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Talk to Finnish conference: 2 May 2003 ............................................................................ 1 Story and Medicine ............................................................................................................. 2 Literature and Medicine and Ethics .................................................................................... 5 Why literature?.................................................................................................................... 7 The power of writing literature ......................................................................................... 10 Rebecca Ship’s Dracula .................................................................................................... 11 Literature as an element of Medical Humanities .............................................................. 13 Conclusions ....................................................................................................................... 15 Practical............................................................................................................................. 15 Bibliography ..................................................................................................................... 16 Contact information: ......................................................................................................... 17 Talk to Finnish conference: 2 May 2003 ‘Knowledge is limited. Imagination encircles the world.’ Albert Einstein ‘Unaccommodated man is no more but such a poor, bare, forked, animal as thou art’ Shakespeare: King Lear ‘We live by stories, and they’re what give sense to our lives.’ Jerome Bruner Gillie Bolton Patients are socialised human beings, their physical selves part of their mental, emotional and spiritual selves, and equally inextricably embedded within a social, cultural, and political environment - not mere ‘unaccommodated man … poor, bare, forked, animals’. The same is true of medical and healthcare practitioners. The patient meets the doctor with a whole clutch of interrelated symptoms and effects, with a disorder, disease or illness which is in varying degrees in their minds, emotions, and social and cultural situation and expectations. Medicine lit&med May 0203 gejb 1 and healthcare therefore have to accommodate to this full nature, in practice, and in academic and intellectual research and education, rather than simply upon an understanding of the body’s physiological workings. Properly understood, clinical medicine is an intervention in what might be called the existential world as well as the natural world…. Our carnal nature is the ground and the form of our conscious experience and our understanding of ourselves – the fact, that is, that we are meat with a point of view. …Clinical medicine aims at an intervention in the point of view as well as the meat. (Evans 2003). The notion of medicine has therefore to broad. The imagination has to be developed to ‘encircle the world’ of patients and their problems, rather than be limited to mere ‘knowledge’. This is appropriate given that medicine is an intellectual pursuit within academic higher education institutions. Stories are at the heart of medicine as well as literature. So we will begin with them, and move onto a discussion of the role of literature in medicine (both reading and writing), particularly in developing narrative competence (Charon & Montello 2002), personal values, and ethical understandings. Story and Medicine Story or narrative are at the centre of human understanding, memory systems, and communication. Memories and information are not just stored; they are storied. Medicine and healthcare’s foundations are built of story. The story the patient brings, the stories patients and clinicians construct together, the stories physicians communicate to each other (as in referrals for example), the stories educators tell to enable their students to attend and remember vital principles and processes. lit&med May 0203 gejb 2 If we didn’t tell and retell our lives all the time, we would have no coherent notion of who we are, where we are going, what we believe and what we want. You will do this as soon as you finish today’s work. You will go home, go back to work tomorrow and tell the story of your day; as you tell and retell you will embed the experience of what you are doing now into your own personal life story. The accounts you give might vary hugely from the stories told by your colleagues or patients. Because none of these stories tell the facts of today. They can’t. All they can tell is your experience. And it’s the same with a patients’ experience. They will tell you their illness story. And they show you of course, with body language, and with what you learn from examination and tests. But patients’ stories will have been disrupted by their illness; this experience of discontinuity, of not feeling settled in the story of their lives exacerbates the illness experience and can affect their attitude and response to treatment. Their underlying presenting problem is: ‘My story is broken, can you help me fix it?’ (Brody 1994) It’s up to you to listen carefully, make sense of it to yourself in the light of your own personal and professional experience, knowledge and expertise. They are not giving you facts; you are not able to interpret what they say, and turn it into objective truth. All you can do is create your own story of their suffering, their pain. You similarly listen to accounts from colleagues – nurses, consultants, registrars. You use narrative competence (Charon & Montello 2002) to hear what’s being said, and create or enhance your own story. And you use narrative competence to disentangle the ethical issues that arise continuously within and from these stories. For the stories that are created by us, and around us, are not only the stuff of diagnosis, of prognosis, the basis for treatment and care decisions. The OED says ‘ethics is a study of human duty’. lit&med May 0203 gejb 3 This ‘human duty’ is the duty associated with the everyday actions of ordinary people – you and me - patients, physicians, nurses; it is told and understood in our stories. Stories are always told from a point of view, even (or especially) those claiming to be objective. Point of view is the particular personal perception of events, people, and places, the angle from which the story is told. It is vital to listen empathically for whose point of view is being expressed. The point of view from which the story is told can dramatically alter the story, so much so that it can be almost unrecognisable when repeated from the perspective of another character. There are other issues which need to be taken into account as well, in listening to, or reading stories with critical competence: The role of each narrator, or the way each character understands their role within the story will affect the ethical understandings inherent in the story. The kind of dialogues which have taken place between the intertwined narrative voices will have an impact – who has told whom what, and who knows what about whom. The reliability of each narrator affects the understanding of a story immensely: do you trust that the narrator is not intentionally misleading you? Do you trust the ethical foundation of the narrator’s character and therefore their narration? This is thinking with stories rather than thinking about stories (Frank 1995). The practice of medicine involves uncertainty, dilemma, and ambiguity. Patients’ experience is similar: constructed into stories from different points of view. ‘Stories are at the heart of clinical practice … they allow us to explore areas which are tentative, uncertain, and even heretical.’ (Calman 2000 p55) Effective working stories - whether by Dostoyevsky, or told over coffee – concern lit&med May 0203 gejb 4 ethical uncertainty, dilemma or ambiguity, encountered and tackled by the characters. Literature and Medicine and Ethics And how does a clinician acquire the skill to listen properly, and make sense of the stories of others in this way? How do you develop your ability to tease out ethical issues from the complex mesh of your own, your colleagues, and your patients stories. How does a doctor acquire narrative competence? Narrative competence is acquired by practice, just as any other competence. You started when you were very small, with understanding stories which began with once upon a time. And you practised it from then on by reading. Literature offers a wealth of experience of, and enquiry into, the human condition. The reading of literature has transformative power: the understandings and insight engendered can alter readers’ perceptions permanently. Through literature the reader can experience, and therefore reflect upon: a range of cultural and social norms and expectations different form their own situations, incidents, and issues different from any experienced in their life different or alien ways of thinking and being emotions and their effects upon people The best of literature also contains ethical decisions and dilemmas. Ethical dilemmas make plots fizz - make you turn the page – is Frankenstein really going to make a living person out of dead body parts? Surely people can see how kind and gentle the Monster is despite his appearance – can they really be going to be so cruel to him? How can the Monster strangle Elizabeth so brutally when I know he is really kind and gentle, and only wants to be loved? (Shelley) The best of literature: lit&med May 0203 gejb 5 sets up ethical ambiguities and offers direction towards resolution; it provides the story structure to enable you to tussle with the issue – some sort of beginning, middle and end provides no solutions to ethical dilemmas – that’s your job as reader to decide what you think is a process of as if. If I were this character or that, what would I feel think, and ethically do? offers the reader the authority to make their own judgements and conclusions. So as you read you sharpen your ethical wits – weighing and judging, developing and refining your own personal values – what is the right decision here – right according to what you think your own principles and values are. You do this with the help and guidance of our best thinkers, because they are the writers of our best literature – Sartre, Woolf, Dostoyevsky, Sophocles, Kafka, Mary Shelley. So, although you are reading a story about unknown characters in a fictional situation, you relate to the events and people as if they were real, as if they were you and the people around you even. As you read about the goings on there - in the fiction - you are empowered to think afresh about issues here in your everyday life. The hinge, or turning point of a plot is the peripeteia – an act of moral recognition, when the uncertainty or ambiguity is faced. In Frankenstein by Mary Shelley, the Monster realises that people are not always good and kind to each other, and that he is to be reviled – an example of a tragic peripetei.. In The Ancient Mariner (Coleridge ) the Mariner suddenly sees the sea snakes not as horrific, but as utterly beautiful; he is able to pray and the dead albatross drops from around his neck. lit&med May 0203 gejb 6 A critical competence in understanding the storied nature of medicine underpins effective ethics. Medical ethical quandaries need always to be studied from the point of view of all the key characters; the reliability of each narrator needs to be scrutinised; an understanding of the roles these characters take on, and therefore their motives is essential; the effect of place and chronology on the events and issues cast light; and a recognition of the powerful location of the peripeteia eases clarity. All these literary critical devices, and also an ability to analyse such as the use of metaphor and form, are vital to the clear and full understanding of an ethical case. But of course literature cannot ensure ethical readers with developed humane and