Providing palliative and end of life care to trans and gender diverse communities

Our report “I just want to be me: Trans and Gender Diverse Communities Access to and Experiences of Palliative and End of Life Care" is based on first-hand research with trans and gender diverse communities and those working in end of life care.

The report found that despite best intentions and a willingness to get it right, staff working in end of life care feel they lack the knowledge and training to deliver appropriately inclusive care to trans and gender diverse people. The report also showed that some trans and gender diverse people have faced insensitivity from staff, received poor physical care, been misgendered or faced confusion over their identity.

Understanding the terminology related to trans and gender diverse communities is key to providing high-quality care. More detailed information and references are available in our "I just want to be me" report.

Education and training

• Build a strong foundation. Ensure your staff and volunteers are trained to understand how to support and care for people from LGBTQ+ communities. This should include understanding key terms and healthcare needs.
• Understand patient rights. Make sure staff and volunteers are appropriately trained on relevant legislation such as the Gender Recognition Act 2004 and rules relating to Gender Recognition Certificates.
• Sharing is caring! Support and encourage staff at your hospice to share any training and good practice they have developed.

Put it in writing

• Make it official. Develop clear workplace policies on protecting patients, visitors, staff and volunteers who are trans or gender diverse. This should include how discrimination will be handled and what support will be offered to a staff member or volunteer who begins their transition while employed at your hospice.
• Show people your commitment. Clearly display a statement of inclusion around your hospice – this will show people you have considered their needs. Explain what action people should take if they do not feel they are receiving an inclusive service.

Access to services

• Be proactive. Actively promote that you provide a trans inclusive service.
• Work with your comms team and local LGBTQ+ organisations to determine how best to reach the relevant communities.

Guidance

• Stay up-to-date. Make sure you are following up-to-date best practice on providing medical and clinical care to trans and gender diverse people in palliative and end of life care.
• If you can’t find guidance, ask for it. Ask your professional body for up-to-date guidance on providing medical and clinical care to trans and gender diverse people in palliative and end of life care.

Patient Information

• Make your data systems inclusive. Update your IT and patient information systems, following consultation with trans and gender diverse communities, to ensure people’s name, title, gender and trans status are accurately captured and recorded. Ensure your intake and referral forms capture an individual’s preferred name and pronouns.
• Ask what’s important to each person. Implement a ‘this is me’ document that records information important to each individual, for example their gender, gender expression and any transition-related medical needs. This can be held by each person and/or included in digital shared care records.
• Consider future needs. Make sure your advance care planning (ACP) policies are gender affirming and consider issues such as continuing transition.

Improving quality of care

• Show people where they can get support. Signpost trans and gender diverse people with palliative care needs to appropriate LGBTQ+ organisations who can provide them with extra support and information according to their needs.
• Reflect on patient experience. When collecting feedback on experience of care, make sure you are inclusive of trans and gender diverse people and provide space for people to reflect on care that relates to their gender and identity.

Planning for the end of life

• Don’t assume that someone’s next of kin will be a blood relation or official spouse. Always respect the person’s choice.

Names, pronouns and titles

• Don’t make assumptions about someone’s gender or what their needs may be
• Use neutral language (they/them pronouns, ‘partner’) until you are sure how someone identifies
• If you are comfortable, introduce yourself with your own pronouns and display them. Putting your pronouns in your email signature or on your identity badge are easy ways to do this.

Personal care

• Only ask about someone’s gender or transition when it is necessary to the healthcare being provided
• Do not make assumptions about an individual’s body.

Gender affirming care

• Don’t make assumptions about what clothing someone will be comfortable in. Where there are gendered options, ask the patient what they would prefer
• Discuss with the individual what personal care tasks and activities related to their gender expression (e.g. shaving, putting on make-up) they would like continued if they are not able to continue these themselves.

Demonstrate allyship

• Visibly display your commitment to providing a trans and gender diverse inclusive service, for example by wearing a trans-inclusive pride pin-badge
• Be aware of your own bias. Think about whether you are subconsciously making assumptions about trans and gender diverse people
• Take steps to educate yourself about by trans and gender diverse people’s experiences. Reading books and seeking out resources such as podcasts by people with lived experience can help you gain a better understanding.

You might find these sources of information about palliative and end of life care for people from LGBTQ+ communities helpful.

ACCESSCare for lesbian, gay, bisexual and trans people approaching the end of life
Cicely Saunders Institute, University of Nottingham

A project aiming to improve demand for and supply of palliative care for people who identify as LGB and/or T and are in the later stages of a life-limiting illness.

Being Ready
GIRES

A project set up to address the needs of trans and gender diverse people during all stages of dying, death and bereavement. Phase 1 included the survey which formed the basis of our report.

The route to success in end of life care – achieving quality for lesbian, gay, bisexual and transgender people
NHS England

A practical implementation document aiming to address end of life care needs in relation to LGBT people.

I am your trans patient
Emma-Ben Lewis, Ben Vincent, Alex Brett and Sarah Gibson

What Your Patient is Thinking journal article where transgender authors share their experiences of healthcare and the important messages they would like doctors to know. British Medical Journal article.

If we’re not counted we don’t count: Good practice guide to monitoring sexual orientation and trans status 2021
LGBT Foundation

Guide explaining how monitoring plays a large role in identifying and addressing inequalities. It also contains updated guidance, tips and case studies.

Provider Pack: Breaking down barriers to LGBTIQ+ inclusive cancer care
Live Through This

Booklet combining core training and information from the UK’s only LGBTIQ+ cancer charity.

‘It’s more than rainbows in receptions’ – working with LGBTQ+ people in palliative and end-of-life care

Jerwood, J., Allen, G., Juffs, H., Humphries-Massey, C., Wakefield, D., Hudson, S. et al

An educational resource for healthcare professionals that aims to remove the barriers faced by LGBTQ+ people in accessing palliative and end of life care. Funded by Marie Curie and developed by The Mary Stevens Hospice.

The content and views expressed by these organisations do not represent the views of Hospice UK.