One of the things that frustrates me about clinical epidemiology (which goes by the name “evidence based medicine”) is how often it seems detached from the real world. Whilst researchers and statisticians pore over reviews of randomised clinical trials, real people with real problems turn up each day in the doctors’ consulting rooms. In the British Medical Journal there’s a regular column entitled “From the Frontline” and it’s written by a Glasgow GP called Des Spence. I always read his column because so often it reflects the daily reality I used to experience as a GP and which I still experience as a Glasgow hospital doctor. This week his column was particulary good – a healthy, realistic alternative view of the government’s “Quality Outcomes Framework” within which all UK GPs now practice.

It is not just the huge financial opportunity cost, nor the well made unwell, but the wanton consumption of our medical energies that I take issue with. Our energy has been spent bean counting the measurable while dismissing the most valuable aspect of medical care, the immeasurable. Perhaps I am wrong. But I will stand my ground of absolute scepticism until some redcoat finds real evidence to run through my Jacobean heart.

Well said, Des!

I especially appreciate your succinct “Our energy has been spent bean counting the measurable while dismissing the most valuable aspect of medical care, the immeasurable.” It’s a daily sadness to me that we increasingly pay attention to the measurable while dismissing the immeasurable in health care.

Researchers at Ohio State University have just published a randomised clinical trial of pyschological interventions in women with breast cancer. Here’s the summary conclusion –

breast cancer patients who participate in intervention sessions focusing on improving mood, coping effectively, and altering health behaviors live longer than patients who do not receive such psychological support. The study indicates that reducing the stress that can accompany cancer diagnosis and treatment can have a significant impact on patients’ survival.

This was a study of 227 women who had been treated for breast cancer for an average of 11 years. Half of them were given an intervention designed to address stress and help them cope better psychologically (I can’t find the actual detail of the intervention yet!). The intervention group experienced about half the recurrence rate of the others and that group also had about half the risk of death from breast cancer.

Two things interest me about this trial. Firstly, it shows that non-drug, non-surgical interventions in serious conditions like cancer can both positively influence the course of the disease and even reduce the chance of dying from the cancer. Secondly, by reporting improved mood, and healthy behavioural changes, the researchers highlight the value of interventions which make living better. I recently wrote about death avoidance and made a plea for health care which is focused on living. This little trial is a piece of that jigsaw. It not only shows the potential for such interventions but it begins to make the case for such approaches to become routine.

A few years ago I stumbled across the works of the “General Semanticists“. I won’t go into detail about this school of thought here, but it originated with a man called Alfred Korzybski in the early years of the 20th century. He wrote and taught about the way in which human beings reacted as whole organisms to their environment. One of the most interesting features of this way of thinking is the emphasis it gives to not only environment, but to what Korzybski called the “meaning environment” – in other words both symbols and the symbolic power of the environment itself. This focus raises all kinds of issues including change, transience, and context. The book which made this whole way of thinking clear to me was Samuel Bois’ Art of Awareness (ISBN 978-0965103701).

One of the ways of thinking they highlighted for me was “two value thinking” – we do this a lot. It’s the process by which we classify experience into one of two categories – us and them; black or white; and so on. Although generalisation and categorisation can be useful tools they are dangerous and frequently stop us seeing reality. You’ll come across this a lot in medicine. I’m sure you’ll have heard people talk about treatments as either “proven” or “unproven”; “evidence-based” or “not evidence-based”; “drugs which work” and “drugs which don’t”. But this is a silly and unhelpful way to think about treatments because all treatments need to be considered within the inescapable context of the individual. And you can’t even say a treatment “works” or “doesn’t work” for an individual – the same treatment can work at some point for a person, but then not work at another.

Think about painkillers as a simple example. Is there a “proven” painkiller which will kill pain for all individuals on all occasions? No. And, actually, it’s the same with all medical treatments. The only person who can tell you whether or not a treatment is beneficial for them, is that person – doctors have to listen to their patients and hear what their experience is. It’s very frustrating for patients to be told by a doctor that their lack of benefit they’ve received from a particular treatment is their own failure – because the treatment is “proven”. Similarly, it’s very frustrating for a patient to be denied a treatment which brought them benefit because somebody has ruled, on the basis of clinical epidemiology, that that particular treatment is “not evidence-based” or “does not work”.

The world is more complex than that. See if you can spot any two-value thinking today, and consider different contexts to see the weakness of this type of thought.

What’s the point of health care? Does that seem like a question with an obvious answer? It would be reasonable to expect that the answer would be that health care is about caring for people’s health. But that’s an answer which is not really an answer. It raises the question, what is health? Stop and think about this for a moment, because it’s not a straightforward question to answer. My answer is that health is a phenomenon in its own right – it is NOT the mere absence of disease. It has distinct characteristics – adaptability, creativity and engagement. Others will have other answers, other characteristics to add, other qualities. It’s difficult to extricate health from the old concept of “eudaimonia” which tends to be translated as “happiness”, or even “wellbeing”, but I prefer the word “flourishing”. Surely health is about flourishing? The less we flourish, the less we rate ourselves as being healthy, well, or good.

