The culture of ruling out leads to misdiagnosis

May is a recent divorcee in her early sixties. She was working out at the gym when she began to feel queasy and lightheaded. She awoke in the back of an ambulance, and soon, she was in an ER getting blood drawn. “We need to make sure you don’t have a heart attack,” she was told.

As the day went on, May underwent test after test to “rule out” a heart attack, then a blood clot in her lungs, then a stroke. She was relieved when she found out that she didn’t have these grim problems, but she still had no idea why she felt terrible. By the next morning, she had developed a fever and was shaking with chills. It took until the end of the following day for doctors to figure out that the problem was a raging gallbladder infection. She had to undergo emergency surgery, where they found that her gallbladder had ruptured and was leaking infected fluid throughout her abdomen.

When you go to the doctor, you want to find out what’s wrong and how you can get better. In modern day America, though, what you will get are tests to “rule out” problems rather than figure out what you actually have. Patients go through x-rays and CT scans, get vials of blood drawn, and stay in hospital for days on end, then leave with a huge bill but little idea of why they feel sick or how they can get better. Not only does it leave them confused and feeling just as unwell, it often results in misdiagnosis because, as in May’s case, the focus was never on figuring out the problem to begin with.

Like the rest of America, our healthcare system has become morbidly obese. Costs are skyrocketing; we spend 18 cents of every dollar on health, a number that will rise to over a quarter by 2020. Millions of people are priced out of healthcare, with one in eight uninsured and far more underinsured. But our system is not just failing those who lack access to care. Those who have access are getting exposed to unnecessary tests with unnecessary side effects. People are going to their doctor and leaving without feeling any better.

In fact, they are getting misdiagnosed, and are suffering the consequences. Over 100,000 deaths due to medical error occur every year, and the majority of these errors are errors in diagnoses. There are growing movements to make medical care safer. I applaud these efforts to ensure surgical safety and reduce bloodstream infections, but the push for safety has to begin even earlier in the process, with getting to the right diagnosis.

Why is the diagnosis so important? First, it’s important for you to know what you have before you can treat it. You have to know what disease or process you have so you know what to expect, what to watch out for, and what you can do about it. Throwing medications at symptoms just masks them, but doesn’t get at the root of the problem. Second, not knowing what diagnoses are being considered is equivalent to searching for a needle in the haystack: it’s aimless and dangerous. Tests should be done to narrow down diagnoses, or else results are going to be obtained that don’t make sense, and you still won’t know what you have or what to do about it.

It took May a near-death experience and over a year of recovery to find out that the key to better to better healthcare hinges on getting the right diagnosis. In her case, all of the symptoms of a gallbladder infection had been there from the start. The problem was that the doctor was fixated on making sure she didn’t have other things—other problems that she didn’t even have symptoms for—and missed the boat altogether.

When you are next at your doctor, make sure you ask for your diagnosis. If the doctor is not sure, or wants to run some tests first before telling you, ask her for a list of possible diagnoses and the most likely diagnosis BEFORE you consent to the tests. Your doctor must have some thoughts on what you might have, and you should find out what that is (if she doesn’t have any clue, then that’s a problem too!).

Getting to the diagnosis is the first and most critical step to getting better, and you need to help your doctor help you. Only by ensuring that we get the best and most efficient care possible for ourselves and our loved ones can we achieve meaningful healthcare reform for the nation.

Leana Wen is an emergency physician who blogs at The Doctor is Listening. She is the co-author of When Doctors Don’t Listen: How to Prevent Misdiagnosis and Unnecessary Tests.  She can also be reached on Twitter @drleanawen.

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  • drdoctormd

    Your point is well made. We need to listen to the patients and rely on the history, physical diagnosis, and experience to lead us. Unfortunately the “ruling-out-as-proxy-for-medical-care” phenomenon is one of those nasty unintended consequences of, among many other things, defensive medicine. I would also suggest that it is collateral damage to the fact that in essence you can’t really justify keeping the patient in the hospital for something that’s not life-threatening (for multiple reasons)–ie “rule out the bad stuff, then work from there as an outpatient.”

    Unfortunately, the most expeditious way to get a bunch of tests run in a short period of time is often inside the walls of a hospital.

  • Suzi Q 38

    Something similar happened to me.
    The doctors and surgeons wanted to rule out M.S. before surgery.
    The M.R.I. cervical scan showed spinal stenosis.
    I understood, but wouldn’t two neurologists be enough??
    No. The last surgeon wanted me to go to the most famous M.S. specialist on staff at the teaching hospital.
    This wasted precious time and I deteriorated further.

