Heroes Not Zombies

Patients present their problems to doctors as stories. Stories are the way we attempt to communicate what’s invisible – the inner, subjective reality that only we can experience. Take pain as an example. There is no way to see pain, or to experience another person’s pain. There are no instruments to measure it. So when someone presents with pain, doctors try to hunt down any physical abnormalites, any “lesions”, which might be the source of the pain. The trouble is, whilst the physical, the objective, the “lesion”, can be seen, or measured, or even touched, none of those qualities make it more real than the subjective experience of the invisible, un-measurable, symptoms. That’s not the way most doctors see it though. There is an enormous tendency to rate the “lesion” above the experience. Why is that a bad idea? Well, not least because the relationship between lesions and symptoms is non-linear at best, and coincidental at worst!

I came across an interesting article recently about how misleading MRI scans can be. It cited two fascinating studies.

An infamous 1994 study published in The New England Journal of Medicine imaged the spinal regions of ninety-eight people with no back pain or any back related problems. The pictures were then sent to doctors who didn’t know that the patients weren’t in pain. The end result was shocking: two-thirds of normal patients exhibited “serious problems” like bulging, protruding or herniated discs. In 38 percent of these patients, the MRI revealed multiple damaged discs. Nearly 90 percent of these patients exhibited some form of “disc degeneration”. These structural abnormalities are often used to justify surgery and yet nobody would advocate surgery for people without pain. The study concluded that, in most cases, “The discovery by MRI of bulges or protrusions in people with low back pain may be coincidental.”

So lesions without stories are just misleading aren’t they?

A large study published in the Journal of the American Medical Association (JAMA) randomly assigned 380 patients with back pain to undergo two different types of diagnostic analysis. One group received X-rays. The other group got diagnosed using MRI’s, which give the doctor a much more detailed picture of the underlying anatomy. Which group fared better? Did better pictures lead to better treatments? There was no difference in patient outcome: the vast majority of people in both groups got better. More information didn’t lead to less pain. But stark differences emerged when the study looked at how the different groups were treated. Nearly 50 percent of MRI patients were diagnosed with some sort of disc abnormality, and this diagnosis led to intensive medical interventions. The MRI group had more doctor visits, more injections, more physical therapy and were more than twice as likely to undergo surgery. Although these additional treatments were very expensive, they had no measurable benefit.

You might have thought that the “better” imaging technology would reveal the “real” lesions and so guide the doctors to the best treatments. Turns out that just wasn’t the case.

It’s very frustrating for a patient when their symptoms are dismissed because no lesions can be found (no physical diagnosis can be made), but it’s equally frustrating when the removal of such a discovered lesion fails to produce any lived benefits for the patient. We are beginning to see a greater use of “quality of life” questionnaires, and of “PROMS” (Patient Reported Outcome Measures) but there’s still a huge tendency to rate what can be measured over what can’t be.

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Surgeons are doctors of the visible par excellence. They explore their patients’ bodies to find lesions, swellings, ulcers, abnormal pieces of tissue or abnormal organs. My trainer taught me “If you send your patient to a man with a knife he’ll use it”. That was good advice. When you present your symptoms to a surgeon he or she will try to find a lesion which might explain them. They use their eyes and their hands, and, increasingly they use technology to explore the inside of the body, and discover the lesions which can’t be seen with the naked eye. Their treatments, as you might expect, are similarly very physical, very visible. They use knives, lasers, needles and thread.

Physicians are also doctors of the visible, but their concept of the lesion which might explain your symptoms can be much more diffuse than that of the surgeon. Physicians increasingly focus on the physical changes which can only be revealed by technology. Not just the imaging equipment loved by the surgeons, but also the vast array of lab tests which reveal quantities of particular molecules circulating inside their patients’ bodies. They even explore the molecules within DNA to find the “causes” of disease. Physicians, in other words, as just as concerned about the visible, the physical, the measurable, as surgeons are. Their treatments similarly match their understanding of illness. Just as surgeons use highly visible, physical tools, so physicians use those tools which are visible – drugs. This is different from the surgical toolkit of course because although a tablet, or a cream, or an injection might be very visible, the actual tools which do the job are the molecules which the visible “medicine” contains. You can only make these tools visible by using technology. The molecules can’t be seen with the naked eye.

Psychiatrists are doctors of the invisible. They explore the subjective content of human minds. You can’t see anxiety, depression, compulsive thoughts or psychoses with the naked eye and you can’t find them with technology either. These symptoms are like the wind in the trees. You can only see the effects of the symptom, not the symptom itself. It’s interesting to see how psychiatrists have used both visible and invisible tools to address these invisible diseases. The main invisible tool they use is language. All the psychoanalytic and cognitive behavioural approaches are based on listening and talking. The patient tells their story, the therapist interprets it and works to enable the patient to tell a different story, one which is healthier. But psychiatrists also use drugs the way a physician uses drugs, either to modify behaviour, or to alter levels of brain chemicals and in so doing alter behaviour. The most physical/visible part of psychiatric treatment is brain surgery, removing or inactivating parts of the brain to alter behaviour or experience.

I’m a doctor of the invisible but I’m not a psychiatrist. My everyday work consists of listening to patients’ stories in order for them not just to reveal the subjective contents of their minds, but of their bodies too. I’m interested in such invisible phenomena as pain, nausea, light-headedness, itch, numbness, well-being and exhaustion, as well as more mental ones such as depression and anxiety. Because I specialise in the invisible, in most cases I refer visible manifestations of disease to a colleague, but in acute situations I’ll initiate physical treatments myself. However, most patients who are referred to the hospital where I work have already had the visible addressed and are referred because their continuing distress or disability caused by the invisible. It’s interesting that the treatments I use, homeopathic medicines, are also invisible. Not just invisible in the way that a drug is invisible until analysed, homeopathic medicines don’t reveal their characteristics to either the naked eye or to technology. They only reveal their characteristics to the individual patient. It’s the change in subjective experience which shows the effect.

I’ve compartmentalised here to make a point. However, the reality is that most doctors deal with both the visible and the invisible. Most doctors are concerned not just with the lesions which might be found, but also with the lived, inner, subjective experiences of their patients. It’s just that most doctors are trained with a biomedical model in mind, and that gives a huge priority to the physical, the visible. With the growth of understanding around concepts such as biopsychosocial models, phenomenological and narrative approaches, and so on, we are beginning to pay more attention to the invisible, to patients’ lived experiences. It’s not only the physical that matters, and subjective experience is neither irrelevant, nor is it less important than the presence of a lesion. What we are beginning to understand is that the relationship between the visible and the invisible is a non-linear one, and that the presence or absence of a lesion may or may not be relevant to a patient’s actual experience. The logic and the science of human functioning demands that we should at least redress the imbalance between the visible and the invisible in health care, and in many cases, actually reverse the current situation.

It turns out that what is most important in health care is what the patient tells the doctor, not what the doctor tells the patient.

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I recently attended a two day “medical update symposium” for doctors at BMA House in London. I was impressed. The methods used and the organisation demonstrated were superb. One of the things we were encouraged to do after each session was to write down in the comprehensive handout three “take home” messages. A couple of days on from the event, as I think back over it, here are my three overall “take home messages” –

1. Continuity of Care. Both the respiratory physician and the dermatologist made pleas for continuity of care. The former showed a short video of a patient with COPD (Chronic Obstructive Pulmonary Disease) whose main point was how important it was for patients with chronic diseases to be able to see the same health carers over time, and the dermatologist commented how he came under pressure to discharge patients from his clinic and not follow up people with lifetime chronic skin disorders for life. So there are two aspects to continuity of care raised here – seeing the same carer and not having a chronic problem dealt with episodically. A third dimension was frequently referred to and that was the dis-integration of health care which is escalating on the back of the biomedical model (nobody used that term) which divides a person into their various diseases and disorders and attempts to deal with each of them in isolation (in the UK this is driven harder by what is called “QOF” – a system of paying GPs for reaching over a hundred different defined targets)

2. The non-linear relationship between disease and dysfunction (again, nobody actually used that language). The respiratory physician showed very clearly how a whole range of recommended and even mandatory lung function tests did NOT correlate with “breathlessness” as experienced by patients, so doctors could attain their targets, get paid, but the patient might still be complaining their life had not improved. The neurologist showed eight MRI scans of peoples’ brains and asked us to identify which one of the eight had any symptoms. ALL showed identifiable lesions. ALL but one were picked up incidentally while screening of looking for something else. That was one of the clearest demonstrations I’ve ever seen of the non-linear relationship between pathology and ill-health.

3. My third take home message was about prevention of cardiovascular disease – a subject repeatedly hammered home over the two days. Two flies in the ointment briefly appeared – in one session the presenter jokingly said that if the figures were extrapolated we’d have immortality within a few years (because stopping smoking, reducing cholesterol etc would “save so many lives”). A nonsense of course, but an important point. Exactly what are all the people who aren’t going to die from cardiovascular disease going to die from instead? Given that life has still stubbornly stuck with a 100% mortality rate.

The neurologist when discussing differential diagnoses of certain chronic neurological diseases, mentioned a particularly nasty, completely untreatable, progressive, degenerative disease and, again in a throw away remark, said you could hope the poor patient might be released by a heart attack or something before it got to this stage. I’m not arguing that preventing heart disease is a bad thing, just that it’s not an informed choice to make if you don’t consider what alternatives might then be your more likely future. (that would take me off down my hobby horse about the stupidity of basing health care on death avoidance, but I’ve done that elsewhere!)

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The BMJ “views and reviews” section often contains the journal’s most thought-provoking and interesting content. This last week included a review of John Wesley’s 1747 text called  “Primitive Physic: Or, an Easy and Natural Method of Curing most Diseases”.
You might know of Wesley as the founder of the Methodist Church and a prolific hymn writer, but I’m guessing that, like me, you didn’t know he’d written anything on health. I was struck by two features. First of all, in recommending particular drugs or treatments he says this –

I have purposely set down (in most cases) several remedies for each disorder; not only because all are not equally easy to be procured at all times, and in all places: But likewise the medicine that cures one man, will not always cure another of the same distemper. Nor will it cure the same man at all times. Therefore it was necessary to have a variety. However, I have subjoined the letter (I) to those medicines some think to be infallible

You’d be surprised how many people haven’t quite sussed out this wisdom! In this current regime of “Evidence Based Medicine” and Clinical Guidelines the strong impression is often conveyed that there are two kinds of medicines – those that work and those that don’t. In fact, if Wesley’s methodology were to be followed the authors of “evidence based guidelines” would be sorely tempted to mark all their recommended drugs with a “l” for “infallible”! When it comes to health care and available treatments we would do well to heed Wesley’s “ Therefore it was necessary to have a variety”.

The second feature was a scan through his “rules” for healthy living – read them in more detail here

Pretty much what he’s saying is take exercise (in fresh air), drink plenty of water, eat enough to feel well but no more, have a mixed diet with a ratio of meat:veg of about 2:3, and avoid processed food as much as possible (OK, for him processed was seasoned, spiced, pickled etc – but the point was still to eat as much unprocessed food as possible). Finally, abstain from alcohol, (tea and coffee if you have bad “nerves”), go to bed early, get up early and have a regular rhythm to your sleep habit. Sound familiar?
I was just at a Medical Update seminar in BMA House in London and lecturer after lecturer advised – stop smoking, drink more water, take regular exercise and don’t eat till you get obese as the key ways to reduce risks of a huge range of diseases. Indeed, in the very same issue of the BMJ is an article about trying to persuade women to adopt healthier lifestyles pre-conception and how the vast majority don’t change their behaviour after such “education”. We don’t get it do we?
Who doesn’t know that to smoke, drink alcohol to excess, avoid all exercise and eat till you’re obese might not be good for your health? It’s over 260 years since Wesley preached his message (and I bet you can find plenty of older writings preaching exactly the same things). It doesn’t work. It’s not that the lifestyle doesn’t work. It’s the preaching the lifestyle that doesn’t work. People don’t choose to smoke, to get drunk, to eat till they get fat to get diseases. And they’re not going to choose not to smoke, not to get drunk or to change their eating habits for some statistical possibility of future health.
Throughout history the greatest health benefits have never stemmed from a targeting of individuals, they’ve come from social, economic and political interventions. Isn’t it time we started to apply a bit more effort and resources to housing, town planning, public transport, the industrialisation of the food supply, and socio-economic inequality? You never know – might just have a greater impact than preaching healthy lifestyles.

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I was a little surprised to find this as “news” –

Patients and their families want physicians who are gifted in diagnosis and treatment and who are caring individuals with the interpersonal skills needed to communicate complex information in stressful circumstances. A new study in the January 2009 issue of Academic Medicine shows training physicians to be humanistic is feasible and produces measurably better communicators.

It’s kind of sad that this is promoted as newsworthy. But I’m glad it’s being publicised all the same.

“Traditionally medical school curricula have focused on the pathophysiology of disease while neglecting the very real impact of disease on the patient’s social and psychological experience, that is, their illness experience. It is in this intersection that humanism plays a profound role,” said Dr. Frankel, who is a medical sociologist.

This is the heart of the problem I think. It’s this very issue which Havi Carel deals with so clearly in her book.

I did like this quote in the news item however –

In the 1920’s Francis Peabody, M.D., wrote that “the secret of care of the patient is caring for the patient”

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