Heroes Not Zombies

The Scottish Storytelling Centre in Edinburgh hosted the International Storytelling Festival last week and I participated in a series of workshops entitled “Stories and Cures”. What a fantastic, stimulating, rich experience with a diverse range of nationalities and disciplines taking part. Right at the start of the week I heard something I’d never heard before.

Back in the 18th and early 19th centuries throughout Europe when a person wished to consult with a doctor, there was a practice of letter writing. Someone would write a letter to the doctor whose advised they wished to receive. The letters were typically the person’s story, in their own words, describing what they were experiencing and the contexts of those experiences. In other words, the letters weren’t just lists of symptoms, and certainly weren’t tables of figures or readings, but, rather, they were highly personal, unique life stories.

The doctor would then write back, commenting on parts of the person’s story and giving a range of advice , often touching on issues of morals, hygiene or spiritual life. This was the beginning of a conversation which might be followed up with further exchanges of letters and/or with meeting up for face to face consultations.

Joanna Geyer-Kordesch, whose research as a Professor of the History of Medicine was the basis for this series, has read hundreds of such letters in English, German and French.

I didn’t know such a practice had ever existed.

Just think for a moment how different this practice was from our current doctor-patient relationships.

First of all, the record of the person’s illness is now created and held by the doctor. The stories have been turned into case notes and typically it would be extremely difficult to gain any understanding of who the person is if you were to read these notes. Doctors notes (I don’t think they usually could be stretched to be considered as stories) are mainly lists of symptoms, physical findings and results of investigations, then diagnostic labels based on pathology. The advice recorded certainly isn’t in the form of a conversation or exchange with the patients. In fact advice is more likely to have been replaced by a list of drugs prescribed.

What are the consequences of this change?

There has been a shift in power – from the person to the doctor, or the institution. This shift in power is so great that the words recorded are much more likely to be the doctor’s words and his or her interpretations of the person’s experience, rather than any record at all of the story the person has told (it’s not like that where I work because we have a tradition of writing down the patient’s actual words as much as we can – however, it’s still the doctor making and holding the record, not the person whose life it is)

There has been a shift in focus – from the person to the pathology. As Eric Cassell so beautifully describes in his “The Healer’s Art”, and “The Nature of Suffering”, illness is what the person goes to the doctor with and disease is what he comes home with.

It seems to me we’ve lost sight of the human being in the process. By reducing someone to a mere physical body to measured and imaged, we have dehumanised Medicine. The PERSON has been lost. How do we get the PERSON back into the centre of the stage? How do we get the individual’s agenda back at the heart of the medical engagement? How do we regain the truth of the uniqueness of every single human being and move away from the mass production processes of reducing people to diseases, diseases to “managed”, rather that people to be healed?

A good starting place would be to enable people to tell their stories – in their words, in their order of priority, in their own style – to reveal not just their sensations and experiences, but also their choices, their values and their beliefs (and what about the creation of the record? How and where would you create the record of your illness and your healing?)

Maybe valuing each individual’s story would begin to let us re-humanise Medicine?

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