Care at the end of life - with Erica Borgstrom
Episode 9 of Careful Thinking
My guest on the ninth episode of the Careful Thinking podcast is Erica Borgstrom. Erica is a colleague of mine in the School of Health, Wellbeing and Social Care at The Open University here in the UK. She’s a Professor of Medical Anthropology at the university, where she leads Open Thanatology, an interdisciplinary research group for the study of death, dying, loss and grief across the life course.
Erica is also editor of the international interdisciplinary journal Mortality and one of the editors overseeing the Death and Culture book series for Bristol University Press. Her doctoral research at the University of Cambridge ethnographically examined English end of life care from policy to practice to everyday experiences, focusing on choice and advanced care planning. With Simon Cohn and Annelieke Driessen, Erica worked on the Forms of Care project, which sought to critically understand what not intervening looks like and how we can appreciate such non-actions as care. With a range of collaborators across a number of projects, Erica has also examined how palliative and end of life care are provided in various contexts, including in acute hospital settings, in hospices, and through doula provision. Erica is the author or co-author of many articles and book chapters. She has co-edited two collections on research methodology, Researching Death, Dying and Bereavement and Unpacking Sensitive Research: Epistemological and Methodological Implications, and she co-edited the collection Narratives of COVID: Loss, Dying, Death and Grief during COVID-19.
Although I’ve known Erica as a colleague for some years, we’ve never worked together directly. So although I’ve been aware, in a general sense, of Erica’s important research on palliative and end of life care, I’ve never actually had a proper chance to talk to her about it. So I really valued this opportunity to explore Erica’s work with her in some depth.
Erica Borgstrom
Our conversation began with a reflection on how Erica’s anthropological studies led her to an interest in end of life care, and how her international background, growing up in America, studying in Germany and living in England, has given her a unique perspective on diverse cultural practices around death and dying. We spent some time discussing Erica’s doctoral research, which problematised the rhetoric of ‘choice’ in end of life care, and argued for placing relationality, and particularly family relationships, at the heart of care for the dying. These themes have echoed throughout Erica’s later research, which we also discussed, and we also talked about her critiques of public policy around end of life care, focusing firstly on her analysis of the discourse around ‘compassionate care’, and then on her study of the controversial Liverpool Care Pathway.
We moved on to discussing the ‘Forms of Care’ project, its examination of the ethics of non-intervention in palliative care, and its intriguing exploration of the tension between treating the patient as ‘human’, focusing on their physical health, and treating her or him as a person, taking into account their spiritual wellbeing and relational context. The final stages of that research project coincided with the beginnings of the pandemic, and we talked about how this impacted care for the dying, which was a useful segue into discussing Erica’s co-edited collection of narratives exploring experiences of loss during Covid-19. In the final section of our conversation, Erica provided insights into the work of the Open Thanatology group at The Open University, highlighting its important role in public education around death and dying.
There were obvious connections between this episode and the previous episode of the podcast, in which I spoke with Carlo Leget about his work in the field of spiritual care, which also had a focus on care at the end of life. Carlo’s perspective is that of a care ethicist who is also involved in developing models for use in everyday practice, whereas Erica is an anthropologist by training who uses ethnographic methods to shine a critical light on existing policies and practices. However, there were some clear similarities between Erica’s and Carlo’s approaches, for example in their shared emphasis on the crucial part played by relationality, and especially family relationships, in care for the dying. My discussion with Erica of her work on ideas of patienthood and personhood also echoed Xavier Symons’ emphasis, in Episode 2 of the podcast, on maintaining the ‘inherent and inalienable dignity’ of the human person towards the end of life (see also this post).
Here are a few extracts from Erica’s contribution to the episode, to give you a taste of our conversation:
Why would you want to problematise choice, particularly patient choice, in a country that values patient autonomy in healthcare and generally neoliberal notions around the individual being to exercise their own autonomy and that they have agency? So one of my issues with choice in the context of palliative and end of life care, particularly at the time I was doing my research...was there were actually very clear, when you unpick some of the discourses, limits to choice in the context of end of life care, it wasn't that someone can have a choice about anything. People couldn't necessarily choose to have interventions, they could choose to decline something. There was also no choice around assisted dying... And so my problematisation with choice there is, on one hand, it sounds, in a way very noble, and that we're giving people, you know, what they want towards the end of life. But actually it was quite constrained choice.
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That rhetoric and discourse around compassionate care was really focusing on the value that people attach to the notion of compassion as a good thing, rather than actually interrogating how care is sometimes really undervalued in the system, and how what people actually find compassionate in terms of care, such as spending time with someone, is financially undervalued in the care system as well. And so we were kind of pointing out, it's nice to say these things, but unless you really have a shift in terms of the structures, trying to emphasise compassionate care in a healthcare system without making huge changes underlying how healthcare is delivered and thought about, isn't necessarily going to meet that compassionate care. And then also…the discourse, was focusing a lot on, again, a more patient-oriented model, just like the choice one was, rather than thinking about also how compassion is relational and also requires looking after the people who are providing that care and how we think about them and care for them, and not just see them as mechanisms for care delivery.
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One of the things that I've always been amazed by when I research palliative and end of life care and spend a lot of time, particularly with palliative care practitioners, is how strongly they try to hold on to not just reducing a person, a body, to physical functioning. And so palliative care will often talk about being quite holistic and thinking about the social, the psychological, the spiritual. And so the patient as person is often attending to how the palliative care team are trying to hold on to that holism. And so we would see cases of where they might make decisions that prioritise someone spending time with other family, or doing certain spiritual practices that might not be the best medical clinical advice in terms of the bodily functioning, but allowed them to exert their personhood in a different way and in a way that they valued, or the people around them really valued... But I think there's particular tensions for palliative care, in that it wants to hold onto this holism of looking after this person in a very social, psychological, spiritual, as well as physical way. But it operates predominantly in a healthcare system that's going to prioritise the physical and reward activities that prioritise that more clinical nature.
You can listen to the whole episode here, or wherever you get your podcasts.
You can download a transcript of the episode here:
Afterword
Shortly after this episode was recorded, the BBC/Open University documentary, Better Off Dead, was broadcast, in which actress and disability activist Liz Carr explores the issue of assisted suicide. Erica was one of the academic advisers to the programme. Since assisted dying has featured in a number of earlier episodes of the podcast (and in fact in my last post I linked to an article about Liz Carr), I wish I’d asked Erica about the making of the programme during our conversation. Perhaps I’ll invite her back to talk about it, or maybe schedule an episode featuring different voices and perspectives on this controversial topic? In the meantime, I warmly recommend the documentary, in which Carr makes a highly personal and impassioned argument that legalising assisted dying constitutes would threaten the rights - and lives - of disabled people. You can access the programme via BBC iPlayer.