How To Help Your Doctor With A Diagnosis

How Doctors Think

by Karen Keller Capuciati

I learned quite a bit from the non-fiction bestseller, How Doctors Think, by Jerome Groopman, M.D.  I highly recommend this engaging and very readable book to anyone who ever wondered, “What the hell is that doctor thinking?”

As a physician, Jerome Groopman became curious about what goes on in the minds of doctors when they’re working with their patients, especially in those cases where there’s no obvious diagnosis.  What’s behind the cognitive process that leads a doctor to a diagnosis and treatment plan?  Through fascinating case studies, Groopman brings the reader along the decision-making process to explain how doctors reach their conclusions, and why the same doctor making a life-saving diagnosis on Tuesday can make a life-threatening error on Wednesday.

Experts studying misguided care have concluded that the “majority of errors are due to flaws in physician thinking, not technical mistakes.  In one study… some 80 percent [of dangerous misdiagnoses] could be accounted for by a cascade of cognitive errors.”  Indeed, “another study of 100 misdiagnoses showed that doctors didn’t stumble because of inadequate medical knowledge; rather, they missed diagnoses because they fell into cognitive traps.”

Alarming data, right?  After reading this book, I am more convinced than ever that we, as patients, must be thoroughly engaged participants with our doctors to make sure we get the best healthcare.  It is Groopman’s belief as well.  “Doctors desperately need patients and their families and friends to help them think,” he writes.  “Without their help, physicians are denied key clues to what is really wrong.”

Hearing the patient’s story is still paramount for a doctor trying to make a correct diagnosis.  If patients are less than forthcoming about their health, hiding elements of their pain and discomfort, doctors have far less chance of devising a helpful treatment plan.  One of the studies detailed in Groopman’s book suggests this is a common occurrence, and usually for one of three reasons:  patients don’t want to sound stupid; patients are afraid of wasting their doctors’ time; or patients feel some element of shame regarding their symptoms and don’t want to tell the whole story.

Likewise, if a physician tends to cut his patients off before they’re able to complete their stories, the physician is likely to miss pertinent pieces of information and possibly end up with a misdiagnosis.

Groopman illustrates this point with the story of Ann Dodge, an anecdote which highlights for me some critical mistakes in diagnostic thinking.

Nearly 30 years of age, Ann had already been suffering for 15 years.  Each time she ate, she would have painful stomach cramping and nausea.  But doctors could find nothing wrong.  Her earliest doctor had diagnosed Ann with “anorexia nervosa with bulimia” (which struck me as an odd combination of disorders) due to the vomiting and aversion to food.  No matter what the doctors suggested — therapy, antacids, antidepressants — her symptoms would persist or worsen.

Over the years, Ann’s health steadily declined:  She was down to 83 pounds, had severe nutritional deficiency, had bones like a woman in her eighties, and blood counts that were dangerously low.  And yet every professional on her growing list of specialists, psychiatrists and nutritionists all continued to operate under the assumption that the original diagnosis was correct, and that Ann was suffering from an eating disorder.   Ann was told she needed to bolster her intake to 3,000 calories a day and include more easily digested carbohydrates like cereal and pasta, which only resulted in intense nausea, violent stomach cramping and diarrhea.  At that point, the diagnosis of Irritable Bowel Syndrome (IBS), another psychosomatic illness, was added to Ann’s burgeoning rap sheet.

Fifteen years, and some 30 specialists later, what changed for Ann was one new doctor who put aside the imposing stack of records that comprised her file and actually listened to her story.  At first, Ann was frustrated to have to tell her story again.  Didn’t he look at my file? she wondered.  But then Ann, starting at the beginning, unknowingly gave this new doctor the clues that lead him to discover that she had Celiac disease, an autoimmune disorder of the small intestine which features a gluten intolerance that prevents the body from absorbing nutrients.

Considering the many misdiagnoses this poor girl was forced to endure, what did the last doctor do that was so beneficial?

