Crisis in care for dying people says Marie Curie 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 major survey said to show how “patchy and inconsistent” care for this group has become.

End-of-life charity Marie Curie said its study of 1,179 bereaved people means it is the largest nationally representative post-bereavement survey in the UK in almost 10 years.

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

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... there are no two ways about it, care for dying people is in crisis

Marie Curie chief executive Matthew Reed said the findings from the 2023 survey show that “care for dying people is in crisis”.

The research, in collaboration with King’s College London (KCL), Hull York Medical School and the University of Cambridge, also found that one in five dying people had no contact with their GP in the last three months of life.

Marie Curie said GP and district nursing services are stretched beyond capacity, with Mr Reed adding that while these patients “should be able to have the very best possible” care, they are often instead “struggling even to get an appointment to be seen”.

Almost half those surveyed (49%) said their dying loved one visited A&E at least once in their final three months of life, 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”.

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

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

Palliative care is described by the NHS as care which makes someone who has an illness that cannot be cured as comfortable as possible by managing their pain and other distressing symptoms.

The Royal College of GPs said the survey results are “certainly concerning and reflect intense pressures right across the health and care services” with its chairwoman Professor Kamila Hawthorne adding: “We desperately need improved staffing and funding in general practice in order to provide the high-quality end of life care our patients deserve.”

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.

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: “This study reveals patchy and inconsistent provision of care for people approaching the end of life.

“While there were examples of excellent care – including in the community, in care homes, and in hospitals – the overall picture is of services that are overstretched, and of health and care staff lacking the time they need to consistently provide high-quality care.”

Referring to the expected rise in people needing palliative care in the near future, she added: “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.”

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

The Department for Health and Social Care has been contacted for comment.

A Welsh Government spokesperson said it provides more than £12.5 million every year “to ensure people in Wales have access to the best possible end of life care and support” and that the National Programme for Palliative and End of Life Care is “driving forward improvements”.

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.”

– The survey findings were of people who had registered the death of a family member in the previous six to 10 months and only non-sudden causes of death were included.