empathetic value systems. All literature scholars would be paragons if this were the case. Literature does have to be read critically, and perhaps instrumentally for it to develop thinking and understandings. Why literature? I am here taking literature to include: fiction, poetry, drama, ‘autopathographies’; there is not space here for a discussion of their different values and importance. I recommend the reading of literature rather than case studies, because: 1. Literature is written by artists, and sometimes philosophers; it is likely to be clear, lucid, succinct, and keep your attention. The plot and characterisation will have been based on deep understanding and direct experience of the human condition. The fictionality of the piece does not make it any less valid; in fact more so because the authors will ensure only interesting and thought provoking issues will be presented to you. Fiction can miss out the boring bits, and go straight for the heart of the matter. 2. Literature offers aesthetic distance. When you know you are sharing the experience of a fictional character you can allow yourself not to make the lit&med May 0203 gejb 7 immediate value judgements you normally do. You can allow the writer to persuade you to empathise with all sorts of unsavoury characters who do dubious acts and think what we might otherwise think are very wrong thoughts. In reading you can do things you would never do, and go places with the characters you would never go alone outside the pages of the book. You are therefore enabled to experiment with sets of values very different from the ones you are used to inhabiting. Having become involved during reading in this way, you are then free afterwards to ponder your response in your own time, and according to your own principles. Literature often does not offer answers or judgements, but presents situations which inevitably pose a series of questions. You come up with some possible answers. This is at its most pronounced perhaps when the narrator of a story or poem is unreliable – a liar, or untrustworthy in some other way. This character might well be the sort of person we’d never consort with beyond the pages of a story. On reading literature, we tend to do more than consort with the main character, in some way we become him or her for the duration of the reading. This can be uncomfortable as the writer pushes us to empathise with the character, yet we pull away from him or her, struggling with our habitual moral and ethical judgements and feelings. The reader has to become Dr Frankenstein and then the Monster himself, in Mary Shelley’s story. And as I read Dracula (Stoker 1897) I can sense the continuity of experience between me the reader outside the book, and the me who becomes the Dracula character. The ‘personality disorder’ person is not a different order of being to me (even if he is fictionally given Dracula-like qualities): there’s a Dracula in me, ordinary respectable wife and mother of two that I am. Reading about such characters offers the opportunity to explore that side of myself, deepen empathy and understanding, and develop workable and humane ethical values. lit&med May 0203 gejb 8 3. Literature is multi-vocal. The reader of fiction is enabled to see another’s way of seeing as if it is their own: they are invited into other people’s way of understanding and perceiving the world, and their relationship to it. Writers like Virginia Woolf - who use shifting points of view – get into the deep thoughts of a range of characters, and offer valuable insight into how a situation is viewed very differently by the different people involved. A case study can be ‘deceptively seamless’ (Charon & Montello 2002), seemingly giving the facts of the case, but in reality offering only one point of view 4. Literature deals with whole people in whole cultural and social situations. I have so often heard people say: ‘Oh all those are just stories. We can’t waste our own and our student’s time on them, we have to get on with real things, scientific things.’ Well, of course the scientific things are vitally important. No-one would say that literature should be studied at the expense of the science of the workings of the human body and mind. But the science of the workings of the human body and mind, and perhaps more importantly the application of that science, can only properly be understood in the social and cultural context in which that body and mind work. People are wholes: body, mind, spirit, social self. Medicine should be about bringing healing and health to people. The Cartesian split is a very dangerous construct leading medicine to focus upon only the body: a mere cure of certain diseases and disorders. People can no more be dealt with as if their bodies were machines to be mended by doctors masquerading as technicians, than Dr Frankenstein could really make a person out of spare body parts. lit&med May 0203 gejb 9 The study of literature and medicine, and the study of medical humanities in general, can bring about a healing of the Cartesian Divide. Literature offers a continuity of study of the mind, body, spirit, social self. This kind of sensitive and spirited enquiry is essential for medicine to deepen and develop. The power of writing literature That’s reading; what does writing offer the practising or student doctor? In my work in reflective practice for professional development, I encourage doctors and healthcare staff to write stories and poems about their work. The very process of storying in writing engenders insight and greater understanding. They then share these writings in carefully facilitated groups to deepen and develop those insights and understandings – by discussing the issues which arise. The process of writing enables a very deep and close connection with the writer’s most vital issues – those which need exploring and expressing. The discussions then bring these ‘secrets’ into the open and offer the support and outside experience of others. (Bolton 2001b, 1999) Writing your own stories or