Heroes Not Zombies

In How Doctors Think, Jerome Groopman, argues against the modern tendency to reduce human beings to averages and medicine to a slavish adherence to algorithms.

Clinical algorithms can be useful for run-of-the-mill diagnosis and treatment….But they quickly fall apart when a doctor needs to think outside their boxes, when symptoms are vague, or multiple and confusing, or when test results are inexact.

There are some people who think “science” (which has been defined as the study of what can be measured – not a definition I would accept!) is about “facts”. By this they tend to mean phenomena which can be isolated and observed objectively. But human life is more complex than the sum of the bits that such scientists study. This is especially obvious to anyone who has worked in a Primary Care setting where patients typically tell stories of “vague, or multiple and confusing” symptoms and where the test results are frequently ambivalent. You can’t understand a person by focusing simply on the measurable bits.

Today’s rigid reliance on evidence-based medicine risks having the doctor choose care passively, solely by the numbers.

You know, it’s almost considered heresy in some places to raise any kind of question mark over the hegemony of EBM, but if we want to be rational human beings who think for ourselves and don’t just do what others tell us, we should question those practices. Those who would try to divide all therapeutic interventions into “proven” and “unproven” and devise “guidelines” which  only allow for the availability of the “proven” treatments are going to stop progress in its tracks. There are not two fixed boxes in medical practice with one containing “proven” treatments about which all that needs to be known is known, and one containing “unproven” treatments about which we needn’t bother finding out any more.

Statistics cannot substitute for the human being before you; statistics embody averages not individuals.

When I read that statement I thought about a talk given by a statistician which pointed out that the average number of legs which each person in the UK has is less than two – yes, think about it for a moment – because thousands of people have lost a limb the total number of legs is less than 2 x the population of the UK, therefore the average number of legs a UK resident has is 1 point something! I know, it’s silly, but it does make a valid point – you can’t treat individuals as averages – frequently, there is no Mr or Mrs Average!

What is Dr Groopman’s recommendation in the face of this? Well, he quotes one of the doctors whose conversations make up the text of this book –

Falchuk paused “And once you remove yourself from the patient’s story, you no longer are truly a doctor”

Patients’ stories are frequently dismissed by scientists as anecdotes (and they say that contemptuously) but in clinical practice they are really the key.

Here’s to the patients! You are the heroes of your stories.

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Iona Heath wrote an open letter to Gordon Brown in the BMJ this week. She quotes his recent statement on preventitive services in the NHS –

…..an NHS which:”Identifies your clinical needs earlier than before, is targeted to keeping you healthy and fit, and puts you far more in control of your own health and your own life. And in the long run a preventive service personal to your needs is beneficial not just to individuals but to all of us as we reduce the cost of disease.”

She reminds us that Beveridge said at the time of the setting up of the NHS that he –

envisaged “a health service which will diminish disease by prevention and cure.” He foresaw “development of the service and as a consequence of this development a reduction in the number of cases requiring it.”

It was nonsense then and it’s also nonsense now. Neither the disease-focussed treatments of the NHS, nor the screening and early intervention strategies proposed will lead to a healthier nation. Iona Heath writes –

Medical science does not save lives, it defers death. No one lives for ever and, on average, a quarter of a lifetime’s costs of health care are incurred in the last year of life, whenever death occurs. Preventive health care, when it lengthens lives, exposes people to other health risks and cannot reduce costs. You imply that preventive health screening is an entirely benign endeavour and you make absolutely no mention of the well recognised harms of screening. When those who consider themselves healthy submit themselves to screening, they confront the possibility of serious disease and inevitably this can cause a burden of anxiety that varies from the trivial to a severity amounting to disease in itself. Every screening test gives both false positives and false negatives: the one dangerously reassuring, the other leading inevitably to further investigations that become increasingly invasive and risky.

and

Your problem as the financial custodian of the health service is that much of the burgeoning pharmaceutical treatment of risk factors is futile. Once a risk has been identified and treatment initiated, there is no way of knowing whether the treatment is effective but, none the less, it must be continued. The outcomes are negative, can only be measured at the population level, and cannot be assessed in relation to the individual taking the medication. A health service based on need and the relief of suffering is affordable by a tax paying population; one based on treating every identifiable risk factor is not.

