‘I Just Want to be Me’: End of life care for trans and gender diverse communities

Our new report “I just want to be me” Trans and Gender Diverse Communities’ Access to and Experiences of Palliative and End of Life Care, published today, is based on first-hand research with the trans and gender diverse community and those working in end of life care. 

It explores those barriers in depth for the first time and sets out recommendations for how to tackle them.

The conversation around trans healthcare often focuses on access to transition. Whilst this is important, it is vital that trans and gender diverse people’s experiences are considered across all healthcare services. 

In the 2021 England and Wales Census, 0.5% of respondents, 262,000 people, answered that their gender identity was different to their sex registered at birth. This is a significant population of people that will need end of life care which meets their needs.

Findings

Our research, carried out as part of the Being Ready project with the support of the Gender Identity Research & Education Society (GIRES) and Stonewall, showed that:

• In many instances, end of life care received by trans and gender diverse people was not inclusive of them and their needs. Trans and gender diverse people reported instances of insensitivity from staff, such as misgendering, confusion over their identity and instances of poor physical care.
• 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 patients. 
• Some staff raised serious concerns over discriminatory views not being addressed in the work place.
• In wider trans and gender diverse communities, many expressed apprehension about one day needing end of life care, in part due to a range of negative experiences with other healthcare services. 
• Trans and gender diverse people often fear that their identity won’t be respected after their death, including in official records and funeral services.

The report makes simple and practical recommendations ensure end of life care is welcoming and inclusive for trans and gender diverse people.

• Staff should receive training on caring for trans and gender diverse patients prior to qualification and be supported with further education and guidance throughout their career.
• Providers of end of life care should be encouraged to implement a ‘this is me’ document that includes information important to the individual, such as information about their gender, pronouns, preferred name, presentation, and transition-related medical needs.
• Providers should develop a robust inclusion policy to protect patients, visitors, staff and volunteers who are trans or gender diverse.
• Trans and gender diverse people going through end of life care must be supported to transition during their care where desired.

You can read the full report.