New research from Hull York Medical School drives advances in end-of-life care

• Marie Curie warns: Dying people left in pain at evenings and weekends
• Each year around three-quarters of a million emergency “out-of-hours” visits to A&E occur for people approaching the end of life
• 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. 

The research has been undertaken by Hull York Medical School at the University of Hull, King’s College London’s Cicely Saunders Institute, and the University of Cambridge.

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 services².

Of these, 27% of areas had no designated phone line at all, while 42% had only partial coverage out-of-hours³.

This is despite repeated recommendations to implement this service from The National Institute for Health and Care Excellence (NICE) over the last 10 years⁴.

Accessing vital medicines out-of-hours was also difficult with only 25% of areas having a pharmacy open throughout the night⁵.

This 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.

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."

To download the full research please go to Mind the gaps: understanding and improving out-of-hours care for people with advanced illness and their informal carers.

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

For more information and interview requests for case studies and the research team at King’s College London and Hull York Medical School please contact Senior PR and Media Officer Becky Pierce-Jones on becky.piercejones@mariecurie.org.uk / 07515 134417 or contact the Marie Curie press team on media@mariecurie.org.uk or 0844 893 2101.

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 (PDF). Better End of Life 2022 Research report. London (UK): Marie Curie.

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 (PDF). Better End of Life 2022 Research report. London (UK): Marie Curie.

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 (PDF). Better End of Life 2022 Research report. London (UK): Marie Curie.

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.

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 (PDF). Better End of Life 2022 Research report. London (UK): Marie Curie.