Narrative justice, competence and humility.

Day 1 of the Narrative Medicine conference in Lisbon.

N&M

Details of the conference are here: http://narrativmedicin.wix.com/conference2015

This isn’t a comprehensive review for the most part because I struggled to keep up with the Portuguese interpreting, even though it was pretty amazing that they kept it up all day, in time with the speakers.

Narrative medicine is a branch of the medical humanities that has a particular power because clinical practice already begins with a patient’s history which is a natural space where narratives can be introduced. There is no equivalent for the visual or performing arts.  Medicine then shares its power selectively with the narrative medical humanities and we have conferences in beautiful places like the Calouste Galbenkian Foundation. It’s worth thinking about, but I’m not complaining. Not only because I’m here, but because I do find narratives very useful. More to the point, patients and families complain all the time that they are not given the opportunity to tell their story, their version of events, their interpretation of their symptoms, their experience of care, their fears and so on. Narrative medicine is the conceptual toolkit that enables this. It’s worth emphasising that this is not simply a matter of time, though that’s often the excuse that professionals give.

Taking a structured medical history is not the same as allowing a patient or carer (which is of increasing importance) to tell their story. I’ll be publishing a blog shortly about what people with dementia and their carers think about GPs … It’s a medical maxim that 80% or more of a diagnosis is contained in the patient’s history a figure that has barely changed in the last few decades of technological advance. And yet comparatively little close attention is given to what goes on when a history is given and received. Dinosaurs of the medical education establishment barely conceal their contempt for communication skills training and this rubs off on medical students who see it as fluffy and unscientific.

Applying scholarly rigour, Zsófia Demjen and Elena Semino explained how linguistics could reveal unappreciated aspects of the text of Henry’s Demons, a book written by a father and his son who has schizophrenia. Examples included the different types of language used to describe auditory hallucinations and how the overuse of the pronouns like ‘I, me and my’ were associated with a deteriorating mental state. Their analysis made me think that health professionals would benefit from listening more carefully to the way patients describe their symptoms and the words they use, and not just the factual content.

Narrative is not just about how we listen but how we read. E. Koopman interviewed readers who had differing experiences of depression, during and after they read 3 books about depression; The Bell Jar by Sylvia Plath, Mr Chartwell by Rebecca Hunt and The Noonday Demon by Andrew Soloman. What she discovered was that different texts affect different readers in different ways, which may seem obvious, but it is perhaps more of a concern if we think about why different doctors respond differently to a patient with depression. She showed that readers didn’t have to respond emotionally (or with empathy) to develop a deeper understanding of the experience of depression. I’ve long been sceptical about the possibilities of teaching empathy and this adds to my thoughts that it’s more important to teach medical students about how patients experience illness. Differences in the way they respond depend on their experience of depression and their intrinsic empathy, and to the way the depression narrative is told. How a patient might alter their narrative I’m not sure, but it does raise questions about narrative competence.

Narrative competence as commonly understood is the ability of professionals to be competent at taking a narrative history, but it is also how competent a patient is at giving their account. It’s essential for the professional to have narrative competence for the patient to be at ease and have sufficient trust in order to share their story, the professional must be a good listener and ask perceptive questions sensitively. But even with this (probably too rare) situation to start with, some people just aren’t very narratively inclined. Anthropologist Arthur Frank – one of the early pioneers of medical narratives, described some narratives as chaos and Galen Strawson argues that there are deeply non-Narrative people. Some people are natural story tellers, most of us know people who have ‘a gift’ for telling stories, others are masters or mistresses of poetry or literature. Some of us really struggle to find the words to describe our experiences and infants and those rendered voiceless by disease lack narrative competence.

If patients need narrative competence for narrative to ‘work’ then professionals need narrative humility to recognise that there are a usually several stories to be told, including their own, the patient’s, the carer’s, and any others who might be involved. The evening session with Alexandra Cheira, Cecilia Beecher Martins, Marijke Boucherie and Elisabete Lopes reminded me that narrative may be one of many means to justice. Philosopher Havi Carel whose work I’ve found to be extremely helpful  in everyday practice, united the speakers’ concern that health professionals do justice to patients in their capacity as knowers. Carel describes giving justice to their narratives as ‘testimonial justice’ but she also describes ‘hermeneutic justice’ in which patients’ interpretations are actively solicited and taken seriously. This need not involve narrative. Professor of general practice, Ed Piele has developed Values Based Practice in which patients’ and professional’s values are given serious attention and lead to another kind of justice. This session, like those that had gone before reminded me that for justice to be done, at the very least, there should be patients telling their own stories, or turning their analysis on professionals’ narratives and their use of patient narratives.

