A new commission aims to transform end-of-life care in the UK. But can it really address the alarming shortfalls that leave dying people, their families and the professionals who care for them struggling? Journalist Kaye McIntosh reports.
The poor state of palliative care in the UK (which includes end-of-life care) has been thrown into the spotlight by the ‘assisted dying’ bill, currently going through parliament. The bill applies to England and Wales with a separate one being proposed in Scotland (see What is the assisted dying bill?).
‘Until we can say we are offering patients good palliative care, then we’re not really offering people a choice,’ says Sarah Cox, president of the Association for Palliative Medicine. That partly explains why 80% of her members oppose the bill, says Dr Cox: ‘The need for palliative care is going up exponentially but we’re not even meeting current needs.’
Deaths in England and Wales alone are projected to rise by 27% by 2040, with a 53% increase in deaths of people over the age of 85, associated with more complex needs (Bone et al, 2017).
Dr Cox says: ‘At the moment, only 50% of the people that die get palliative care.’ It’s a horrifying statistic. ‘That’s more than 100,000 people every year not getting the care they need (Parliamentary Office of Science and Technology, 2022).
A POSTCODE LOTTERY
Unfortunately, palliative care is currently blighted by a postcode lottery across the UK. Dr Cox says that’s because palliative care was largely developed by the charity sector. ‘If you had a group of wealthy people who built a hospice locally, then you got a good service. If you didn’t, you don’t, and you may have to travel quite a long way to a local hospice, or there may not be a great hospice.’
Hospice care is generally led by small charities, each with its own approach. ‘The care you get at one [hospice] will not be the same as the care you get in another. Some will have carers they can put in 24 hours a day into somebody’s home, and the next place may not,’ Dr Cox says. ‘It will depend entirely on your postcode.’
GPs are chiefly responsible for people who die at home or in a care home, with palliative care consultants taking on the role for those in hospital. But the shape of services often depends on local history. District and community nurses play a vital role in caring for, or coordinating care for, those dying at home. The health bodies taking overall responsibility for palliative and end-of-life care differ around the UK (see The care promises).
Dr Cox explains: ‘We could not do what we do without them [district and community nurses], but they are completely stretched.’
‘UNTIL WE CAN SAY WE ARE OFFERING PATIENTS GOOD PALLIATIVE CARE, THEN WE’RE NOT REALLY OFFERING PEOPLE A CHOICE’
Community nurses with a list of people to visit with different needs – such as wound care – ‘would really love to devote time to a family where somebody is dying,’ she says. ‘You know you can make a difference, but you just don’t have time to do it. That must feel very difficult.’
Fewer poorer people, or those from Black and minority ethnic backgrounds, receive good quality palliative care, according to Hospice UK (2021). The same is true for homeless people or those with learning disabilities.
IMPACT ON FAMILIES
Getting palliative care right – limiting pain and distress – is vital not only for the dying but for families, too. Rachel Maskell, a Labour MP who set up the Commission on Palliative and End-of-Life Care in 2024, says: ‘We’ve heard so many stories of poor care, and that is not acceptable, for not only the patient themselves, but also their family.
‘It’s part of the grieving process as well. When people witness a painful, traumatic death of a loved one that never leaves you.’ There can be long-term mental health effects.
Janet Taylor, the CPHVA Executive chair, says that’s a key issue for community practitioners. ‘You aren’t just looking after the patient but their caregivers as well.’
And also children – parents may not have said anything to their children about relatives dying, but nurses and health visitors can ‘encourage age-appropriate honesty’ and difficult conversations. Health visitors can also help to signpost people. Janet says: ‘It’s about support, it’s about information, it’s about supporting each person wherever they are in their journey.’
‘WE’RE TALKING ABOUT BETTER CARE, WE’RE TALKING ABOUT PLANNED CARE AND WE’RE TALKING ABOUT MEETING THE PATIENT’S ASPIRATIONS ABOUT HOW THEY WANT TO DIE’
MP Rachel, a physiotherapist before entering parliament, says the commission wants every dying person to get high-quality medical and emotional support from the moment they are diagnosed with a terminal condition.
The evidence sessions are ongoing – the deadline for written submissions is 28 March – so detailed recommendations on how this would work across the UK are not yet available, Rachel explains.
