NARRATIVE MEDICINE : THE TRANSLATION

Extrait du blog "Plume, voix de l'âme"

Many foreign friends have been interested by the report on Rita Sharon’s Conference in Paris. Here it is, thanks to Debra Leblanc, with our best wishes for very happy new year celebrations.

Report by Fanny Moureaux-Néry

Our friend Fanny attended the conference on narrative medicine that we had referred to in this blog in an article dated November 20th. She drafted a very good report, with precision, deep understanding and humanity, taking us farther in our discovery of new paths that run through the art of healing. Thank you, Fanny!

Rita Charon teaches Narrative Medicine at Columbia University in New York. I was very moved by the lecture she gave in November at the René Descartes Faculty of Medicine in Paris, because, to summarize, she manages to “re-humanize” medical practice and shares with students what she demands of herself.
I think this report is true to her lecture and the articles I read. I use a lot of her language, but at times I felt the need to restate what I understood.

The importance of the doctor/patient relationship

Rita Charon believes contact between the doctor and the patient is as essential as medical knowledge. A doctor needs to learn from the patient how he experiences his illness and how it feels to be sick and cared for by one or more caregivers.
The relationship she describes between the two is ethical for the doctor and therapeutic for the patient. She is committed to supporting the patient emotionally, as this relationship has a major influence on the patient’s “self” and body. In describing symptoms, she “decodes” the singularity of a diagnosis. By understanding the patient’s suffering, she allows the patient to make a conscious choice to resist this suffering. Science and consciousness come together.

She says that a new patient “is totally unknown to me. I have to honor his narrative and be very curious.” She voluntarily blocks out all her knowledge of the world so that she can be an attentive witness to the story of the illness and how it plays out over time, in space and in a family, social and cultural context. She does not just listen to the content of the narrative. She picks out the images used, the silences, the links with other events in the patient’s life, gestures, expressions, body language and intonations. In other words, her attention attracts many pieces of information from which she will come to understand her patient’s expectations.

She also pays attention to the body, which can tell her things about the patient, and she shares this with him. She believes it is just as crucial to listen to family narratives and, if the patient is hospitalized, to those of other specialists, if there are any, and the nurses that take care of him. These narratives are different and even contradictory at times. It is only after having listened to them that she can decide on a treatment.

Escaping isolation

Rita is very aware of everyone’s solitude. Illness isolates a patient, removes him from the ordinary (she invented the term “infra-ordinary”, as compared to extraordinary, the opposite of usual, to describe his situation). A patient tends to keep his suffering, the humiliation of his dependence, potentially shame, and the anxiety tied to the illness, to himself.
A family that finds itself helpless vis-à-vis this patient often feels cut off from others: for example, the parents of a sick baby, living in an environment that is different from others’, felt like they lived in a fishbowl.
Doctors are isolated because of their medical knowledge, the fact that patients do not want to know, and also because they are aware of the risks.

Members of hospital teams often find themselves separated from each other due to competition and a certain degree of animosity.
Hence Rita’s question: if everyone lives in a fishbowl, how can they be brought together? Exchanging written narratives is how. It is essential to hear the patient’s story and how he interprets his disease, and to complete it with the stories of the doctors, nurses and family. Narratives create a tie, as she so elegantly states: “I let the fish from other fishbowls come into mine.” With this state of mind, the team can participate in the patient’s specific story. The result is less fatigue and burnout for the team.

Theoretical foundation

The roots of narrative medicine lie in existential philosophy and its tool in narrative practices.
The existential view highlights the basic relationship of any organism with the world, one not being able to exist without the other. Constructivist theory holds that our identity does not depend on a given existential structure etched in stone, but it is molded and changes as one meets others, and that language plays an important role in constructing our identity.
By practicing narrative medicine, the doctor’s ethical responsibility is supported by his narrative skills.

It seems that the acquisition of medical knowledge, and continually updating this knowledge throughout their careers, represents such an enormous workload for doctors that they almost forget the components of human relations, which are, however, so essential for both parties.
The E.B.M. (“evidence-based medicine”) trend, for example, seeks to base medicine on proven facts. This movement seems to ignore the dramatic and specific situation of the patient, not to mention the doctor’s judgment. It leads to a hierarchization of proof and observed facts, and to a form of medicine based on theory.

An exploration of the nature of health and disease reveals the fundamental phenomena of existence. Health, illness, life and death are universal facts. They lead to existential questions and invite us to share many uncertainties. Disease relates to the mystery of life and the unknowable.
In light of this fact and the frequent interweaving of life stories, Rita has created the N.E.B.M. (“narrative evidence-based medicine), combining the technical dimension and the dimension that gives meaning. Being attentive to the unknown and the unknowable, the universal and the specific, and the unity of the body and self allows us to avoid a cold, “depersonalized” view of the patient and to communicate with him. Doubts are no longer seen as defying the practitioner’s power, but can be experienced as mysteries to be examined.

