Dying in the Margins: Terminally ill Scots need better care

In Scotland, terminally ill patients are struggling to access essential resources, such as transportation, pension funds, and life-extending equipment.

A group of researchers from the University of Glasgow and Marie Curie Scotland are highlighting the struggles of impoverished Scots in end-of-life care.

Through in-depth interviews with patients and an illuminating photo series by photographer Margaret Mitchell, the Dying in the Margins project presents stories that go untold because the central characters often aren’t with us long enough to be heard.

After multiple showings in Glasgow, the project’s photo exhibition has moved to Edinburgh this week and campaigners are pushing the Scottish Parliament to legislate support for terminally ill Scots.

The exhibition comes off the back of over four years spent with end-of-life patients across Scotland.

Principal investigator and director of the End of Life Studies Group at Glasgow University Dr Naomi Richards said the project affected the lives of everyone involved.

“It was a privilege to be let into people’s lives in this way.

“When you start to see the images of what’s going on in their lives, you get a real sense of responsibility to hold their stories and fairly represent them.”

Now that the stories have been told, Dr Richards said it’s time to take action. 

One only needs to spend a few minutes with the Cost of Dying Exhibition to understand the challenges terminally ill patients are facing. Many of the participants were driven by a desire to spend their last days at home, but their stories constantly bombard viewers with the obstacles in their path.

Take, for instance, Liz.

Liz’s flat wasn’t much to look at.

Mould marred one corner of her bedroom, with water damage so severe it was visible from the street.

The rest of the flat might have seemed cluttered to an outsider, but for Liz, it was full of the things that gave her comfort. She was especially attached to her eclectic wardrobe, an array of creative ensembles that made her recognisable to many on the streets of Glasgow.

Liz's flat was full of things that made her feel at home. But structurally, it wasn't always a safe space. (Image: Margaret Mitchell)

Liz died of lung cancer, and in her last few months, she spent much of her time battling over housing conditions.

With little time to live, Liz didn’t want to move. She wanted to be at home, and she wanted that home to be safe.

But this eventually put too much strain on her. The care package she was offered initially allowed in-home visits twice a day. This dropped to one half-hour visit per day.

In the end, it wasn’t enough support. When a hospice bed became available, Liz took it.

Although full of frustration and unfairness, Liz’s story was not unique.

Margaret battled cancer at the end of her life, but she also fought against concerns that she could not leave her daughter financially secure.

Having worked since she was 16, Margaret made sure she received every available benefit.

But having worked so hard throughout her life, her cancer meant she wouldn’t be able to access her old-age pension.

Dr Sam Quinn, a Glasgow research associate, spent months in direct contact with Liz and the other participants.

“I’m very appreciative of every single participant who had the bravery to tell their story.

“I ask myself if I’ve done my best to make the most of their stories.

“And I think – I hope – that we’ve done them justice.”

He found that the challenges patients faced were so ubiquitous that they were almost predictable.

Patients had difficulty accessing or paying for transportation – sometimes worsened by wheelchairs or other mobility supports – to attend medical appointments. Money spent on taxis ate into money set aside for rent and utilities, which was itself dwindling as aggressive medical conditions made work impossible.

Those who rented their homes struggled with landlords and housing associations to keep homes up to standard, or move to somewhere more suitable.

There were also problems gaining access to resources and services that are meant to support people in old age or ill health. 

You need time to turn the wheels of bureaucracy.

But for terminally ill patients, time is a precious resource.

Dr Emma Carduff, head of research and innovation with Marie Curie Scotland, feels it is imperative now to build on the project’s findings.

She pointed to Stacey, another participant, who spent hours battling her housing provider and lobbying MSPs in pursuit of a more suitable place to live.

By the time she was finally successful, her condition had deteriorated. She only had a brief stent in her new home before being hospitalised for the final time.

“Every single minute counts for people at the end of their lives,” Dr Carduff said.

“Stacey spent so many hours advocating and lobbying for herself, sending emails and sending messages, trying to sort out her hosting issues. She could have been doing other things, spending meaningful time with her family.”

Space was a premium for Stacey, her partner and her mum as they battled with housing providers for a new flat. (Image: Margaret Mitchell)

Researchers estimate that by 2040, up to 10,000 more people will be dying with end-of-life support needs in Scotland.

This is why the Dying in the Margins exhibition has come to Edinburgh, where it has been available for MSPs to view ahead of a members’ discussion of the issues on Thursday.

While they have the attention of policymakers, Dr Richards, Dr Carduff and their teams will press for action on a nationwide commitment to financial support for terminally ill people and their families who are experiencing poverty.

They are pushing for the Scottish Government’s new housing standards to strengthen the rights of terminally ill patients, and for local governments to commit to fast-tracking essential services for terminally ill people, as well as extending the eviction period for bereaved co-inhabitants.

Dr Carduff said these asks are manageable and hopes MSPs take notice.

“These are what I would call tangible asks, and they are doable. We’re not talking about huge numbers of people.

“It isn’t massive compared to other areas of government spending, but it could make such a difference to this group of people.”