Cultivating LGBTQ+ Inclusive and Gender-Affirming Hospice and Palliative Care

The U.S. Department of Health and Human Services defines health equity as the “attainment of the highest level of health for all people” and notes that “achieving health equity requires valuing everyone equally with focused and ongoing societal efforts to address avoidable inequities, historical and contemporary injustices, and the elimination of health and health care disparities.”1 Health disparities can be defined as differences in health associated with social, economic, and/or environmental disadvantages.2 Health disparities adversely affect vulnerable populations through greater obstacles to health and wellbeing.

Examples include:3

  • Individuals with chronic illnesses, disabilities or communication barriers
  • The very young and the very old
  • Racial and ethnic minorities
  • Individuals who identify as lesbian, gay, bisexual, transgender, or queer (LGBTQ+)
  • Veterans
  • Individuals who are incarcerated and their family members
  • Victims of human trafficking or sexual violence
  • Rural Americans
  • Migrant workers
  • Individuals with chronic mental health disorders
  • People experiencing housing instability or homelessness

It is estimated that there are more than 39 million people in the U.S. age 65 years or older including 2.4 million people (6%) who identify as lesbian, gay, bisexual, or transgender.4 LGBTQ+ adults are more likely to feel alone and face social challenges at the end of their lives. This can happen because their families have rejected them, or because they have chosen to distance themselves rather than reveal their sexual orientation or gender identity. Some stay close to their families, but still feel disconnected because their families don’t acknowledge the importance of their identity. While LGBTQ+ people often create supportive networks of friends, they are less likely to have children. These chosen family members might also be elderly or sick, making it hard for them to act as healthcare representatives or caregivers when needed.5

Consider chosen family vs biological family as caregiver

Ensure planned documentation reflects patient’s preferences

Consider implications of medication adjustment

While the hospice community has traditionally placed a strong emphasis on inclusivity, a 2020 study found that over half of hospice and palliative care professionals thought that LGBTQ+ patients were more likely than non-LGBTQ+ patients to experience discrimination at their institution. One in seven had observed that a spouse/partner of an LGBTQ+ patient experiencing disrespect or having their treatment decisions disregarded or minimized.6 To improve experiences for LGBTQ+ patients and their loved ones, hospice organizations should implement policies against discrimination and bias, provide mandatory cultural competency training, and use a data-driven approach to track progress and identify issues for correction. Individual clinicians should take a holistic approach to history taking and physical examination including psychosocial, mental, sexual health, and well-being.7 One useful starting point for all patients is the Patient Dignity Question: What do I need to know about you as a person to give you the best care possible?8

Understanding Sexual Orientation and Diverse Gender Identities

Any discussion of sexual orientation and gender identity must begin by acknowledging that social conventions around gender are continually evolving and so is the preferred terminology to describe the lived experience of LGBTQ+ individuals. The most important point to keep in mind is that each patient is an individual with unique values and preferences. The following table from American Journal of Nursing provides a helpful summation of gender concepts:

Terms to Promote Open, Honest, and Nonprejudicial Conversations with Transgender and Gender Nonconforming Individuals9

Term Definition
Gender/Gender Identity A person’s sense of identity as it relates to the social construction of gender.

For some, but not all, this sense of identity is driven by a strong connection and identification with anatomical characteristics associated with sex.

For those without a strong connection to a particular gender, the disconnection is not pathological, but the result of where one’s sense of identity is most prevalent at a given time.

Gender Expression A personal choice. This is how a person decides to show the world their understanding of their gender as they experience it at any given moment.
Sex Not the same as gender.

Typically refers to the external reproductive body parts developed from sexual differentiation in utero in the first trimester that are observed at birth.

Sexual Orientation How, if at all, one experiences emotional, romantic, or sexual attraction and to whom. May include but is not limited to identities such as lesbian, gay, bisexual, queer, and asexual.
Cisgender When a person’s gender identity aligns with the sex assigned to them at birth.
Sex Assigned or Assumed at Birth An assessment by family or providers about the presumed gender of a child based on observed sex characteristics at birth.
Transgender Describes a person whose gender and sex assumed or assigned at birth do not align.
Nonbinary or Gender Diverse Describes a person whose gender identity is not defined by the binary maleness or femaleness. Individuals choose for themselves another way to describe their gender identity.

Similar terms: gender nonconforming, genderqueer, gender expansive.

Gender Fluid Describes a person whose gender is not fixed. One moment the individual may experience their gender identity as male, another moment as female, another as diverse or nonbinary.
Grey or Grey Gender Describes a person who does not know and has not determined for themselves what their gender is.
Two Spirit This is a culturally specific term used for and by some Indigenous people. This term covers sexual, gender, and even spiritual identities.
Note: Non-affirming terms to avoid that can be insensitive and harmful: sex-change operation, post-op or pre-op in the context of gender-affirming surgery, tranny, she-male, he-she, transsexual, transgendered, and homosexual.


