12 - End-of-life care needs and considerations for older trans people

Summary

Introduction

In the UK and around the world, there are likely to be increasing numbers of trans people who will need care in late age and at the end of life, yet there is a paucity of research which addresses their specific needs and concerns. This is important, given some evidence which has found trans older adults are likely to have significantly poorer physical health, higher rates of disability and depressive symptomatology and greater perceived stress than the cisgender LGB older adult participants (Fredriksen- Goldsen et al, 2014; Reisner et al, 2016). Witten (2016) has written extensively on transgender ageing and reports on the invisibility and family isolation that trans older adults may face. Such factors can impact on life expectancy, and there are many nuanced considerations for trans older people at the end of life that we will address in this commentary, drawing on existing research and illustrated by quotes taken from our own studies. We report on research that has addressed the needs and concerns of trans people within the broader field of the end- of- life care for LGBT+ people as well as more recent work specifically focused on trans end- of- life care, and we conclude with some recommendations for future research.

Trans end- of- life care

Trans people are not routinely included in health service demographics, and as such it is very hard to be precise about the number of people from the trans and gender diverse community that will need end- of- life care. According to the 2021 UK census estimated that there were around 262,000 people openly willing to state that they had a gender identity different from their sex assigned at birth. The National Palliative and End of Life Care Partnership (2021) define end- of- life care as patients who are likely to die within the next 12 months (although in practice, end- of- life care is often delivered in the last weeks of life). The Partnership draws on the World Health Organization definition of palliative care as ‘an approach that improves the quality of life of patients and their families who are facing problems associated with life- threatening illness’ (2021, p 38).