Introduction Death and dying are not 9-5 activities. When a crisis starts out-of-hours (OOH) patients may not be identified as having palliative care needs and are disadvantaged in a frantic system. Whether they die today or another day, they must navigate a complex and confusing process to seek help.
Aims To analyse the NHS out-of-hours care system for patients in their last year of life and to understand the consumer perspective.
Method Systems approach. We analysed 5 routine national datasets: 24-hour telephone advice service, primary care OOH, ambulance service, A&E, and emergency admissions for everyone who died in Scotland in 2016. We also integrated interviews and focus groups with 58 patients and bereaved carers from three contrasting regions in 2018.
Results All 5 services had an exponential monthly increase in usage during the last 12 months of life. People with different illness trajectories, deprivation categories, places of care, and those with care plans used significantly different volumes and patterns of services. Patients were sometimes admitted because timely safe care was unavailable in the community. OOH care in the community costed only 4% of hospital based care
Conclusion For many, the last year of life can feel like a car chase from James Bond with the end always uncertain. Opportunities for a palliative care approach were lost for most patients. More care planning started in-hours and shared with urgent and emergency services would decrease A&E usage and emergency admissions. Better resourcing of unscheduled community services would provide safer, more responsive, high-value low-cost care. Routine OOH clinical datasets lack a variable identifying people with a terminal illness which might allow them to come to rest before they die.
Impact This systems approach has generated research interest in defining the volume and quality of services for people with advanced illnesses. Patients who are terminally ill need urgent and emergency services fit for purpose for dying so that they can live, and let die well.
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