Life’s hard and then you die: Exploring the end of life priorities of people experiencing homelessness in the United Kingdom

Background People experiencing homelessness consistently fail to access palliative care services (Care Quality Commission, 2017). They often die young, on the streets or in hostels, and without adequate support. The average age of death for a person experiencing homelessness is 47 years for a male and 43 years for a female. However, despite homelessness increasing in the United Kingdom, research specifically concerned with end of life care for this population has not yet been prioritised. Furthermore, while there is ample literature surrounding the barriers to appropriate end of life care (Klop et al., 2018), the end of life priorities of homeless people in the United Kingdom remain poorly understood (Care Quality Commission, 2017) This study aims to bridge the gap in knowledge. The Research Question The central question for this research is: ‘What matters most to people experiencing homelessness in the United Kingdom as they consider their own end of life?’. When the answers to this important question are understood, the issue of homeless people dying without adequate support and with very little dignity or choice can begin to be addressed. Aim of study The aim of this interpretive phenomenological study is to explore the end of life concerns, fears, preferences and priorities of a sample of people experiencing homelessness in the United Kingdom. Methodology This qualitative PhD research is an interpretive phenomenological study underpinned by the philosophy of French phenomenologist, Maurice Merleau-Ponty. Data have been collected through semi-structured, audio-recorded, face-to-face interviews with 21 participants across several counties in the United Kingdom. Data have been analysed iteratively using thematic analysis. Findings Findings have been presented within the following eight themes to tell the stories of participants’ concerns, fears, preferences and priorities regarding end of life: spiritual concerns; practical concerns; fear of needing care; fear of being forgotten; preference for dying suddenly; preference for being somewhere comfortable where people know me; prioritising autonomy and self-determination; and prioritising authenticity. Discussion Findings have then been viewed through the lens of Merleau-Ponty’s philosophy using the following six dimensions of his philosophy: perception and embodiment; temporality and perspective; ambiguity and mystery; intentionality and relationality; situated freedom; and childhood experiences. Implications for future policy and practice have been outlined and a strengths-based, trauma-informed, person-centred, collaborative ‘compassionate community’ approach to care has been recommended. Conclusion Discussion of the findings exposed four key messages: the pauper’s funeral is a real but previously unreported concern for homeless people in the United Kingdom; the ‘face of care’ is more important than the ‘place of care’; traditional palliative care services are possibly an unattractive resource for this population so new approaches to care are required; and a strengths-based, trauma-informed, person-centred, collaborative, ‘compassionate community’ approach to care is recommended. This is where the hostel is established as the hub of a compassionate palliative care community within a local neighbourhood and where the development of peer support workers, with lived experience of homelessness, is actively encouraged and supported