Archive for October, 2012

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 In fact advice is more likely to have been replaced by a list of drugs prescribed.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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The placebo effect is not a zero effect. It’s an effect. It induces change.
Irving Kirsch in his The Emperor’s New Clothes prints a simple bar chart comparing antidepressants, placebo and doing nothing in terms of clinical improvement in patients with depression. That chart shows two things.
The difference between antidepressants and placebo is so small he argues there is no clinically significant difference (apart from in patients with severe depression).
The difference between doing nothing and the effects of giving a patient an antidepressant or a placebo is huge.
In other words, despite the fact there is a barely discernible difference between antidepressants and placebo, he does not recommend doing nothing instead.
Some claim that if a treatment shows no significantly greater effects than placebo we should stop providing that treatment. But if the treatment is replaced with doing nothing there will be a reduction in the benefits experienced by the patients.
All drugs work partially through the placebo effect. In fact, every treatment contains a placebo effect. Randomised controlled trials (RCTs) comparing one group which receives the drug, and one which receives a chemically inert substance (termed placebo) mislead people into thinking there is no placebo effect in the drug group. But there is. The placebo effect is embedded, inextricably.
It is impossible to discern, in an individual case, what proportion of the improvement is due to the direct effects of the treatment and which are due to the placebo effect.
RCTs don’t help clarify that in individual cases. Don’t we need more comparative studies instead? Comparing treatment A to treatment B raises a different set of questions from comparing either to a “placebo group”. As does comparing either treatment group to a “no treatment” group.
I repeat. The placebo effect is not a zero effect.

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I’ve always taken great pleasure in making a diagnosis. But for me, I go back to the roots of the word. A diagnosis is an understanding. It thrills and delights me to be able to understand people. I think that’s the beginning of the journey to health, because as I concentrate on trying to understand someone, they usually increase their understanding of their condition and even of themselves. That’s powerful and I think, as we are all meaning seeking creatures, it’s a key goal of most consultations – to make sense of our lives (through the creation of our stories) But I reject the reduction of diagnosis to labelling or categorising. For me, that’s just not good enough. I want to know more than the name of a disease. I want to know a person.

Iona Heath writes eloquently about diagnosis in this week’s BMJ

Beyond the technical expertise of those in the craft specialties, the key skill of all doctors is diagnosis. However, diagnosis itself poses profound problems of scope and usefulness. Every experienced clinician is fully aware that no two people ever experience the same diagnosed disease in exactly the same way, and yet the taxonomies of diagnosis and the international classifications that underpin them ignore this underlying truth. The diagnoses tabulated in this way are theoretical abstractions, but we are inclined to give them a level of credence and reality that tends to exceed that granted to the patients so labelled. In this way, our diagnoses begin to condone structural violence and to excuse social injustice

Good diagnosis is an individualising process, not a generalising one.

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Thomas Berry describes sunrise as earthfall. He points out that it’s the Earth which is turning in relation to the Sun, not the other way round.
As dawn approaches you move towards the Sun. If you think of the Earth as a giant ball you can see that as you stand on it, and it turns towards the Sun, you are in fact falling into the day.
I wonder what the day will feel like if I think of myself diving into it every morning?

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