In a new article published in March 2022 as part of our Dying in the Margins study, I examine the recent ‘equity turn’ in palliative care and death studies research[1]. My central argument is that equity-focused research needs to be conceptually and theoretically informed, grounded in work which has a long pedigree in poverty and development studies and indeed in social sciences more broadly. In many ways mine is a claim for what critical social science theorising and thinking can bring to more health-focused research on the end of life[2]. I also argue that researchers need to be committed to remedying the ‘social determinants of dying’ rather than just acknowledging or quantifying them. If we take seriously that inequalities at end of life arise from factors unrelated to the provision of healthcare then we need to critique in a more fundamental way the wider political, institutional, and economic conditions in which 1) healthcare is delivered and 2) poverty comes to exist. In simple terms, I argue that researchers working in the field need not just to ‘wake up’ but also to ‘stand up’ and become more politicised.
There has always been a strong social justice current running through the palliative care field since its early beginnings. Many of the late 19th and early 20th Century ‘proto-hospices’ were for the ‘dying poor’ who were dying of Tuberculosis or cancer[3]. ‘Financial pain’ also featured[4] in early conceptualisations of ‘total pain’. Recently, there have been powerful calls to mainstream equity in palliative and end of life care practice, policy and research[5],[6],[7]. Such a mainstreaming approach would mean that all researchers (and consumers of research) see equity issues as fundamental to all studies, rather than it being a discrete field of interest for a few[8].
In my article, I suggest that the new ‘equity turn’ could do worse than look for inspiration from a clinical field which delivers the bulk of generalist palliative care: primary care. There is research and educational initiatives afoot in this field focused on the social determinants of health which have an unashamedly political edge. In the UK these often refer back to, and take inspiration from, the work of GP and social activist Julian Tudor Hart who coined the term ‘the inverse care law’[9] back in 1971 and wrote various ‘call to arms’ books about the social determinants of health.
I take inspiration from the work of colleagues at the University of Glasgow who lead the Scottish Deep End Project. The Deep End Project undertakes research with and offers support to the GP practices serving the 100 most deprived populations in Scotland. Deep End researchers have explicitly lobbied governments about health damaging austerity measures[11],[12] and been involved in initiatives to widen access to medicine for applicants from more socially diverse and disadvantaged backgrounds. All of which to my mind involves ‘standing up’.
I’m currently leading an in-depth visual methods study called Dying in the Margins in Glasgow and Dumfries & Galloway. We’re examining how financial hardship affects people’s experiences at the end of life, particularly attempts to die at home. Early on in the project we noticed a lot of discomfort amongst healthcare professionals with discussing socio-economic inequalities. There was sensitivity around the languaging of poverty and deprivation which made them uncomfortable about approaching patients about the study. As researchers this immediately drew us into the heart of conceptual debates about ‘what is poverty’ and, just as important, ‘how is it talked about’?
It’s fair to say that before the project started, the research team had more collective knowledge about the sensitivities around discussing dying than discussing financial hardship. As poverty and development scholars are already deeply cognizant of, there is a huge amount of shame in naming poverty (the ‘p’ word as scholar Ruth Lister[13] calls it) and in discussing financial hardship and material need. The multi-dimensional concept of poverty pioneered by the likes of Ruth Lister includes a relational-symbolic dimension. This includes experiences of being stigmatised and of feeling shame as a result. Knowledge and understanding of these dimensions has only been identified and theorised as a result of in-depth qualitative research.
There is so much to learn from other disciplines and bodies of work; to take the time to learn from other scholar’s expertise. I hope this article does its job in championing the learning which can be taken from critical poverty studies and primary care research into end of life research and in calling for both a more consciously theorised and politicised field of research.
[1] Richards, N. 2022. The equity turn in palliative and end of life care research: Lessons from the poverty literature. Sociology Compass. https://doi.org/10.1111/soc4.12969
[2] Greenhalgh, T. (2018). What have the social sciences ever done for equity in health policy and health systems? International
Journal for Equity in Health, 17(1), 124. https://doi.org/10.1186/s12939-018-0842-9
[3] Goldin, G. (1981). A proto-hospice at the turn of the century. St Lukes House, London, from 1892-1923. Journal of the History of Medicine and Allied Sciences, 36(4), 383–415. https://doi/org/10.1093/jhmas/xxxvi.4.383
[4] Mount, B. M., Ajemian, I., & Scott, J. F. (1976). Use of the Brompton mixture in treating the chronic pain of malignant disease. Canadian Medical Association Journal, 115, 122–124.
[5] Marie Curie. 2015. Equity in the Provision of Palliative and End of Life Care in the UK, April 2015. LSE Personal Social Services Research Unit. Available at: https://www.mariecurie.org.uk/globalassets/media/documents/policy/campaigns/a042-equity-in-the-provision-palliative-eol-care-in-uk_v11-copy.pdf
[6] Hussain, J. A., Koffman, J., & Bajwah, S. (2021). Invited editorial: Racism and palliative care. Palliative Medicine, 35(5), 810–813. https://doi.org/10.1177/02692163211012887
[7] Reimer-Kirkham, S., Stajduhar, K., Pauly, B., Giesbrecht, M., Mollison, A., McNeil, R., & Wallace, B. (2016). Death is a social justice issue: Perspectives on equity-informed palliative care. Advances in Nursing Science, 39(4), 293–307. https://doi. org/10.1097/ANS.0000000000000146
[8] Gott, M. 2021. Equity in Palliative Care. Marie Curie Palliative Care Research Department Seminar Series, UCL, June 2021, Available at: https://www.youtube.com/watch?v=P831MHR2liA
[9] Hart, J. T. (1971). The inverse care law. Lancet, 297(7696), 405–412. https://doi.org/10.1016/s0140-6736(71)92410-x
[11] Blane, D., & Watt, G. (2012). Altogether now? Austerity at the deep end. British Journal of General Practice, 62(600), 374–375.
[12] Mercer, S. W., Patterson, J., Robson, J. P., Smith, S. M., Walton, E., & Watt, G. (2021). The inverse care law and the potential
of primary care in deprived areas. The Lancet, 397, 10276–10776. https://doi.org/10.1016/S0140-6736(21)00317-2
[13] Lister, R. (2004). Poverty. Polity Press.