The Ethics of Intervention

I received a note from a parent:
I am wondering if you had any thoughts on developmental optometry. My daughter has a severe learning disability and several people have suggested looking into visual training combined with behavioral therapy. She is an effusive and happy kid who seems to have potential but there are multiple issues such as ADD, auditory processing and visual perception which have left major gaps in her development. Sorry for the out of the blue query, but I'm only interested in talking to people who I know think outside the conventional. Have plenty of those voices.

This is what I wrote back, about a week later:

In a blog post from about 6 months ago, I describe a process of making a diagnosis of a rare disease from a set of common symptoms.  I repeat the maxim that if it walks like a duck, quacks like a duck, it's almost certainly a duck.  For many diagnoses, this circumstantial evidence is all we ever get.  For many important diagnoses, there is no definitive test, no reagent that turns blue, no antibody that clumps.  Just a set of circumstances that only when taken together constellate into an ominous cloud.

Of course, in my current profession I describe this phenomenon in the cloak of medical diagnosis.  I’m sure that jurisprudence and John Grisham novels are filled with innocent people cornered by circumstantial evidence.  But circumstantial evidence is how we naturally categorize the world.  It’s why we back away from barking dogs (“Oh she’s just a puppy,” the oblivious owner seems always to say as they restrain the bloodthirsty beast with a chain previously used on the anchor of a battleship), and think twice before lending Uncle Dave the money he wants for his can’t-miss real-estate development in Arizona.

I have an unusually large number of patients with autism of many varieties.  The genesis of this is simple enough.  Even the kids who are the most reluctant to see the doctor seem to be OK with me.  That I get along with these sometimes difficult kids isn’t lost on the parents.  The autism community is relatively communicative, and word-of-mouth has brought many of these families to me.  All of these parents have had to change their entire view of their own lives and plans.  And I never fault them for seeking explanations everywhere and seeking hope anywhere it is offered.

Regular readers of my blog you should know that I am getting somewhere with all this, though it may seem like I’m taking the scenic route.  Hey, you get what you pay for.

The last prologue comes from what I used to do for a living, 25 years ago.  Ironically, that has repercussions in current events though not in my own life.  I was in that very first crop of analytically-skilled people on Wall Street.  Though my very first task was computer programming, I had a very intuitive and creative view of theoretical finance and an ability to model things quantitatively that were hard to understand in words.  I did some of the first work on options on futures, then options on currencies, then options on mortgages and then things got really exotic.  It was fun and interesting work.  Though we didn’t have the term at the time, it was the very beginning of what are today called derivatives.  (Don’t worry—it’s the scenic route, not a dead end.)  Here’s how derivatives really work[ed].  By inventing unique financial instruments, the inventor is the only source of typically complex analysis by which a proposed buyer can evaluate that investment.  Think of it this way.  Your jeweler shows you a certificate which attests to their being a licensed appraiser.  She gives you an official form with a seal that says that she appraises a certain diamond at $5,000.  She then offers to sell you that very diamond for $4000.  So is she losing money on the deal?  If you buy it for $4k, will you be able to sell it for the same amount?  This diamond example doesn’t pass the test of daily experience, and we know (circumstantially) that there’s a sometimes yawning chasm between wholesale and retail prices.  We used to call it the bid-ask spread.  But with a diamond, you could presumably take it to another appraiser and yet another, who aren’t trying to sell you anything.  With complex and new derivatives, only the seller had the definitive valuation model.  In short, it was never clear what, if anything, those institutional investors could get for the things if they ever wanted to sell them.  Worse, it has become clear that they nearly always didn’t fully understand what they were getting.  I now know better than to refer a child to certain Ear-Nose-and-Throat doctors unless I have already decided they need to have their tonsils out.  Because everybody I send over there gets told they need to have their tonsils out.  I’m in no position to recommend otherwise, since they are the experts.  But somewhere there’s a very happy BMW salesman.  The corruptive power of conflicts-of-interest in medicine has been well studied and documented.  But, in my humble opinion, it’s like the old joke:  why does a dog...?Because he can.  As long as physicians were allowed to own their own pharmacies, they prescribed more.  When they owned in-house x-rays (as many orthopedists do), everybody was needing x-rays.  There was always an intellectually-justifiable therapeutic or diagnostic rationale for the intervention.  And funding for skeptical research (‘outcomes’ research) was hard to come by since peer-review was communally infected.  Eventually, some has been done and the two examples I cite, pharmacies and x-rays, are now rare.  Except for dentists and orthopedists.  And podiatrists.  And don’t get me started about chiropractic.

