Terminally ill dying in pain out of hours in Scotland, charity warns

Terminally ill people in Scotland are dying in pain as they struggle to access essential care at home during evenings and weekends, a charity has warned.

New research has found out-of-hours care is often “inadequate and fragmented” and that many patients are resorting to attending at accident-and-emergency (A&E) departments when care in the community is not available.

The UK study, funded by end-of-life charity Marie Curie, found there were more than 130,000 visits to A&E in Scotland by people in the last year of their life in 2020, and that more than 80,000 of these happened out of hours.

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These visits increased dramatically in the final three months of life, suggesting people were unable to get the care and support they needed at home.

A terminally-ill resident holds a health worker's hand. Picture: Getty Images

Marie Curie is calling for better palliative care in the community, including out-of-hours, to help improve quality of life for dying patients and reduce pressure on the emergency services.

Amy Dalrymple, Marie Curie associate director of policy and public affairs in Scotland, said: “This research paints a bleak picture of out-of-hours care in many areas across Scotland, 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.”

Marie Curie said every area should have a designated 24/7 palliative and end-of-life care telephone line staffed by experienced palliative care professionals.

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The study, titled Better End Of Life 2022, also found out-of-hours emergency visits to hospital were higher among people living in the more deprived areas compared to people living in the less deprived areas.

Researchers found a very high rate of emergency department attendance among men aged under 65 living in deprived areas in Scotland, which they said needs further exploration.

The research was based on analysis of data on out-of-hours emergency department attendances during the last year of life for people who died in 2020 in Scotland, England, Wales and Northern Ireland.

It also involved 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 was carried out by King’s College London, Cicely Saunders Institute, Hull York Medical School at the University of Hull, and the University of Cambridge.

Professor Katherine Sleeman, from King’s College London and lead researcher on the Better End of Life programme said: “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.”

The Scottish Government has been asked for comment.

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