Better research leads to better practice to support people at the end of life

Tomorrow, 1 March, marks the start of the annual Marie Curie Great Daffodil Appeal, as the charity celebrates its 30th year of raising vital funds to support people with terminal illness. A key priority is to fund and support high quality research into clinical, social and service delivery to ensure evidence informs both clinical practice and policy, helping to deliver a better life for everyone living with any terminal illness, and their families, carers and friends. Dr Louise Jones, former head of the Marie Curie Palliative Care Research Department at UCL, retires this April after almost 10 years leading the team, and 23 years with Marie Curie. Here, she reflects on the importance of the charity’s investment in palliative and end of life care research.

Dr Louise Jones

Dr Louise Jones

How to conduct meaningful and rigorous research on people who are sick, vulnerable and facing the only event in life that is common to all – death? This question has challenged palliative care specialists since the European Association for Palliative Care was formed almost 28 years ago.

In the UK, much palliative care is supported by voluntary organisations. Marie Curie relies on public generosity to fund its nine hospices, associated multidisciplinary staff, and community nursing service. March 2016 marks the thirtieth year of Marie Curie’s month long Great Daffodil Appeal when public awareness of the charity is heightened and much money is raised. A key priority is the funding and support of high quality research into clinical, social and service delivery issues of relevance to those facing the approach of death from any condition.

I began working with Marie Curie in 1993. From an academic medical background, my job was to bring together clinicians in the hospice sector and academics at the local university to build expertise. We worked with experts from medicine, nursing, psychiatry, epidemiology, theology, primary care, statistics, health economics, sociology and anthropology. Blending these skills, we could bring rigorous standards to our methods to address some of the trickiest research questions. We tackled areas such as spirituality, sexuality, and support for carers, continuity of care, the effects of morphine on memory, and the development and testing of complex interventions in complex conditions.

Winchester Growers – supporters of Marie Curie’s Great Daffodil Appeal

Winchester Growers – supporters of Marie Curie’s Great Daffodil Appeal

Marie Curie has responded creatively to the need for an academic approach in palliative care. In 1999, a research team was established at University College London, which I led from 2005, and teams grew up in Liverpool and Cardiff. There are now also five research leads based in Marie Curie funded hospices around the UK. The model is to work with experts across disciplines, harnessing expertise to address questions of importance in care and treatments for people approaching death and their families.

I retire in April 2016, and Professor Paddy Stone now leads the Marie Curie Department at University College London. Recently assessed through quinquennial peer review, the team is embarking on an ambitious programme exploring prognostication, sedation monitoring, advanced liver disease and palliative care for the homeless.

Over the past 20-30 years, palliative care research has matured. In the UK, with the James Lind Alliance, Marie Curie has led a national consultation with the public on research priorities. It is now investing more than £1 million per year via open research calls, as well as funding its centres in London, Cardiff and Liverpool, and hospice research leads. Better research leads to better practice, more reflection on the quality and relevance of the care we deliver, and a stronger workforce. We can all benefit from this, as we shall all die.

View more information about the Marie Curie Palliative Care Research Department

The Great Daffodil Appeal is the charity’s biggest annual fundraising campaign in March when people make a donation in return for a daffodil pin. All money raised helps people living with a terminal illness and their loved ones. For more information, please visit the Marie Curie website

Winchester Growers – supporters of Marie Curie’s Great Daffodil Appeal

This entry was posted in NATIONAL & INTERNATIONAL REPORTS, RESEARCH and tagged , . Bookmark the permalink.

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