When in February 2014, I heard the news that my application for a Wellcome Trust Investigator Award had been successful, I could scarcely have imagined what would follow over the next six years. The Trust is perhaps unique among funders in the incredible extent to which it gives grantees the scope and encouragement to think creatively and to be expansive in ambition. For this I am massively grateful. Now as my project draws to a close, I am in the process of curating its outcomes, and at the same time handing over leadership of the Glasgow End of Life Studies Group, the creation of which was made possible by the Wellcome Trust funding I received.
The Investigator Award (2015-20) was rather grandly entitled: Interventions at the end of life – social, comparative and historical analysis to promote global improvement. Over the years, the project has focussed on how interventions relating to end of life issues are developing around the world, and with what consequences, seeking to address the global challenges associated with ageing, population growth and growing pressures on services and systems, as well as changing belief systems and values.
Concepts and theories
In our conceptual work we have developed an innovative taxonomy of end of life interventions that provides a new road map for end of life research. We have used post-colonial and translation studies to make sense of the challenges of transferring interventions from one context to another. We have published papers on the concept of compassion, the relationship between public health and palliative care, and the wider cultural implications for dying and death when assisted dying is legalised. Likewise, the definition of palliative care has been an ongoing area of interest and we have also engaged in-depth with the concept of ‘total pain’. We also have a conceptual paper in the works on how palliative care engages with policy and with what effects.
Guided by these ideas and orientations, the Investigator Award has included empirical studies of end of life interventions from different parts of the taxonomy. Starting out with four case studies in mind, we have ended up with eight completed!
These include work on the Kerala model of community palliative care and its transfer to the state of West Bengal. We have published a range of papers on end of life ‘Declarations’ as tools for advocacy. One key study focuses on the global spread of the Death Café movement. Another examines the level of palliative care development in the 198 countries recognised by The United Nations, linked to a study of the 2014 World Health Assembly Declaration on Palliative Care and its early impact.
We have produced an important analysis of the rise and demise of the Liverpool Care Pathway in the UK and are working on an analysis of its dissemination to more than 20 other countries. We have worked on innovative models of housing with care and the needs of older people.
Our empirical work on assisted dying has focussed on what happens to palliative care in contexts where assisted dying is legal. We have explored this first through a systematic scoping review and then in an interview study in Flanders, Oregon and Quebec.
One huge opportunity provided to me by the Award was the space to first finish off To Comfort Always: a history of palliative medicine since the nineteenth century and then to embark upon and complete a full length biography of the acknowledged founder of the modern hospice movement, Cicely Saunders; a life and legacy
Both books were highly commended in the BMA Book Awards ‘Basis of Medicine’ category
Over the years we have been strongly committed to the wider sharing, dissemination and discussion of our work and the issues that interest us. This has taken many forms. We have run death cafes, film screenings, writing events, seminars, and curated exhibitions. Our work has been presented at science and book festivals, and pop-up settings of various kinds. We remain active on social media and this blog, which has proved hugely satisfying to tend and foster, has had more than 212,000 views over the six years since it began, with a rolling programme of new content that includes over 200 posts that has attracted 137,000 readers from 197 countries.
From the outset, we have shared the work of the Investigator Award with out own undergraduate students in the School of Interdisciplinary Studies at the University of Glasgow, through a course entitled Global Challenges at the End of Life, which is closely modelled on the themes of the project. Last year, working with FutureLearn, we went online and launched our first ‘MOOC’, on End of Life Challenges and Innovation, which on its initial run attracted a gratifying 3,600 learners from 132 countries. In September 2020, we commence a full, online postgraduate programme in End of Life Studies, including Certificate, Diploma and Masters’ options.
None of this could have been done without a team of remarkable colleagues and students, working together. Changing in composition and character over the six years, we have been a diverse group comprising social scientists, policy analysts, public health researchers, historians, creative writers and literature specialists, philosophers, clinicians and managers. Over time we have expanded to include colleagues and students funded from other sources, notably our GCRF project on the evaluation of Neighbourhood Networks in Kerala, and the Mitori Project, our ESRC funded collaboration with colleagues in Japan. Particularly memorable have been our collaborations with the Atlantes research group in Spain, and our work with with other colleagues in Bangladesh, Canada, the USA, Brazil, New Zealand, Norway and Denmark.
Interdisciplinary research on end of life issues is still relatively under-developed and under-funded. We have used our project to develop the careers of post-doctoral researchers, to enter into partnerships with institutions and colleagues around the world and we have a cohort of postgraduate research students undertaking related work and building their potential to become the researchers of tomorrow. We have also been delighted to bring undergraduate interns into our group, to enhance their knowledge and experience. And we have made strategic appointments funded by the University which build capacity beyond the lifetime of any specific grant and make us optimistic about future directions.
Qualities of the team
Like all teams, over the years we have had our ups and downs, our successes and failures . From the outset of the project, I characterised ‘how we die’ as a ‘contested space’ – and so it is perhaps unsurprising that we have had contestations of our own at times over research questions, methods, data collection and analysis, and the processes of multiple authorship. But we have worked hard – and succeeded – in creating a sense of community in the group. We have celebrated together on winning new research grants, on getting our work accepted by reviewers, on successful conference presentations, and on the production of excellent online content. And we have commiserated together and shared the pain when things have not gone so well. We meet regularly as a group, have picnics, and eat doughnuts. We welcome academic visitors from around the world and colleagues from local services and organisations. Some might even consider us a rather ‘cool’ group of people (myself excluded of course!).
The completion of the Wellcome Trust Investigator Award marks a sea change for me. I shall retire from academia in the autumn.
I am therefore delighted to announce that my colleague Dr Naomi Richards will now steer the ship on the next stage of its voyage, taking on the role of Director of the Glasgow End of Life Studies Group, from 1st March 2020. A respected anthropologist, end of life researcher, writer, educator, and curator of creative events, I can think of no more worthy person to take the helm. I wish Naomi and the whole team every success and fulfilment in the work that lies ahead.
And I thank the Wellcome Trust, once again, for making it all possible.