Billionaire Teddy Forstmann has apparently 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.  Of course, if you have Best Doctors, you can call us, since that’s what we do.  If you’re not satisfied with the answers, get another opinion – you only have one life, and maybe only one chance to get this right.

Evan Falchuk is President and Chief Strategy Officer of Best Doctors, Inc. Prior to joining Best Doctors in 1999, he was an attorney at the Washington, DC, office of Fried, Frank, Harris, Shriver and Jacobson, where he worked on SEC enforcement cases.

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15 Responses for “5 Ways You Can Avoid Being Misdiagnosed”

  1. sr says:

    Great advice for everyone. Common sense – in almost every other part of our lives we undertake this type of analysis, but in healthcare too often don’t think through what’s happening to us but instead rely on blind faith. Maybe when we’re sick we aren’t capable of expending this kind of energy. Maybe we should make sure we involve someone we trust (family or friend) who will help sort out these issues rather than try to bear the burden ourselves.

  2. rbaer says:

    There is not much wrong with this post except:

    1) The sentence “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.” is an oversimplification and not really supported by the original Archives of IM article (that study basically just proves that most tests ordered in one ER in Israel do not add much to the diagnosis). BTW, that article was hard to reach; the link in the OP links to another post by EF, which tries to link to the archives article, but it’s a dead link.

    While the overall statement “Don’t Assume Technology Will Save You” is, in my opinion, a correct call, the reasonning is faulty (akin to “We pick Strawberries in July because the weather is nice and it’s agreeable to be outside”).

    2) The OP is basically an infomercial.

  3. Christine says:

    6. Don’t allow the government to take over health care!

    If you’d like to learn more about how Obamacare (PPACA) affects YOU, please attend our FREE Constitution Day educational workshop at DeSales University from 1pm-5pm, THIS Saturday, Sept 17th. Expert speakers, breaktout sessions for more in depth discussion on different aspects of Obamacare and Q&A with our speakers. There is still time to register: http://www.meetup.com/Lehigh-Valley-Coalition-for-Health-Care-Reform/events/27077301/

    We will take walk ins that day as well! If you cannot attend, please watch us on live streaming video at: http://www.ustream.tv/channel/health-care-reform—desales
    AND if you miss that and live in PA, PCN will be filming the entire event and rebroadcasting at a future date.

    We have experts speaking on a variety of topics:
     
    The Nuts and Bolts of ObamaCare — What Happens When?
    Donna Baver Rovito, Chair, Lehigh Valley COALITION for Health Care Reform

    A Constitution Day Question — Is ObamaCare Constitutional? How ObamaCare Affects Pennsylvania
    State Representative Stephen Bloom, PA-199th, Co-sponsor of HB 42
     
     
    How ObamaCare affects Families, Children, and Seniors and Why Doctors Oppose It
    Elena R. Farrell, D.O., PA Chapter Co-Founder,  Docs 4 Patient Care

    How ObamaCare affects Personal Liberty, Taxpayers, Medicare, Medicaid, and the Deficit
    K. Nicholas Pandelidis, M.D., PA Chapter Co-Founder,  Docs 4 Patient Care
     

    How ObamaCare affects Businesses, Workers, Job Creation & the Economy
    Samuel Denisco, Director of Gov’t Affairs, PA Chamber of Business and Industry

    How ObamaCare affects Doctors, Patients, Access to Care, Quality of Care, and American Medical Innovation
    Richard A. Armstrong, M.D., Chief Operating Officer, Docs 4 Patient Care
     

    IS ObamaCare Constitutional? Federal Efforts to Defund, Repeal, Replace ObamaCare
    Rep John Shadegg (AZ-3), Retired

     
    What YOU Can Do to Help Defeat ObamaCare — Three Grassroots Efforts Right Here in PA 
        Terrence O’Connor, Esq. – The Pennsylvania Health Care Freedom Act (HB 42)
     
     
    What YOU Can Do to Help Defeat ObamaCare — Three Grassroots Efforts Right Here in PA 
        William Taylor Reil - Nullification
     
     
    What YOU Can Do to Help Defeat ObamaCare — Three Grassroots Efforts Right Here in PA 
        John Morningstar – Health Care Compacts 

    Replacing ObamaCare: Why Separate Reforms Can Win the Day
    John F. Brinson, Chair, Lehigh Valley Tax Limitation Committee

    Effective Solutions — What Would Be Better than ObamaCare?
    Alieta Eck, M.D., President Elect, Association of American Physicians and Surgeons (AAPS), Co-Founder, Zarephath Health Center
     

    Breakout Sessions, Visit Exhibits
    These small breakout sessions will provide a rare opportunity to chat with our speakers and sponsors in a more personal setting and gain additional insight into their areas of expertise
     

    Expert Panel
    Discussion and Questions and Answers from the floor and online viewers. Moderator: Donna Baver Rovito

     
    Closing Remarks
    Donna Baver Rovito, Chair, Lehigh Valley COALITION for Health Care Reform

  4. CAM says:

    Sometimes doctors are so busy that they brush off your questions. I was misdiagnosed by two GPs, and two orthopedic surgeons who sent me to physiotherapists and bio-kineticists. Nothing helped until I found a health practitioner who would listen, and who taught me some self help painrelief methods. All the other medical visits and expenses turned out to be unnecessary!

