Voices of bereaved highlight harrowing end of life care
Press release published
A major research study funded by the end of life charity Marie Curie1 reveals that, in England and Wales, one in three dying people 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.
Time to Care: findings from a nationally representative survey of experiences at the end of life in England and Wales2 from King's College London's Cicely Saunders Institute, Hull York Medical School at University of Hull, and the University of Cambridge, found one in five dying people had no contact with their GP in the last three months of life; with Marie Curie adding that GP and District Nursing services are stretched beyond capacity2.
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. This shows 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.
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.
The charity is calling on the UK and Welsh governments to fix end of life care.
In its election manifesto the new UK government pledged to trial Neighbourhood Health Centres in England that would join up community services including palliative care. The charity says that governments across the UK should guarantee access to high-quality palliative and end of life care in all settings, whether hospital, home, care homes or hospice, 24/7, including support from palliative care specialist nurses and doctors when needed. Otherwise, more people will have unnecessary pain and suffering at the end of life and will be forced to A&E to get the support they need.
The charity is also making recommendations to the Welsh Government to ensure they deliver on their vision for palliative and end of life care in Wales.
Lynda Browne, aged 59 from Solihull, got support from a Marie Curie hospice when her mother died but when she cared for her Auntie Mary, she received no support at home. She said:
"The GP never came for my Auntie Mary. Because she was old and had dementia, she wasn't a priority. Her catheter bag was often full of blood, but the doctor never came to check, I had to take pictures and then email them to the GP surgery. The doctor would ring me and say, 'she probably just pulled it'.
"I may have thought that was just how things worked when people were at the end but with mum, she got amazing support from the Marie Curie hospice in Solihull. All that pressure was taken off us and we could concentrate on spending time with her instead of having to fight for everything. It is mentally exhausting having to push so hard for care all the time. If like Auntie Mary, a person is elderly but have no family or anyone to advocate for them then they really are at the mercy of their postcode!"
Kate Dobbs, aged 58 from London, cared for her father when he was dying. A lack of support at home resulted in unnecessary trips to A&E. Since being diagnosed with terminal cancer herself, she is now moving to an area with better end of life care. She said:
"Most people research the quality of schools when they move house. I'm researching hospices. My biggest fear is that I get the same poor care as my father.
"With dad we had no care at home. We had to keep going to A&E. It was awful. If it was a weekend there were never enough staff. It was just so chaotic. At home we were left to it. My sister and I would drive huge distances late at night, completely exhausted, trying to find a chemist that had drugs for his pain.
"My stepdaughter died recently. She had a palliative care team in her home and the right pain medication ready for when she needed it. Access to care and pain control depends on your postcode. That's why I'm moving."
Matthew Reed, chief executive of Marie Curie, 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.
"Marie Curie welcome the UK Government's commitment to improving integration of health services and we're ready to work closely with them to ensure the trials of the new Neighbourhood Health Centres include palliative care."
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 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."
Notes to editor
For further information please contact Nicola.price1@mariecurie.org.uk / 07900580991
Or the Marie Curie Press Office: media@mariecurie.org.uk / 0845 073 8699.
Please note, Marie Curie is not a cancer charity but the UK's leading 'end of life charity'. We care for people with - any illness they are likely to die from including Alzheimer's (and other forms of dementia), heart, liver, kidney and lung disease, motor neurone disease, Parkinson's, and advanced cancer.
Better End of Life Programme
Reference:
1 Marie Curie (2024), 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. Available at: www.mariecurie.org.uk/policy/better-end-of-life-report
2 Johansson T, Pask S, Goodrich J, Budd L, Okamoto I, Kumar R, Laidlaw L, Ghiglieri C, Woodhead A, Chambers RL, Davies JM, Bone AE, Higginson IJ, Barclay S, Murtagh FEM, Sleeman KE (King's College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK). Time to care: Findings from a nationally representative survey of experiences at the end of life in England and Wales. Research report. London (UK): Marie Curie. (June 2024). Available at: www.mariecurie.org.uk/policy/better-end-of-life-report
One in three dying people were severely or overwhelmingly affected by pain in the last week of life in England and Wales: [Johansson et al., 2024, p. 34]
One in five dying people had no contact with their GP in the last three months of life: [Johansson et al., 2024, p.22]
Almost half (49%) of the people surveyed said their dying loved one visited A&E at least once in their final three months of life: [Johansson et al., 2024, p.20]
One in eight people who died in hospital had been there less than 24 hours: [Johansson et al., 2024, p.44]
Half of respondents (49%) in the study were unhappy with at least one aspect of the care the person who died received and of those one in eight made a formal complaint: [Johansson et al., 2024, p.30]
Better End of Life Programme
This is the final report from the Marie Curie Better End of Life programme, which is a collaboration, funded by Marie Curie, between King's College London's Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge.
