“Mum knew she was going to die, but she also didn't have any money to pay for anything”

The exhibition marked the culmination of a four-year research project, Dying in the Margins, led by the University of Glasgow in partnership with Marie Curie. Researchers used various visual storytelling methods to understand and explore how financial hardship affected how people were able to live their final weeks.

Alongside Margaret Mitchell's photographs, participants were asked to create 'photovoice' images, where they took their own photos of the moments, people, and objects important to them. They then discussed the images with researchers, to help identify what mattered most to them in their day-to-day experiences.

One story from the project is Linda's. Her daughter, Nicola, told researchers how her mum's financial situation affected her experiences at the end of her life, from seeking a diagnosis to being unable to die at home.

"There was no income when she was diagnosed. It was difficult for us to manage"

"As soon as she told me, I rushed home," explains Nicola. Linda had been diagnosed with advanced breast cancer that had spread to her spine.

She had first noticed symptoms in March 2019, but put off seeing a doctor to avoid losing income. "Because she didn't want to take time off work and lose any money, she continued to manage the pain."

When Linda was later diagnosed and the pain forced her to stop working, her financial circumstances impacted her situation again. "Mum knew that she was going to die, but she also knew that she didn't have any money to pay for anything – including her funeral," says Nicola. "Because she didn't have a financial safety net, there was no income when she was diagnosed."

"She wasn't able to die at home with what we were offered"

After Linda had been admitted to hospital, Nicola would drive to Scotland with her children while her husband kept working. But "the cost of the travel, flights and looking after my mum in the hospital was huge."

Linda wanted to be cared for in her own home, something which could offer huge comfort for her in her final weeks. But her housing situation made that impossible. "Mum lived on the 14th floor of a tower block. The lift only went to the 13th. Moving back home with all the equipment she would have needed would have been practically impossible."

"The space would have been too small for me, Mum and three children. And we couldn't afford childcare to allow me to focus on caring for her."

Ultimately Linda was transferred to a hospice, where she died. "But I know she would have wanted to be at home," says Nicola. "I just couldn't do that for her with what we were offered."

The Cost of Dying

The research found that poverty affected people's experiences in many ways, from struggling with the cost of travel for medical care and managing utility bills due to spending more time at home, to challenges securing benefits.

Photographer Margaret Mitchell said: "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. I hope that my images convey a small insight into part of their story."

Dr Naomi Richards, Principal Investigator for the project, explained that those who had struggled financially for some time and those who had just about managed previously were, "weighed down by the heavy financial costs of dying. 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."

"For people on low incomes, terminal illness plunged them further into hardship"

The project wrapped up with the groundbreaking The Cost of Dying exhibition, which aimed to show the reality for many people who are facing terminal illness and, on top of that, the constraints of poverty.

Emma Carduff, Head of Research and Innovation, Scotland, at Marie Curie, said: "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."

The Cost of Dying exhibition ran from 25 April to 5 May at the Advanced Research Centre in the University of Glasgow. You can find out more on the Dying in the Margins research page   or watch Linda's digital story   on YouTube.

Marie Curie wants to make sure no one dies in poverty. You can sign up for campaign updates as we call for better financial support for people with a terminal illness.

If you or someone you know is terminally ill and facing financial hardship, we have information on the benefits and finances you might be entitled to.

Dying in the Margins was funded by the Economic and Social Research Council, grant number ES/S014373/1.