Major new study shows palliative care in crisis

Palliative care is in crisis. New research published today (16 Feb) by end of life charity Marie Curie shows that about 170,000 people in England every year spend their final days in pain, distress or without vital support that should be available to everyone at the end of life.

This is the first major study in over a decade to estimate unmet palliative care need among people at the end of life. It was led by researchers at King's College London and University of Hull, with contributions from the University of Edinburgh, and funded by Marie Curie.

Findings show that large numbers of people – almost one in three – die with unaddressed symptoms and concerns, in pain or distress, and with little or no access to GP support, despite evidence that the right care would help. Without urgent action to improve care, the situation will get worse. Unmet palliative care need is expected to rise by 23% over the next 25 years, meaning that by 2050, over 212,000 people each year in England could die without the care they need.

The UK Government committed to publishing a Palliative and End of Life Care Modern Service Framework in spring, now delayed until the autumn. Meanwhile, across England, people at the end of life are still dying without access to vital medication, in ambulances, emergency departments, and even hospital corridors following avoidable hospital admissions, without the support they need in their final hours.

Jo from Leicestershire struggled to secure night care for her husband when he was terminally ill in 2024: "It was the constant phone calls, just trying to get things sorted for my husband. I was desperate for night-time support, scared, exhausted, and completely drained. He wanted to die at home, and I fought for that. But fighting to make it happen safely, all the time, was utterly exhausting."

Marie Curie is urging the UK Government to include three essential commitments in the Modern Service Framework, and to back them with the necessary funding, so that everyone can access:

Care at the right time: Ensure every community has round-the-clock advice and coordination – including through specialist telephone service with access to essential medicines when they're needed most.

Care available in a place close to them: palliative care being fully embedded in every neighbourhood health service in England.

Quality support from all healthcare providers: compulsory palliative and end of life care training for all health and care staff, including GPs, paramedics, and emergency teams — so they feel confident supporting people towards the end of life.

Matthew Reed, Chief Executive of Marie Curie, said: "The evidence is clear. People are reaching the end of their lives without basic palliative care, causing pain and distress that is often avoidable – and the situation is getting worse. The Modern Service Framework is a critical opportunity to fix this, but only if it delivers guaranteed 24/7 palliative care in every community, backed by proper funding. The UK Government has the evidence it needs, it must act. Dying people cannot afford further delay."

Fliss Murtagh, Professor of Palliative Care at Hull York Medical School, Director of the Wolfson Palliative Care Research Centre and one of the lead researchers, said: "These findings are a stark warning that our systems are not meeting the needs of a growing older population as they reach the end of their lives. What we see from the evidence is not just gaps in care but system-wide limitations that repeatedly fail people in their final months. We know how to measure unmet needs; and we know how to address them. Now we need action to improve care and services."

Dr Anna Bone, study lead and Lecturer in Epidemiology and Palliative Care at King's College London, said: "Our research shows that many people are reaching the end of their lives with distressing symptoms that aren't being addressed, and without feeling adequately supported by primary care. We also found that the number of people experiencing unmet needs is likely to rise in the years ahead. At a time that is already profoundly difficult for individuals and their families, everyone should be able to access the care and support they need."

Marie Curie is inviting the public to support its Fix End of Life Care campaign and show the government how crucial change is. Visit www.mariecurie.org.uk

ENDS

For interviews, quotes, or further information, contact Stass Daniells, Marie Curie press office on 07968 594549 or out-of-hours 0845 073 8699 to reach the on-call member of the PR team.

For media enquiries related to the evidence, contact University of Hull press office on 01482 465268, media@hull.ac.uk or King's College London press office on joanna.dungate@kcl.ac.uk

Notes to editors

Usage
This research was funded by Marie Curie to better understand how many people are missing out on palliative care. For over a decade, the widely cited statistic that 1 in 4 people currently don't get the end of life care and support they need [Ref p62-64, chpt 6 Independent Palliative Care Funding Review - GOV.UK] has been used to highlight gaps and inequalities in end of life care. However, this figure was based on broad estimates and assumptions. The purpose of this research was to provide an agreed definition of unmet palliative care need as well as a more detailed and reliable picture of unmet need to better inform policy and practice.

Definition
This research was underpinned by work to develop a shared definition of unmet palliative care need, based on workshop discussions with people affected by terminal illness and the health and care professionals who work with them.

Based on these findings, the researchers established the following short definition for unmet need for palliative care: Unmet palliative care needs are present when a person with life-limiting illness has symptoms, psychosocial concerns, or care requirements that are not adequately addressed through available services, with inability to access or receive person-centred care.

The definition of unmet need above was used to analyse the results of a nationally representative survey of 1,194 bereaved family carers, to find the number and proportion of people with unmet need for palliative care.

The survey was commissioned by Marie Curie and conducted by the ONS across England and Wales between May and November 2023.2 When analysing this survey, someone was considered to have unmet need for palliative care if they had both: unaddressed symptoms and concerns, and lacked sufficient access to help from GP services.

About the Research

The study was conducted by:

The Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London

The Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull

With contributions from the University of Edinburgh

Funded by Marie Curie under the DUECare Project (Defining and Estimating Unmet Palliative Care Needs in the UK)

The research draws on a nationally representative survey of 1,194 bereaved family carers across England, analysed using a newly co-produced definition of "unmet palliative care need. https://link.springer.com/article/10.1186/s12904-025-01971-4

About Marie Curie

Marie Curie is the UK's leading end of life charity.

The charity provides expert end of life care for people with any illness they are likely to die from, and support for their family and friends, in our hospices and where they live. It is the largest charity funder of palliative and end of life care research in the UK, and campaigns to ensure everyone has a good end of life experience. Whatever the illness, we're with you to the end.

If you're living with a terminal illness or have been affected by dying, death and bereavement, Marie Curie can help. Visit mariecurie.org.uk or call the free Marie Curie Support Line on 0800 090 2309.

Whatever the illness, wherever you are, Marie Curie is with you to the end.