Nevertheless it is patients’ narratives that are central to this conference and I like to think that another early pioneer of narrative medicine, Arthur Kleinman, would be pleased.

6 responses to “Narrative justice, competence and humility.

  1. I first came across narrative medicine almost 20 years ago in Adelaide, where native Australians needed to be able to tell their stories. Fascinating.
    Now I’m working as a GP in Africa, where stories are discouraged. Patients expect to be treated according to the body part which is giving a problem. Headache medicine, bellyache medicine. The doctor should “know” what’s wrong and give the correct “muti”. If I ask them to tell me more, they are flummoxed, they seem not to have the language. I mustn’t be a good doctor because I don’t know what medicine to give for chest problems without asking for context.
    Nurses see sixty patients in a morning which means they don’t have the luxury of time to spend with patients. It’s a bit like cafeteria medicine. Headaches get paracetamol, lower abdominal pain in women is treated syndromically with a bunch of antibiotics to cover the multiple bugs which cause pelvic inflammatory disease.
    They are amused by my attempts to find out more, and even more amused by my wanting to examine patients. Even their feet.
    Asking the patient to tell more of their story is difficult. Maybe they don’t have the same concept of disease that I have. It is tricky avoiding asking leading questions, as the patients think they have to embellish their symptoms in order to get more powerful medication. This makes the nurses hot with laughter. And the patients usually join in, knowing that they have been rumbled.
    I’m currently working with MSF in Swaziland and my blog is at ianbcross.wordpress.com

    • When I worked in Afghanistan in 2003-4 I asked the locals about traditional medicine, they laughed and said that as far as most people could remember, ‘traditional medicine’ was a man who turned up on a motorbike with a bag full of coloured injections. People paid more depending on the colour since so few people could read.
      What these experiences suggest is that people become used to certain ways of ‘doing medicine’ and after a while become comfortable with that, irrespective of whether it’s any good. Early attempts to introduce ‘better’ ways of doing medicine are bound to be met with suspicion and resistance, and we need patience and perseverance if we’re to succeed.
      The most important thing we can take from this is about what it teaches us about changing our own healthcare systems at home.

  2. I’m out in Cambodia at present. “Western” medicine is seen as one option among a few to choose between to help heal yourself. “Western” medicine is chosen when a pill (or more realistically – many pills all at once) is thought to be the solution. Infection = pill. Unable to sleep = pill.

    But medicines cost, and not all can afford them. In this extreme physical poverty health becomes alot more about stories. A child dies not because they couldn’t take them to the hospital and have them treated for free, but because if they left their house the debt collectors (or thieves) would come and seize their boats – the child’s death thus becomes due to circumstances…Circumstances that are outside of the scope of “western” medicine, and the parents control, but very much involved in health. This, I fear, is a lesson transferable to our practice in the UK.

    • Of course, it is important to understand the social construction of medical reality.
      In situations of extreme poverty, people make difficult decisions for their families, even if this means not having their sick child admitted to hospital if this would compromise looking after other children at home, or working to generate income.

  3. This is a fascinating post (and blog). I really like the idea of narrative medicine especially in establishing the idea of health beliefs which it can be hard to treat the patient without understanding. But I sometimes find that we (or at least I in my paternalistic role) tend to manipulate health beliefs to promote our agenda (if translated into principlist terminology we subtly manipulate autonomy to promote beneficence). In a way it is similar to anthropologists in the colonial era who may have been genuinely fascinated by the cultures of other people but then find colonial administrators who essentially use that knowledge of a culture to help the govern for their own ends.

    • Point taken, but social anthropology can be used for beneficent purposes. For example, MSF uses it to understand how to improve care of people with MDR TB.
      Part if my job is to treat survivors of sexual violence. Social anthropology is vital in my understanding of how to promote the service, how to manage the patients and to understand the context.

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