Providing Inclusive and Affirmative Palliative Care for the LGBTQ+ Community
Why Inclusive Care for LGBTQ+ Patients is Essential
Despite the historical efforts to advance civil rights for the lesbian, gay, bisexual, transgender, queer and/or questioning (LGTBQ+) community – there continues to be ongoing discrimination in society, including in health care. Providing inclusive care for seriously ill LGBTQ+ patients is essential for ensuring equitable, respectful, and comprehensive health care.
As the percentage of U.S. adults who self-identify as lesbian, gay, bisexual, transgender, or another non-heterosexual or non-cis-gender identity has increased to a new high of 7.1%, with some surveys also suggesting roughly 28% of Gen Z adults identify as LGBTQ+. This means that integrating inclusive principles into health care practices is paramount. However, there remains a gap in provider education in LGBTQ+ care. On average, only 5 hours are spent on LGBTQ-specific content in American and Canadian medical schools, with many reporting no such education at all. This resource aims to offer palliative care and other health care professionals strategies and best practices for providing competent and compassionate care to LGBTQ+ patients living with a serious illness.
"Creating a cultural shift towards inclusivity starts with understanding and respecting the LGBTQ+ community's history and presence, both in our attitudes and in our healthcare systems."
NOTE: CAPC acknowledges that laws and policies affecting LGBTQ+ health care continue to change and vary by state. Always consult with your organization’s legal and compliance teams to understand what is permissible in your practice. This guidance is intended to support inclusive and affirming care within legal and institutional frameworks while prioritizing patient well-being.
Understanding LGBTQ+ Terms and Definitions
LGBTQ+ is an abbreviation for lesbian, gay, bisexual, transgender, queer or questioning, and more. Understanding these terms is fundamental for providing respectful and appropriate care. It allows health care providers to recognize and address the unique needs and concerns of LGBTQ+ patients, ensure that care plans are inclusive of patients' identities and relationships, fosters a welcoming environment that reduces stress and anxiety for patients during vulnerable times, and improves communication and trust between patients and health care providers, leading to better health care outcomes.
| Term | Definition |
|---|---|
| Lesbian | A woman who is emotionally, romantically, or sexually attracted to other women. Both transgender and cisgender women can be lesbians. |
| Gay | A person who is emotionally, romantically, or sexually attracted to members of the same gender, often used specifically to refer to men. |
| Bisexual | A person who is emotionally, romantically, or sexually attracted to more than one gender. |
| Transgender | A person whose gender identity differs from the sex they were assigned at birth. |
| Queer | An umbrella term for sexual and gender minorities who are not heterosexual or cisgender |
| Questioning | Refers to individuals who are exploring their sexual orientation or gender identity. |
| + | Represents other sexual orientations and gender identities not explicitly covered by the other terms. |
*CAPC acknowledges that the acronym (LGBTQ+) and definition list are not complete, as shown by the + sign. The identities represented with a letter in the acronym are constantly evolving and those not identified in the acronym are still valid.
Project Respect: Experiences of Seriously Ill LGBTQ+ Patients and Partners with their Health Care Providers
In a 2023 cross-sectional mixed-methods study conducted by Gary Stein and colleagues used an online survey to better understand the health care experiences of 290 LGBTQ+ patients with a serious illness and the spouses, partners, and widows of LGBTQ+ patients with a serious illness. Some key findings include:
- 35% of respondents felt their providers were insensitive due to their identity.
- 30% reported their providers were unaware of LGBTQ+ needs.
- 20% reported being treated rudely or misgendered.
- 19% felt their treatment preferences were disregarded.
- Spouses or partners were often not recognized as decision-makers.
- Black and Hispanic LGBTQ+ patients were two to four times more likely to report experiencing discrimination.
These findings underscore the urgent need for inclusive and culturally competent care in palliative settings to address the unique needs and challenges faced by LGBTQ+ individuals.
Provider Observations of LGBTQ+ Patient Experience
Many LGBTQ+ patients experience apprehension about disclosing their sexual orientation or gender identity for fear of discrimination, leading them to refuse supportive services and strive for autonomy. A 2023 survey involving 865 hospice and palliative care (HAPC) providers revealed the following:
- 1 in 5 providers had directly observed discriminatory treatment towards lesbian, gay, and bisexual (LGB) patients in their own institutions.
- 63% of providers had witnessed discrimination against transgender patients.
- 53% of providers believed LGBTQ+ patients were more likely to face discrimination compared to their non-LGBTQ+ counterparts.
