(Merryn writes…) I am fortunate to be a member of the Dying in the Margins project team exploring the impact of deprivation on experiences of dying at home in Scotland. The project is funded by the UK Economic and Social Research Council and is using innovative visual methods to capture the experiences of people with palliative care needs experiencing poverty.
We have just published a new paper from the project – a critical review of literature pertinent to deprivation as a context for palliative and end of life experience. We hope it provides a good foundation for setting a future research direction for deprivation and palliative care – an issue made even more critical by the negative economic impacts of the Covid-19 pandemic upon those already experiencing poverty. The paper is open access and can be downloaded here. The paper follows a similar structure and approach to Gender and palliative care: a call to arms. We hope it will form part of a series which furthers understanding, and supports future research, exploring the social determinants of end of life experience.
You can keep up to date with the Dying in the Margins project via Twitter and our blog. We’ve recently welcomed Dr Sam Quinn as a new Research Associate for the project. We’ve also been enjoying some of the images taken by our participants and our award winning photographic artist collaborator Margaret Mitchell. We can’t wait to share them via a series of exhibitions towards the end of the project.
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.