Care at the end of life - with Erica Borgstrom

In what sense are death and dying relational experiences? Why is 'choice' a problematic concept in end of life care? And when might a decision not to intervene be viewed as a form of care?

These are some of the questions we explore in this episode, with Erica Borgstrom. Erica is a Professor of Medical Anthropology at The Open University, where she leads Open Thanatology, the university’s interdisciplinary research group for the study of death, dying, loss and grief across the life course. Erica is editor of the international, interdisciplinary journal Mortality and one of the editors overseeing the book series Death and Culture 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 advance care planning. With Simon Cohn and Annelieke Driessen, Erica worked on the Forms of Care project, which critically examined non-intervention in end of life care. With a range of collaborators across projects, Erica has also explored how palliative and end of life care are provided in various contexts, including in acute hospital settings, hospices, and through doula provision. Recently, one of Erica’s main research projects has been focused on understanding how people interpret and use the Ambitions Framework for Palliative and End of Life Care, a project funded by NHS England and Marie Curie. 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. With Sharon Mallon, she co-edited the collection Narratives of COVID: Loss, Dying, Death and Grief during COVID-19.

We discuss the following topics in this episode:

The origins of Erica's academic interest in end of life care (03:02)

Erica's international background and its influence on her thinking about palliative care (04:35)

Erica's doctoral research on choice in end of life care (08:38)

Family practices and relationships at the end of life (13:25)

Critiquing the 'compassionate care' discourse (16:55)

Ethnographically analysing the Liverpool Care Pathway (20:46)

'Non-intervention' as a form of care (27:15)

The patient as human versus the patient as person (29:33)

Intimacy and proximity in the context of a global pandemic (34:03)

Loss, dying, death and grief during COVID-19 (37:15)

Research and education on death and dying at The Open University (42:12)

Erica's plans for future research (46:11)

Links to some of Erica's publications

'Planning for death? An ethnographic study of choice and English end-of-life care' (PhD thesis)

'"We don't want to go and be idle ducks": family practices at the end of life'

'Choice and compassion at the end of life: A critical analysis of recent English policy discourse'

'Standardising care of the dying: An ethnographic analysis of the Liverpool Care Pathway in England and the Netherlands'

'Human and person when life is fragile: new relationships and inherent ambivalences in the care of dying patients'

'Ways of "being with": Caring for dying patients at the height of the Covid-19 pandemic'

Open University links

Open Thanatology Hub at OpenLearn

K220 Death, Dying and Bereavement

Some of the researchers and writers mentioned in the episode:

Julie Ellis

Kate Woodthorpe

Tony Walter

Natashe Lemos Dekker

Simon Cohn

Annelieke Driessen

Sharon Mallon

For a transcript of this episode, follow this link to the Careful Thinking Substack