI patients, but many held low knowledge scores, had little training, and worked in systems without clear policies on inclusive care. 6 (ScienceDirect)
Another review of LGBT healthcare and palliative care competence reported that many palliative teams had no required training, no routine questions about sexual orientation and gender identity, and no guidance on issues such as advance directives, visitation, or body care after death for trans people. 4 (Taylor & Francis Online)
Without training and strong policies, even staff with good intent often fall back on habits that match straight and cisgender patients, not sexual and gender minority people. That gap leads to mistakes such as:
Using the wrong name or pronouns.
Leaving partners out of decisions.
Guessing about anatomy rather than asking.
Ignoring spiritual and cultural needs linked to LGBTQ community. 14 (PMC)
Advance care planning, legal worries, and after-death care
End of life planning includes choices about resuscitation, hospital transfers, and who holds legal power to speak when a patient cannot speak. Research on lesbian, gay, and bisexual cancer patients shows that many worry that their wishes will not be respected if relatives or staff dislike their identity or partners. 1 (PMC)
Trans and nonbinary people also worry about legal names, gender markers, and how their bodies will be treated after death. Reviews note concerns about death certificates showing the wrong gender, funeral homes that refuse gender expression, and families who override a person’s stated wishes. 24 (PubMed)
These worries increase stress for many LGBTQ patients as life nears its end.
Why palliative and end of life gaps matter for health
Palliative support that starts early reduces pain, improves mood, and often helps people live longer and better. When sexual and gender minority patients receive support late or not at all, suffering increases without medical reason. 114 (PMC)
What clinical trials are and why they matter
Clinical trials test new drugs, new treatment plans, or new ways to support patients. Trials often offer access to options that standard care does not yet include. The results of trials shape future cancer care for everyone.
A commentary in the Journal of Clinical Oncology showed that sexual and gender minority people appear rarely and invisibly in many cancer trials. Many trials do not ask about sexual orientation and gender identity. Others collect this information but never report results by these groups. 8 (PubMed)
When LGBTQ people do not appear in trial data, doctors have less evidence about how new treatments affect sexual and gender minority bodies and lives. Guidelines then rely almost fully on information from straight and cisgender participants.
Barriers to trial access for LGBTQ people
Research on trial access for sexual and gender minority patients points to several barriers.
- Lack of data and outreach
Mitteldorf and colleagues describe “invisibility” in cancer trials. Trials often fail to ask about sexual orientation and gender identity, use materials that speak only to heterosexual and cisgender people, and recruit through networks that miss LGBTQ communities. 8 (PubMed)
A 2025 abstract on disparities in enrollment among LGBTQ+ people highlights heteronormative trial designs, low outreach to LGBTQ groups, and limited staff training as structural barriers. 11 (ASC Publications)
- Stigma, mistrust, and fear
A qualitative study with LGBTQ cancer survivors found that many felt mistrust toward research because of past discrimination by health systems. Some worried about being treated as “guinea pigs.” Others feared that staff would not respect their identity or privacy if they joined a trial. 10 (Cancer Support Community)
A review on barriers to transgender trial participation notes that stigma, discrimination, and low access to affirming care leave many trans people outside the usual paths into research. Strict eligibility rules, such as blanket exclusion of people living with HIV or those on hormones, also shut many out. 9 (PMC)
- Practical and economic barriers
A recent paper on disparities in gynecologic oncology trials points out that LGBTQAI+ people more often lack insurance, face lower income, and live farther from major cancer centers. These factors make childcare, travel, and time off work harder, which in turn lowers trial participation. 13 (ScienceDirect) - Limited staff knowledge and comfort
A commentary on LGBTQ+ participation in cancer trials notes that many trial teams have no training on sexual and gender minority health. Staff feel unsure how to ask about identity, how to support trans patients on hormones, or how to deal with partners and chosen family. 12 (SAGE Journals)
Together, these barriers help explain why LGBTQ people enroll in trials at low rates, even when interest in new treatments is high.
Why trial gaps matter for palliative and end of life care
Trials do not focus only on cure. Many test new ways to manage symptoms, support families, or improve quality of life during advanced cancer. When LGBTQ people do not join these studies, palliative and end of life care guidelines fail to reflect their needs.