So this leads me to the 30 or so hours of research I did on developmental optometry.

1. I couldn’t find any evidence—none—that it worked for any of the problems for which it appears usually to be prescribed, with the possible exception of unambiguous vision problems, and these are treated conventionally (and effectively).
   
2. Kids with eye and/or vision problems often have problems in school, for obvious reasons.  These difficulties, just like school difficulties from any other cause, certainly can lead to a cascade of problems which can be difficult to tease out from the germinating cause.  It saddens me when I find kids in remedial reading that simply needed glasses, or when I’m asked to do an ADHD or behavioral evaluation on a child who’s bored in class because they can’t see what the teacher is writing.  Since I do so much work with kids who have ADHD or problems that look like it, I have documented many cases (some are in the blog) of children with attention problems caused by everything from anxiety to itching.
3. All the favorable evidence that appears most bona-fide, passing itself off as peer-reviewed unbiased medical research, is by practitioners who either are or claim to be believers in the usefulness of the intervention.  They sell the intervention.  Yes, I am keenly aware that the same is true for most of the difficult-to-duplicate medical interventions such as surgeries.  Indeed, that’s why it is still unclear whether coronary bypass surgery (done by heart surgeons) is superior to angioplasty (done by interventional radiologists or cardiologists).  Everybody who can do the research which just might show the inferiority of their approach makes an outrageous living from it.  So I’m not putting down the poor optometrists, who since the advent of internet contact lenses and no-prescription reading glasses have found themselves disintermediated from the high-margin businesses they used to be in.  They are just looking for their own piece of the pie.  In many ways, much of the published research I looked at reminded me of things I have read in the New England Journal of Medicine from 100 years ago.  Logical, convincing, completely supported by entrenched conventional wisdom and proven by anecdote.  (The ‘alternative’ autism treatments are often like this.)
4. Maybe it’s my obvious skepticism, but I’ll come back to that joke about dog behavior.  Even the professional sites seemed designed less to remediate an underdiagnosed public-health menace than to drum up business.  Particularly shocking to me are sites like this.  I used to give a lecture every year at UC Berkeley about ADHD, and one of the slides I showed was a self-diagnosis test for adult ADHD taken from a website.  When the students took the test, just about everybody qualified as having ADHD.  According to this test, “If your child’s total score is more than 20, [there’s] an 80% chance of having a vision problem that is interfering with learning.”  It was easy to get to 20 if your child has the following:  doesn’t like reading or writing; has itchy eyes; has a hard time finishing assignments on time; gives up easily; is clumsy; homework takes too long; daydreams; or gets in trouble for being off-task at school.  The site has a search engine which offers to find an optometrist who is a member of this group. 
5. Though I worry about families getting sold false promises, and paying for certain unproven services, I found no evidence of direct harm caused by these interventions.  I haven’t left my MBA at the door, however, and besides the conflict-of-interest issues it increases my suspicion enormously to have learned that developmental optometrists often request visits weekly or even more often than that.  For months.  So just as for chiropractic, I can’t help but be left wondering what exactly are the criteria for claiming success?  When do you decide this isn’t working?  Whenever you stop, will the practitioner always say that improvement was just around the corner but you are to blame for the failure because you didn’t stick with it?  Is there a test on which you child will score higher after the intervention?  Does the test correlate with anything important in your child’s life or simply validate the intervention?  
6. As a doctor who diagnoses and treats kids with complex tangles of dysfunction, I worry a lot about the ‘collateral damage.’  This is the inadvertent damage you do to the child and to your own relationship with the child while trying to help them.  Surgery may save you, but it doesn’t come without pain and lifelong scars.  Bringing the child to a doctor every week gives them an unambiguous message that there’s something wrong with them.  They better improve, because if they don’t they will lose hope in their own recovery.  They internalize your belief and the doctor’s belief (or sales pitch) that they have a serious problem that needs to be fixed.  If they don’t see results they can become hopeless and guilty.  They can believe that they are imperfect in your eyes for having the problem and that they have failed you by not improving with the treatment you make them participate in.  Once the child has taken on the role of the sick child, how will you convince her that she’s better?  With my patients, I take a lot of time—often more than an hour—to talk to the child about this.  Do they think there’s something wrong?  Does she think that Daddy is disappointed in her?  Does he want her to be something she’s not or achieve something she thinks she can’t?
7. And of course, there’s a serious opportunity cost.  I saw, this year, a 15-year old with untreated ADHD.  ( part 1 and part 2.)  The longer his parents went without getting him conventional—and heavily proven—treatment for his conventional problem, the longer he stayed failing at school and the more depressed he became.  This wasn’t going to end well.  There are many vague but serious problems along both the autistic and learning-disability spectra.  Your child might not fit into a recognizable unifying diagnosis.  This ambiguity tends to increase anxiety.  But there are many available methods for helping a specific problem, such as reading problems.  (I usually insist that kids having learning problems get their vision and hearing checked thoroughly.)  So choosing one intervention might additionally cost precious time catching up with a professional reading tutor.

