Docs: It’s OK to Say You Don’t Know

I’m spending a few days visiting my parents in Florida and brought along Dr. Jerome Groopman’s book, How Doctors Think.

This is my second reading of this incredibly eye opening and wonderfully useful book. I’m a major fan.

This time I’m actually highlighting and post-it noting and starring and turning down page corners. It will probably take me forever to get through it. To give you an impression of how much important material I’m finding, I’m already on my third color of post-it tabs. And I’ve taken seven pages of notes.

On occasion I’m going to bring you some of Dr. Groopman’s gems. So here is the first one:

In the book, Dr. Groopman tells the story of problems with his hand and getting a diagnosis. He had to visit four doctors before he had a diagnosis that made sense to him. When you remember that he is a physician (a hematologist) then having to see so many doctors for a diagnosis that made sense is remarkable.

Without giving away all the reasons why (because that would be like giving you the good stuff from the book!) I will share his reaction at one of the doctors who wanted to surgically explore the structure of Dr. Groopman’s hand. When Dr. G asked what that doctor thought was the problem, the doctor replied that he wasn’t sure.

And Dr. G stated he was oddly reassured that the doctor would admit he didn’t know. Why? Because he had already been to one doctor who made up a name for a diagnosis that didn’t really exist.

Can you imagine that? A doctor making up a name for a diagnosis that didn’t really exist? Further, can you imagine the gall of a doctor who would make up a false diagnosis for another doctor’s condition? Yikes.

But it brings to mind many emails I’ve received from people asking me to help them find information about diagnoses so they can read more about them. There have been a handful of times they have given me a name I couldn’t find either. I’ve asked them to double check spellings or to ask the doctor to write the name for them. Sometimes all we could do was isolate the body system because most of the time those names are a body part paired with some exotic-sounding adjective.

Maybe those doctors were making up diagnosis labels too?

It’s human nature to want a label, and it’s human nature to want to know all the answers. I believe some doctors make up names to satisfy both those needs — they want to give an answer to someone who craves a label. They want to be heroes, and they don’t want their patients to think they don’t know. As patients, we believe that once we have the label, we’ll have the cure.

However, I can’t think for one minute that any of that is helpful? How can it be helpful for a doctor to make up something fictitious? And how does a made-up label improve someone’s health?

And what are the possibilities that in concocting a label, a diagnosis will be missed?

So here are two pieces of advice I’ve developed from How Doctors Think.

For doctors: when you help us, THEN you will be our heroes. Making something up just to have a name doesn’t help you treat us, nor does it help us heal. Please be straight with us. If a diagnosis eludes you, tell us you don’t know, but you’ll work with us to figure it out. That way we can partner to find the right answers.

For patients: if you suspect your doctor isn’t talking bona fide medicine, call him on it! If you are frustrated by the inability to find a diagnosis, don’t grasp at a label just to have a name. Work toward honing in on the correct body system, then the correct body part if you can, then descriptions of what is causing problems with that body part or system. There are so many reasons why you may not be able to get just one name for your medical problems. Don’t complicate the determination by insisting on a label that’s not accurate.

P.S. A note to Dr. Groopman: when I write to you to ask you for your autograph, I’ll buy a new copy to send 🙂

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