Heroes Not Zombies

In an earlier post, I showed this page from my notebook and explained the left hand page – the one about making a diagnosis. Once we understand someone, then we can begin to help them. The right hand page is my mind map to think through some of the issues related to that.

Most diagnoses focus on the physical, measurable “disease”. This naturally leads to treatments being designed to address pathology. In acute disease this is highly relevant. If you’ve broken a leg, you want a treatment which will lead to repair of the bone. If you’ve had a heart attack, you want a treatment which will address the damage done to your heart, and so on. Most drugs and most surgical procedures are designed to do just that – they address the damages tissues and attempt to effect a repair. A repair is either the removal of a lesion, for example, a wart, or a tumour. Or it is a restoration of a necessary balance in the body eg replacing insulin in diabetes. Actually, this is a commonly misunderstood element of medicine. Drugs and operations don’t actually repair anything. They simply, at best, assist the body in effecting its own repair. It’s not the orthopaedic surgeon who heals the bone, it’s the body. Similarly, we tend to think antibiotics cure infections. They don’t. They kill bugs. It’s the body which heals the inflamed lungs, or throat, or bladder, or whatever was infected. This whole approach accounts for much of modern medical practice. It’s materialistic, reductionistic and focussed on measurements of change and definable outcomes. Yet, the misunderstanding about how healing is actually coming about means that the focus is too narrow and overplays the role of the treatment at the expense of the individual human being.

What if helping someone who is ill, is more than a matter of repairing? Well, the next part of the diagram shows how we can focus instead on resilience. By resilience I mean the human capacity to adapt and to cope. The body’s natural defences and systems of repair are a manifestion of a person’s resilience. You know how if your general energy and mood is low, your immune system is compromised and you catch more minor infections? Not only that, in such a state it takes longer to get over something. An intervention which explicitly seeks to foster resilience, fosters repair too. I think this is a concept you’ll understand very quickly, but, clinically, it’s a lot harder than repair. For a start, the contexts of someone’s life plays a big part in their resilience. We see this in work which shows how dates of deaths are often related to significant personal dates – like anniversaries, birthdays and so on. We also see this in work on the effect of the physical environment on recovery rates after operations in hospitals. Resilience is a fundamental part of self-recovery and self-repair. It’s probably a part of the explanation for placebo effects. But it is terribly poorly understood and researched – probably because there are no simple resilience drugs to be marketed!

The final part of the right hand page above is about “growth”. The most amazing result from an illness is when a patient doesn’t re-establish a status quo but where they actually become stronger and more resilient through the experience of the illness. A classic example of this is the Lance Armstrong story – “It’s Not About the Bike” – where he shows how overcoming cancer actually made him into the man who could win the Tour de France more times than any other man in history.

What interventions would explicitly support and encourage growth? Well, that’s even more complex than the resilience issue and even more personal and individual.

But I think that’s our challenge.

I think we need to develop systems of health care which explicitly address the issues of resilience and growth. If we don’t do that, we just end up fire fighting again and again and again. We don’t want to just fight infections, we want to develop people’s capacity to remain healthy and well-defended against infection and other diseases.

So, here’s my wondering and, I hope, some of you will wonder about this too – what would a health service look like if it was more than a repair service? What would we do to encourage and support resilience and growth?

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.

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.