He did not fall into the trap of diagnosis momentum — that was the key.  This is when a diagnosis becomes fixed in a physician’s mind, despite incomplete evidence, discrepancies and contradictions.  This diagnosis got passed along to an estimated 30 doctors, all of whom failed to question the diagnoses of “anorexia nervosa with bulimia” and IBS.

All, that is, until the very last doctor.

That original diagnosis was established based on a couple of facts that “fit” and by minimizing the fact that Ann claimed she was earnestly trying to eat.  This is called cognitive bias — the attention to data that supports the presumed diagnosis while minimizing data that contradicts it.  This is a shortcut for determining a diagnosis.  When there is a symptom or fact that doesn’t quite add up, the doctor really needs to look further.

It’s also likely that some of Ann’s doctors allowed their emotions to interfere with how they pursued her case.  The stigma attached to anorexia and bulimia would tend to make physicians skeptical that she was actually eating the calories she claimed and not just deliberately purging the food.  Physicians do not like to work with patients they consider non-compliant.  They prefer to work with patients who are engaged with the process and thus more likely to see positive results from their treatment.  In Ann’s case, it seems likely that prejudice accounted for doctors dismissing the fact that Ann claimed she was eating the 3,000 calories a day and still not gaining weight.

The doctor who finally listened ended up saving her life.

Here are a few suggestions from Groopman’s book that could help you manage some of the errors in thinking that put Ann in such danger.

  • If you’ve been given a diagnosis, learn everything you can about the disease and ask questions of the medical team if something doesn’t add up.
  • Ask your doctor to consider and list some alternate ideas of what could be causing your symptoms.  You could ask:  “What other body parts are next to where I am having my symptoms?” or “What else could this be?”  This will get the doctor to expand his thinking beyond the narrowest parameters.
  • If you’re aware that you might fall into a stereotype that is hindering the way the doctor is treating you, bring it up, right into the foreground in a humorous or non-confrontational way.  Get it out there and deal with it.

Doctors are not infallible.  They are capable of making mistakes, just like the rest of us, just like you and I.  After all, the decisions they often need to make are not cut and dried.  The mission here is to help patients help their doctors, so that mistakes can be diminished — maybe even eliminated — for each and every one of us.

2 Responses to “How To Help Your Doctor With A Diagnosis”

  1. Rebeka says:

    This sounds like a great read! I find it extremely helpful to actually write down all of my symptoms on a piece of paper before I see a doctor. A little trick I learned from my mother. It is most helpful to have a list to actually READ from. It eliminates some of my fears of talking to the doctor because I have a list of facts to sort of hide behind. It’s also helpful because I wind up telling the doctor everything. That way I don’t leave the office saying, “Oh no, I forgot to tell her about…x,y,z”

    I do think that there are a lot of people (especially older people) that don’t necessarily recognize their symptoms. They chalk it up to “Old age,” when it is truly their bodies way of warning them. Does the book talk at all about things that people can do to get more in touch with their bodies so that they can give an accurate symptom list to the doctor? I think that would be extremely interesting information to learn.

  2. karen says:

    Thanks for the tip, Rebeka. We LOVE great tips like this. I can relate to having left the doctor’s office, suddenly remembering a question I forgot to ask and really wanted to know the answer to. I always think that I’ll remember, but once I’m at the appointment, it’s so easy to get sidetracked. Of course, I can get sidetracked just about anywhere. That’s why I make lots of lists!

    Excellent point about symptoms being overlooked when people just assume they are a normal part of aging. This same idea came up in a blog our friend, Amy Pavia, wrote for In Care of Dad about her father struggling with Parkinson’s disease. She noted in the article how many symptoms, like being unsteady on his feet, were being minimized as just a result of “getting older.”

    Even though Dr. Groopman does not cover this issue specifically in his book, I’m sure he would encourage doctors and patients to establish a comfortable rapport in which all issues of pain and discomfort can be discussed and given proper consideration, whether they prove to be symptoms of something larger or not.