Social Justice

The devastating impact the cost of living crisis is having on the cost of dying

A photo exhibition puts the focus on people needing end-of-life support in Scotland while faced with increasing financial hardship

An image from The Cost of Dying exhibition by Margaret Mitchell

An image from The Cost of Dying exhibition by Margaret Mitchell

The cost of living crisis is dominating many of our lives and a lot of public discourse, but what about the cost of dying?

Researchers at the University of Glasgow have conducted a four-year study involving people in Scotland who have terminal illnesses and are experiencing financial problems.

The Dying in the Margins study took place over four years, with funding from the Economic and Social Research Council (ESRC) and the UK Research and Innovation (UKRI).

Dr Naomi Richards, Senior Lecturer in Social Science, Director of the End-of-Life Studies Group at the University of Glasgow, and Principal Investigator on the study, said: “Our findings show that study participants were weighed down by the heavy financial costs of dying. Some also lacked a material environment or a care package conducive to a dignified end-of-life experience.

“For those who had struggled on a low income their entire lives, terminal illness only plunged them further into hardship. For others just about getting by, terminal illness brought new and unanticipated hardship and precarity.

“While the state offers a partial safety net in such cases, there are questions over whether this is sufficient to meet the needs for a comfortable end of life.”

One participant of the research, Amandeep, aged 22, has lived with Duchenne muscular dystrophy for most of his life. He wants to stay at his house and be cared for there, but it is costing upwards of £400 a month to run all his machines.

Another participant, Marie, 46, said that for her, the biggest expense is a taxi to and from her hospital appointments. She is unable to take public transport so taxis cost her £100 per week.

The stories of these people were highlighted in The Cost of Dying exhibition at Glasgow University, with support from Marie Curie.

Max with his dog Lily from The Cost of Dying exhibition by Margaret Mitchell
Max with his dog Lily from The Cost of Dying exhibition by Margaret Mitchell

Eight people were visited by award-winning professional Scottish photographer Margaret Mitchell, as part of research to find out more about how people with a poorer background are dealing with the cost of end-of-life care.

She 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.”

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The photographs are moving and heart wrenching. The subjects tell their own story in their own words. Looking at and reading each participant’s story evokes sadness and disappointment that people experiencing socio-economically deprivation are not able to get the proper end-of-life care that they deserve.

Dr Emma Carduff, Head of Research and Innovation, Marie Curie Scotland, said:

“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.”­

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