This conference report was invited by editors of the Centre for Medical Humanities blog in order to share with a wider audience the ideas and discussions prompted by one of the major international conferences in our field. It was written by Deborah Bowman Professor of Bioethics, Clinical Ethics and Medical Law at St George’s Medical School, in collaboration with Trisha Greenhalgh, Professor of Primary Health Care and Co-Director, Global Health, Policy and Innovation Unit at the Blizzard Institute (and co-editor of the seminal text Narrative Based Medicine) and Jonathon Tomlinson, NHS GP. By tweeting highlights, provocations and insights from the conference live via twitter, Deborah, Tricia and Jonathon have already started a dialogue about this important meeting (captured in this storify) which we hope, by inviting comments on this fantastic conference report, to continue here…
A Narrative Future for Healthcare: Conference Report
Last week, several hundred people gathered at Kings College, London for a conference entitled A Narrative Future for Healthcare. The co-organisers, Rita Charon of Columbia University and Brian Hurwitz of Kings College, are leaders in the field and it was under their stewardship that the conference took place. It was a meeting that also marked the launch of an International Network for those working or interested in, narrative and healthcare.
The programme was wide-ranging and delegates were offered an extensive menu of parallel sessions including workshops, poetry readings and performances as well as the more traditional conference fare of papers and presentations. The break-out sessions were punctuated with plenary and keynote addresses, mostly from the ‘big names’ in narrative medicine, but occasionally (and often most successfully) by those outside the academic ivory towers – such as the multiple prize-winning illustrator and artist, David Small, who said of his dark, graphic memoir Stitches “by making the story silent I wanted the reader to do the work that I had to do”. He was the first, but not the only speaker to quote from The Gospel of Thomas, “If you bring forth what is within you, what you have will save you. If you do not bring it forth, what you do not have within you will kill you.” Peter Carey engaged the audience with a witty, sharp and thought-provoking insight into how he creates, or more accurately perhaps, discovers, loses and then rediscovers the narratives of his novels.
The parallel sessions offered an exceptionally broad menu of papers covering the various forms in which narratives are constructed, shared and interpreted, philosophical considerations of narrative medicine, practices and tools for incorporating narrative into healthcare education and practice and experiential workshops particularly in writing, reading and the visual arts. Each day, faculty members from Columbia University offered opportunities for participants to experience their particular approach to close reading and narrative writing. These sessions, whilst short, were rich and memorable, due in no small part to the skilful facilitation and small group size.
In the workshop I (Deborah) attended, led by Craig Irvine, we studied the poem A Green Crab’s Shell by Mark Doty. After demonstrating and practising a close reading method, we explored the poem as a group before using one of the lines in the text as a prompt for our own writing. This was free writing i.e. unpolished, instinctive, time-limited and raw. Yet, as we shared our work with each other, unique perspectives, unexpected richness and memorable phrases filled the room. With sensitive facilitation from Craig, it felt like an extraordinary experience; all the more so for happening in an airless breakout room after a long day of unforgiving conference scheduling had taken its toll.
The plenary sessions were where the notion of narrative was most rigorously considered and distilled. Catherine Belling interrogated claims of authority, authenticity and the body’s narration offering a thoughtful perspective on the parallels between torture and healthcare relationships and experiences by way of Hamlet, the Fox television series ‘24’ and perceptions of hypochondria. In a memorable phrase, Belling proposed that meaningful therapeutic relationships and effective clinical practice depend on both ‘the rule book’ and ‘the story book’: ‘the story book is to the rule book what autonomy is to bureaucracy.’
Havi Carel offered a carefully reasoned and eloquently articulated analysis of epistemic injustice and illness, demonstrating the ways in which illness and its interpretation changes and marginalises people. Carel described (drawing on the work of Miranda Fricker) four types of epistemic injustice, namely: i) Testimonial; ii) Hermeneutic; iii) Participatory Prejudice and iv) Informational Prejudice demonstrating, with examples, the ways in which organisations, social structures and individuals can all, consciously or not, disregard or diminish someone’s testimony and experience. Thus it is, argued Carel, that patients become the object of healthcare rather than participants in their own care, whilst epistemic privilege is afforded to, and enacted by, healthcare professionals who choose which accounts and interpretations are most persuasive. As Havi spoke, I was reminded of a notorious example of epistemic injustice courtesy of Humpty Dumpty’s exchange with Alice in Alice Through the Looking Glass in which she suggests “the question is…whether you can make words mean so many different things.“. In response, Humpty Dumpty counters,”the question is . . .which is to be master—that’s all.” Havi Carel concluded by explaining the possibilities of a phenomenological toolkit to support discussions about and choices in healthcare.
Ann Jurecic began the final day of the conference with a presentation that, probably, scored highest on the audience clap-o-meter; and deservedly so. Her contribution was scholarly, personal, analytical, applied and communicated with enormous warmth and humility. Ann began the session by proposing that narrative-informed practice provides space, be it physical, intellectual, emotional or otherwise, to contemplate, to learn, to be surprised and to nurture new connections. It was at this point that the importance of listening and learning was given proper attention. Until Ann spoke, there had been much about constructing, discerning and sharing stories, but little explicit consideration of listening as inherent to meaningful narrative practice. And, it is not only the act of listening, but also the intent of the listener, that matters in narrative practice, she argued. Thus she distinguished narrative from the critical disposition of literary analysis. Reading by the narrative scholar is conducted in a spirit of openness, care and curiosity rather than as a ‘suspicious’ exercise in which the text is interrogated, deconstructed and often found wanting. That is not to say that Ann Jureicic’s approach lacks rigour. On the contrary, it is careful, even painstaking, requiring effort, close attention and thoughtfulness. She bought to the audience’ attention the transformative potential of writing by example of Foucault’s notebooks. It is, she concluded, a life-long endeavour and requires commitment and habits of mind that inform and enhance not only narrative practice but clinical work too.