For example, some symptom trials test drugs for pain, shortness of breath, or depression in advanced disease. If sexual and gender minority people are absent, later doctors will not know whether side effects or benefits differ for those on hormones, for those with high minority stress, or for those with different family structures. 812 (PubMed)
Research teams also note that trial discussions often ignore palliative values that matter to LGBTQ people, such as staying with a chosen family member, protecting gender expression, or avoiding certain hospitals. 2 (PubMed)
Steps that research suggests for better care
- Routine collection of sexual orientation and gender identity
Palliative programs and trial teams need to ask every patient about sexual orientation, gender identity, and pronouns in a respectful, standard way. This step allows teams to track who receives palliative care, who enrolls in trials, and where gaps appear. 27 (PubMed) - Training for palliative, hospice, and research teams
Reviews call for required training on sexual and gender minority health for all palliative staff, oncology clinicians, and research coordinators. Training should address language, chosen family, specific trans needs, and the impact of minority stress on trust and decision making. 26 (PubMed) - Inclusive policies and paperwork
Institutions need clear rules that name partners and chosen family as welcome caregivers, protect visitation, and respect name and pronoun use across all parts of the record. Consent forms and trial materials should show diverse couples, genders, and family types. 111 (PMC) - Partnerships with LGBTQ communities
Experts on palliative care and trial access stress the need for partnerships with LGBTQ organizations, clinics, and community leaders. These partners help design outreach, study questions, and support services that match real lives. 2812 (PubMed)
What you are able to do for yourself
Responsibility for these changes rests with health systems. That said, research points to some steps that support your comfort and safety while larger change moves forward.
You are able to:
Write down your name, pronouns, and how you describe your identity, and share this at the start of visits when safety feels strong enough.
Name the people you trust as your main support and ask teams to include them in talks.
Ask directly, “How will this care plan support my comfort and dignity near the end of life” and “Who helps with palliative care here”.
Ask teams about trials in simple language such as, “Are any studies open that match my cancer stage and goals”.
Seek LGBTQ-affirming clinics, palliative programs, and trial centers when choices exist, often through local LGBTQ health groups or online survivor networks.
You deserve palliative and end of life care that respects your identity and relationships, and fair access to trials that shape the future of cancer treatment. The research behind your spreadsheets, along with newer studies, shows both deep gaps and real paths forward. When sexual and gender minority people receive affirming support at the end of life and equal access to research, comfort grows, trust rises, and care for everyone improves.
References
1 Cloyes KG, Hull W, Davis A, et al. Palliative and End-of-Life Care for Lesbian, Gay, Bisexual, and Transgender Cancer Patients and Their Caregivers. Semin Oncol Nurs. 2018. (PMC)
2 Cloyes KG, Jones L, Brown G, et al. Palliative and end-of-life care for sexual and gender minority cancer survivors: A review of current research and recommendations. Curr Opin Support Palliat Care. 2021. (PubMed)
3 De Jong A, Côté I, Sunderland A, et al. Palliative care service provision and use among 2SLGBTQIA+ individuals: A scoping review. BMC Palliat Care. 2024. (BioMed Central)
4 Guillén-Díaz-Barriga C, et al. LGBT healthcare and palliative care competence. Palliat Support Care. 2025. (Taylor & Francis Online)
5 Ussher JM, Perz J, Kellett A, et al. LGBTQI cancer patients’ quality of life and distress: A comparison by gender, sexuality, age, cancer type, and geographical remoteness. Front Oncol. 2022. (Frontiers)
6 Ussher JM, Kellett A, Parton C, et al. Attitudes, knowledge and practice behaviours of oncology health care providers regarding LGBTQI cancer care. Patient Educ Couns. 2022. (ScienceDirect)
8 Rosser BRS, Weideman BCD, Mitteldorf D, Rider GN, et al. Sexual and Gender Minority Invisibility in Cancer Studies: A Call for Effective Recruitment Methods to Address Cancer Disparities. J Clin Oncol. 2023;41(33):5093-5098. (PubMed)
9 Alpert AB, Thompson J, Prentice K, et al. Addressing Barriers to Clinical Trial Participation for Transgender Patients With Cancer. Oncologist. 2022. (PMC)
10 Andac-Jones E, Dowling A, Keogh D, et al. Understanding barriers to LGBTQ cancer clinical trial participation: A qualitative inquiry. 2023. (Cancer Support Community)
11 Chitkara A, et al. Disparities in clinical trial enrollment among LGBTQ+ patients with cancer. J Clin Oncol. 2025;43(4 suppl):805. (ASC Publications)
12 Dhillon HM. LGBTQ+ participation in cancer clinical trials. Clin Trials. 2025. (SAGE Journals)
13 Pothuri B, et al. Identifying and breaking barriers: Addressing disparities in clinical trial enrollment in gynecologic oncology. Gynecol Oncol. 2025. (ScienceDirect)
14 Bergerot C, Spruit J, et al. Global unmet psychosocial needs in cancer care. Lancet Oncol. 2024. (ScienceDirect)