poems can offer the most effective exploration and examination of practice. Writing can enable: the expression of experience and perceptions more clearly concisely and critically, and the understanding of connections between different areas of experience the exploration of the essential uncertainty and lack of control in medicine; it can enable to exploration of ‘areas which are tentative, uncertain and even heretical’ as Sir Kenneth says. Literature is all about uncertainty and dilemma. Well – so is medicine. Writing is the best way to lit&med May 0203 gejb 10 understand, interpret, and make some sense of the muddles, confusions and unfinishedness of medicine the examination of ethical values aesthetic distance to professional practice, in a similar way to reading. It can enable a deeper understanding of the motives, and different ethical values of others. Rebecca Ship’s Dracula Dr Rebecca Ship’s story Dracula (Bolton 2001a) was written for one of my groups. The story is about someone with very different ethical values to you and me, it starts with the words Dracula was moonlighting as a phlebotomist… . We see Dracula as a person existing in society. His GP might well have to label him as having a personality disorder. In fact his GP in the story does offer counselling. Rebecca Ship, a doctor herself, used this story to explore what might be the thinking of a self-harmer – something we all find great difficulty in understanding. Here is the final paragraph: Dracula stood up, walked to the kitchen and rummaged around in the cutlery drawer. When he had found what he needed he picked up one of the mugs stacked on the draining board, emptied the dregs of that morning's tea into the sink and rinsed out the mug. He came back into the sitting room and sat down, placing the mug and a serrated bread knife on the table in front of him. For a long time he didn't move. Then, in a seamlessly quick and surprisingly delicate movement, he picked up the bread knife and drew the blade forcefully across his forearm. He shuddered as he watched the blood drip freely into the mug. His scalp prickled as he once again sliced at his arm, and again, and again. With each cut he winced but after a while he felt nothing but a kind of anticipatory calm and a deep sense of resignation. When the mug was half full he sniffed deeply from it, threw his head back and allowed the sticky liquid to fill his mouth and slide down his throat. He gulped greedily. It was warm lit&med May 0203 gejb 11 and thick and glutinous. With each swallow he grew dizzy. He felt red, amoeba-like fingers reaching into every crevice of his body, squeezing their way into all his secret places, filling him up. God, it felt good. He ran his tongue over his teeth, which was coated with bits of clotted blood. He began to drift into sleep.....nothing was as satisfying as this, not even sex. Rebecca Ship, afterwards wrote of her story: Dracula - the character in my piece - was not conceived as a psychiatric patient. He's certainly not psychotic, though he may have a personality disorder. He's definitely not a patient in the sense of being powerless/a victim/a passive recipient of 'treatment'. He's very much in control of what he's doing.' I remember getting quite excited as I wrote the scene where he cuts himself. It felt quite liberating, as if I was breaking a taboo (for myself, I suppose). I hadn't been writing very long at that point, so it felt like a bit of an adventure i.e. to test myself and my boundaries. The excitement was to do with allowing myself to be Dracula, i.e. to be inside his head. The idea of drinking blood is repulsive on one level, but somewhere deep inside my psyche there must be a little vampire attracted to the idea, or at least willing to explore it.....isn't that empathy of a kind? (personal communication) She was enabled to ‘get into the head’ of this strange and deeply unattractive character, using the aesthetic distance which writing offers from her everyday ways of thinking and judging. This is, she said ‘an empathy of a sort, isn’t it?’ I felt that Dracula moves from being a dangerous character to be avoided by all lovely white skinned young girls, to being a sad self-harmer – someone to pity, and want to help, rather than be feared. But when I presented a group of lit&med May 0203 gejb 12 BMedSci students with the story, written in the voice of a self-mutilator and drinker of blood. One of the students was angry: ‘why have you given us this horrid thing to read?’ She didn’t want to try to explore the experience of such a person, despite knowing there are psychiatric patients who slice themselves, and lust after the blood of lovely girls. She did not want to accept the aesthetic distance offered by literature. Perhaps some aspects of the story resonated with her own personal experience, disabling her from exploring the fictional issues, because the brought to mind too clearly her non-fiction experiences. The reader cannot always accept the invitation to become a character, to explore other areas of experience – perhaps repugnant; such a reader has to refuse such aesthetic distance – they are personally unable to make the aesthetic leap. I had an experience like this when I read Motherless Brooklyn (Lethem1999) given to me by a colleague. I just couldn’t become Lionel, the crooked protagonist, and had to put the novel down. Most of the doctors I work with do not write pure fiction like this. They write about incidents in their normal working life – issues about patients, colleagues, problems with those in authority. Literature as an element of Medical Humanities Medicine requires a broad understanding of what science is if it is effectively to harness the essential knowledge, skills and experience which the arts and humanities can offer to: in-depth and effective medical ethics, the increasingly well-known but little understood placebo effect of medicine; the way patients’ understanding of themselves, their illness and their potential wellbeing can materially effect their recovery