These excellent points are not heard often enough. Too often the drug treatment of a risk factor is promoted as being life saving. Even if it did what it claimed to do it would not save lives……it would change the cause of death and in doing so alter the life experience. This is not the way to help more people experience better health for more of their lives.

Dealing with poverty, the enormous and increase disparity in incomes, improving housing, education and the experience of work, have all been shown to be factors which help to improve the health of populations. These interventions don’t try to pick off risk factors one at a time, they improve quality of life and resilience overall.

Isn’t it time we started to take on board that health is not the mere absence of disease, and therefore to understand and promote what is genuinely healthy instead of focusing on disease avoidance?

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Jason Robert, of Arizona State University, made a presentation on Feb. 16 at the American Association for the Advancement of Science annual meeting. The focus is on mental health, but I think if you take a whole person understanding of health and illness you’ll agree that his points apply to all of health care.

“My claim is that gene maps and brain scans will likely not be able to offer universal, culture-free representations of the essence of mental illness. That is, mental illness is subject to biological and socio-cultural factors, such that isolating any of these as core elements will almost always miss the mark at the expense of patient care,”

He talks about how “personalised medicine” is being presented as a focus on DNA, with promises of new understandings of disease and new treatments which emerge from this genome-focus.

“None of these predictions have borne out, in part because they fail to grapple with the complexity of human beings — as brains, bodies, and, embedded in culture, steeped in history, and dynamically creating their own words,”

How well said! The attempts to reduce human beings to their elements, isolate those elements and treat them as if they were not a part of a whole, are doomed to failure because that’s just not how human beings function. It’s not real. What’s real is that the mind and the body are not two separate entities but are both manifestations of the one organism and that organism is embedded in physical, social and cultural environments – embedded – cannot exist in any kind of environment-free setting (if you could even imagine such a possibility!). And, his final, crucial point in that quote above – “dynamically creating their own words” – more than that, we can see that we actually create an entire sense of self from our own words….from our personal narratives.

He says

“We feel this newest generation of physicians have to be deeply well-trained in genetics and neuroscience, but not at the expense of a deep and meaningful training in interpersonal communication, interaction with actual people who really at the end of the day are your patients and your first priority,”

We really are in danger of losing this. The current trend is towards an increased dominance of statistics, management methods and pharmaceuticals. At the end of the day we are going to have to reclaim the central priority of the individual patients doctors see every day. I’ve just finished reading Jerome Groopman’s excellent “How Doctors Think” (which I will write a few posts about in the coming days) and he makes it so clear that without conscious engagement of the doctor with the individual patient, really nothing can go as well as it should. I’ve been teaching Fourth and Fifth Year Medical students this week and I was pretty shocked to hear from them that when they are being trained to “take a full history” ie to meet a patient for the first time and hear their story, they are only allocated 20 to 30 minutes to do so. When I was at Medical School, as beginners we were given an hour to that job. Once you moved from being a student to being a doctor the time pressures ratched up enormously and you had to hone your case taking skills down to just a few minutes in acute situations. However, at least you had a thorough grounding in a more comprehensive, patient-centred history recording. (Groopman says every generation of doctors thinks they were better trained than the current one. In terms of making a diagnosis from the history alone I’m afraid I am guilty of sharing that belief – is it true?)

In arguing the case for not oversimplifying our cultural understandings of people, he says

“We shouldn’t pretend that culture is any easier to understand than a person is; to understand that you can’t have caricature of culture in mind. What’s really critically important is understanding cultures dynamically, as complex, historic, social and political structures that dramatically influence people’s lives.”

I like that because I think there is a real tendency in all of us to stereotype people on a cultural basis without really understanding the culture at all. I also like how he points out that culture is a dynamic phenomenon, not a fixed one.

The conclusion of the piece is absolutely spot on –

While Robert acknowledges that it’s certainly the case that DNA and brain scans are going to be important, “if you ignore everything else, you might never have the capacity to actually influence the well-being of the patient.”

Well said!

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I feel most uncomfortable about the direction of health care delivery in England just now. It’s not just the supermarket type of ethos of purchasers and providers which I dislike, but it’s the compartmentalisation of human experience into boxes labelled “disease” or “risk factor”. This reduction of a human life to “manageable” units each of which can then be dealt with by any faceless and nameless practitioner is deeply disturbing.

