How Doctors Think

How do you make a book required reading for anyone who is a patient? (Oh, if only we could.) If you haven’t read How Doctors Think, by Dr. Jerome Groopman, go immediately to your local book store, library (or buy it online at his website.)

I wish that I’d had this book when I was diagnosed with multiple sclerosis (MS), almost 30 years ago. In those days, the available tests weren’t good at identifying this disease and I waited for over two years, until I had two of the “classic” symptoms, extreme fatigue and optic neuritis, to get a diagnosis. And even then, my primary care physician didn’t accept it. He’d seen me many times and didn’t think this was my “problem”. He said MS is a “garbage” diagnosis that doesn’t mean much and can send patients in unnecessary directions, doing unnecessary things.
I remember how happy I was to have a diagnosis … and how upset I was by my primary care physician’s words. But, in fact, what he said is no different from what so many people hear every day, objective findings or not. “I can’t see it so it’s not there.” Or, “…you seem slightly hysterical so maybe you should consider an anxiety drug…”

Groopman makes it clear that he doesn’t think that medicine is an exact science. He makes the case that doctors, like all people, have bias and often respond to their own snap judgments without the proper caution. Unfortunately, their training doesn’t help them overcome this tendency. And, he wants patients to realize this and consider it when they make their own health care decisions.

A colonoscopy led one doctor to tell me that I had ulcerative colitis, which he treated with a drug containing sulfa. When I developed high fevers. I told him that that I’d once had an allergic reaction to sulfa. But he said that he’d used this many times and didn’t believe that’s why I had the fevers. I went to another gastroenterologist who said that the drug could cause fevers and prescribed a different drug. The fevers went away, even if the disease didn’t. That doctor also said that my colonoscopy showed Crohn’s disease, not ulcerative colitis (UC). Two highly reputable doctors from esteemed hospitals with completely different diagnosis based on clinical (the way I appeared) and objective (what the test showed) findings.
Over the next five years, this doctor held to this diagnosis. The fevers returned – fevers are more typical with Crohn’s disease and this convinced him he was right. I was very sick with uncontrollable bowels and would have have chosen surgery to remove my colon had the diagnosis been UC (surgery cures UC but not crohn’s.)
Desperate, I sought other opinions, all who thought that the original doctor had made the right diagnosis and it was UC. I scheduled surgery.

After removing my diseased colon, the pathologist and the surgeon agreed it was UC but the gastroenterologist continued to insist it was Crohn’s. At the time, I thought he was embarrassed to admit a mistake. Now, I think he just couldn’t believe that his initial diagnosis was wrong. I’m glad I didn’t follow blindly.
Dr. Groopman isn’t condemning physicians or the medical profession and nor do I. He just thinks that we need to recognize the weaknesses that exist in the system. We, the patients, are responsible for providing the information a doctor needs to make a sound assessment. And, if the doctor seems to “give up”, we have to push back when a diagnosis isn’t obvious or not accept a physician’s dismissive posture when there isn’t a ready answer.

Thank you, Dr. Grooopman, for informing us that we’re not asking for the impossible and we’re not being unreasonably demanding when we want the doctor to consider our case without forming a snap judgment or being biased by past experience. Yes, even if you’ve heard that studies show that people with fibromyalgia have had some form of childhood abuse. it doesn’t meant that our symptoms don’t have a disease basis or that we’re “nuts”.

But we, the patients, have our work cut out for us. We have to learn how to give information that encourages our doctors to ask the kinds of questions that will lead to clearer understanding and ultimately, better care.
Rosalind