I just want to be me: Trans and gender diverse communities access to and experiences of palliative and end of life care

The perspectives and experiences of trans and gender diverse people and their families, shared with us through surveys, interviews and wider conversations, are at the centre of this report. It also includes insight from LGBTQ+ organisations and more than 100 individuals working in palliative and end of life care.

What are the findings?

In many instances, the report finds that the end of life care that trans and gender diverse people receive is not inclusive of them. Despite best intentions and a willingness to learn, staff feel they lack the knowledge and training needed.

The report highlights trans and gender diverse experiences across 5 key areas;

• Planning for the end of life – We found that trans and gender diverse people planning for the end of their life often had different motivations or concerns than cis-gender people. People spoke about their unsupportive family members, and how they worry they would seek to go against their wishes at the end of their life.
• Approaching care providers – Many who shared their perspectives with us expressed anxiety or concern over approaching end of life care providers. Some worried that their identity would be ignored or suppressed. Others cited repeated negative previous healthcare experiences as causing their concern. Some also spoke about a fear of encountering outright discrimination when in such a vulnerable position.
• Retaining identity and dignity – The report describes examples where individuals in end of life care have not been referred to with the correct name, pronouns, title, or have not been supported to dress in clothing that affirms their gender. It also highlights the importance of continuing conversations about transition healthcare even when in palliative care.
• Physical care – Palliative and end of life care professionals were concerned about their lack of medical knowledge specific to trans and gender diverse people receiving end of life care, and awareness of whether certain care would need to be different.
• Workforce and training – The palliative and end of life care workforce want to provide inclusive and accessible care to trans and gender diverse people, and want to have the training and information to do this confidently.

How can this be addressed?

The report uses these learnings to find ways to improve trans and gender diverse communities access to and experiences of palliative and end of life care.

It includes 19 important recommendations directed towards government, health and social care leaders and palliative and end of life care providers. For example, that in order for health and social care staff to be better equipped to support trans people they should receive training pre-registration on trans and gender diverse communities.

The report also includes a range of practical tips for health and social care providers, staff and volunteers to begin making their services more inclusive for trans and gender diverse people day to day.

There is still significant work to be done to address the barriers faced by trans and gender diverse people.

We hope this report is used as a resource and an opportunity to continue to make palliative and end of life care services more inclusive, and truly open to all.

Biography

Olivia is Policy and Advocacy Officer at Hospice UK, the national charity for hospice and end of life care.