In March 2024, the summative findings paper for the ESRC-funded ‘Dying in the Margins’ study was published in Social Science & Medicine – Qualitative Research in Health. Our visual methods study shed light on the challenges of home dying in the context of financial hardship and deprivation in the UK. Utilising photovoice, professional documentary photography and digital storytelling, we highlighted barriers to, and experiences of, home dying, revealing the high costs and oppressive environments that undermine the quality of end-of-life care at home.
From April 2021 to March 2023, we worked with 12 participants to explore the challenges and experiences of dying at home for those facing financial hardship. Study findings revealed significant issues such as heating costs, inadequate housing, and the essential need for personal space and autonomy. Our research further uncovered that both individuals at the end of life and their carers face profound challenges due to unresponsive healthcare, housing, and welfare systems. These systems often fail to support a dignified home-dying experience, leading to considerable distress for our participants. This distress was compounded by factors like insufficient income, housing and neighbourhood problems, the stigmatising effects of poverty, and a lack of recognition from state officials. Despite these hurdles, our findings highlight that dying at home remained a preferred option for some, closely tied to their sense of identity and autonomy. However, for those struggling financially, it is not always a feasible choice.
Both the Cost of Dying Exhibition and the associated publications have initiated important conversations with politicians, policymakers and healthcare professionals. The study gained significant attention in the Scottish Parliament in November 2023, engaging over 40 Members of the Scottish Parliament (MSPs), including the First Minister and Scottish Government Ministers. This exposure and a subsequent parliamentary debate underscored the need for systemic change to better support individuals dying in the context of financial hardship. Over 50 of the 129 MSPs in the Scottish Parliament have engaged with the study, showing a strong commitment to addressing this critical social justice issue.
Our findings have also influenced the Scottish Government’s updated guidance on Benefits Assessment under Special Rules in Scotland (BASRiS) and have been integrated into broader discussions about equity-informed palliative care. This includes the development of trauma-informed care, aligning with the study’s recommendations.
Building on the study, Marie Curie Scotland has launched a push for legislative changes to guarantee everyone the right to necessary palliative care. The opportunity to respond to the consultation for the Right to Palliative Care Bill will be available until 4 June 2024.
Ellie Wagstaff, Senior Policy Manager at Marie Curie, has described the Dying in the Margins study as a “golden thread” running through the charity’s work on dying in poverty. The Dying in the Margins study underscores the urgent need for integrated healthcare, housing, and welfare interventions to support dignified home-dying experiences for those experiencing financial hardship and deprivation.