Terminally ill people are struggling to access essential care at home during evenings and weekends, according to new research from King’s College London, Hull York Medical School and the Primary Care Unit at the University of Cambridge. Marie Curie, which funded the research, warns that the findings mean that people are dying in pain.
In 78% of the areas surveyed in the 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”.
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.
Of these, 27% of areas had no designated phone line at all, while 42% had only partial coverage out-of-hours.
This is despite repeated recommendations to implement this service from The National Institute for Health and Care Excellence (NICE) over the last 10 years.
Accessing vital medicines out-of-hours was also difficult with only 25% of areas having a pharmacy open throughout the night.
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.
The research has led the end of life charity, Marie Curie, 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. 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”.
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”.
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 that services are often available in principle, but the research revealed large gaps between what was technically available and delivery ‘on the ground’. She added: “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.
Read the research report
Pask S, Davies JM, Mohamed A, Leniz J, Chambers RL, McFarlane P, Bone AE, Barclay S, Higginson IJ, Sleeman KE & Murtagh FEM (King’s College London, Cicely Saunders Institute; Hull York Medical School at the University of Hull; and University of Cambridge, UK). Better End of Life 2022. Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers. Research report. London (UK): Marie Curie. (November 2022)
Queries: Lucy Lloyd, Communications, Primary Care Unit