Research in palliative and end of life care is lacking. Less than 1% of the £500 million in research funding that was coordinated by the National Cancer Research Institute (NCRI) in 2012 was spent on palliative and end of life care research.
The situation is slowly changing. Increasingly, funders are realising that there is a need for research into how we die. The James Lind Alliance undertook an extensive public and professional consultation in order to set research priorities. Based on this, the NIHR have produced a Themed Review of existing research, and calls for projects that seek to improve the quality of end of life care. Marie Curie continue to extend and expand their research capacity, through investment in palliative care research centres in London and Cardiff, establishment of open competitive funding streams to the order of around £1million annually, working alongside partners such as the Motor Neurone Disease Association and the Chief Scientist Office. The charity also invested in Research Leads within their hospices in Glasgow, Edinburgh, Belfast and Solihull. Recently, the Marie Curie Bradford hospice was successful in their bid to develop a collaborative post between the University and the hospice. I recently joined this team of Research Leads as a Clinical Academic Research Fellow, based both at the Marie Curie Hospice, and at the Faculty of Health Studies.
Central to my role is the facilitation of an active and curious research culture within the hospice, working towards a research strategy. Recent research has found variation in the extent to which hospice staff make use of and engage with research, and in attitudes towards it. There are also concerns that hospices often work in isolation on initiatives and that there is a need to develop and strengthen communities of learning and practice.
One of my first tasks is to work on developing a local Research Active Hospice Framework, using data from a staff survey and a planned focus group series to identify local priorities. The strategy will include development of journal clubs (both online and face-to-face) and research seminars, and education on research methods.
I also offer support and supervision for students wishing to undertake primary research or systematic reviews that relate to palliative and end of life care, and are actively seeking to develop an interdisciplinary focus.
It is often assumed that people with advanced life-limiting disease will feel burdened if asked to participate in research. However this is not borne out in the research and in fact many people approaching the end of life are keen to get involved in a range of studies. I will therefore be exploring the feasibility of the hospice as a potential site for recruitment to studies. This will include establishment of a committee for the approval and governance of research in order to protect the wellbeing of staff, patients and those important to them who may wish to participate in research.
In terms of developing and strengthening local and regional collaborations, I will continue to chair the Bradford, Airedale, Craven and Wharfedale Palliative and End of Life Care Research Forum, that meets bimonthly to support end of life care in research across institutional and organisational boundaries. One of the areas in which we are particularly keen to develop links is with people working in dementia research, especially studies looking at care in the advanced stages of dementia and around bereavement. The Research Forum is open to anyone interested in end-of-life care research. Current research projects include:
- Continuing Bonds, an AHRC funded study exploring the meaning and legacy of death through past and contemporary practice
- A Hospice-based Day Therapy Motor Neurone Disease Clinic – evaluating impact on quality of life
- Hospice patient views on Corneal Donation
- A hospital ethnography of older person’s care in an acute hospital
If you would like more information about any of the projects, or wish to join the End of Life Care Research Forum or present your research at one of our meetings, please get in touch at L.Middleton-Green@Bradford.ac.uk
Marie Curie Research Fellow in Palliative and End of Life Care
University of Bradford