BAAL Health & Science Communication SIG Workshop
“Experiences of illness and death: learning from the discourses of realities and fictions”
“Any serious illness is a medical event, but it is lived in narrative terms” wrote Andrew Solomon in a recent article for The Guardian. This workshop will focus on these ‘lived’ and ‘narrative’ aspects of the experience of illness and death from a variety of disciplinary perspectives.
Accounts of illness and dying by patients, carers and healthcare professionals have been at the heart the medical humanities for several decades. They have been called upon to better understand patients and to enable patient-centered care, to improve training and empathy in healthcare professionals and to begin to assist those who informally support and care for the ill. They have been investigated from the perspectives of history, sociology, literature, the visual arts and, more recently, linguistics. At the same time, these disparate approaches and applications, have tended to leave the field somewhat fragmented. The aim of this workshop is to bring together researchers of different backgrounds who examine and use experiences of illness and death to discuss and explore the methods and applications that allow us to get the most out of these rich and powerful sources of evidence.
Dr Julie Ellis, University of Sheffield: Family Accounts of Life-threatening Illness: Stoicism, Humour and the ‘Everydayness’ of Feelings
I have argued that family experiences of illness and dying are made meaningful, through an immersion within the everyday and its mundane practices (Ellis, 2013). Drawing on data from an ethnographic study of everyday family life during life-threatening illness, I will present excerpts from in-depth interviews with families to ‘ground’ this assertion in lived experience. In my analysis of this material I attempt to problematise assumptions about the inevitably of crisis and emotional vulnerability in people’s experiences, and draw attention instead to how individuals themselves explain their emotional approach to facing life-threatening illness in their day-to-day lives. In particular I discuss how accounts characterised by stoical pragmatism, humour and matter-of-factness suggest a more nuanced and contextual interpretation of emotionality in end of life contexts – an ‘everydayness’ of feelings – might be useful. Furthermore, I will reflect on my experiences as a researcher involved in the ‘generation’ and representation of these accounts. In particular I will consider some reflexive points about the emotional labour of identifying and then disseminating research findings which pertain to the ‘everyday’ in what are pervasively understood to be ‘extraordinary’ circumstances such as death and dying.
Julie Ellis is a sociologist and a researcher at the University of Sheffield. She is currently working on the ESRC project: ‘End of or Start of Life: Visual Technology and The Transformation of Traditional Post-Mortem. She is interested in medical sociology, the social and relational aspects of death and dying and material culture and everyday lives. Julie is a member of the Association for the Study of Death and Society (ASDS) and she co-convenes the British Sociological Association Study Group, Social Aspects of Death, Dying and Bereavement (DDB).
Dr Jonathon Tomlinson, GP, Hoxton, London: 100 years of teaching and learning from doctors' illness narratives: from literature to lectures, where next?
The experience of being a patient comes as a shock to doctors who are frequently surprised that years, sometimes decades as a clinician has taught them so little about the fear, loneliness, humiliation shame and powerlessness that comes with patient-hood. Many of them respond to this cognitive dissonance by writing narratives with the intention that their colleagues, trainees and students might appreciate what it is like, sooner than they did, before they become sick themselves. For the last 3 years I have been teaching 5th year medical students and GP trainees about doctors' illness narratives written over the last 100 years. The similarities are striking and suggest that their 'lessons from the other side' are not being learned. I will present a slightly abbreviated version of the lecture I give to medical students and invite the audience to discuss the issues raised and consider how to make more effective use of these narratives in medical education.
Jonathon Tomlinson is a GP in Hoxton, London. He is an undergraduate tutor, GP trainer and freelance lecturer. He has recently set up a course at UCL medical school about shame in clinical encounters and is interested in how to develop therapeutic relationships within the confines of a ten-minute consultation. He is an advocate for continuity of care and general practice in deprived areas.
The event will take place at the Open University Campus in Milton Keynes. Registration and all sessions will be in the Christodoulou Meeting Rooms (campus map).
There is a dedicated bus service from Milton Keynes Central station to the OU campus in the mornings and afternoons (schedule). Taxis are also available from outside the station. Note: it will be possible to arrive by off-peak London Midlands trains from London for the start of the event.
For those looking to arrive in Milton Keynes the night before the conference, we recommend the following hotels, both within walking distance of the Open University campus:
- Date and Time
The Open University
Christodoulou Meeting Room 15
Campus Map: http://www.open.ac.uk/about/main/sites/www.open.ac.uk.about.main/files/files/ecms/web-content/Campus-Map.pdf
Walton Hall, Milton Keynes MK7 6AA