Hospice UK believes that everyone should receive high quality end of life care, no matter who they are. As part of this, we are committed to understanding the barriers faced by trans and gender diverse people when accessing end of life, hospice, and palliative care.
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.
“Trans and gender diverse people frequently experience unequal access to health and care services, and the same is true for care at the end of life.
“Our new report uses real-world experience to understand and inform how trans and gender diverse people access and understand end of life care. It serves as a platform to highlight the needs of these communities, and sets out recommendations for what hospices and palliative care professionals can do to make end of life care more equal and accessible for everyone.”
Jonathan Ellis, Director of Policy, Advocacy and Clinical Programmes at Hospice UK
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.
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.
“This report is an important first step to getting end of life care right for trans and gender diverse people.
“Many in these communities are apprehensive about accessing end of life care as a result of bad experiences with general health care.
“Hospice UK’s report shows that the palliative care and hospice sector want to change this, and provides some vital recommendations to make this change happen.”
Dr Ellie Kane, Consultant in Palliative Care Medicine