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

Webb, W.A. (2019) Life’s hard and then you die: Exploring the end of life priorities of people experiencing homelessness in the United Kingdom. PhD thesis, University of Worcester.

Text (PhD Thesis) Dr Wendy Ann Webb PhD Thesis_.pdf - Submitted Version Restricted to Repository staff only Download (16MB)

Abstract

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.

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