RESEARCH HIGHLIGHT | Dying in the Margins

Published: 27 November 2023

'Dying in the Margins' is a 4-year research project funded by the UKRI Economic and Social Research Council that uncovers the reasons for unequal access to home dying for people experiencing poverty in the UK.

Dying in the Margins

This 4 year (2019-2023) research project, lead by Dr Naomi Richards, in partnership with Marie Curie and funded by the UKRI Economic and Social Research Council, aimed to examine experiences of home dying for people experiencing financial hardship and deprivation in the UK.

There is consistent evidence that most people would prefer to die at home and that this is seen as a cultural marker of a 'good death'. Whilst there has been recent success in some countries, including the UK, in reducing hospital deaths and increasing deaths at home, these gains have not benefited everyone.
 
Notably, people from more socio-economically deprived areas in the UK have been shown to be less likely to die at home, and more likely to die in hospital, when compared to patients from higher socio-economic areas. 
 
Even during the Covid-19 pandemic, when home dying increased dramatically in the UK, there was still a significant disparity for people living in more and less deprived areas. 
 
The Dying in the Margins study is the first study of its kind in the UK to use visual methods to explore and evidence the barriers to home dying for people struggling to make ends meet. People with lived experience of financial hardship and serious advanced illness were supported to take images that tell their story of dying at home in Scotland. In addition, award-winning Scottish photographer Margaret Mitchell was commissioned to create a body of work reflecting on participants stories and emotions.
 
The project generated imagery of end of life experience seldom seen or considered by society at large. The series of exhibitions held in 2023 were designed to inform the public conversation around improving the end of life care for those living with poverty and structural disadvantage. Exhibition viewers were asked the question: What could be designed or distributed differently to ease people's distress in the final months of their lives?

Dying in the Margins & Marie Curie Joint Briefing

 Project Highlights

 'Dying in the Margins' at Holyrood

Scottish Parliament recently welcomed the University of Glasgow and Marie Curie research project, Dying in the Margins. The Cost of Dying photography exhibition taken from the project was on display for Scottish Parliament the week of 13 November 2023.  On 16 November 2023, the findings from the study were debated in Parliament at Holyrood. The video can be found here.

MSP Briefing for Parliamentary Members Business Debate

Cost of Dying Exhibition

Data collection for the study commenced in 2021. Since then, the project has generated imagery of end of life experiences seldom seen or considered by society at large. This work has now culminated in a public exhibition: The Cost of Dying.  The exhibition brings together photographs taken by Margaret Mitchell, participants' own images, and digital stories. The exhibition is designed to inform the public conversation around improving the end of life care for those living with poverty and structural disadvantage.  https://www.youtube.com/watch?v=_rBgry9TsQo https://www.youtube.com/watch?v=th4_VwlpNy8

Cost of Dying Exhibition Brochure

 Money Matters at the End of Life

Throughout our study, we observed that there can be discomfort and uncertainty among professionals about how to communicate effectively with people who are facing material or financial difficulties at the end of life.  To aid conversations and to support professionals working with people at end of life, we have developed a free resource called Money Matters at the End of Life: Having Open Conversations about Financial Hardship at the End of Life. The new Money Matters at End of Life guide provides practical tips and guidance for health and social care professionals on how to initiate and conduct conversations about poverty and hardship with people who are terminally ill or bereaved, as well as signposting to relevant sources of information and support.

Money Matters at the End of Life Resource

 

First published: 27 November 2023

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'Dying in the Margins'

Glasgow End of Life Studies Group

UKRI Economic and Social Research Council

Marie Curie Scotland