That’s because in the UK and elsewhere, end-of life care is provided in many different settings and by a wide range of health and social care professionals: in hospitals, hospices, care homes and in patients’ own homes.
The research team, led by Dr Sarah Hoare, evaluated the quality measures in use in the UK to assess end-of-life and palliative care. They found that none can compare care for all patients across the different settings and all care providers, limiting what’s known about quality of provision.
Quality measures that help define what ‘good’ looks like in healthcare are very important because they can help improve services, influence the allocation of resources and change the way that services are organised and delivered.
The research team conclude that new measures – or improved versions / combinations of existing methods – are essential to obtain data on quality of care for people approaching and at the end of their lives.
The authors emphasise that the most commonly used measure for end-of-life care in the UK is place of death. It records whether patients die in acute hospitals, care homes, hospices or at home, with ‘better’ quality assumed to be associated with death in non-hospital settings. But where a person dies gives no indication of the quality of care nor of patient experience.
The approach is based on the view that many people want to die at home and the assumption that care provided out of hospital, particularly at home, is necessarily better. But the pure fact of dying at home does not indicate optimal care provision. Suboptimal care is repeatedly reported in similar proportions across home, hospital and residential home settings.
Home can be the best place or the worst place to die.
Dr Sabine Best, Associate Director of Research at the end of life charity, Marie Curie, commented:
“New ways to measure the quality of end of life care are needed, that take into account that a good death is possible in every setting. If people wish to die at home, the system must try and honour that in a safe way.”
“But if home isn’t the right option, then it is imperative that their needs are still met and care is provided to a high standard. Leaders in all nations of the UK must ensure that the needs of dying people are prioritised in their health and care plans.”
The research team explored alternative measures, evaluating whether they would be applicable across all the different settings where patients receive end-of-life care.
They also considered whether the alternative measures would be relevant for all patients with a terminal diagnosis, irrespective of condition and whether they would be feasible to apply for all care providers without causing significant additional workload burden or costs: it’s not clear that current measures are feasible for staff to collect outside specialist palliative care settings. Finally, they discussed the extent to which current measures provide meaningful insight into end-of-life care quality.
We found that the measures of quality being used either don’t work for reporting care quality in non-specialist palliative care, are not viable for all settings or rely too heavily on the retrospective accounts of carers or families, which don’t always reflect patient experience.”
Place of death is feasible, reliable and easy to measure, but does not provide information on care quality. The fact that it’s still in use so widely reflects the known challenge of measuring quality in end-of-life care.”
– Dr Sarah Hoare, lead author
What’s needed?
Developing metrics (measurements) which are feasible for all patient groups and all care providers will mean building on the advantages of existing methods. It might be possible to combine metrics from across categories, or adjust existing metrics so that they work for all settings and all providers.
- End-of-life care quality metrics must be feasible, meaningful and applicable to all end-of-life care patients in all settings.
- There is a need to focus not on what is easily measurable, but on what is important to patients and those important to them.
- Measurement should be appropriately funded to ensure that it is undertaken by all providers in all settings, widening the current focus on specialist palliative care teams.
The research was funded by Marie Curie Design to Care, a service improvement programme, with support from the National Institute for Health and Care Research (NIHR) Applied Research Collaboration East of England (NIHR ARC EoE) at Cambridge and Peterborough NHS Foundation Trust.
Reference
Sarah Hoare, Bárbara Antunes, Michael Kelly, Stephen Barclay: End-of-life care quality measures: beyond place of death. BMJ Supportive and Palliative Care. 20 July 2022. doi: 10.1136/spcare-2022-003841
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Contact Lucy Lloyd, Communications, Primary Care Unit
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About the University of Cambridge’s Primary Care Unit
This research was conducted at the Primary Care Unit, which sits within the Department for Public Health and Primary Care at the University of Cambridge. We aim to reduce the burden of ill health through our research and teaching. We work to identify and target behaviours that lead to chronic disease, improve the early detection of disease and improve the quality of health services.
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