Highlights of every European Association for Palliative Care (EAPC) Congress are the EAPC Researcher Awards. Awarded jointly by the EAPC and the EAPC Research Network (RN), these awards recognise and support the work of scientists and clinicians in the field of palliative care who make an outstanding contribution to research and clinical practice.
We talk to Erica Borgstrom, PhD, Senior Lecturer in End-of-Life Care and Medical Anthropology at The Open University, United Kingdom, about the research that has led to her winning the 2021 EAPC Post-doctoral Award.
What, or who, was your inspiration for a career in palliative care?
Erica Borgstrom: My career in palliative and end-of-life care research started when I worked with Stephen Barclay (an academic GP and honorary palliative care consultant) and Simon Cohn (a medical anthropologist) at the University of Cambridge. Prior to that I had done research on other topics that brought up issues of death (such as infanticide and homicide) and what it meant to value life. Seeing how committed Stephen was (and still is) to teaching medical students about palliative and end-of-life care, and reading how students were encountering this teaching, made me realise that I could bring my skills and interests to understand this field more. In doing so, I’ve been supported by both Stephen and Simon (as well as many others) over the years, which has enabled me to make a career out of my interests.
Can you tell us briefly about the research that has led to your winning this award and some of the main findings?
EB: For my doctoral research I examined how ‘choice’ is understood in end-of-life care policy and practice in England. This is predominately framed through advance care planning. I then set out to ethnographically observe how people encounter and do (or do not do) choice in this way. There were many interesting things that came from this study, but my key highlight is that people (that is patients, those close to them, and even healthcare professionals) do not regularly do choice (advance care planning) in the ways that policy envisions. There are many reasons for that, from finding time and the words to have certain conversations even down to how the forms are made (e.g. glossy paper is hard for people to write on). Importantly though, many people who were asked to make decisions about their future were doing so in a way that reflected concern for more than just themselves as an individual. I therefore argue for more relational ways of understanding how people approach the end of life. Whilst my research has focused on England, the findings have relevance beyond this setting by drawing attention to the range of, what some might consider mundane or everyday, elements that impact advance care planning and the need to take a more relational approach that reflects how people understand and live their lives.
Can you tell us about some of the creative ways that you’ve used insights from your work?
EB: I believe public engagement with research is really important and can be so much more than showcasing headline figures or snappy summaries (which both have their places as well). Working at The Open University has given me amazing opportunities to explore creative ways to do this. I’ve taken the findings and insights from my research to inspire several short films. Some of this work uses my research as a basis to create dramas that audiences can connect with in a way that helps them challenge their own presumptions and actions. An example of this is the ‘Life or Death Decisions’ film and associated educational interactive on OpenLearn. Others – like the BBC Ideas film ‘Should everyone have an ‘end of life’ plan?’ – illustrate that there are nuances in how people think and talk about advance care planning and why they are motivated to do it (or not). During 2021, with a colleague Sharon Mallon (a sociologist), I’ve used my knowledge about experiences of dying and grief to create a community space within the university that acknowledges people’s experiences of loss during the pandemic. We’ve collated these and supported contributors to write pieces to reflect their experiences; these are published as ‘Narratives of COVID – Loss, dying, death and grief during COVID-19′.
From your anthropology perspective: What is so interesting about palliative care? How can we encourage more young anthropologists to undertake research in palliative care?
EB: There is a long history of anthropologists studying health and illness as well as death and dying, including palliative and end-of-life care. Some of these have sought to understand palliative care (or individual field sites, such as hospices) as specific cultural spaces. For me as an anthropologist, palliative care is fascinating because at its core, there is a sense of shared values about care, life and death, and at times these go unquestioned. Yet, they are also the site of some of the tensions within and beyond the profession (or field, depending on how one is defining it). Such as who should be providing palliative care? What does ‘good’ or ‘quality’ look like, and who is defining this with what consequences? What happens when palliative care values ‘rub up against’ (as I’ve heard in my research) other priorities or perspectives? Palliative care lends itself to many questions, and because it is also shifting and evolving over time, it is one that lends itself to new research over time.
To encourage more anthropologists to study palliative care, over the past few years, I’ve supported the Social Science End of Life Care network. We collaborate predominately over email and occasional workshops; people can email me if they are interested in joining. Part of this is figuring out how to do research (e.g. what kinds of methods, what kinds of questions), as well as how to balance being at the margins or intersections of academic disciplines.
From my experience, there is an interest out there from anthropologists, but it can be difficult to ‘get in’. Things that could also encourage more anthropologists are structural and about the practices within the palliative care research community. Such as funding for this kind of research and/or hiring social scientists on research projects and giving them space to write more anthropological and sociological pieces. Another element is the active promotion and engagement with the research and researchers that exists. This signifies that this kind of work is valued and that their anthropological interests have space within palliative care.
If you could recommend one anthropological text about palliative care for others to read, what would it be?
EB: It is hard to narrow it down to just one, but I really appreciate the work of Sharon Kaufman. She’s an anthropologist based in California who studies end-of-life care in America. In her book ‘Ordinary Medicine’ she does an amazing job to show how social, economic, and bureaucratic forces shape what treatment is possible and made desirable within the American healthcare system. This raises many questions about what standards of treatment and care, how they are created, and as she says, where do we draw the line between life-giving treatment and overtreatment. This type of question is something that comes up a lot in my research within palliative care.
What does winning the EAPC Post-Doctoral Award mean to you?
EB: It feels like such an honour to have my work – which is grounded in the social sciences and therefore often at the margins of palliative care research – to be recognised with this award. Sometimes the direct findings and impact of the work I do is less tangible than other types of projects, and receiving this award signifies that the EAPC acknowledges and values a diversity of research approaches.
Let’s talk about life outside of palliative care: What’s your favourite novel?
EB: One of my favourite books is ‘Looking for Alaska’ by John Green. There is something about the characters searching to know themselves and each other that I find appealing. It’s one of those books where the feelings it generates in me linger, even the sadness. More generally I like all the books written by John Green and Hank Green (plus, I am totally into their vlogbrothers YouTube videos as they are both so thoughtful about life and this is reflected in their work).
Important reminder for all registered delegates to EAPC 17th World Congress
Erica’s presentation, ‘English Palliative and End of Life Care: Several Observations from an Anthropologist’, is available for registered delegates to view online on the congress platform until 31 January 2022. Login with your password here.
Everyone can view the Abstracts from the EAPC 17th World Congress 2021, Palliative Medicine, volume: 34, issue 1, suppl, page(s):1-243. https://doi.org/10.1177/02692163211035909
- Find more information on Erica Borgstrom here.
- Follow Erica on Twitter @EricaBorgstrom
- View more posts relating to the EAPC 17th World Congress Online, including interviews with Dr Bárbara Antunes, winner of the 2021 EAPC Early Researcher Award, and Professor Harvey Max Chochinov, winner of the 2021 EAPC Clinical Impact Award.
SUBMIT YOUR ABSTRACT NOW FOR EAPC 12TH WORLD RESEARCH CONGRESS 18 to 20 MAY 2022. Deadline: 16 October 2021…