This report shows findings from a national post-bereavement survey, the QUALYCARE survey, conducted in 2023 across England and Wales. The aim is to describe the outcomes, experiences, and use of care services by people affected by dying, death and bereavement in England and Wales.
The survey was disseminated through the Office for National Statistics (ONS) to a nationally representative sample of people who had registered the death of a family member in the prior 6 to 10 months. Only non-sudden causes of death were included. The researchers received responses from 1179 people, making this the largest nationally representative post-bereavement survey in the UK since the 2015 VOICES survey.
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.
Marie Curie is the UK's largest charitable funder of palliative care research. Our work deepens our understanding of what makes a good end of life, highlighting challenges and gaps in care, and improving support for everyone with an illness they're likely to die from, and those close to them. Our research helps us give the best care and improve the care system so that more people have the best possible experience at the end of life.
Marie Curie campaigns for a world where everyone gets the best experience possible at the end of their life. We raise public awareness and influence decision-makers across the UK on the issues affecting dying people and those close to them, so more people can access high quality care and support when and where they need it most.
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.
About King's College London
King's College London is amongst the top 40 universities in the world and top 10 in Europe (THE World University Rankings 2024), and one of England's oldest and most prestigious universities. With an outstanding reputation for world-class teaching and cutting-edge research, King's maintained its sixth position for 'research power' in the UK (2021 Research Excellence Framework).
King's has more than 33,000 students (including more than 12,800 postgraduates) from some 150 countries worldwide, and 8,500 staff.
For nearly 200 years, King's students and staff have used their knowledge and insight to make a positive impact on people, society and the planet. Focused on delivering positive change at home in London, across the UK and around the world, King's is building on its history of addressing the world's most urgent challenges head on to accelerate progress, make discoveries and pioneer innovation. Visit the website to find out more about Vision 2029, which sets out bold ambitions for the future of King's as we look towards our 200th anniversary.
World-changing ideas. Life-changing impact: kcl.ac.uk/news
About Hull York Medical School
Hull York Medical School is a partnership between the University of Hull and the University of York. Since opening in 2003, the School has become known as one of the UK's most welcoming and inclusive medical schools with a reputation for innovative, inspiring, and rigorous medical education.
Students graduate from Hull York Medical School as excellent thinkers, evidence-based practitioners, and patient-centred communicators, who are thoroughly prepared for clinical practice.
Hull York Medical School has an excellent reputation for its research. In the 2021 Research Excellence Framework (REF), over 85% of research at Hull York Medical School was deemed 'world-leading' or 'internationally excellent'.
The School's community of clinical and academic researchers across Hull and York conduct world-class, interdisciplinary research, addressing issues that are of critical national and international importance, including primary care, mental health, palliative care, public health, and immunology and infection.
Research undertaken to date has attracted significant grants and funding, including from the National Institute for Health and Care Research, Marie Curie, Yorkshire Cancer Research, the Wolfson Foundation, Cancer Research UK, and the British Heart Foundation
About the University of Cambridge
The University of Cambridge is one of the world's leading universities, with a rich history of radical thinking dating back to 1209. Its mission is to contribute to society through the pursuit of education, learning and research at the highest international levels of excellence.
The University comprises 31 autonomous Colleges and over 100 departments, faculties and institutions. Its 24,000 students include around 9,000 international students from 147 countries. In 2023, 73% of its new undergraduate students were from state schools and more than 25% from economically disadvantaged backgrounds.
Cambridge research spans almost every discipline, from science, technology, engineering and medicine through to the arts, humanities and social sciences, with multi-disciplinary teams working to address major global challenges. In the Times Higher Education's rankings based on the UK Research Excellence Framework, the University was rated as the highest scoring institution covering all the major disciplines.
A 2023 report found that the University contributes nearly £30 billion to the UK economy annually and supports more than 86,000 jobs across the UK, including 52,000 in the East of England. For every £1 the University spends, it creates £11.70 of economic impact, and for every £1 million of publicly-funded research income it receives, it generates £12.65 million in economic impact across the UK.
The University sits at the heart of the 'Cambridge cluster', in which more than 5,000 knowledge-intensive firms employ more than 71,000 people and generate £21 billion in turnover. Cambridge has the highest number of patent applications per 100,000 residents in the UK.
www.cam.ac.uk