This way of thinking about health is holistic. It demands that we consider the whole of a person’s life, and by that I mean the whole of their present time life (a biopsychosocial approach), and the whole of their life from start to finish. This has at least two consequences. Firstly, it means that all health care must take into consideration, not just objective disease in the form of pathology or lesions, but it must consider the individual patient’s story. No two patients have the same life, and therefore, no two patients share the same experience. With the same disease, two people will experience different symptoms and those symptoms will mean something different to each of them. In addition, each individual will have their own ways of coping, adapting to and dealing with their illness. Health care needs to relevant to the individual who is being cared for.

Secondly, it means that health care interventions will alter the experience and course of a person’s life, but they do not, ultimately, prevent death. The overall mortality for human beings is 100%. We do all die. But much of contemporary health care is predicated on the basis of death avoidance. We are bombarded with claims about “life-saving” medicines and Public Health policies which claim to reduce death rates. Statins, for example, are even promoted for healthy people, to reduce their risk of death from heart attacks and strokes. Whilst nobody would really like to have a heart attack or a stroke, no-one is asking the question, what do people who would have died from a heart attack or a stroke die from instead? The focus is on death avoidance. People are classed as being “at risk” – at risk of dying from disease x. But to make an informed choice about a treatment don’t you need to have an idea of the possible and likely consequences of that treatment? To say a treatment reduces your risk of dying from disease x is all very well, but it doesn’t say much about whether or not you’ll experience a life of greater flourishing. Especially if you develop another more disabling, painful condition instead. The logical extension of this death avoidance thinking is to try to avoid death from all causes. For example, some doctors and scientists have promoted what they call the “polypill” – a combination of drugs all in one pill, which, if taken by the whole population (or in this case the whole population over the age of 50), would significantly reduce the death rate from cardiovascular disease. Well, if you don’t die from cardiovascular disease, what do you die from? Cancer? Nervous system disease? Liver disease? Blood diseases? There’s no way to know of course but isn’t it true that it will be something else? Or do you think healthy people die disease-free?

It’s likely that a person will fight hard for life at all times. (Well, not everyone, as Dylan Thomas wrote, “Do not go gentle into that dark night. Rage, rage against the dying of the light.” exhorting his father to fight for life at the end of his life). Around a third of all health care expenditure is on people in the last year of their lives. (see New England Journal of Medicine 1993:328:1092-6 for example)  You might hope to live three score years and ten, and if you do, you can expect that most health care you receive will be in your last year of life. Think of it this way – assuming 70 years of life (I know, that’s quite an assumption!), one third of your health care will be in one seventieth of your life and two thirds for the other sixty-nine seventieths. Why is that? Because you can expect to flourish for 69 years and suffer for one? I’m not sure that’s most peoples’ experience. If health care is about improving life as opposed to merely trying to avoid death why don’t we direct more of it to life instead of death avoidance?

It seems that our so-called “health care” isn’t focussed on health at all. It’s focussed on death avoidance. That was the goal of the alchemists – the elixir of life which would produce immortality. But that’s a myth isn’t it? Shouldn’t we have health care which is more realistic? After all, if we do address illness holistically, reducing suffering, encouraging healing, resilience and growth, aren’t we likely to also increase the length of life? Might that not be a better way to avoid “premature deaths”?

Maybe we should be concentrating on increasing health, in a eudaimonic sense, instead of concentrating on avoiding death, which, realistically, is ultimately impossible.

It kind of annoys me how some illnesses are considered “real” and some not – fibromyalgia is one of those controversial disorders which some doctors dismiss as depression simply because the patient is down (who wouldn’t be with daily pain??) and because none of the tests show anything abnormal. It will probably turn out that this is one of those cases of looking in the wrong place. Because the pain is felt in the muscles, doctors have tended to look at the muscles. And they don’t find anything abnormal. So they look at the joints, or the tendons, ligaments and soft tissues around the joints. Nope, still don’t find anything wrong.
Well, here’s something interesting from France -a team of researchers have found consistent abnormalities in brain function in patients with fibromyalgia. Specifically, they’ve found abnormalities of function in distinct areas of the brain independent of the patient’s depression score. Here’s what they found –

The researchers confirmed that patients with the syndrome exhibited brain perfusion abnormalities in comparison to the healthy subjects. Further, these abnormalities were found to be directly correlated with the severity of the disease. An increase in perfusion (hyperperfusion) was found in that region of the brain known to discriminate pain intensity, and a decrease (hypoperfusion) was found within those areas thought to be involved in emotional responses to pain. In the past, some researchers have thought that the pain reported by fibromyalgia patients was the result of depression rather than symptoms of a disorder. “Interestingly, we found that these functional abnormalities were independent of anxiety and depression status,” Guedj said.

The authors go on to conclude –

“Fibromyalgia may be related to a global dysfunction of cerebral pain-processing,” Guedj added. “This study demonstrates that these patients exhibit modifications of brain perfusion not found in healthy subjects and reinforces the idea that fibromyalgia is a ‘real disease/disorder.'”

I do think this is good news. It means that doctors are beginning to discover something about what kind of disorder fibromyalgia is. But I do despair about this continued categorisation of disease into “real” or not. (with “not” usually being categorised as mental illness) Mental illnesses, such as depression, should be diagnosed in their own right, not as what’s left over after a battery of tests are returned with “normal” stamped on them!