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New end-of-life care quality measures are needed to ascertain whether patients are receiving ‘good’ care in all settings not just at home, a new study recommends.
Researchers from the University of Cambridge’s Primary Care Unit looked at 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.
In the UK end-of life care is provided in many different settings and by a wide range of health and social care professionals including hospitals, hospices, care homes and in patients’ own homes.
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.
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.”
Challenge of measuring quality in end-of-life care
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.
Dr Sarah Hoare, lead author, added: “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.”
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.