Terminally ill dying in pain out of hours
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 outof-hours care is often “inadequate and fragmented” and that many patients are resorting to attending at accidentand-emergency (A&E) departments when care in the community is not available.
The UK study, funded by endof-life charity Marie Curie, found there were more than 130,000 visits to A&E in Scotland by people in the final year of their life in 2020, and that more than 80,000 of these happened 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.
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.
The study, titled Better End Of Life 2022, also found out-of hours emergency visits to hospitalwere 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, outof-hours palliative and end-oflife 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.
The scottish government was contacted for comment on the findings.