  5. DeterminedMD says:

    How about don’t have an obscure or convoluted presentation. You can pick the one exception to the rules and promote it as the poster child of a system that is a failure for not picking up the zebra, or, perhaps when 80% of a clinical picture is going to be the illness that fits the presentation, sorry if there is going to be a 20% exception, and that statistical example is probably not even that ratio but moreso 90-10, but,hey, our initials at the end of our names is MD, not GOD.

    But, to the usual suspects who are quick to jump on stories like this to call for the Queen of Hearts to do her job, just remember one thing: tests are not 100% accurate, do not pick up all the obscure findings, and hey, patients have to pay attention to their symptomatology and try to tell us everything the illness presents, because interviewing the patient is at least half the battle in diagnostic assessment.

    The commenters here know the drill, all you technocrats who think medicine is about silicon advancements, good luck in that computer defining your problems and making humans obsolete.

    Just ask HAL from 2001 how that will play out!!!

  6. As a nurse working in an intensive care setting, I can also add a number 6 to this list. That is to go to the doctor with a list of observations that you have made regarding your symptoms and your health. I have observed many times that patients forget to mention symptoms because their interactions with the doctor are so short. This means that the doctor is sometime working with insufficient information.

    By giving the doctor a list, you come with all of the information in a concise form that you have managed to collect over a few days.

  7. tim says:

    Most doctors (at least specialists) are poor listeners, who communicate to their patients by a host of non-verbal cues that they are in a hurry. It is hard to communicate to someone who is under time pressure. The received wisdom is that patients should write out their thoughts ahead of time, because they get nervous in the presence of the prestige of the physicians. Actually, we all get nervous when we have to talk about ourselves to someone who is distracted.

    I’ve always wanted to videotape doctors in exam rooms and then edit the film, by overlaying the mental algorithm that is flashing through the doctor’s head as the audio plays. As the doctor mentally rearranges everything into bullet points, picks out those points that lead down a decision tree, and starts down that decision tree (all this as the patient is talking), the patient is in great danger from presenting information in the wrong order.

    To all the doctors who are now going to tell me how hard it is to be a doctor: no it isn’t. It is hard to be a doctor and spend 12 minutes with a patient. Slow down and make less money. Your patients have no moral obligation to be better communicators; you have a moral obligation to guide them on how to communicate to you what you need.

    (Disclosure: I am paid to maximize the earnings of surgeons. So far, this sentiment has not gotten me fired.)

  8. southern doc says:

    “To all the doctors who are now going to tell me how hard it is to be a doctor: no it isn’t.”

    I schedule my patients for 30 minutes or 45 minutes based on complaint.

    Being a doctor is the hardest thing I’ve ever done.

    You don’t know what you’re talking about.

  9. Peter1 says:

    “Misdiagnosis happens with shocking regularity – as much as 44% of the time, depending on the illness.”

    If true (not sure where he gets the %) but would that be incompetence, malpractice worthy error, or just plain uncaring laziness?

    And yes, Mr. Falchuk always gets to do infomercials here on THCB.

    • rbaer says:

      Well, truepeter, there would be explanations other than “incompetence, malpractice worthy error, or just plain uncaring laziness” but I save my breath this time. Discussion boards are not only there to spread and bolster one’s own opinion, but to learn from people with different opinions and backgrounds. Looks like the strength of your opinion – at least on that matter – prevents you from doing the latter.

  10. Peter1 says:

    Well rbaer, with a failure rate of 44% (not sure what your % is) do you advise your patients to get a second opinion? I would think with odds like that it would be something you’d like for your sake and also for the sake of your patients. I was quite shocked with the percentage (but wondering of it’s accuracy as Mr Falchuk is a self promoter), since I had never really thought about it as that high and have gone into doctors offices with high (although guarded) expectations.

    Have you looked at the, “shocking” link? I remain open to, “explanations”.

  11. Samuel Stenes, MD says:

    “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.”

    Yup, so why is the United States Congress and POTUS wasting $ billions on HIT devices that have not much efficacy (recent Joint Commission analysis of disease treatment guidelines) and are known to injure and kill patients?

    A few good disease management nurses and doctors who have the data laid out in front of them without having to search for it the boweled silos of EMRs will provide meaningfully better benefit for the money than that spent on meaningfully dangerous HIT, EMR, CPOE, a e-Prescribing devices.

    Thanks Evan for pointing this out.

  12. Very great post. I simply stumbled upon your blog and wished to say that I’ve really enjoyed surfing around your weblog posts. After all I’ll be subscribing in your rss feed and I’m hoping you write once more soon!

  13. Great post and lots of great advice here. I personally went through a situation where getting a second opinion and not trusting a single test and technology was the reason that a proper diagnosis was found. Thanks for the great advice!

  14. What’s up, every time i used to check blog posts here in the early hours in the daylight, as i like to find out more and more.

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