Rita Charon, a clinician, literary theorist and educator, is a pioneer of narrative medicine approaches. Charon defines narrative medicine as ‘medicine practiced with the narrative competence to recognise, absorb, interpret, and be moved by the stories of illness’. Of her early experiences of learning to recognise the importance of narrative knowledge in everyday medical practice, Charon writes,
I had to follow the patient’s narrative thread, identify the metaphors or images used in the telling, tolerate ambiguity …identify the unspoken subtexts, and hear one story in light of others told by the teller. (p.4)
In my use of narrative medicine in palliative and end of life care, I have also drawn upon ideas from feminist, queer and postcolonial theory and my skills and knowledge as an ethnographer and oral historian. I am interested in trying to understand how the material and cultural circumstances of a story, together with the storytelling relationship, produce meaning. As Arthur Bochner has observed,
When I sit down to analyse a story, there's the story, and there's me. The meaning
of the story is not immanent in the text. The process of theorizing, analyzing, and
categorizing personal personal narratives is shot through with the imagination and
ways of seeing of the interpreter. (p.135-6)
Narrative Palliative Care - the withdrawn
In the Case Stories project, I have been keen to develop my knowledge and practices as an educator in palliative care. I am interested in how pain, suffering and death affect stories and the intersubjective relationships between the narrator and the listener. Building upon some of the early, often implicit ideas in Cicely Saunders' work on the concept of total pain, I have been interested in what can be withdrawn from narrative and the present.
These ideas are based upon the work of the philosopher Emmanuel Levinas. What is distinctive about Levinas’ approach is that he recognises asymmetry in our relationships. For Levinas, the Other is singular and ‘mysterious’ and like the future, can never be fully known. There are aspects of the Other, Levinas believes, that are phenomenologically withdrawn or 'diachronic'; they are beyond rational knowing but still require a response, or more specifically for Levinas 'responsibility'. Writing about the Humanities in the context of a wider critique of human rights and colonial histories, Gayathri Chakravorty Spivak, has highlighted the importance of practices of 'patient reading', to disturb the superiority and saviour complex of those groups who are seen as being responsible for 'righting wrongs'. For Spivak:
A training in literary reading is a training to learn from the singular
and the unverifiable. Although literature cannot speak, this species of
patient reading, miming an effort to make the text respond, as it were, is a
training not only in poiesis, accessing the other so well that probable action
can be prefigured, but teleo-poiesis, striving for a response from the distant
other, without guarantees. (p. 352)
There are three main modes of withdrawnness that I have been engaging with in my research in palliative care: the sensible, the temporal and the semiotic (concerning signs and symbols).
A Patient Who Made Me
The following story is Eileen’s, a cancer Clinical Nurse Specialist. Eileen wrote the story during one of the sessions that I teach on narrative on a postgraduate course in palliative care. In a writing exercise that I have developed, called 'A Patient Who Made Me', I ask participants to write about an experience that has had an influence upon how they care or their experiences of death and dying.
Eileen's story articulates the everyday demands of the withdrawn in end of life care. The story is about a patient whose pain and short life Eileen had found difficult to face. Eileen had been organizing the patient’s discharge from hospital and had become preoccupied with the complicated discharge arrangements. She felt that she had been distancing herself from her patient, using the discharge plans as distraction and protection,
'I went to visit a patient on the ward to plan with her her discharge home. She was 31 years of age and had advanced lung cancer with a prognosis of weeks. I remember feeling particularly nervous and sad when talking to her about the practicalities of her discharge.
Suddenly she touched my arm and said “I have had a life you know Eileen.” I was taken aback as I suddenly realized that I
had never discussed her life before her illness. I said to her through my embarrassment ‘Tell me about it.’ She recounted the most wonderful stories of her travels abroad.
The experience reminded me that people have had lives before
illness. There is a whole other person/experience rather than
just the illness.'
'I have had a life you know, Eileen' is one way of thinking about what is withdrawn but can sometimes be alluded to. The life of the woman in Eileen's story affects the present of her relationship with Eileen, but it cannot be fully known. It is a lost place/time, not only for Eileen but also for the dying woman herself. How does one ever fully know, let alone convey, the life that you have lived? The withdrawn in this sense is also the unknowable otherness within all of us that has the potential to shock or to surprise us - 'Where did that come from?’