Each year around three-quarters of a million emergency “out-of-hours” visits to A&E occur for people approaching the end of life: 69% of areas surveyed do not consistently provide a designated 24/7 phone line for terminally ill people: 78% of areas surveyed lacked consistent provision of overnight nursing services: Marie Curie says: “We cannot tell people to die during office hours”
New research funded by Marie Curie has found that terminally ill people are struggling to access essential care at home during evenings and weekends, which the charity warns, means people are dying in pain.
In 78% of the areas surveyed in today’s Better End of Life report, nursing services were not consistently available to dying people overnight at home, despite 75% of the week falling “out-of-hours” [1].
Furthermore, 69% of areas did not provide a 24/7 designated telephone line for people approaching the end of life and their carers, that can connect them quickly and easily to local services [2].
Of these, 27% of areas had no designated phone line at all, while 42% had only partial coverage out-of-hours [3].
This is despite repeated recommendations to implement this service from The National Institute for Health and Care Excellence (NICE) over the last 10 years [4].
Accessing vital medicines out-of-hours was also difficult with only 25% of areas having a pharmacy open throughout the night [5].
This has led the end of life charity, Marie Curie who funded the research undertaken by King’s College London’s Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge to describe the situation as “bleak,” adding,
“we cannot tell people to die during office hours” to get the care they need.
Pain and other symptoms can suddenly increase when someone is nearing the end of their life, so fast, responsive care is needed around the clock. Fears about dying without dignity or without their loved ones present can cause further distress.
Gaps in out-of-hours care, the researchers say, can lead to avoidable trips to stretched hospital A&E departments.
The researchers found that, over a year, approximately 780,000 out-of-hours visits were made to A&E for people in the last year of life. These visits increase rapidly during the final three months of life, with out-of-hours visits increasing more than visits during standard office hours.
The research also found out-of-hours emergency visits to hospital are higher in areas of social deprivation. Both the charity and researchers say that dying people in deprived areas should not have to rely on emergency hospital departments for the help and care they need.
Better palliative care in the community, including out-of-hours, could play a key role in reducing pressure on emergency services, improving both the quality of life for dying people and protecting precious NHS resource.
Tracey Bennett, 54, from Doncaster cared for her father, Michael Woodward, at home before he died on 29 January 2021. Tracey struggled to get timely support out-of-hours for Michael:
“When the doctor told us that dad’s cancer was terminal, we were pushed out the door with no-one to turn to. We only had a phone number for office hours, which is no good at 1 o’clock in the morning. When dad’s time came, no one was willing to help.
“Dad had a fall at night trying to change his stoma. I called the district nurses, as they promised they would help with this when he was diagnosed, but two hours later no one had arrived. The only people we could call were paramedics. Dad did not want to go to hospital so they asked for a doctor to come to the house.
“Two hours later the doctor arrived with the district nurses. By this point my dad looked like he was dying but they said he was fine and left.
“After they left, dad was really distressed. I called the district nurses again and begged them to come and help. By the time they got here, my dad was dead. I let him down when he needed me most as I couldn’t get anyone to listen to me. I wouldn’t wish what happened that night on my worst enemy.”
Ruth Driscoll, Marie Curie Associate Director of Policy, and Public Affairs said:
“This research paints a bleak picture of out-of-hours care in many areas of the UK but we cannot tell people to die during office hours.
“Caring for a family member or friend is a final act of love but the reality is that a lack of care, especially late at night, is causing unnecessary pain and distress to patients which often leaves families feeling that they have let their loved one down.
“A designated phoneline is considered crucial for out-of-hours care and one of the most valuable services that can be offered to patients and their carers. It would also help prevent avoidable emergency admissions to hospital, which increase pressure on an already stretched NHS.
“There must be high quality care available for dying people 24 hours a day, seven days a week, to all who need it, regardless of where they live.”
Professor Katherine Sleeman, from King’s College London and lead researcher on the Better End of Life programme said:
“Our research uncovers considerable variation in the care and services that are provided in the evening or at weekends across the UK. If these services are not in place, people may have no choice but to go to hospital, even if their preference is to stay at home.
“Because we know that demand for palliative and end of life care will increase over the next decade, it is essential that the gaps in services out-of-hours are addressed, so that everyone with advanced illness has access to the right care, whenever and wherever they need it.”
Professor Fliss Murtagh, Director of the Wolfson Palliative Care Research Centre, from Hull York Medical School at the University of Hull, and one of the researchers working on the Better End of Life programme said:
“Throughout the UK, major reliance on district nurses or community nursing teams for out-of-hours palliative and end of life care was evident.
“Services are often available in principle, but our research revealed large gaps between what was technically available and delivery ‘on the ground’. Care often relied too heavily on over-stretched GPs and district nurses, who do their best but cannot always reach those needing support in a timely way.”
As a result of the research Marie Curie is recommending that every area of the UK should have a designated 24/7 palliative and end of life care telephone line. This should be staffed by experienced palliative care professionals so that people at the end of life and their carers can get the advice, guidance, and support to access local services and medication that they need rather than having to call 999.
The charity also says that investment must be made to ensure there is a sustainable workforce able to meet the current and future needs of dying people in our ageing population.
