Heroes Not Zombies

Here’s an example of how I think something through. I often write out my thoughts in a notebook and frequently I do so by constructing a kind of mind map – not the Tony Buzan kind of mind map with all its bells and whistles but spreading the main ideas and concepts out over a blank canvas then seeing the connections between them and using boxes and arrows to tie it altogether. When I was wondering about what exactly is a doctor’s job recently I drew this map –

Let me explain it because some of it might be self-explanatory but it’s drawn as a thinking tool, not a communication one.

On the left hand page I’m thinking about diagnosis and the difference between the concepts of “disease” and “illness”.

People present to their doctors with symptoms (what they experience) and signs (what the doctor can feel, hear, measure and so on). Together they are used to make a “diagnosis” – a diagnosis, is, essentially, simply and understanding. It’s where the doctor recognises what these symptoms and signs are evidence of. Actually, diagnosis in the biomedical approach (that’s what we European and American doctors sometimes call “Western medicine”), is usually about discovering and naming pathology ie diseased tissue. Historically, that was known as the “lesion”. It’s a very materialistic and, frankly, usually reductionist approach to medicine. That circle means that it’s the symptoms and the signs together which constitute the diagnosis. What Kroenke and others have shown us is that there is a relationship between the symptoms and signs but whilst a sign may be highly likely to be indicative of a certain pathology, symptoms most definitely are not. Kroenke shows that over 80% of the symptoms patients experience are NOT caused by any “lesions” or pathology. This is best understood by thinking about “disease” and “illness” differently. Eric Cassell is great about this. He says “disease” is what the organ has and “illness” is what the man has. Disease is about pathology and illness is about suffering. It’s illness that encompasses the subjective experience and disease remains an objective, measurable concept.

So, as doctors, we can engage with the patient at the level of their disease, but if we want to help relieve suffering we have to think more broadly than that, and expand into the unmeasurable. This is where stories come in. People convey their illnesses by telling the stories of their experience. Two things about this are highlighted in the above mind map. Firstly, that experience is interpreted by patients themselves as well as by their doctors. It’s through narrative (story-telling) that we make sense of our experience. It’s through narrative and talking that we can understand the meaning of our illnesses. People like Darian Leader and David Corfield, and Brian Broom have made that very clear in their work on psychosomatic medicine.

Once we start to consider more than the material, the physical and the measurable, we can start to try and understand an illness in the contexts of a person’s life. The triangle of body, mind and spirit highlights how context might refer to what’s important in an individual person’s life. Some people talk about physical and material needs and security, others primarily of feelings and relationships and yet others of a world greater than themselves ie of purpose, meaning and belief. A patient’s suffering needs to be understood in the context which matters most to that person. Some people for example have chest pain because they believe they’ve offended God, others because they’ve been humiliated or abandoned and yet others because they’ve lost their jobs and income.

The final part of that left hand page is the contexts of the individual, their relationships and their environments (cultural and physical). Cassell again is great on this, asking the question of where a patient’s suffering actually lies – is it in them, their relationships or family, or their society or culture?

Many doctors don’t consider these questions but I think if we want to understand people we have to go further than the materialistic, disease model.

OK, that’s enough for this post! I’ll cover the right hand page, which is about thinking through appropriate interventions and treatments, in another post.

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Dr Des Spence is a Glasgow GP who writes a regular column in the British Medical Journal. I frequently find myself agreeing with what he writes and this week is no exception. He looks at the way doctors (and the public) are presented with “the facts”. It’s all in the way the statistics are chosen and published. He takes the West of Scotland Coronary Prevention Study as his working example. This large study showed a reduction of 32% in the deaths of men in the study who took statins to lower their cholesterol. I won’t re-iterate the detailed statistical analyses here, but that’s the “relative risk”, and another way to present exactly the same findings is to show that the “absolute risk” shows reduction in mortality from cardiovascular disease was 0.7%. That’s startling enough, but what it means is that you have to treat 715 men with the statins to save 1 life. In other words, one person benefits and 714 take the pills but don’t benefit.

I wrote about this in an earlier post where I reviewed “Reckoning with Risk” by Gigerenzer. I urge you to read either that book, or his “Gut Feelings“. You’ll never swallow “the facts” so easily again.

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There’s an ad running on TV here in the UK at the moment. It’s for a drug called Anadin Extra – a painkiller basically.

This really struck me. Here we have a woman with too many responsibilities, trying to literally juggle her tasks and her relationships. She’s not coping. She’s getting headaches. How is she going to get a better life? How is she going to tackle that old life-work balance thing? How can she be happier, healthier?

The drug companies answer?

Take drugs

I think that’s sad – especially when the drug companies themselves even know that most drugs don’t help most people.

What kind of a vision is this for a healthy society?

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…..same principle I guess. Without considering the individual and unique contexts of a person’s life we can neither understand their illness, nor help them find the best treatment and support. Iona Heath, who writes in the BMJ tackles the dumbing down of medicine in another article this week

We are witnessing a degradation of knowledge, which results from its bureaucratic application to whole populations. Too often, evidence from clinical trials is being shamelessly extrapolated across time, across population subgroup, and across condition. Again and again, efforts are concentrated on crude process measures, while clinical outcomes that are genuinely significant for patients because they reduce or delay suffering or prolong life are ignored. Thirdly, the present state of clinical evidence systematically neglects the reporting of harms

The point she is making is that we are abusing research findings which are conducted on specific groups of people by extrapolating the findings and conclusions and applying them to hugely diverse and significantly different groups of patients. The more we generalise, the poorer our understanding and effectiveness. She argues strongly for not applying the findings of the effects of a treatment on young people, to old people, for example. This is because of two main problems – first the setting of outcomes by the researchers (outcomes which might be important to the group under study, but not the most important to another group) and secondly because of a huge under-reporting of harms of a treatment.

As more and more treatments are directed at an intended long term outcome, the older patient is less likely than the younger one to have a chance of the intended benefit. However, as harms start straight away with treatments, the older patient is more likely to experience harm than benefit than the younger one. In addition, because of other body systems already failing, the elderly patient is more susceptible to harms from drugs than the younger patients.

And that’s just the consideration of age. What about other factors in other contexts which make a substantial difference? Sex, the presence of other diseases (‘co-morbidity’), and economic, social, cultural and psychological factors?

Context is all important in chronic disease especially. Here’s why…..

In acute disease, as we see on the far left, the green circle represents the pattern of symptoms consistent with the disease, and pretty much determines the whole picture. Most patients who are rushed into hospital have obvious patterns of disease. As time passes however we see that the green circle becomes a much smaller subset of the overall symptoms. This is because as the years pass, the individual brings more and more of themselves and their unique contexts into the overall picture. If we only aim at the disease, we miss helping most chronically ill patients.

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