The LGBTQ+ community has historically faced marginalisation or discrimination. We at Princess Alice Hospice want to ensure that our Hospice is a safe place for people to come and access our services without fear of discrimination or misunderstanding. While we work to ensure our services are accessible and equitable, we need to understand the importance of putting in this work.

In a 2020 study, it was reported that 25% of staff working in hospice care observed discriminatory care towards lesbian, gay, and bisexual patients and 20% observed discrimination towards their transgender patients.

14% observed the partners of LGBTQ+ patients have their treatment decisions disregarded or minimised, with the same number observing these partners being treated disrespectfully.

It’s no wonder that 60% of LGBTQ+ adults believe that health and social care institutions or workers will not adequately meet or understand their needs, with 70% of transgender patients feeling they experienced some form of discrimination in a healthcare setting.

Reluctance and anxiety about the treatment patients will receive as members of the LGBTQ+ community leads people to delay access to services. Their delayed access may mean a worse quality and shorter length of life, increased hospital admissions and likelihood of dying in hospital, increase anxiety and depression in informal carers and length of time that family and friends may have to take the role of informal carers.

“My experiences as a trans person have been very disappointing, from staff not ‘knowing what to do with me’ (their words), misgendering me despite me passing very well as male, and seemingly not understanding when my trans status is and isn’t relevant to care. I am therefore concerned that should I need ongoing or end of life care at any point this would be something that would make me uncomfortable.” – survey respondent (Hospice UK, 2023)

Comfort is a top priority in palliative and end of life care and it is a primary value of the Hospice to ensure that everyone can spend such a vital time in a place that not just allows them to be themselves, but celebrates their life and how they live it. This can be small things, such as continuing to shave a person who has transitioned to female so they feel feminine at the end of their life.

“Many health and social care professionals say that they treat everyone the same. This is well-intentioned. However, sometimes for everyone to be equal, differences need to be acknowledged and given space to be celebrated.” (Sandi Toksvig)

That’s why it’s important to challenge any sweeping assumptions we have about care or about individuals in our work or lives. We can learn about where people’s care needs may differ best by being open-minded, and by understanding terms they may use to explain themselves and their needs. We can then respond appropriately to each individual to ensure they have the best end of life or palliative care experience possible.

“If you asked most people at a hospice, do we care for people regardless of their background, I think most people would say yes, but the truth is as a trans person I don’t have the luxury of assuming that…Rather than expecting trans people to assume we’re ‘safe’ we need to make it explicit that we are by making it really clear that they’re welcome and we want them there and they’ll be treated as they are with respect and dignity.”

For example, it’s important not to assume that a male patient has a wife at home. The patient may then be faced with the difficult decision whether to ‘come out’ in an environment they aren’t certain will be welcoming, or to hide their orientation for fear of discrimination. This then puts an obstacle in place of their comfort as we may assume a certain type of support that isn’t there, or we may not be including a patient’s loved one in their end of life experience because we haven’t created an environment where we are not aware of their existence and haven’t made them feel comfortable interacting within the space of the hospice. Often, LGBTQ+ service users are too scared to demonstrate affection towards their partner when they are most vulnerable.

“The thought of going back into the closet really, into a heterosexual environment, would be awful at the end of your life.”

It is therefore important for the Hospice to tell stories of those who have lived experience being LGBTQ+ in the Hospice, to show our commitment to promoting the stories of those less heard, while learning from those stories too. Indeed, many staff in healthcare are not intentionally discriminatory or not inclusive, but simply feel they lack the training to properly support LGBTQ+ service users, which is why prioritising learning and listening this Pride month and beyond is so important.

It is important for us not to make assumptions, nor force people either way into ‘coming out’ or ‘staying in’, but to let people discuss their preferences for their end of life or palliative care plan, whether this be pronouns, choice of loved ones/next of kin (perhaps neither biological nor marital), choice of name, or anything that would help ensure comfort, respect, and belonging at that crucial time in someone’s life. We must help people feel they can disclose their sexuality or gender without any fear that they are correcting assumptions or going against ‘what is normal’ and ensure that our care is individualised, appropriate, and accessible for anyone who chooses to use it.

For only when we can be certain we provide the best care for everyone can we ensure Princess Alice Hospice truly is for excellence, for compassion, for people, and for living.

Written by Rosa Armstrong