To download the full research please go to: https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better-end-of-life-report-2022-final.pdf
For Marie Curie policy commentary on “Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers” go to:
better-end-of-life-commentary-2022-final
Marie Curie would like to hear from people who have experienced poor or good care out-of-hours at the end of life, please visit www.mariecurie.org.uk/get-involved/share-your-story
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References
1. Pask S et al (2022, p.16), Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers. Better End of Life 2022 Research report. London (UK): Marie Curie. https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better-end-of-life-report-2022.pdf
2. Pask S et al (2022, p.13), Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers. Better End of Life 2022 Research report. London (UK): Marie Curie.
https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better-end-of-life-report-2022.pdf
3. Pask S et al (2022, p.13), Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers. Better End of Life 2022 Research report. London (UK): Marie Curie.
https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better-end-of-life-report-2022.pdf
4: The National Institute for Health and Care Excellence. End of life care for adults. Quality standard [QS13]. 2011. London, UK: The National Institute for Health and Care Excellence.
The National Institute for Health and Care Excellence. End of life care for adults: service delivery [NG142]. 2019. London, UK: The National Institute for Health and Care Excellence.
National Institute for Health and Care Excellence. End of life care for adults: Quality standard [QS13]. 2021. Available at: https://www.nice.org.uk/guidance/qs13
5. Pask S et al (2022, p.15), Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers. Better End of Life 2022 Research report. London (UK): Marie Curie.
https://www.mariecurie.org.uk/globalassets/media/documents/policy/beol-reports-2022/better-end-of-life-report-2022.pdf
Methodology
The research used analysis of data on out-of-hours emergency department attendances during the last year of life for people who died in 2020 in England, Wales, Scotland, and Northern Ireland, and interviews with health care professionals with commissioning or leadership responsibilities for, or detailed knowledge about, out-of-hours palliative and end-of-life care, from across the UK (45 clinical commissioning groups in England, 4 Health Boards in Wales, 6 NHS Health Boards in Scotland, and all 5 Health and Social Care Trusts in Northern Ireland).
The research used data assets made available by the BHF Data Science Centre’s CVD-COVID-UK/COVID-IMPACT consortium, the Secure Anonymised Information Linkage (SAIL) Databank, the Northern Ireland Honest Broker Service, the Scottish National Safe Haven as part of the Data and Connectivity National Core Study, led by Health Data Research UK in partnership with the Office for National Statistics and funded by UK Research and Innovation (CovPall-Connect study, grant ref MC_PC_20029; HDRUK2020.145, Principal Investigator Professor Irene J Higginson).
Funding
The research is part of the Better End of Life Programme, funded by Marie Curie, grant [MCSON-20-102].
Palliative care
Palliative care refers to physical, psychological, social, and spiritual support for people with advanced life-threatening illness, that focuses on relief of persistent symptoms, optimising quality of life, and support for informal carers (whether family or friends).
Palliative and end-of-life care is provided in every setting, including hospital and home, by a range of professionals including GPs, community nurses, and specialists in palliative care. Although preferences vary among individuals and across several types of illness, many people wish to be cared for and die at home, if they and their informal carers can access appropriate care and support there.
In England, there is a new requirement within the Health and Care Act (2022) for specialist palliative care services to be provided in all settings
There has been a call for transformation of community-based provision in palliative and end-of-life care in Wales
In Scotland, there are new partnership working initiatives, such as the Highland Hospice’s End of Life Care Together project
In Northern Ireland, a recent report highlights the need for increased awareness around access to end-of-life care and support
About Marie Curie
Marie Curie is the UK’s leading end of life charity. The charity provides essential nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death, and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end-of-life care and bereavement support.
About King’s College London
King’s College London is one of the top 10 UK universities in the world (QS World University Rankings, 2021) and among the oldest in England. King’s has more than 29,000 students (including more than 12,800 postgraduates) from some 150 countries worldwide, and some 8,500 staff.
King’s has an outstanding reputation for world-class teaching and cutting-edge research. In the 2014 Research Excellence Framework (REF), eighty-four per cent of research at King’s was deemed ‘world-leading’ or ‘internationally excellent’ (3* and 4*).King’s Strategic Vision looks forward to our 200th anniversary in 2029 and sets out our ambitious plans in five key areas: educate to inspire and improve; research to inform and innovate; serve to shape and transform; a civic university at the heart of London; an international community that serves the world. More information: https://www.kcl.ac.uk/about
The Cicely Saunders Institute is the world’s first purpose-built Institute for Palliative Care and Rehabilitation, named after Dame Cicely Saunders (1918–2005), recognised internationally as the founder of the modern hospice movement 50 years ago. The Institute is a partnership of Cicely Saunders International, King’s College London and associated local clinical services to bring together clinical and academic teams to innovate, discover, evaluate, and translate solutions
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 researchers 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 Marie Curie, the Wolfson Foundation, Cancer Research UK, and the British Heart Foundation.
About the University of Cambridge
The mission of the University of Cambridge is to contribute to society through the pursuit of education, learning and research at the highest international levels of excellence. To date, 109 affiliates of the University have won the Nobel Prize.
Founded in 1209, the University comprises 31 autonomous Colleges and 150 departments, faculties, and institutions. Cambridge is a global university. Its 19,000-student body includes 3,700 international students from 120 countries. Cambridge researchers collaborate with colleagues worldwide, and the University has established larger-scale partnerships in Asia, Africa, and America.
The University sits at the heart of the ‘Cambridge cluster’, which employs more than 61,000 people and has in excess of £15 billion in turnover generated annually by the 5,000 knowledge-intensive firms in and around the city. The city publishes 316 patents per 100,000 residents.
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