Here’s my various bottom lines, based mostly on my training in physics:  break problems you can’t solve into smaller problems you can solve.  And I started this with, ‘if it walks like a duck....’

• Developmental Optometry doesn’t pass my whiff test.  The only people who support it are those who sell it.  Testimony from desperate parents, sadly, is not enough for me.
• I don’t know what your child’s learning/reading issues might be, but these are heavily studied and though no one intervention works for everybody, there’s usually something available that can help. (Best reference ever:  Sally Shaywitz’s book on dyslexia (see also)).
• I’m fiercely protective of my patients.  Even what appear to be benign interventions can have long-lasting and chaotic implications in the most butterfly-effect kind of way.  Doing nothing, on the other hand, isn’t necessarily better.  Gosh, that doesn’t seem to be helpful.
• There is no such thing as alternative medicine.  There are only tested things and untested things.  I met you a couple of times.  You probably won’t meet a Developmental Optometrist who’s smarter than you are.  So decide for yourself.  Do your own research.  Ask what their training is, how many ‘sessions’ it’s going to take, and how you’ll be able to tell if it’s working.  Ask what happens if it doesn’t help by 6 weeks or 6 months.  (Well managed ADHD medication, prescribed appropriately, makes an obvious improvement within days, sometimes hours.)
• For heaven’s sake, get a second, independent, diagnostic eye exam.  Don’t mention this intervention.  Go to an ophthalmologist and get her a thorough eye/vision test.  If this evaluation is materially discrepant from that of the developmental optometrist (no matter what they recommend for therapy), get yet another independent evaluation.  Remember that a diagnosis is not the same as a treatment.

How did I do?  I hope you didn’t expect a thumbs up or down.  My critical take on this is not because I’m dogmatic—I have the same hesitations about a lot of traditional interventions by a lot of high-powered interventional specialists.  It seems I often end up after one of these obsessive patient-centered-research jags chanting some combination of ‘Show me the money!’ and ‘Show me the chakra!’

I will help in any way that I can.

Wolffe