Shaping the future of palliative and end of life care research

Open University (OU) researchers are working with Marie Curie, the UK’s leading end of life charity on the future research agenda for palliative and end of life care. This field is often underfunded, reflecting how dying as a topic can be socially stigmatised and avoided.

Erica Borgstrom, Professor of Medical Anthropology in the OU’s Faculty of Wellbeing, Education and Language Studies, an expert in end-of-life care and death studies, has led a project on how social science and humanities perspectives can inform palliative and end of life care research.

Dr Mari Greenfield, research fellow at the OU, has worked alongside Erica and was supported to be the lead author of the project report; together they collaborated with researchers at the University of Warwick and Marie Curie.

The report drew together insights from researchers to identify key research areas for social sciences and humanities. It was based on over 1,000 ideas for palliative and end-of-life care research provided by people affected by serious life limiting illness.

The report outlines five research areas for funders and researchers to focus on, with an emphasis on how multi-disciplinary research is needed to fully understand dying and improve end of life care. The report compliments the ‘refresh’ of the James Lind Alliance Priority Setting Partnership priorities for palliative and end-of-life care research that are also being launched by Marie Curie in February 2025.

Professor Borgstrom said:

“Using these research areas to inform project design and funding decision making will support the development of the palliative and end of life care field by providing insights into the social and cultural contexts that impact dying and care.

“Improving health and social care is not straightforward, and dying is often considered to be a ‘difficult topic’. Palliative and end of life care research must engage with multiple perspectives if it wants to have traction in current contexts.”

Read the full report: To Know Dying: Identifying Research Areas in Palliative and End-of-Life Care for the Social Sciences and Humanities