A charity has warned that terminally ill people in Scotland are suffering before death due to struggles accessing essential care at home during evening and weekends. The UK study, funded by end of life charity Marie Curie, found that out-of-hours care is often "inadequate and fragmented", with many patients resorting to attending emergency departments when care is unavailable.
There were over 130,000 visits to A&E in Scotland by people in the last year of their life in 2020, with more than 80,000 of these happening out of hours. 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. The charity has called for better palliative care in the community, including out-of-hours, so the quality of life for dying patients can improve, and pressure on emergency services will reduce.
Marie Curie associate director of public affairs in Scotland, Amy Dalrymple, 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.
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“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.”
The study, titled Better End Of Life 2022, additionally found out-of-hours emergency visits to hospital were higher among people living in more deprived areas. Continuing in terms of demographics, researchers also found a very high rate of emergency department attendance among men aged under 65 living in deprived areas in Scotland, which Marie Curie say needs further exploration.
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.”
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