Download Talk to Finnish conference: 2 May 2003

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
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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.
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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’.
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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
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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:
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
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.
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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
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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.
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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.
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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
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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
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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
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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
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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.
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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:
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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
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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!
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