Crisis in palliative care as survey shows suffering

A third of dying people in England and Wales were severely or overwhelmingly affected by pain in the last week of life, according to a survey that shows how “patchy and inconsistent” care has become.

The research found that one in five dying people had no contact with their GP in the last three months of life.

Charity Marie Curie said GP and district nursing services are “stretched beyond capacity”.

Almost half of survey respondents (49%) said they were unhappy with at least one aspect of the care the dying person received. Of those, one in eight made a formal complaint.

Marie Curie chief executive Matthew Reed said the findings show that “care for dying people is in crisis”.

Almost half those surveyed (49%) said their dying loved one visited A&E at least once in their final 3 months, and one in eight people who died in hospital had been there less than 24 hours.

Marie Curie said this is evidence that “too many people who are close to death end up in a busy A&E, because there isn’t access to proper care at home or in a care home”.

Growing numbers needing care

The charity predicts that by 2048 there will be an extra 147,000 people in the UK who need palliative care before they die.

The Royal College of GPs said the survey “reflects intense pressures right across the health and care services”.

Chair Professor Kamila Hawthorne added: “We desperately need improved staffing and funding in general practice in order to provide the high-quality end of life care our patients deserve.”

Dr Hilary Williams, consultant medical oncologist and Royal College of Physicians vice president for Wales, said: "This report highlights a critical gap in our healthcare system: the lack of comprehensive planning for end-of-life care.

"Despite advancements in treatments for chronic illnesses, we are failing to provide compassionate and coordinated care for those in the final months of life.

"Too often, patients and families are caught in a chaotic cycle of ambulance calls and hospital admissions, where staff struggle with a lack of accessible information and inadequate resources. Corridor care is becoming the norm in too many hospitals. This is unacceptable.

Collaboration and training ‘essential’

“Collaboration between specialties and royal colleges will be essential: we need to improve how we support and train more people in the NHS workforce to recognise and care for terminally ill patients and support their families through the final months and weeks of life.”

A spokesperson for the Association for Palliative Medicine of Great Britain and Ireland (APM) said the report outlined “the desperate and urgent need for appropriate funding of palliative medicine”.

“The report highlights how avoidable symptoms and situations could be addressed with adequate statutory funding for palliative medicine.”

In England, only 37% of hospice care is NHS-funded¹.

The report calls for a national strategy for palliative and end-of-life care, supporting delivery at the local level.

The APM said the strategy should include appropriate funding, equitable geographical access, workforce growth, training for generalist and specialist staff and bereavement care.

Labour ran on a manifesto pledge to trial neighbourhood health centres, bringing together services including family doctors, district nurses and palliative specialists under one roof.

Marie Curie said all governments across the four nations of the UK should “guarantee access to high-quality palliative and end of life care in all settings, whether hospital, home, care homes or hospice” to prevent people suffering unnecessary pain in their final weeks.

‘Overstretched GPs’

Mr Reed said: "We are shocked to see this clear evidence of dying people struggling with pain and other symptoms because they cannot access the end of life care they need from overstretched GPs, district nurses and other health workers. There are no two ways about it, care for dying people is in crisis.

"People at the end of life should be able to have the very best possible palliative and end of life care and instead they are struggling even to get an appointment to be seen.

“The inevitable consequence of this is people dying in distress and alone at home, in care homes, and in hospitals. It isn’t good enough. The UK and Welsh Governments urgently need to fix end of life care.”

Professor Katherine Sleeman, lead researcher from KCL, said predictions of a steep rise in people needing palliative care demand an increase in resources: "Without a corresponding increase in capacity of primary and community care teams to support these people as they approach the end of life, the quality of care is likely to further suffer.

“It has never been more important to ensure high-quality palliative care for all who need it.”

‘Government must end the crisis’

The charity said it is calling on the UK and Welsh governments to fix end of life care.

A Department of Health and Social Care spokesperson said: "This Government wants a society where every person receives high-quality, compassionate care from diagnosis through to the end of life.

“We are determined to shift more healthcare out of hospitals and into the community, to ensure patients and their families can access the personalised care they need, where and when they need it.”

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References

1. Time to care: Findings from a nationally representative survey of experiences at the end of life in England and Wales, Marie Curie, 2024 [Full text]

2. Government funding for hospices: All-Party Parliamentary Group Hospice and End of Life Care[pdf], February 2024