The impact of poverty and deprivation at the end of life: a critical review

Abstract

This critical review interrogates what we know about how poverty and deprivation impact people at the end of life and what more we need to uncover. While we know that people in economically resource-rich countries who experience poverty and deprivation over the life course are likely to die younger, with increased co-morbidities, palliative care researchers are beginning to establish a full picture of the disproportionate impact of poverty on how, when and where we die. This is something the Covid-19 pandemic has further illustrated. Our article uses a critical social science lens to investigate an eclectic range of literature addressing health inequities and is focused on poverty and deprivation at the end of life. Our aim was to see if we could shed new light on the myriad ways in which experiences of poverty shape the end of people’s lives. We start by exploring the definitions and language of poverty while acknowledging the multiple intersecting identities that produce privilege. We then discuss poverty and deprivation as a context for the nature of palliative care need and overall end-of-life circumstances. In particular, we explore: total pain; choice at the end of life; access to palliative care; and family caregiving. Overall, we argue that in addressing the effects of poverty and deprivation on end-of-life experiences, there is a need to recognise not just socio-economic injustice but also cultural and symbolic injustice. Too often, a deficit-based approach is adopted which both ‘Others’ those living with poverty and renders invisible the strategies and resilience they develop to support themselves, their families and communities. We conclude with some recommendations for future research, highlighting in particular the need to amplify the voices of people with lived experience of poverty regarding palliative and end-of-life care.

The equity turn in palliative and end of life care research: Lessons from the poverty literature

“…Both critical palliative care and death studies scholars, then, have identified an invisible privilege which underpins research in this area, in terms of both the typical palliative care patient and the typical death studies scholar. This speaks to a need, identified in the more recent equity‐driven agenda, to become more reflexive in terms of ‘othering’ practices, the cultural appropriateness of palliative care, and in thinking about who is setting the research agenda (Anderson & Devitt, 2004; Rowley et al., 2021; Stajduhar, 2019). This includes acknowledgement that palliative and end of life care researchers are disproportionately white and from high‐income countries (Hussain et al., 2021; Seale, 2010).…”

“…Participatory and action research methods in particular are approaches from within critical social science which can have a role in using collectively produced knowledge to help develop critical consciousness in marginalised groups (Greenhalgh, 2018). Colleagues and I have made a plea for more participatory, qualitative research into experiences of poverty and deprivation specifically at end of life (Rowley et al., 2021). My point here is that whatever new research is carried out needs to be embedded in prior learning within the critical poverty literature, which underwent its ‘participatory turn’ some decades ago and has allowed time for debates about the politics of representation to mature through layered critique.…”

“…death and dying, end of life, inequality, palliative care, poverty, social determinants of health involves paying attention to all the ways in which people's access to or experience of end of life care is impacted in avoidable, unfair and unjust ways as a result of colonialism, racism, sexism, homophobia, ableism, all of which intersect with poverty and deprivation (Rowley et al, 2021). A recent intersectional analysis of policy initiatives to encourage home dying in British Columbia, Canada, for example, revealed that home is a highly contested site for palliative care with the house/home/family often conflated and policies 'based on an ideologically laden perspective where families are seen as white, middleclass, heterosexual and nuclear' (Hankivsky et al, 2014, p: 8).…”

“…The term ‘equity’ differs from ‘equality’ in that it indicates fair distribution according to need, rather than equal distribution potentially not according to need. According to the World Health Organization (2008), equity is a concept ‘based on the human‐rights principles of social justice and fairness … and addresses the unfair and avoidable differences among social groups with an aim of achieving more equal outcomes.’ The equity turn in palliative and end of life care involves paying attention to all the ways in which people's access to or experience of end of life care is impacted in avoidable, unfair and unjust ways as a result of colonialism, racism, sexism, homophobia, ableism, all of which intersect with poverty and deprivation (Rowley et al., 2021). A recent intersectional analysis of policy initiatives to encourage home dying in British Columbia, Canada, for example, revealed that home is a highly contested site for palliative care with the house/home/family often conflated and policies ‘based on an ideologically laden perspective where families are seen as white, middleclass, heterosexual and nuclear’ (Hankivsky et al., 2014, p: 8).…”

“…For those interested in a longer discussion about the differences between the concepts of poverty and deprivation, please see my other article:Rowley et al, 2021. 5Seale's (2010) study revealed that in the UK, palliative care specialists were somewhat more likely to be Christian, religious and 'white' than other doctors. Given that many palliative care researchers are also involved in clinical work, I have extrapolated from this data that palliative care researchers are also somewhat more likely to be white.6 The most common of these is the 60% of median income.…”