On virtually all international indices of development, hospices in the United Kingdom are highly rated except in relation to research. A new report from a team based at the International Observatory on End of Life Care has found that British hospices are not contributing sufficiently to the evidence-base in palliative care for a number of reasons.
These include a lack of research capacity, resources and infrastructure. So why does this matter? Surely, hospices should concentrate on their primary function which is offering high quality care to patients nearing the end of life and supporting their families.
However, this argument fails to recognise that evidence is essential to inform and improve clinical and social care – this was recognised by the NHS over 30 years ago – and to ensure that services are designed and delivered in ways that meet patients’ needs, use resources effectively and efficiently. Moreover, as hospices need to obtain contracts to deliver services with Clinical Commissioning Groups in the NHS, the provision of rigorous evidence is increasingly required. No longer can hospices assume that their care is good, because of the grateful thanks for those few people able to secure hospice care. The recent review of the Liverpool Care Pathway – a method of delivering care in the final days of life – extensively criticised the lack of rigorous research and evaluation before its widespread adoption in British hospitals. Within this context, the question therefore should be: Can hospices afford not to be involved in research?
The research team led by myself included Dr Nancy Preston, Dr Mary Turner and Dr Liz Rolls who were invited to undertake a rapid review and research study to inform the Commission into the Future of Hospice Care. We drew upon a number of previous studies as well as consulting widely with key stakeholders across the country. The report highlights both barriers and opportunities. We identified 20 substantial barriers. These included a culture that failed to understand or value research and in some cases, was hostile to research. Hospice trustees and managers did not know how to support staff who wanted to do research and allocate resources appropriately. As small independent organisations, hospices tended to lack partnerships with other hospices and academic centres. Finally ethical and research governance processes designed for the NHS, often left hospice staff in an ambiguous and difficult situation.
We developed a new three tier framework for building research capacity and research engagement within hospices which takes account of the small size of many organisations and their limited resources. It also advocates for increasing the number of research-active hospices that have the capacity to design and conduct large scale studies, so that care for the dying can be improved. In addition, we suggest the formation of regional Hospice Research Hubs built upon a model pioneered at Lancaster University, which can form supportive networks to facilitate research and offer mentorship. More importantly we offered potential solutions which are framed in a much broader context than merely for those working within or managing hospices, as the NHS and University sectors are potential key players in new partnerships.
All the 35 recommendations made in the report have been endorsed by the Commission. The report will be launched today at the Help the Hospices conference in Bournemouth, where I will be leading a session on research in hospices. Undertaken research with people near the end of life and their families will always require sensitivity and be methodologically challenging but we hope our report will inspire hospice leaders to become champions for research in the future.
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