How to deliver personalised end of life care for LGBTQ+ patients

Healthwatch Brighton and Hove carried out a literature review in 2021-22 to understand the specific needs of LGBTQ+ people receiving end-of-life care. The review built on earlier local work about palliative care and examined national and international research. A key finding was that LGBTQ+ people can face additional barriers when accessing end-of-life care, including fears of discrimination, concerns about whether staff will recognise important relationships and worries about whether their wishes and identities will be respected. 

The review found that healthcare staff often adopt a well-intentioned approach of treating everyone the same, but this can unintentionally overlook the specific needs of LGBTQ+ patients. Common issues identified in the literature included assumptions about sexuality and family relationships, uncertainty around who should be involved in care decisions, limited understanding of transgender patients’ needs and inconsistent recognition of chosen families and next of kin. The review also highlighted a lack of national evidence about LGBTQ+ experiences of palliative and end-of-life care, despite growing recognition of the issue. 

Healthwatch identified several practical improvements that could help make services more inclusive. These included better staff training on LGBTQ+ issues, more inclusive communication, asking about preferred names and pronouns, improving patient forms to capture relevant information, using more inclusive imagery and materials, and encouraging greater use of advance care planning so patients can clearly express their wishes. The review also highlighted the importance of involving local LGBTQ+ organisations in the development of end-of-life services. 

Healthwatch made seven recommendations to University Hospitals Sussex NHS Foundation Trust, including developing LGBTQ+-specific guidance, improving staff training, reviewing patient forms and strengthening engagement with local LGBTQ+ communities. The Trust welcomed the report, agreed that the findings highlighted important issues and committed to further work, including reviewing the experiences of LGBTQ+ patients who had received end-of-life care within local hospitals.