To establish a relationship of understanding and support, we need to develop our abilities to listen and empathize. This requires not just attention, but also agreeing to expose oneself to difficult situations, to be able to reflect a past, and, in dramatic situations, to have the moral strength to face suffering, dying and death.
The practitioner also needs something beyond the theoretical and technical to understand the different levels of experiences lived, often with no rules, and that can be contradictory and burdened with meaning. In addition to his cumulative knowledge and treatment charts, he needs an individual examination, a physical and psychic examination of sorts of the patient, as each human lives the value of his existence with his specificities, his share of luck and misfortune, and his responses.

Doctors are torn between ignorance and knowledge, the hope that everything can be explained and the taboo governing the unexplainable, and rules and exceptions.

While clinical proof examines the field of the known and the unknown, clinical circumstances involve the universal and the specific, and take into account what is most precious for patients: their body and “self”.
All human beings have the same body, but the way we live our body is specific to each one of us. Because bodies resemble each other, one can tie a disease to its treatment, which can then inter-communicate. Narrative medicine does not separate the self from the body, because the disease challenges the body and the body challenges the “self”.
The story of the disease becomes an inter-subjective encounter between the doctor and the patient in this existential community.

Narrative competence

The power of a narrative over behavior, whether the doctor’s or the patient’s, is so strong that Rita understood she needed to learn how to “receive” these narratives.
To recognize, absorb, interpret, be moved by the narratives and establish a therapeutic alliance, a doctor needs to be at one with the unique character of the patient, sensitive to his emotional and cultural dimensions, imagine what the patient is facing and thereby identify his needs. He also needs to make a moral commitment; recognize errors and, to the greatest extent possible, avoid them; deal with uncertainty; feel the mood and atmosphere of the situation, and invent other conclusions for this story.

Rita reminds us that, in narrative theory, our life story contributes to our identity. There are many stories about us. Stories bring meaning, either on the how or on the why. They influence our goals and support or deprive us of our values.
A disease is a tragic existential story, the problems of which we can externalize.

Filled with the narrative spirit, she insists on the importance of the “to-and-fro” between an oral narrative and its written transcription. Listening to what is told establishes the first contact. Writing it facilitates a clearer understanding of interior tensions: questions, doubts, emotional past, know-how, abilities and values.
She notes that writing what she has heard allows her to realize that she knows things that are correct (but that she is unaware of) about a person and that this affects her attitude towards the person and the decisions she can propose. Furthermore, writing the story of her support of a patient has shown her what she can do with her abilities.
When a team shares the written narratives of their contact with the patient, everyone becomes aware of their capacity to manage the situation.

To help students learn this method, she has identified three activities:

1) attention focused exclusively on the here and now of the patient,
2) the representation of his narrative in words or sketches, paintings, songs or music,
3) affiliation, in other words, the need to create a tie between caregivers and ways of expression.

She says that writing transforms the “immaterial” into “material”: the written narrative makes the personal suffering and the resistance to this suffering visible. Writing the story told and combining listening and writing help understand the narrative language of the story teller.
This involves knowing how to analyze a text, identifying the structure of the story, adopting a number of points of view and recognizing metaphors and allusions.

Reading literature and studying the humanities, and writing in literary form on one’s profession to empathize with others and become aware of oneself have become a core activity in the teaching of narrative medicine. Some doctors have found that writing what they feel in their practice of medicine, talking about their human relations, which are filled with meaning, and transcribing their personal emotions is helpful.

The parallel with narrative therapy

The parallel between Rita Charon’s statements and position and those of Michael White and David Epston seems obvious to me.
Like Michael, her way of talking about the story she creates with her patients is as simple and humble as her desire to share her experience is enthusiastic. Using her crucial scientific knowledge to serve her patients by connecting to their “self” and past, invisible at first, and learning from them while recognizing her uncertainties and capacities – is this not the two-way street Michael referred to?

I was particularly interested in two things: her way of switching from listening to writing, then reading what is written.

Personally, I write when I have a problem and am always surprised to find that this brings out feelings and abilities I was totally unaware of.
Reading books on narrative therapy has made me more open to the training I have followed. I usually send my clients notes on our meetings, and most feel that this helps them move forward. Our era probably does not give enough importance to writing. With work, the radio and television, what time is left for writing? Writing and reading takes time, obviously, but the benefits are enormous. Rita can be proud that American universities are starting to seriously consider spending time and money on N.E.B.M.

The second is the existential dimension of her practice. I remember a young man with lung cancer at a time when medicine had little knowledge on the subject. He asked, “Why me?” After a period of fear and revolt, he answered, “Because it’s me.” This surprised me and I thought about it for a long time, without, in fact, finding any other possible answer. Birth, aging and dying are all existential facts that go beyond our understanding. How and why is this possible? Many stories attempt to calm our fear, from religion to science. Whether consciously or unconsciously, these questions are part of our lives. It is not easy to find someone to talk to who does not affect the thought process with his personal beliefs.
In therapy, this uncertainty can come to light. This is in fact the role of the therapist: to listen and ask questions that allow the person to mobilize resources to face our existential situation.

What will I gain from my encounter with N.E.B.M.? The future will tell. However, I believe it will bring greater empathy, more respect, a broader ability to share and a better understanding of a person’s life story.

Notes
Narrative Medicine is also taught at McGill University in Montreal and the René Descartes Faculty of Medicine in Paris.

Rita Charon: Narrative medicine honoring the stories of illness. New-York Oxford University Press 2006

 

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