Barriers LGBTIQ+ People Face in Accessing Palliative Care

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By Gage Brewer, him/he, Palliative Care Nurse Practitioner Candidate, SA Health

Inclusive care is crucial to ensuring all people, including the LGBTIQ+ community, receive the respect and support they deserve in healthcare and at end-of-life.

This blog explores the unique challenges LGBTIQ+ people can face when accessing palliative care and offers practical ways for healthcare providers to create a more inclusive and supportive environment.

1. Lack of Knowledge Among Healthcare Providers
   When talking to other clinicians about inclusive care, I often hear “I treat everyone the same, regardless of sexuality, gender or race”.

This comes from a place of good and wanting to provide everyone the same respect and a high standard of care, however, I ask, “would you treat a 15-year-old who is pregnant the same as an 80-year-old with prostate cancer? My point is people come from a range of experiences, values, cultures, health issues and life stages, so we tailor care which is relevant to that person. An aspect of this is knowing the potential barriers to care for diverse groups of people to improve healthcare access and ensure equity.

A significant barrier for LGBTIQ+ people in palliative care is the limited understanding healthcare providers may have about diverse identities, terminology, and community histories. Many clinicians are unaware of past oppression and marginalisation, which can impact the way they deliver care and interact with patients.

2. Fear of Discrimination
   LGBTIQ+ people may worry that healthcare providers will react negatively to their relationships, pronouns, or gender presentation. These fears are heightened when accessing services within faith-based organisations, as many people have experienced discrimination from religious institutions in the past.
3. Non-Inclusive Administrative Forms
   Many healthcare forms only provide binary options for sex or gender, forcing individuals to select "male" or "female" without recognising a broader spectrum of identities. The absence of space for pronouns or inclusive language can make LGBTIQ+ people feel unseen and excluded from the system.
4. Exclusion of Chosen Family
   Members from our community can be rejected by their chosen families and find close connections from others within our LGBTIQ+ community. These chosen family - partners, close friends, or supportive community members, are often more important than biological relatives. However, healthcare providers may fail to acknowledge these relationships, leaving chosen family members ignored or excluded from crucial care decisions.
5. Involvement of Unsupportive Families of Origin
   This can be distressing, particularly at the end-of-life, when a person’s comfort and emotional well-being should be prioritised.
   Some LGBTIQ+ people fear that estranged biological family members may be involved in their care or seek claims to their finances, even if these family members have rejected them for who they are and have not seen them for many years.
6. Delayed Access to Care
   Due to past experiences or fear of discrimination, many LGBTIQ+ people avoid seeking healthcare until it is necessary. Unfortunately, delaying care can limit treatment options and make it harder to manage symptoms effectively.
   I cared for an elderly man who experienced significant discrimination from previous experiences from doctors and nurses during the AIDS epidemic in Australia. Due to this, he avoided coming to hospitals because of fear of discrimination which delayed his care.  
7. Lack of Trust in Healthcare Providers
   When LGBTIQ+ individuals feel unsafe or unsupported, they may withhold personal information from healthcare providers. This can lead to a breakdown in communication and trust, making it harder for clinicians to provide appropriate care. In some cases, individuals may even consider "going back into the closet" to avoid potential discrimination. This really hits home. I have personal experience with this, with a doctor who made it obvious she did not agree with my sexuality. This made me shut down, limit the health information I discussed with her and I left the review without having my health needs met.

How Healthcare Workers Can Support LGBTIQ+ People

1. Move Beyond Tolerance—Embrace LGBTIQ+ People
   Healthcare workers should go beyond an acceptance and actively embrace our LGBTIQ+ community. This means genuine inclusion, creating a welcoming and affirming environment where we feel valued for who we are. This could mean inclusive health documentation with space for pronouns, organisation documents showing same-sex couples or gender diverse people or work name tags with pronouns.
2. Use Inclusive Communication
    Using our chosen name and pronouns can make a huge difference in making us feel safe and respected. This normalising inclusive language also sets an example for other healthcare providers and helps create a more supportive healthcare environment.
3. Be Inquisitive with Care
   Using open-ended questions is a really good way to allow our community to choose the type of information they wish to disclose to health professions. A question like, “Who is important to you in your life?”, this can be helpful as rather than making assumptions about family structures and relationships, allows individuals to share what is important to them on their own terms.
4. Respect End-of-Life Wishes
   End-of-life care should reflect the wishes of the person, which may include having chosen family by their side instead of estranged biological relatives. It is also important to use their preferred name, pronouns, and terms for their body parts, as well as respecting their choices regarding clothing and personal presentation. This can also be planning for after death, such as Wills, funeral planning – who we would want there, who shouldnt be there and what name and pronouns are used.
5. Seek Education and Engagement
   “You don’t know what you don’t know”. To learn more, healthcare professionals should undertake LGBTIQ+ inclusion training and actively engage with the community to learn and understand. Building relationships with the LGBTIQ+ community and participating in community events can help create a deeper understanding of the unique challenges they face in healthcare settings.

The Importance of LGBTIQ+ Inclusive Care

1. Person-Centred Care is Fundamental
   Palliative care should focus on the whole person, not just their medical symptoms or disease. Recognising diverse backgrounds, cultures, and identities ensures that care is truly person-centred and respectful of individual's lived experience.
2. Avoiding Heteronormative Assumptions
   Non-inclusive care often assumes that everyone is straight and identifies strictly as male or female. This erases the identities of many LGBTIQ+ individuals and can contribute to feelings of exclusion, marginalisation, and diminished self-worth.
3. Ensuring a Respectful End-of-Life Experience
   Approaching the end-of-life is a deeply emotional and often challenging experience. Inclusive care can ease this process by affirming a person’s identity, allowing them to feel comfortable and supported in their final days.
4. Reducing the Burden on Patients
   LGBTIQ+ people should not have to consistently educate healthcare professionals about their identities or needs, especially during such a vulnerable time. Proper training and awareness can ensure that care providers are already equipped with the knowledge to offer respectful and affirming support.
5. One Chance to Get it Right
   End-of-life care happens once, and healthcare workers only have one opportunity to ensure a person’s final moments are dignified and respectful. Providing inclusive care helps create a safe, affirming environment where individuals can feel valued and truly seen.

The LGBTIQ+ Inclusive Palliative Care eLearning is a series of four online modules aimed at increasing healthcare providers’ awareness of the challenges LGBTIQ+ people may face in accessing palliative care. The course also aims to boost healthcare professionals’ confidence in delivering inclusive and compassionate care.

 

Learn more in the updated End-of-Life Essentials module ‘End-of-Life Care for Diverse Populations’

 

 

 

 

 

 

Gage Brewer
Nurse Practitioner Candidate – Palliative Care
Northern Adelaide Palliative Service (NAPS)
Northern Adelaide Local Health Network, SA Health