Research shows painful truth of end of life care

A major research study has found that one in three dying people in England and Wales were severely or overwhelmingly affected by pain in the last week of life, with bereaved people reporting how difficult it was to get joined-up support from health and care professionals at home. 

Funded by end of life charity Marie Curie, Time to Care: findings from a nationally representative survey of experiences at the end of life in England and Wales was produced by King’s College London’s Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge.  

The study found: 

• One in five dying people had no contact with their GP in the last three months of life 

• Half of respondents (49%) in study were also unhappy with at least one aspect of the care the person who died received 

• Fewer than half of respondents said they had a key contact person to co-ordinate their care 

Time to Care aims to describe the outcomes, experiences, and use of care services by people affected by dying, death, and bereavement in England and Wales. It is the final report from the Marie Curie Better End of life programme.  

Fliss Murtagh, Professor of Palliative Care at Hull York Medical School and Director of the Wolfson Palliative Care Research Centre, said: "This is important work; giving voice to those who are least often heard – those with advanced illness and their families. We must improve care, especially for those at home who are sometimes without ready help when needed." 

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

Half of people 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.   

Half of respondents (49%) in the study were also unhappy with at least one aspect of the care the person who died received and of those one in eight people made a formal complaint. Fewer than half of respondents said they had a key contact person to co-ordinate their care. This meant responsibility for care fell on informal carers (family and friends), who often felt unprepared and unsupported. 

The research report is based on a survey sent by the Office for National Statistics in 2023 to a nationally representative sample of people who had registered the death of a family member in the prior six to 10 months. Only non-sudden causes of death were included. Responses were received from 1179 people, making this the largest nationally representative post-bereavement survey in England and Wales for a decade. 

Professor Murtagh, said: "We have not had a recent national picture of what end of life care has been like for the families who have sadly experienced this. For many families, this is the first time they have cared for a family member with advanced illness. Often, they have found themselves unprepared and unsupported; not knowing where to turn. We worked directly with people with experience of this, to ensure the voice of those who are rarely heard came through strongly in this report." 

Professor Katherine Sleeman, from King’s College London and lead researcher on the project, 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. This means that dying people miss out on treatment and care for their symptoms, and families are left feeling unprepared and unsupported which has lasting emotional repercussions into bereavement. 

"These findings are highly concerning considering the ageing population and the expected increase in palliative care needs across the UK. By 2048, there will be an additional 147,000 people in the UK who need palliative care before they die, a 25% increase. 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." 

Annette Weatherley, Marie Curie Chief Nursing Officer, said: "The findings are shocking. Too many people are dying in avoidable pain, struggling with breathlessness and other debilitating symptoms because of the difficulties they face accessing the end of life care they need from overstretched GPs and other health and care workers. 

"Without urgent action, gaps in access to palliative and end of life care will only grow. 

"It is a critical time to improve palliative and end of life care. People at the end of life should be able to have the very best possible care. There is only one chance to get it right at the end of life. Yet, as the evidence shows, too many people are being failed by a system faced with extreme financial and workforce pressures.  It’s time for governments to step up and fix care of the dying." 

Time to care in England -Implications for England of 'Time to care: findings from a nationally representative survey of experiences at the end of life in England and Wales'. Policy summary. Marie Curie, 2024. 

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