The Cost of Dying Crisis: a society in which dying well is something people can’t afford

New research (i) from Sue Ryder, the national healthcare charity which supports people at the end of life, has found the devastating impact the cost-of-living crisis is having on people with a terminal illness and their families.

Over four fifths (81%) of people receiving end-of-life care have been unable to run essential medical equipment due to high energy costs.

The impact of this on these patients, has led to them:

• needing emergency healthcare assistance (44%)
• poor pain and symptom management (36%)
• a negative impact to their wellbeing (32%).

When receiving end-of-life care, medical appointments are imperative to ensure people have their pain and symptoms controlled as much as possible, medication reviews and access to important services such a physiotherapy and occupational therapy. 

Yet, 91% of people at the end of life have been unable to attend medical or day centre appointments due to:

• The increased cost-of-living, citing concerns about the costs of prescriptions that may result from visits (40%) (ii).
• Friends and family being unable to take them as they need to work (36%).
• Not being able to take the time off work (31%).
• Being unable to afford the travel costs (23%).

The impact of these patients not being able to attend essential medical appointments means increased visits from healthcare professionals (39%), poor pain and symptom management (34%) and needing emergency healthcare assistance (32%).

In the immediate term, all households including a person living with a terminal illness and on a low income should be automatically eligible for the Warm Home Discount scheme. Sue Ryder is also urging the government to introduce a social tariff for energy prices for households including a person with a terminal illness and those who are most vulnerable.

Paul Perkins, Chief Medical Director and Consultant in Palliative Medicine at Sue Ryder, said:

“We have found ourselves living in a society in which dying well is something people can't afford

“Sue Ryder's expert medical teams provide specialist pain and symptom management to people with a life-threatening illness.”

“When someone is living with a terminal illness, their household income is reduced because, quite simply, they become too unwell to work. Making difficult choices about whether to keep warm, turn their oxygen machine on, whether they can afford to go to the doctor or if they can afford their medication is heartbreaking.

“The government can change this. By making people living with a terminal illness automatically eligible for Warm Home Discount, and by introducing a social tariff which offers discounted energy rates to include people with a terminal illness, they could lessen the burden on these households. 

“This would mean that fewer people are forced to go without medical equipment they rely on, which in turn could help decrease the need for emergency hospital admissions, relieving the ever-growing pressure on the NHS over the winter months.”

A patient receiving support from Sue Ryder, said:

“I would have major problems if I didn’t live in my mum’s house. I earned a good wage when I was working, I was good at my job. I just physically can’t work anymore but if I could, I’d love to.

“I get everything I’m entitled to, but I would say that even getting the benefits you are entitled to as a stage four cancer patient, is very hard. I have seen other people in my support group struggle to get benefits, and it can depend on where you live and who you have to help you with the application.” 

“I know people who are self-employed who are having to keep working because they have no other option.

“In our house we pool together all of our resources, and if we didn’t do that we would struggle. I was awarded a £150 warm energy discount for my energy supplier, but because I am not the named person for the bills, I am unable to accept it. This will affect others who are eligible, but who are not the bill payer.

“We prioritise being able to have the heating on in the winter and we are careful not to have any food waste. We have also noticed the rising fuel costs because we live in a rural area, and we only have one petrol station which is quite expensive. I’m really lucky that I’m not backwards and forwards to the hospital at the moment. Fortunately, I can have most of my treatment locally so I’m mostly able to avoid the fuel and parking costs of hospital appointments.”

(i) – Sue Ryder research which took place in May 2023, where Censuswide polled 201 people aged 18+ who are receiving palliative and end-of-life care in the UK
(ii) – Currently in the UK, prescriptions are only free for specific conditions and not for all people receiving end-of-life care. Who can get free prescriptions - NHS