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.”
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.”
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.
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.”
Download the full research here.
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 the Marie Curie website.
- 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.