Surely health and illness are human experiences? Neither can be properly understood from averages and statistics. Neither can be understood or engaged with meaningfully without consideration of both the personal, subjective experiences which the patient relates through their unique narrative, nor without consideration of the contexts of an individual’s life. But more than that – isn’t health care a human activity which cannot be understood outwith the human relationships of those involved?  Doesn’t it matter exactly who the doctor is?

Lord Darzi is promoting the development of polyclinics (also rather offensively I feel, referred to as “one stop shops”) where many, many doctors work in the same building. He says the days of personal relationships with individual doctors are behind us as most single handed practitioners now practice in at least groups of 4 – 6, so what’s the difference if they practice in groups of dozens? Aren’t they all interchangeable?

I really disagree. Who says that an individual practitioner is a bad idea? Take a look at Tom Bibey’s blog for a most excellent example of what a single handed doctor can do. Clinical practice is about people, not populations. A trusting relationship built up between a patient and an individual doctor is worth its weight in gold. We only see this being devalued when we move from a concept of health care which reduces human beings to diagnostic categories.

I would suggest that what health care needs to do is to enable the creation of better, personal, holistic services and that will only be achieved by putting “whole” people, and human relationships, at the heart of the plans.

Health and illness are about people. It’s personal medicine we need, not processing plants.

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Prescribing statins (lipid lowering drugs) prophylactically to try to reduce heart attacks has become big, big business. Just one drug, Lipitor, made by Pfizer, made $12.7 BILLION of sales last year alone. Health Insurance companies in the US, and the national GP contract in the UK reward doctors for putting patients with “high” cholesterol onto statins to produce lower blood levels in those patients. But does this do any good?

Many studies have shown that if you prescribe statins to people who have had a heart attack, then you are likely to reduce the rate of death from strokes and further heart attacks. For every 28 patients over 65 with heart disease who take statins, one life will be saved. The population based West of Scotland study showed you needed to treat 715 men to save one life.

However, studies of those without heart disease, and those aged over 70, have failed to show any significant lowering of mortality from the consumption of statins.

There are two other problems with statins – firstly, if they do what they say they do, they will reduce deaths from heart disease. What they don’t do is improve the quality of life of those who take them. Secondly, many experts believe the incidence and severity of side-effects from taking statins for many years is unknown, and probably underestimated.

We are right to be sceptical of drug company sponsored “evidence” when considering mass treatment of healthy individuals whose cholesterol level happens to fall outside the promoted “norms”. This is a problem which is widespread in medicine. A finding from one group of patients is turned into “evidence” and is then applied widely to groups of the population who are significantly different from the experimental group.

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There has been an accepted wisdom in the management of diabetes. Diabetes, as you probably know is a disease which presents with abnormally high levels of sugar in the blood. It’s actually a complex disease and involves much more than sugar levels but doctors, dietiticians and other experts have always worked on the premise that if you can “normalise” the patient’s blood sugar level, then you’ll reduce the risks they have of the serious harms that come with this disease. One of the most serious potential harms is death from heart disease. Now a study which has run for four years has come up with a totally surprising result.

Researchers took people who have “Type 2” diabetes (by far the commonest form of diabetes, and not the kind that usually required insulin treatment – that’s the kind that affects younger people mainly) and they randomly assigned them to different groups. The study is looking at management of sugar, cholesterol and blood pressure. The groups studied for sugar control were divided into an “intensive” control group and a “less intense” control group. The former group has had diet and drugs to try to maintain a blood sugar level the same as that found in people who don’t have diabetes. Everyone expected that the less well controlled group would suffer more heart disease but the study has just been stopped because so many more people in the “intensive” control group have died from heart disease than in the less well controlled group. This is totally contrary to expectations, and, so far, nobody has come up with an explanation.

The researchers are at pains to say that diabetics shouldn’t give up their drugs because we don’t yet understand what’s going on here and there is still clear evidence that blood sugar levels which go sky high pose a serious immediate risk to health.

Here’s the statement which really struck me though –

Clearly, people without diabetes are different from people who have diabetes and get their blood sugar low.

I suspect the answer to this puzzle will be found when that conclusion is taken on board. Human beings are just not like machines, and the idea that health can be achieved by managing to control the level of a single particular component of the body within an artificially set of “norms” is misguided. You don’t cure diabetes by assuming the only difference between a diabetic and a person without diabetes is the level of the blood sugar.

This is an excellent example of why we need to understand health and disease from a complexity perspective rather than a simplistic, reductionist one.

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