Dying people left in pain at evenings and weekends Marie Curie warns

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.

There are over 56,000 emergency visits to A&E each year in Wales by people in their last year of life and 30,000 of these happen out-of-hours. These visits increase dramatically in the final three months of life, suggesting people are unable to get the care and support they need at home.

The research also found higher out-of-hours A&E attendance rates for women aged under 65, who live in more deprived areas of Wales, in their last year of life.

Half of the areas surveyed in Wales did not provide a 24/7 designated telephone line for people at the end of life that can connect them quickly and easily to local services, despite repeated recommendations to implement this service from the National Institute for Health and Care Excellence (NICE) over the last 10 years .

UK-wide figures show that in 78% of the areas surveyed, nursing services were not consistently available to dying people overnight at home, despite more than 75% of the week falling “out-of-hours”, which is defined in the research as being after 6.00pm and before 8.00am Monday to Friday, at weekends and on bank holidays.

Access to vital medicines out-of-hours was also difficult with only 25% of areas across the UK having a pharmacy open throughout the night.

The research, featuring in the charity’s Better End of Life Report , adds to a growing body of evidence about issues with access to overnight and weekend care for dying patients and their families in Wales.

This has led to Marie Curie to describe the situation as “bleak,” adding that it “cannot tell people to die during office hours” to get the care they need.

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

While the charity has welcomed the recent publication by the Welsh Government of its Quality Statement for palliative and end of life care [8], it stresses the need for a more detailed action plan which ensures patients can get the care they need, when and where they need it.

Marie Curie is calling for:

• A 24/7 telephone line within each health board in Wales to ensure palliative care services have a single point of access for dying people and their carers, no matter the day or time
• A long-term action plan led by Welsh Government to improve end of life care
• The Welsh Government to tackle the deep inequalities facing women in palliative and end of life care by prioritising it as an action in the forthcoming 10-year Women and Girl’s Health plan

Darren Lawrence’s father Graham Lawrence, from Port Talbot, had mesothelioma due to asbestos exposure and died in April 2022.

“My dad wanted to die at home. That was the plan we’d agreed with the GP. But he ended up being admitted to hospital.

“Nobody in the hospital knew what was going on and his pain wasn’t being managed properly. I came in one day to find him in a chair with a pillow over his head, screaming into it.

“My Dad went into a hospice. He was there for four days before he died. He should’ve been in there for a week. They said the delay was because of Easter, but that’s not good enough. You can’t choose when you become terminally ill.

“As far as I can see, the system doesn’t work. My dad fell through the cracks. If he hadn’t had me advocating for him, I don’t know what he would have happened.

“If there was a dedicated helpline, it would be so much easier. The way it works now makes it impossible to check on the progress of anything or find out who you need to speak to.

“In the last 48 hours, Dad was comfortable in the hospice, but in the weeks leading up to that point, he was in extreme pain and without dignity. That shouldn’t happen to anybody.”

Natasha Wynne, Marie Curie Cymru Senior Policy Manager said:

“The situation is bleak but we cannot tell people that they need to die during office hours to get the care they need. The lack of support out-of-hours causes unnecessary distress to patients and families and can lead to upsetting and avoidable emergency admissions which increase pressure on an already stretched NHS.

“It is particularly concerning that younger women from the most deprived areas of Wales are more likely to need emergency visits to A&E as they approach the end of life. We need to understand why this is the case so they can be better supported.

“There is a real opportunity in Wales to sort out the problems with out-of-hours care through the implementation of the recent palliative and end of life care Quality Statement. This says that everyone, regardless of where they live, should have 24/7 single point of access to co-ordinated care, medication, and advice about end-of-life care.

“No one should feel like they’ve got nowhere to turn to for help with pain or other symptoms when they’re approaching the end of life. A dedicated 24/7 palliative care phoneline would offer crucial support to patients and their carers.

“We need to see action so that warm words become reality, and high-quality care is available for dying people and their families wherever they live and whenever they need it.”

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, the 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’ and 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.”