Rethinking End-of-Life Support
A new social policy for the end of life? What if we could - in ways that we currently don’t - provide state support for people at the end of life, when they need it most?
I don’t like winter. There: I’ve said it. The clocks have now gone back, the days are shorter, colder and wetter. When I’m out walking the dog - in howling wind and rain - I often console myself with the knowledge that, before we know it, spring and the longer, warmer days, will be here again.
But what if - like for many people facing a terminal condition - that was our last summer? That itself is hard enough: making the psycho-social transition to knowing that we are dying and do not have much time left - to plan for the future or spend the time we have left with the people we care about most.
Bucket lists are often talked about by people who are dying. But for a growing number of terminally ill people in the UK, the added worry of dying in poverty means that bucket lists are the last thing on their minds. More than 300 people currently die in poverty in the UK everyday, according to the end of life charity, Marie Curie, meaning that we are facing a cost of dying crisis that both parallels and is exacerbated by the ongoing cost of living crisis.
Dying in poverty: The cost of dying
While we have heard much in recent years about a cost of living crisis, much less is said about the financial burden felt by people at the end of life. This is felt most acutely by people of working age who - if they are unable to work - face a loss of earnings, but are, at the same time, unable to draw up their state pension because they have not yet reached pension age.
For many people who are dying, there are also other additional costs that come with terminal illness. They may, for example, simply be home more often, and therefore incur more domestic energy costs than they would if they were at work. They may also use more domestic energy as a result of powering life sustaining equipment. One effect of chemotherapy treatment for cancer is that it leaves recipients feeling cold, meaning they may require extra home heating.
There are other costs too. These include the costs of extra medical equipment, the costs of - self-funded - social care, and the additional costs of travel for medical appointments, which may not be possible by public transport but may require a taxi due to the nature of a life-limiting condition. All of this at a time in the UK when we have seen sharp increases in the price of domestic energy, and rising costs of goods and services due to inflation.
A fragile safety net
While there is extra help available for people who are terminally ill, this is often difficult to access, limited by having to prove that a person has less than one year to live. Applying for benefits is also a heavily bureaucratic and administrative process, made even more difficult when one’s personal resources are depleted by a life-limiting condition. Charities like Macmillan Cancer Support, Marie Curie, and many local hospices provide specialist advice on what benefits are available to people and how to access them.
It may seem odd that in a modern, democratic society like the UK, with a comprehensive and universal system of healthcare, that it is left to charities and hospices to provide such support to people at the end of life (especially when hospices themselves only receive about a third of their funding from central government, the rest coming from donations and lottery funding). If support really is intended to be from “the cradle to the grave”, as famously promised in the founding of the NHS, then easier, more accessible support for those at the end of life needs to be an urgent priority.
Early access to the state pension is the single biggest thing the government could do to ease the financial burden on people of working age who are dying. While this would not solve the current cost of dying crisis, it would at least provide some immediate relief for people at the end of life. This is very clearly something the UK Pensions Commission could consider as part of their ongoing review into eligibility criteria around the state pension.
What can you do?
There are a number of things we can all do to help in lobbying for legislative change to alleviate the cost of dying crisis. One of these is to sign the cost of dying online petition created by the end of life charity, Marie Curie. This calls on the UK Government to ensure that all people living with a terminal illness have enough income to live comfortably until the end of their life, irrespective of what benefits they may receive; and to introduce a social tariff on energy to protect people at the end of life from spiralling energy bills.
You can also spread the word by sharing information about the cost of dying crisis in your social networks, and by writing to your local MP to ask them to lobby to ensure that no one at the end of life risks dying in poverty.
None of this will solve the cost of dying crisis in a single stroke. Clearly, we need much more comprehensive reform of our welfare system for people at the end of life, so that benefits are more generous and easier to access. But these measures are at least for now a way of getting the cost of dying crisis into public consciousness and onto policy-makers’ radar.
Find out more
You can find out more about the cost of dying crisis on the Marie Curie website, which includes links to various research-based reports published in 2024 (PDF) and 2022 (PDF). Further information can also be found on BBC Sounds in the recent BBC Radio 4 programme, Money Box Live: Navigating a Terminal Illness, from 17 September 2025.
Dying in the Margins is a 4-year (2019-2023) ESRC funded, and Marie Curie supported, project by the University of Glasgow which used visual methods to examine both the barriers to, and people’s experiences of, dying at home in financial hardship. The project enlisted the work of photographic artist, Margaret Mitchell, who developed her body of work, As the Day Closes, while working on the research study. See more at: https://margaretmitchell.co.uk/asthedaycloses