But the terms of reference shared by Rachel, suggest health professionals would draw up a care plan ‘which is patient-led with support for physical, psychological, emotional, social, and spiritual wellbeing’.
The vision is for ‘care coordinated at a personal and systemic level, meeting people’s wider needs and supporting caregivers of all ages, including with bereavement’.
The terms of reference recommend that single points of access should be available in the community 24 hours a day, Rachel shares. Virtual wards and emergency services able to plug people into the right support could be part of the picture.
The minister for care Stephen Kinnock said in a House of Commons debate in January that the government will ‘monitor the findings of that commission very closely’. And that it would set out ‘funding allocation and distribution mechanisms’ in the coming weeks (Hansard, 2025).
THE CARE PROMISES |
WALES – A VISION OF QUALITY The National Palliative and End-of-Life Care Programme aims to deliver the Welsh Government’s quality statement on palliative and end-of-life care, overseeing the work of health boards (NHS Wales, 2025). The vision is to ‘provide palliative and end-of-life care in Wales for all who need it, at home when appropriate, determined by what matters to the person and underpinned by what works’. The Commission on Palliative and End-of-Life Care will make recommendations for Wales as well as the other UK nations. |
ENGLAND – FUNDING BOOST Integrated care boards are responsible for commissioning palliative and end-of-life services. NHS England has developed a dashboard, which brings together all the relevant local data in one place (Hansard, 2025). The aim is to put plans in place to address health inequalities, and to ensure that funding is distributed fairly, based on prevalence (NHS England, 2025). At the end of last year, the Department of Health and Social Care (DHSC) unveiled the ‘biggest investment in a generation for hospices’: £100m extra capital funding for adult and child hospices and £26 million in revenue funding to support children and young people’s hospices (DHSC, 2024). |
NORTHERN IRELAND – UNDER PRESSURE Regional health and social care boards are responsible for providing palliative care. Hospices are under pressure. Jim Shannon, a DUP Northern Ireland-based MP, told a House of Commons debate on palliative care in January that a hospice in Belfast ‘has to cut its beds from seven to six, for five days of the week, and at the weekend, there are only three’ (Hansard, 2025). |
SCOTLAND – OWN STRATEGIES The Scottish Government is developing its own palliative care strategy and has set up a steering group. Its remit is to ensure ‘everyone in Scotland receives well-coordinated, timely and high-quality palliative care, care around death, and bereavement support based on their needs and preferences’ (Scottish Government, 2023). Integration authorities are responsible for care of the dying – in different areas this is the local authority, health board or an integration joint board. The Scottish Parliament is considering its own separate Assisted Dying for Terminally Ill Adults (Scotland) Bill, introduced by backbench Scottish Liberal Democrats MSP Liam McArthur (Scottish Parliament, 2025). |
EXTREME COST PRESSURES
This would all be a dramatic shift across the UK. Currently there is often poor access to palliative care. End-of-life charity Marie Curie says both the NHS and charitable hospices are facing extreme financial pressures, and long-term investment in the primary and community care workforce has not met rising demand (Marie Curie, 2024).
The design and delivery of end-of-life care has huge implications for public spending. The UK spends more than £11bn on healthcare in the last year of life. More than half goes on emergency care (£6.6bn), according to research by the Nuffield Trust and the Health Economics Unit for Marie Curie (Marie Curie, 2025).
That’s money that could be spent more effectively, says MP Rachel. ‘If we get this right, we will not see patients being placed in the most expensive, chaotic part of the NHS and emergency care. We won’t see people occupying those hospital beds.’
Care could be better provided at home, she adds. ‘I believe that we’re not talking about more cost. We’re talking about better care, we’re talking about planned care and we’re talking about meeting the patient’s aspirations about how they want to die.’
Rachel’s local hospital in York has no palliative care service over the weekend, she says. ‘We need to ensure that you have got the 24/7 care available for patients in the right place.’
In the community, clinicians have got so many patients they’re caring for that it’s ‘challenging’ to ‘do that in a timely and safe way’, Rachel notes.
‘IT REQUIRES SAFER STAFFING, EXPERTISE, INVESTMENT IN TIME, ALLOWING PRACTITIONERS TO DO THE JOB THEY KNOW SO WELL AND CAN DO SO WELL’
NURSES AT THE CENTRE
The commission will ask ‘what more can we do to support nurses’ Rachel says, by, for example, holding a round table session with district, community and hospital nurses.
