We all have patients, friends, and family members who fervently believe that they have a diagnosis that we know doesn't exist. Or rather, for which there is no current reasonable believable scientific evidence.
I refuse to cite specific examples, because it's useless to refute someone's pet diagnosis. You may have examined a large body of research, read reams of textbook pathophysiology, spoken to respected specialists, but no matter what, if you attempt to disprove the entity they blame for all of their symptoms, and the treatment upon which they have pinned their hopes, they will hate you.
It's unfathomable to me that there are providers out there, some of them
medical doctors, who blithely and blatantly practice non-evidence-based
medicine on unsuspecting and vulnerable humans.
And it sucks to sit there and listen to someone you care
about describing quacky tests and (at best) useless and (at worst) potentially harmful charlatan treatments. Especially when they
are paying dearly, and out-of-pocket.
Of course, I've tried to take down these totally false medical problems many times. It's what you do when you care about someone, right? And I've watched their faces shut down, as they mentally walk out the door. Or, saw them get red-faced and argumentative, unable to hear another word I said.
Sigh. So now, for the most part, I nod and smile and murmur something about how modern science can't answer all the questions and I hope that's working out for them.
After all, I can see why this is happening. Modern day M.D.'s are obviously missing something. Patients aren't getting what they need from us.
It used to be that folks had a local doctor who knew them well (and possibly also their families, neighbors, and friends). Office visits were longer, and paperwork was practically nonexistent. There was more listening, and less prescribing. The pace of the research world and life generally was slower, and slower to change. Hypotheses, explanations, and medications were more stable, things you could get your head around and use for a long stretch of time. The doctor-patient relationship was a real thing.
All that's a fever dream. Now, we docs are SO on the clock. Productivity numbers are in- you need to see more patients! And more! Twenty minutes to address all of your patient's medical problems and questions, examine, order, NEXT! Then, the deskwork. Administrative burden outmatches face-to-face clinical time two to one. It's a team of nurses doing callbacks, if the patient gets a call at all. Nowadays, it's mostly messaging through the "patient portal". The, the general public is fed research study after study after study. Papers and pundits contradict each other, data is manipulated, organizations release conflicting guidelines, medications get pulled. Textbooks aren't even printed anymore because they're outdated so fast. What a mess.
These are the cold clinical truths: There's no time to build trust. Our system prevents real connection. The scientific information world is fast-paced, chaotic, and confusing.
And so people are looking elsewhere.
Our medical system may or may not be headed in a better direction, what with the Patient Centered Medical Home movement and all. We'll see.
But meantime, behind the scenes, I am on a bit of a campaign. I recently wrote a patient-friendly article in support of evidence-based medicine for Harvard Health Blog that was well-received. At least, I didn't get any death threats.
Death threats, you say? Yes! Plenty of qualified critics of particularly trendy fake diagnoses suffer angry trolls throwing cyber-insults or writing letters with intent to harm, or kill.
So I'm trying to educate generally, not specifically. Trying to teach people how to tease apart the "fake news" from the safe news, how to be thoughtful, and consider several sides of a story. Their doctor sees it one way, but the internet says it another way. Okay, let's figure this out.
Doctors, we won't win the battle against the snake oil salesmen using facts and figures. We need to be gentle. Tread lightly. Nod and smile and murmur something about how modern science can't answer
all the questions and you hope that's working out for them.
And then, if we can, listen. Try to cut through the requisite logistical bullshit and reach out to our patients. If they are feeling heard, they may trust. And if they trust, they may listen. It will take time, and open minds on both sides. But the patient may get the expert help they need, that the doctor is able to give.