Best Practices for Gender-Affirming and LGBTQ+ Inclusive Hospice and Palliative Care Programs

Consider medical relevance vs personal curiosity
Use positive language
Use neutral pronouns if unsure, and then assess
Create visibility to message acceptance
Each patient is unique

Focusing on LGBTQ+ people in palliative care acknowledges that their sexual orientation and gender identity are important parts of who they are and avoids assumptions about how these identities might affect their end-of-life care. To truly support each LGBTQ+ patient with a terminal illness, palliative care needs to include specific services for transgender and nonbinary people, LGBTQ+ people of color, Indigenous LGBTQ+ people, and those with other intersecting identities.5

Obtaining a good medical history, including complete medication list and surgical history, is helpful in guiding the care plan. For transgender individuals who use hormone therapy, adjustments to these medications must be carefully considered using a shared decision-making approach.10 There is a strong case for continuing hormone therapy in transgender patients enrolled in hospice care. However, there are important considerations regarding how these treatments can affect the body.

Hormone Replacement Therapy
Male to Female (MTF) Spironolactone, Estrogen
Female to Male (FTM) Testosterone
Adolescents (Puberty Delay) Gonadotropin-releasing hormone (Gn-RH)

Testosterone and estrogen therapies present a small risk to liver function in most transgender individuals. However, changes in metabolism associated with aging and disease progression could increase the risk in some patients, particularly in combination with alcohol and pharmacological therapy.11 Hormone therapy can also affect cardiovascular health. Estrogen therapy in transgender women (MTF) can increase the risk of thromboembolic events (blood clots), stroke, and heart disease. Testosterone therapy in transgender men (FTM) can increase the risk of polycythemia (increased red blood cell count), which can also lead to blood clots and cardiovascular issues.12

Some transgender patients choose to have gender-affirming surgeries and this can create special concerns around wound and genital care in hospice and palliative care settings. Clinicians should exercise special sensitivity in these cases through the following best practices:7

  • Obtain permission before examining any body part.
  • Ask the patient to take the lead in sharing how they name their body parts.
  • Provide a thorough explanation of the rationale for the physical exam and any concerning findings.
  • Collaborating on the next steps in a tailored comprehensive plan of care.

By taking these factors and best practices into account, clinicians can provide comprehensive and compassionate care to transgender patients on hormone therapy, ensuring their treatment is both safe and effective. The most important thing is to respect the patient’s autonomy and goals—an essential element of all hospice care.


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  1. Liburd, Leandris C et al. “Addressing Health Equity in Public Health Practice: Frameworks, Promising Strategies, and Measurement Considerations.” Annual review of public health 41 (2020): 417-432. doi:10.1146/annurev-publhealth-040119-094119
  2. gov. (2022, February 6). Lesbian, gay, bisexual, and transgender health. Office of Disease Prevention and Health Promotion, U.S. Department of Health and Human Services. https://www​.healthypeople​.gov/2020/topics-objectives​/topic/lesbian-gay-bisexual-and-transgender-health.
  3. Open Resources for Nursing (Open RN); Ernstmeyer K, Christman E, editors. Nursing: Mental Health and Community Concepts [Internet]. Eau Claire (WI): Chippewa Valley Technical College; 2022. Chapter 17 Vulnerable Populations. Available from: https://www.ncbi.nlm.nih.gov/books/NBK590046/
  4. Pereira, Henrique, and Debanjan Banerjee. “Successful Aging Among Older LGBTQIA+ People: Future Research and Implications.” Frontiers in psychiatry 12 756649. 25 Oct. 2021, doi:10.3389/fpsyt.2021.756649
  5. Robinson, Lilian, and Cam Matamoros. “Applied patient-level palliative care interventions designed to meet the needs of sexual and gender minorities: A scoping review and qualitative content analysis of how to support sexual and gender minorities at end of life.” Palliative medicine 38,1 (2024): 69-84. doi:10.1177/02692163231214123
  6. Stein, Gary L et al. “Experiences of Lesbian, Gay, Bisexual, and Transgender Patients and Families in Hospice and Palliative Care: Perspectives of the Palliative Care Team.” Journal of palliative medicine 23,6 (2020): 817-824. doi:10.1089/jpm.2019.0542
  7. Javier, Noelle Marie. “Palliative care needs, concerns, and affirmative strategies for the LGBTQ population.” Palliative care and social practice 15 26323524211039234. 9 Sep. 2021, doi:10.1177/26323524211039234
  8. Chochinov, Harvey Max et al. “Eliciting Personhood Within Clinical Practice: Effects on Patients, Families, and Health Care Providers.” Journal of pain and symptom management 49,6 (2015): 974-80.e2. doi:10.1016/j.jpainsymman.2014.11.291
  9. Lippe, Megan Pfitzinger et al. “Affirmative Palliative Care for Transgender and Gender Nonconforming Individuals.” The American journal of nursing 123,4 (2023): 48-53. doi:10.1097/01.NAJ.0000925508.62666.99
  10. Maingi, Shail et al. “Current Best Practices for Sexual and Gender Minorities in Hospice and Palliative Care Settings.” Journal of pain and symptom management 55,5 (2018): 1420-1427. doi:10.1016/j.jpainsymman.2017.12.479
  11. Hashemi, Leila et al. “Longitudinal Changes in Liver Enzyme Levels Among Transgender People Receiving Gender Affirming Hormone Therapy.” The journal of sexual medicine 18,9 (2021): 1662-1675. doi:10.1016/j.jsxm.2021.06.011
  12. van Zijverden, Lieve Mees et al. “Cardiovascular disease in transgender people: a systematic review and meta-analysis.” European journal of endocrinology 190,2 (2024): S13-S24. doi:10.1093/ejendo/lvad170