By the final day, a more reflective and questioning mood took hold. Whilst, much of what had been presented was inspiring, there had been, on occasion, a fevered belief in what some described as the ‘narrative movement’ that was reminiscent of evangelism. Claims sometimes appeared to be made on the basis of faith and, as is common with faith-based claims, they were occasionally exaggerated and difficult to challenge. Conversations with scholars of literature, history and semiotics over coffee hinted at another potential difficulty: might medicine, traditionally so magpie-like in its selection of theory, ideas, knowledge and skills, be embarked on a well-intentioned, but perhaps naïve colonisation exercise lacking depth and misrepresenting vast swathes of academic work by generations of scholars who have been immersed in ‘narrative’ for centuries?
The other striking absence at the conference was narrative itself. It seemed that there was, amongst the majority of presenters, a curious paucity of trust in the power of narrative to speak for itself, unembellished, without analysis, interpretation or interrogation. Although, John Launer and then Arthur Frank warned us not to undermine others capacity to know themselves. A lot of people were talking about and talking up the concept of narrative, but aside from the poets, no one seemed ready to put narrative itself centre-stage. Unwittingly perhaps, but the conference appeared to be at risk of replicating that which the prevailing rhetoric most abhorred, namely representing and analysing a narrative without allowing the text and story to speak for themselves. So when Phil Thomas stood up in a parallel session entitled ‘Narrative and the Future of Psychiatry’ and read us the story of ‘The Little Red Alpha’, it was more than welcome and served as a lesson, more eloquent than any academic discussion, of the unique capacity of narrative to bear witness, capture multiple meanings and forge connections.
The closing session, probably understandably, was a rallying call by a giant in the world of narrative: Art Frank. In an emotional and impassioned presentation, he explored the history of narrative in healthcare, his fundamental belief in its unique value and argued that not only are stories integral to the future of healthcare, but stories are what create the future for us all. He bought our attention to the importance of ‘amplification and connection’ – our moral duties, captured by the word ‘témoignage’ used by the emergency medical aid charity founded by journalists and doctors, Medecins Sans Frontieres. Temoinage means bearing witness and speaking out.
It was a message that touched many and several pockets of the room rose to their feet in a standing ovation. Thus it was that the conference ended on a note of resounding optimism and avowed commitment to the cause.
Several days after the conference has ended, we have all reflected on the experience. I (Deborah) found much of immense value in the sessions I attended, but I confess that I do feel somewhat discomforted by the unquestioning belief and occasional proselytising that seeped out from a number of the claims made for narrative medicine. Whilst I celebrate the diversity and intersectional nature of a field that draws on many disciplines, I wonder if many of the concepts and ideas could as readily be viewed through other academic lenses.
For example, much of the character-based traits described as inherent to narrative practice, could have been conceptualised as virtue ethics. (Though is virtue ethics closely related to narrative ethics?) I have questions too about the predominantly positive claims made for narrative. The predominant narrative of suffering and vulnerability that was evident in most sessions can be constraining, myopic and diminishing. Fortunately, Terry Tracy was one of the more provocative presenters, announcing her political motives at the beginning of her presentation and getting a cheer from the floor for quoting provocateur Angela Woods. She convincingly challenged the dominant illness narrative of suffering and becoming with a disability narrative of survival and being. On more than one occasion, people became visibly upset or emotional in sessions and the presenter or facilitator appeared unsure how to respond and, in one case, reacted by making an ill-judged ‘joke’. If we are to invite people to share their stories, we have to be sure we honour those stories sensitively. The capacity for unintentional, but nonetheless painful, damage seemed to me to be considerable. Secondly, the socio-political context of health and illness was rarely mentioned. Whilst the systemic influences on how healthcare is experienced and delivered were often offered as a reason for why it is difficult to take a narrative approach with individual patients, the meta-narratives of the healthcare system and the medical profession were not considered in sessions I attended.
Finally, it would be a shame if narrative medicine were to become dominated by the medical perspective. The diversity of backgrounds and the range of interests of delegates were the conference’s greatest asset: namely, literary theorists, artists, poets and discourse analysts were welcome grist in the medical mill. It is vital that diversity is nurtured and to do so may require some humility. It was also inspiring to see a strong showing of Masters and PhD students, some of whom were giving their first presentations. Their work was at varying stages of progression but was consistently imaginative, thorough and carefully presented. To be open to the limits as well as the possibilities of narrative, to listen to, and learn from, the scholars who have been working with narrative their whole careers, to be careful and to resist the temptation to claim that this is concept or ‘movement’ is a universal panacea for all that ails medicine. Narrative is too interesting, too exciting, too complex and too nuanced to style itself prematurely as the hero of its own story.