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.