An exhibition that shares research findings on experiences of dying at home for people facing financial hardship and deprivation in Scotland is on display at the University of Glasgow.

‘The Cost of Dying’ public exhibition is based on a four-year study led by researchers at the University of Glasgow's School of Interdisciplinary Studies, with support from Marie Curie. The ‘Dying in the Margins’ study was funded by the Economic and Social Research Council (ESRC), part of UKRI (UK Research and Innovation).

The exhibition is open to the public until 5 May, 2023.

By 2040, up to 10,000 more people will be dying with end-of-life support needs in Scotland, and at least two-thirds will be dying in community settings such as care homes and hospices.

This longitudinal study used participatory visual methods, specifically photovoice and digital storytelling, to enable participants to tell their own story in their own words and images. It is the first time an exhibition on this particular subject has been displayed in the UK.

In addition, award-winning Scottish documentary photographer Margaret Mitchell was commissioned to create a body of work reflecting on participants’ stories and emotions.

Margaret Mitchell said: “The individual, their situation and their experiences lie at the heart of my long-term photographic work. During this project, over the visits and hours we spent together, some people reflected on their connections and reconnections with family and friends. Others’ thoughts were on their isolation, or sorrow, or difficulties. Each person and their situation touched me deeply and I hope that my images convey a small insight into part of their story. It has been the utmost privilege to have been invited into people’s lives, to spend time with them and I am deeply grateful to all I have met and photographed, for the hours shared, and the stories recounted.”

Dr Naomi Richards is Senior Lecturer in Social Science, Director of the End of Life Studies Group at the University of Glasgow and Principal Investigator on the Dying in the Margins study. She said: “Dying in the Margins has given people with direct experience of poverty the means to show, on their own terms, gaps in current support and potential strategies to improve their end-of-life experiences. Our work has generated imagery designed to inform the public conversation around end-of-life care improvement specifically for people experiencing poverty and marginalisation. There is considerable evidence supporting the value of images in knowledge translation and impact generation.

“There are currently no images in UK contemporary palliative care policy and literature, and therefore arguably the public imagination, which speak to the experience of dying in circumstances of socio-economic hardship. Our exhibition is designed to inform the public conversation around improving the end-of-life care for those living with poverty and structural disadvantage."

Dr Emma Carduff, Head of Research and Innovation, Marie Curie Scotland, said: “Financial hardship should never be a barrier to accessing compassionate end of life care and a dignified end of life experience. The majority of stories and images included in this exhibition feature people supported by Marie Curie and highlight the systemic issues faced by those who live in poverty. This exhibition, which is the first of its kind, aims to bring these issues to the fore, challenge assumptions and promote action.

“Sadly, at Marie Curie Scotland, we know that living in socio-economically deprived areas worsens health outcomes for terminally ill people. This is often because of longstanding health inequalities and inequities around access to palliative care support, which was exacerbated during the pandemic when health and social care services were overwhelmed. But worryingly, we also now know that terminal illness is pushing people into poverty and state support is currently insufficient.

“The Scottish Government’s upcoming palliative care strategy is a crucial opportunity to support the entirety of a person’s end of life experience. Palliative care is at the heart of this, but the government must address overlapping end-of-life issues simultaneously, all of which have been more acute over the past three years.”

As people view the exhibition, they will be asked to think about what the NHS, housing associations, social work, and the third sector, as well as communities in general, should and could offer people who perhaps haven’t had the best chances in life.

First published: 24 April 2023

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