‘We know the centrality of nursing in the provision of [palliative] care. As well as looking at the advances in medicine, we need to ensure that nursing staff have the support, the training and resources “within the service”.’
Rachel wants ‘to ensure that we have got nurses on the ground in the community, in particular, because we know that’s the direction of travel, [with] services moving much more out into people’s own homes’.
Janet Taylor says palliative care ‘requires safer staffing. It requires expertise. It requires investment in time, allowing practitioners to do the job they know so well and can do so well.’
Unplanned deaths in hospital ‘should be the backstop, not the aspiration’, states Rachel. Making that a reality is a huge challenge – but it’s one the commission is determined to tackle.
WHAT IS THE ASSISTED DYING BILL? |
ENGLAND AND WALES The Terminally Ill Adults (End of Life) Bill would allow adults who are expected to die within six months to have help to end their lives, as long as two independent doctors and possibly either a high court judge or panel with social workers and lawyers agree. The adult must have mental capacity and have expressed a clear, settled and informed wish, free from coercion. MPs began scrutinising the bill line-by-line in February. The report stage, when MPs can suggest and vote on amendments, is set for April. The full bill will then be voted on again, before it moves to the House of Lords for further scrutiny and voting. |
SCOTLAND People would have to be 16 years or older to apply for assisted dying, but following feedback at the committee stage this may be increased to 18 years, explains MSP Liam McArthur. There’s no requirement for a high court judge to oversee the decision but either of the two medical professionals signing off the decision can refer the applicant or decision to a specialist. In February, MSPs voted to complete Stage 1 of the Assisted Dying for Terminally Ill Adults (Scotland) Bill. The Health, Social Care and Sport Committee is due to complete its scrutiny by 23 May. MSPs will then vote on whether the legislation goes forward or not. |
RESOURCES
- Commission on Palliative and End-of-Life Care
- Marie Curie – The UK’s leading end-of-life charity
- Macmillan Cancer Support has a best practice resource for health professionals
- Children: Together for Short Lives has a range of resources for professionals working with dying children
REFERENCES
Bone AE, Gomes B, Etkind SN, Verne J et al. (2017) What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death. Palliative Medicine 32(2): 329-36.
Department of Health and Social Care. (2024) Biggest investment into hospices in a generation. See: gov.uk/government/news/biggest-investment-into-hospices-in-a-generation (accessed 19 February 2025).
Hansard. (2025) Volume 760: Hospice and Palliative Care (13 January 2025). See: hansard.parliament.uk/commons/2025-01-13/debates/9E924211-FFE3-4377-95FD-00168281766E/HospiceAndPalliativeCare (accessed 19 February 2025).
Hospice UK. (2021) Equality in hospice and end of life care: challenges and change. See: hospiceuk.org/publications-and-resources/equality-hospice-and-end-life-care-challenges-and-change (accessed 19 February 2025).
Marie Curie. (2025) Over 80% of healthcare cost in the final year of life spent on hospitals. See: mariecurie.org.uk/media/press-releases/over-80-of-healthcare-cost-in-the-final-year-of-life-spent-on-hospitals/386503 (accessed 19 February 2025).
Marie Curie. (2024). Better End of Life Report 2024.See: https://www.mariecurie.org.uk/research-and-policy/policy/better-end-life-report (accessed 28 February 2025). [mac to check facts there]
NHS England. (2025) Palliative and end of life care. See: england.nhs.uk/eolc/ (accessed 19 February 2025).
NHS Wales. (2025) National Palliative and End of Life Care Programme. See: executive.nhs.wales/functions/networks-and-planning/peolc/ (accessed 20 February 2025).
Parliamentary Office of Science and Technology. (2022) Palliative and end of life care. See: researchbriefings.files.parliament.uk/documents/POST-PN-0675/POST-PN-0675.pdf (accessed 19 February 2025).
Scottish Government. (2023) Palliative and end of life care strategy: aims, principles and priorities. See: https://www.gov.scot/publications/palliative-and-end-of-life-care-strategy-aims-principles-and-priorities/ (accessed 20 February 2025).
Scottish Parliament. (2025) Assisted Dying for Terminally Ill Adults (Scotland) Bill. See: parliament.scot/bills-and-laws/bills/s6/assisted-dying-for-terminally-ill-adults-scotland-bill (accessed 19 February 2025).