Spiritual Care Experiences
According to a 2018 survey by the Public Religion Research Institute, LGBTQ+ individuals are more likely than the average American to identify as being unaffiliated with any religion, or being atheist. However, the broader LGBTQ community engages in a diverse array of religious and spiritual practices, including Judaism, Buddhism, New Age religions, or as being spiritual but not religious.
| Here are some tips for providers to engage in: |
|---|
| Recognize that patients may experience existential distress whether or not they have a religious or spiritual affiliation. Serious illness raises questions about meaning, relationships, and mortality that may be central to your patients’ experiences. |
| Practice trauma-informed care by recognizing that your LGBTQ+ patients may have faced past discrimination and rejection from religious institutions. |
| Engage in open, non-judgmental conversations to understand each patient’s spiritual needs, including preferred rituals and the involvement of affirming spiritual leaders. |
Improving the LGBTQ+ Patient Experience as a Palliative Care Clinician
Our goal is to provide highest-quality, non-biased, culturally responsive care to LGBTQ+ individuals with serious illness. The strategies below provide guidance for individuals, teams, and organizations to improve care quality for this population.
Individual
- Ensure Confidentiality: Protect the privacy of LGBTQ+ patients, especially for those not openly identifying as LGBTQ+ in all areas of their lives. Do not assume what patients are and aren’t comfortable disclosing, and with whom.
- Elicit information about your patients’ care partners and social supports. Particularly for older LGBTQ+ patients who may have faced ostracization from their biological families, social networks may be made up largely of “chosen family”. Ensure patients’ health care proxies are identified and documented.
- If you are a “safe space” for LGBTQ+ patients, make it clear. Rainbow flags and pins can be a signal that you treat all patients with dignity and respect, regardless of sexual orientation or gender identity.
- Recognize the high incidence of mental health issues faced by the LGBTQ+ community. Consistently screen for depression and anxiety, and ensure appropriate treatment and/or referral pathways to mental health professionals.
- Adopt an Intersectional Approach: Recognize that race, ethnicity, socioeconomic status, and other identities can all be factors in a patient’s lived experience of serious illness, and the interactions they have with health professionals. (For example, recall that in one study, Black and Hispanic LGBTQ+ patients were two to four times more likely to report experiencing discrimination.)
- Practice Active Listening: Always listen carefully to your patients and let them guide the conversation about their identity.
- Engage in ongoing, bi-directional, respectful, goals of care conversations with patients to ensure their needs and preferences are documented and implemented
- Utilize an trauma-informed care (TIC) approach: LGBTQ+ individuals are disproportionately victims of trauma or discrimination, and it is crucial for health professionals to apply TIC best practices.
Health Care System
If you are in a position to influence health system or organizational policy, consider the following priorities:
- Provide Visible Cues of Safety and Inclusion: Use inclusive language in patient-facing forms and signage throughout the health care setting.
- Provide Comprehensive Care: Offer inclusive sexual and reproductive health services and gender-affirming care.
- Support Mental Health: Address the higher rates of anxiety, depression, and suicide ideation in the LGBTQ+ community.
- Tackle Stigma and Trauma: Provide resources and support for issues related to stigma, discrimination, and trauma.
- Support Accurate and Respectful SOGI Data Collection: Where allowed by institutional policy and with permission of patients, document sexual orientation and gender identity (SOGI) data in the medical record.
Field/Palliative Care Ecosystem
- Stay Informed and Advocate for Protections: Keep up with evolving laws and policies that affect LGBTQ+ health care access. Support institutional policies that promote inclusive care and collaborate with advocacy organizations working to protect LGBTQ+ rights.
- Promote Inclusive Research Within Legal Guidelines: Ensure LGBTQ+ populations are represented in health research where possible. If facing restrictions, focus on community engagement, patient-reported experiences, and ethical research practices that highlight LGBTQ+ health needs.
The Bottom Line
For patients that have experienced discrimination from the health system, trust-building is a key priority and the foundation on which health care is delivered.
Content Contributors/Acknowledgements:
Kimberly D. Acquaviva, PhD, MSW, CSE, FNAP
Betty Norman Norris Endowed Professor of Nursing, University of Virginia
Anup Bharani, MD
Assistant Professor, Brookdale Department of Geriatrics and Palliative Medicine
Brynn Bowman, MPA
Chief Executive Officer, CAPC
Brittany Chambers, MPH, CHES
Director of Health Equity, CAPC
Diane Farquhar, LCSW, ACSW (1957 – 2023)
Clinical Social Worker, Hertzberg Palliative Care Institute
Noelle Marie Javier, MD
Associate Professor, Brookdale Department of Geriatrics and Palliative Medicine
Rabbi Max Zev Reynolds, BCC, MA
Palliative Care Chaplain, The Hertzberg Palliative Care Institute
Billy Rosa, PhD, MBE, APRN
Assistant Attending Behavioral Scientist, Memorial Sloan Kettering Cancer Center
Rayna Ross, CHES
Health Equity Program Manager, CAPC
Additional Resources:
- Fostering a Safe Space for Our LGBTQ+ Patients and Staff
- CAPC Virtual Office Hour: Health Equity and Reducing Implicit Bias in Palliative Care
- Trauma-Informed Care Toolkit
- Case Review: Providing Inclusive and Affirmative Palliative Care for the LGBTQ+ Community
- The Handbook of LGBTQIA-Inclusive Hospice and Palliative Care