irrespective of medical and healthcare interventions; the impact of the doctor-patient relationship upon patients’ compliance, and responsible and positive attitude to their bodies and illness; the development of empathy and tacit ways of knowing; the significance of a lit&med May 0203 gejb 13 grasp of medical history upon an understanding of contemporary medical and healthcare practice. Scientific understanding is, of course, essential to medicine and healthcare. The spirit of intellectual enquiry and wonder is central to scientific disciplines, and can provide the evidence base required by medicine and healthcare. But the notion of science should not be understood too narrowly, nor restricted to mere technology. Pure science itself uses many artistic methods and approaches; for example it frequently harnesses the aesthetic, and usually works by models and metaphor (such as the elegant DNA double helix model). Medical humanities is about creating a dynamic model of medicine, about developing it to include technological understandings of science alongside the aesthetic and the humanities. It is about shifting the model to include the whole person of the patient, and the whole person of the physician. It’s about being able to appreciate the full width of peoples’ and societies’ narratives, and the way individual patients’ and doctors’ stories mesh and grow together. Medical humanities fosters a sustained reflective and reflexive exploration and examination of practice, and an understanding of the role of medicine and healthcare in both the individual and society, enabling practitioners to express, explore and therefore make sense of their experience and perceptions more clearly, concisely and critically. Practitioners or students are also encouraged and enabled to take a positive and constructive attitude to the inherent ambiguities, uncertainty and lack of control in medicine and healthcare. Abilities in interpreting, understanding, and communicating the human experience of illness, disability and suffering, and the connections between areas of experience or knowledge are thus developed. lit&med May 0203 gejb 14 Conclusions The reading and writing of fiction and poetry is clearly of value in developing the understandings and critical skills of medical and healthcare clinicians and students. A working, critical knowledge and understanding of biomedicine must be embedded within equally workable and critical knowledge and understandings about the social, cultural and political systems the bodies of patients live and work within. People are physical, social, cultural, political, psychological and spiritual wholes; therefore attempting to treat merely a part of them - the physical - as if they were machines and doctors technicians, simply does not work. The reading and writing of literature can develop critical skills: my students have gained authority by being asked what they think. Literature can also develop personal value systems and an enhanced ability to tussle with ethical issues. My students have gained understanding by being asked what they feel. Embedded within all this is a development of spirited intellectual enquiry within clinicians and students. Medicine is not a technology to be trained for and undertaken as if it is a production line following the evidence. Medicine and healthcare are academic and practical pursuits engaging the whole person of the clinician as well as the whole person of the patient. The medical humanities, including literature, will surely and deeply develop both individual practitioners, and medicine and healthcare in general. Practical I’d like to ask you to turn to the person next to you and share with them the title and author of a text which you have found important, and why. Next I’d like to ask you to tell this friendly neighbour – quickly in half a minute: lit&med May 0203 gejb 15 If you were the heroine or hero of a story or novel, what kind of fiction would it be: Detective whodunnit, romantic, fantasy, aga-saga, magical realism, sci-fi I would like to ask each one of you to write your own story about an event in your life. You might like to write it in your chosen genre. Rebecca Ship chose to explore the issue she wanted to explore in Dracula in fantasy. I’d like to ask you to reflect very briefly now about an event in your working life, which you might write about. Don’t worry about confidentiality, we are not talking about publishing here. Now go and write it, and send it to me. Bibliography Bolton G (2001a) Opening the word hoard: four poems and two stories (Dracula by Ship R). Journal of Medical Ethics: Medical Humanities. 27 (2) 70-73 Bolton, G. (2001b) Reflective Practice Writing for Professional Development. London: Sage. Bolton, G. (1999) Stories at Work: Reflective Writing for Practitioners. The Lancet. 354 pp243-245 Brody H (2003) Stories of Sickness(2nd Edition) Oxford University Press Brody H (1994) ‘My story is broken. Can you help me fix it?’: Medical ethics and the joint construction of narrative. Literature and Medicine. 13 79-92 Calman Sir K (2000) A study of story- telling, humour and Leaning in Medicine. London: Nuffield Trust. p5 Charon R & Montello M (2002) Stories Matter: the role of narrative in medical Ethics. New York: Routledge Coleridge St () The Ancient Mariner Einstein A (1929 (2002)) Interview with Sylvester Viereck, Berlin Quoted by Taylor K When fact and fantasy collide. THES 20/27 Dec 2002 pviii lit&med May 0203 gejb 16 Evans M (2003) Roles for literature in medical education. Advances in Psychiatric Treatment. 9 (5) (in press) Frank K (1995) The wounded story teller: body, illness and ethics. University of Chicago Press. Lethem J (1999) Motherless Brooklyn. New York: Vintage Books Shelley M (1993) Frankenstein or the Modern Prometheus. Herts: Wordsworth Editions Stoker B (1897) Dracula Contact information: Gillie Bolton, Medicine and the Arts, King’s College London University, Strand, WC2R 2LS; 0207 848 1405; [email protected] Comments Welcome Please! lit&med May 0203 gejb 17