Monday, July 1, 2019

In Defence of Ignorance

You may not realize it, but there is something wrong with your body.  Perhaps you have a mutated gene.  Maybe some cells are misbehaving.  Your body chemistry may be out of whack.  Some of your microbiota could be changing from a mutual benefit, or at least a stalemate, with your body to battling it.  It could be lots of things.

If you had a computer program as sophisticated as your body's code, thrown together over as long a time by as many programmers, you'd expect some bugs.  If you had a piece of machinery as complex, and used as hard as your body, you'd expect a few things to be constantly breaking down.  Yet somehow we seem surprised when we're told something is wrong with us.

Let's face it: past your early/mid-twenties, what we politely call "aging" should more realistically be called "deteriorating."   We just don't always realize it, and that's not necessarily a bad thing. 
Credit: Shutterstock
A few weeks ago I saw a primary care doctor.  Almost as an afterthought, she suggested one more scan.  I suspected I was being upsold, but I didn't want to be difficult and it wasn't particularly expensive, so I agreed.  Much to my surprise, the results indicated I might have a serious condition -- not life-threatening, but certainly life-altering.   There were treatments for it, but they were lengthy, unpleasant, and expensive.  Moreover, they could only slow the progression of the disease, not cure or even halt it.

I was not a happy camper.

She sent me to a specialist.  More tests, more scans, and he confirmed her suspicions.  He sent me to an even more expert specialist, who did more tests and scans, with some surprising conclusions.  There was some damage, he agreed, but nothing too serious, just something to watch.  I didn't yet have the disease in question.  Come back in a year just so we can keep an eye on it.

All this took several weeks, which I'm sure is very short compared to what others have had to endure, but which seemed interminable to me.  I kept thinking about all those treatments, all that money, and how my life would be different as the disease had progressed.  All for naught, as it turned out.

I'm kind of wishing I had turned down that original scan. 

We're detecting problems ever earlier.  CTs, MRIs, PET scans can pick up cancer cells at early stages.  We're already using "liquid biopsies" or fecal samples to find tiny traces of cancers, in minimally invasive ways, and are on the cusp of detecting early stage cancers and other problems through even more refined blood tests

The trouble is that not all the findings are important.  For example, many scans pick up abnormalities that should be considered "incidentalomas," researchers found last year.  “We know that the diagnosis of incidentalomas can cause patient anxiety and is likely to lead to further investigations and treatment, some of which will be unnecessary, and some of which will cause harm,” said lead study author Dr. Jack O’Sullivan of the University of Oxford. 

Credit: MedPage Today
As H. Gilbert Welch, MD, a professor at the Dartmouth Institute for Health Policy and Clinical Practice and author of a related study, told MedPage Today: "The human body is full of small anatomical abnormalities.  The more we look, the more we find, and the more we intervene. And that’s generally not in our patients’ interest."

Similarly, those new blood tests may have only a 1% false positive rate, but: "One percent in a patient population of 5,000 is manageable.  With 1 percent in hundreds of thousands or millions, you quickly get into different dynamics,” Joydeep Goswami of Thermo Fischer Scientific said in an interview with MedCity News at the recent annual meeting of the American Society of Clinical Oncology.  

It's cool that the Apple Watch can give us 24/7, real-time monitoring of irregular heart beats, and who knows what kinds of such monitoring we'll be able to do next.  But we're also going to turn up apparent issues that aren't really issues, getting lots of people needlessly worried and subject to subsequent tests/procedures/expenses.  

We can get findings.  Lots of them.  More all the time.  We just don't always know what to make of them.  As Dr. Welch said, "the more we look, the more we find."  Sometimes it might be better not to look. 

I think back to my early days in health policy, when there was much discussion about the supposed rationing in the U.K.'s National Health Service.  For example, it was widely believed in the U.S. that no one over 65 could get dialysis through the NHS.  A study -- and I can't recall the authors -- found that, in fact, there were no explicit prohibitions or even guidelines about it.  It was just that physicians were reluctant to order it for seniors.  As one physician put it, "well, at that age we're all a bit crumbly, aren't we?"

Indeed, we are all bit crumbly, and the trouble is we don't always know which of our many flaws are "normal" and which need action.  

We don't have the right baselines.  We don't know what "normal" should look like, for which people, at which ages.  We don't know which of what Dr.Welch called our "small anatomical abnormalities" will never manifest as real issues, and can be safely ignored.  No, give us a finding, and someone will want to take action on it. 

Should we stop trying to find ways to find and diagnosis potential issues at earlier stages?  No, of course not.  But we need to spend at least as much time and money understanding what they really mean.  Sometimes a flaw is just part of who we are.

Should we stop trying to treat issues once identified?  Well, maybe.  Most of us freak out when given a serious diagnosis, but part of physicians' job is to help us understand when action is necessary and when waiting or even ignoring something is the best course of action.  Part of their job may be not to put us through that at all.

Sometimes ignorance is, in fact, bliss. 

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