by Carl V Phillips
After decades of working in this area, it takes a lot to cause me to say “they must be kidding.” A post in the NYT yesterday did it. It was about parents who exercise some judgment about treatment of rare or elusive diseases in their kids, specifically when they refuse a non-diagnosis and advice to not pursue further tests and treatment. Apparently there is a trend toward medics deciding to call this child abuse and the government sometimes agreeing to the point of taking children away from their parents as if they were actually abusing them. Obviously this is tangential to the topic of this blog, but it struck me as a remarkable example of some of what we are dealing with. (I will note that I generally have little patience for the barrage of tangential posts on message boards on the theme of “here is another example of those people doing the exact same thing!” Usually they are, um, not exactly enlightening. So please go ahead and stop reading now if you are getting that vibe now.)
The broad observation here is the simple point that these people — medics and government officials — frequently tend to act not like the service providers and public servants they are, but as if they were our feudal masters. Of course, they have no monopoly on this, but with the exception of cops, they are probably the worst offenders. But drilling down to the specifics is more interesting.
The examples in the story involve serious but difficult-to-explain symptoms, exactly the situation where the patients (or the patient’s parents, in the case of a younger child) are very likely to have a better understanding of what is going on than any individual medic. At least that is likely to be true for the people who are educated, intelligent, and savvy, as is the case with the law professor who wrote the post and presumably those who provided the other case studies, who either run in the same circles or were articulate enough to write reports. For that population, the value-added from medics come primarily from them having seen a lot similar cases before, and understanding the nuances based on that. Absent such experience, the medics are stuck looking things up and guessing, just like the parents.
This is reminiscent of dealing with medics regarding tobacco products and THR. They have no useful experience or specialized knowledge, and just repeat what they happen to have heard. Any reasonably literate person who practices THR knows more about it than 99% of medics. That, of course, is no problem so long as everyone knows their limits. Presumably 99% of medics realize that a client (a much more useful word than “patient” when thinking this way) who is a tailor knows more about clothing than they do. They probably even know that a client who is an avid cyclist knows more about the health issues related to cycling. But when it comes to politicized areas, they take on an arrogance that becomes very dangerous.
The politicization is seldom caused by the medics themselves, but once it is created by others, they tend to glom onto it, and then their undeserved credibility is what paves the way for the “child abuse” police actions. Consider the “second-hand smoke” obsession, which results in smoking behavior being grounds for taking someone’s child from him. You can fail to read to your child, imbue him with a career-crippling accent, discourage education, and so on — all far more harmful to his life than a little smoke — and the state will not say anything about it. Granted that, for obvious reasons, this is far better than the alternative. But it does make clear how the imposition of state powers is a matter of political fashion trends, not actual harm. And what is in fashion is often whatever the “public health” establishment wishes to impose on people this year — like anti-ecig hysteria.
Circling back to the motivating example, the stories are not about people who refused to get their kids clearly needed treatment, or who took them to Mexico to give them some unapproved voodoo treatment. They are mostly cases where one medic could not figure out what a problem was and so arrogantly declared it to be psychosomatic, or some other useless non-diagnosis, and the parents refused to accept that and continued to seek other medical advice and care. The medic who made the original error declared the refusal to blindly accept his (you just know that is the right gender for the pronoun) assessment to be child abuse. This would be unimportant whining were it not for the case that the state then used its police power and, in several of these cases, took the child away from the parents as a result. The sheer arrogance is mind-boggling.
Bringing it back to THR, it is a reminder that in the USA we should be glad about how the policy influence of people with this combination of ignorance and arrogance is concentrated mostly in politicians, who at least are ultimately answerable to the people. It could be worse: In the UK or Canada, an unelected and unaccountable medical bureaucracy has far more influence. If you follow the politics, you may have noticed that most of their anti-THR horror stories come from that quarter rather than clueless local lawmakers. I would have to say we have the better deal.
Ok, end of extended tangent. This just struck me so hard I had to write something. Oh and FWIW, my screening test for any medic, for myself or my children, is whether she gives some indication of recognizing that I know relevant things that she does not. After all, do you really want to be getting advice or treatment from someone who has clearly demonstrated an inability to learn?
I had a misdiagnosis for a rare disease as a child. My dad’s litmus test for pediatricians and other doctors was “can he say ‘I don’t know’ ?” (Dad was a materials scientist whose national reputation was based on knowing when to say that, despite executives ORDERING him not to.) Found the right doctor, and so I’m still here to bother the ANTZ.
You make some excellent points Carl, as usual. I would like to also add a point that struck me as I read your blog, the client is also at a severe disadvantage because those in the medical profession, and in “public health” tend to band together against the client, regardless of how much knowledge said client may possess. They watch each other’s back, and back up statements of ignorance, not because of any greater knowledge than the client, but because they all feed from the same trough, and in some cases, because they are frightened to go against the monolithic “public health” industry, for fear of being ostricised by their “peers”.
This filters right down to the general practitioner level, where research by the client is dismissed, and second opinions are actively discouraged, with threats in some cases.
This is very relevant to THR because people who seek medical advice to quit smoking tobacco, are told to “try” all the “approved” methods, again and again, and actively discouraged, (particularly in my country Australia), when they inquire about vaping or smokeless tobacco. This discouragement is not based on any evidence of harm, or on any evidence of the effectiveness of the “approved” methods, (there is little success from these methods, eg: patches, gums, and dangerous drugs such as Champix).
With all the lies about THR being promoted by some in the medical profession, as well as many in “public health” and in particular the tobacco control industry, is it any wonder that people seek knowledge elsewhere. Now we are seeing the levels of spite ramped up, by those in the tobacco control industry, to use moral panic, and the force of the law to back up their lies, because they do not have the evidence to do so.
This phenomenon has a tendency to turn into a self-perpetuating feedback loop, where patients and doctors both contribute to making it worse; the doctors by refusing to entertain the notion that an unlettered patient might know something about medical science that they don’t, and the patients by assuming that anyone with a medical degree automatically knows everything about all medical subjects. I have encountered a horrifying number of people whom I’ve heard say things like “I went back to smoking because my doctor says vaping is just as bad.”
In my own case, I took the time to educate my doctor, and to his credit, he was amenable to being educated.
Considering the number of patients who do weird things and don’t get vaccinated etc, I can see the Dr.’s scepticism. Considering how many times I was told in pre-med that “mothers’ observations are not reliable” I can see the patients’ and parents’ scepticism. Both sides have some severe flaws. It looks to me like the big issue here is CPS — there is wayyyy too little oversight, and the press only covers their mistakes of failing to take action, which will train them to “err on the side” of action. Other than better K-12 education for ALL, I don’t quite see what can be done to break this cycle.
In any relationship with a large asymmetry of information, such as physician-client, the one with the most education often suffers, perversely, from the Dunning-Kruger effect. They don’t know how to understand the system as a whole and often promote actions with far more deleterious consequences because the cognitive dissonance can be resolved favorably only by favoring the actor with the greater information.