5 ways to avoid a misdiagnosis

Billionaire Teddy Forstmann had been diagnosed with a serious form of brain cancer. There’s a tragic twist to the story: according to Fox Business News, Forstmann believes that for more than a year, he had been misdiagnosed with meningitis.

ABC News wonders, “How could such a misfortune befall a billionaire —- a man able to afford the best doctors, best technology and the most sophisticated diagnostic tests?”

They’re missing the point. Misdiagnosis happens with shocking regularity – as much as 44% of the time, depending on the illness.

I’m sure that, as with most things, being a billionaire is better. But as a neurosurgeon quoted by ABC News points out, even for a billionaire, getting the right care is “still a bit of a crap shoot.”

So how can you improve your odds? Here are 5 tips that work.

1. Know your family history – and remind your doctor of it. Don’t assume your doctor remembers that time you told him that two of your aunts died of breast cancer, or that your grandfather and father have a history of malformed blood vessels in their brains. Research studies have shown that a family history may be a better predictor of disease than even genetic testing. Find out about your family’s medical history, write it down (the Surgeon General has a good on-line tool to help you do this), and make sure your doctor knows about it – especially if you’re sick and they’re trying to decide what’s wrong.

2. Ask questions. The typical doctor sees as a many as 40 patients a day, spending 15 minutes or less with each one. It’s all too easy to be referred to a specialist and start treatment without having all of your questions answered. But asking questions won’t just make you feel more comfortable – it can disrupt your doctor’s thought process and make him think about your case in a way that may save your life. Dr. Jerome Groopman, one of the world’s foremost researchers on how doctors think (he’s written the definitive book on it) agrees:

“Doctors desperately need patients and their families and friends to help them think. Without their help, physicians are denied key clues to what is really wrong. I learned this not as a doctor but when I was sick, when I was the patient.”

You can find some useful tips on how to do this at the U.S. government’s web site, called “Questions are the Answer.”

3. Don’t assume technology will save you. The best medical technology ever available is available today. Still, studies show it is no more effective at getting the right diagnosis than a doctor piecing together your family history along with more traditional, low-tech tests. If I had to pick between getting a high-tech test and a doctor who will spend an hour talking to me, thinking about my case and putting all of the pieces together, the research says I should pick the doctor.

4. Don’t always trust the tests. Some tests, like a review of pathology, can be wrong more than 40% of the time. Why? Because interpreting these tests is a matter of judgment, and experience. As Dr. Lisa Sanders, who writes the New York Times’ Diagnosis column puts it:

“There are lots of diseases that can look like something else. And that’s where clinical judgment and experience are essential. Doctors see results as coming straight from God. But just because a test gives you a yes or no answer doesn’t mean it’s right.”

5. Get a second opinion. But not just any kind of second opinion. You need the doctor to look at your case from scratch – to hear you talk about your symptoms in your own words, and to think about your case without being influenced by the conclusions of your original doctor. Don’t say “I was seen by Dr. X and he tells me I have meningitis and need treatment Y, what do you think?” Instead, describe your symptoms, tell him about your family history, the tests you’ve had done, and help him come to his own conclusions about what’s wrong with you.