    • drdoctormd

      I think that’s a different issue–but I understand your point. Sounds as if the surgeon was convinced it was MS and was looking for someone to give him the answer he was looking for.

      • Suzi Q 38

        Thank you.
        I thought of that, which is why I tried my best to wait for that M.S. consult. When the MS consult wanted me to wait another 2 months for another brain MRI, I told him that because I only had two tiny particles on the first one that the radiologist said were not indicative of MS, I just couldn’t wait.
        He also repeated the blood tests of prior neurologists.
        I then asked him if anything significant came from those tests.
        No.

        At least everyone tried to rule it out.
        In the end, who knows.
        No one wants an unneeded and useless neck surgery, but no one wants preventable paralysis either.

        I decided to roll the dice a bit.

  • Dr R van Riet

    Although I understand your point, a patient that looses consciousness while working out is way more likely to have a cardiovascular insult than an infected gallbladder. The ER doctor was not trying to rule out but was trying to find an acutely life threatening problem. Populistic blogs like these are dangerous and obstructive to doctors that actually deal with patients on a daily basis. More to the point is the reflex that most doctors have to order expensive tests to ‘rule out’ rare diagnoses that would not change the treatment plan anyway, just because the patient needs to leave with a label for their problem, not because it would actually help their health.

  • Docbart

    I think the 100,000 figure is completely bogus. If we are going to make up numbers, why not go even bigger?

    You state that the fever was not there from the start. Sometimes it takes the passage of time to make the diagnosis more evident.

    You state that the symptoms of cholecystitis were there from the start. Really? Who makes that diagnosis when people feel “queasy and lightheaded” with exercise? What would that do to wasteful medical spending if everyone with those symptoms were worked up for cholecystitis? Wouldn’t it be malpractice not to rule out more obvious diagnoses in patients who present this way?

    There are some valid points in this blog, but let’s not expect foresight to be as acute as hindsight and blame the medical establishment for that.

    • karen3

      No, its not. It was arrived at with respect to Medicare patients,and with physician reviewers reviewing patient records. The study is a solid study and pertains to preventable errors only. From my personal experience, the overwhelming number of people I know who have serious medical problems or have died, have done so due to physician error. If “May” had previously had the experience of having been medically injured, she might not have showed up at the hospital at all.

      • Docbart

        If one’s mission deals with medical errors, then one will tend to see everything in that light. When the only tool you have is a hammer, everything looks like a nail. Just because someone extrapolates from a limited number of cases viewed from a certain perspective and publishes a number, that doesn’t make the number accurate. If they came up with a less dramatic number, it would get less publicity and less funding would follow.

        • GregM

          I wouldn’t waste time replying to Karen. She has already made up her mind. Nothing you say will sway her perspective whatsoever. Whatever poor experience she has had with the medical field in the past, she will extrapolate to every one in the medical field and damn the field as a whole.

          It’s easier in her mind to blame the medical system than put actual responsibility of patients. Unfortunately, these are the types of patients we deal with on a daily basis.

      • GregM

        Actually, that 100,000 number was disproven many times. That IOM study had very shady methodology — I don’t think they ever actually revealed their methodology for coming up with that number. Sound fishy? Because it is.

        Subsequent studies in JAMA (PMID: 11466119) and Effective Clinical Practice (PMID: 11151524), in addition to numerous other articles, have found that the results of the IOM study are extremely, extremely flawed and that the deaths due to medical errors is actually closer to 10,000 – 15,000. At most.

        Don’t spout off information without reading the original articles and evaluating the methodology. The IOM report regarding medical errors was (and still is, considering how often that bogus number is brought-up) as damaging to the medical field as the Wakefield study was to vaccination. It is absolutely shocking how badly done that IOM study was and how willingly the world keeps using that number in spite of dubious methodology and extensive evidence suggesting that the 98,000 number is vastly overinflated.

        Please don’t repeat this 98,000 crap in the future. Educate yourself. Thanks.

        Edit: From my personal experience in the medical field, the overwhelming number of people die because they don’t take care of themselves and expect physicians to have a magic pill or procedure that makes decades of damage go away. These people die no matter what physicians do. Guess who gets the blame though.

        • karen3

          Greg, the study I am referring to was done by HHS and its methodology is clearly disclosed. It is a solid study. I wonder, do you think starving a patient with a UTI to the point of causing a heart attack, against the patient’s will, is wrong??? