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.

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.

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!)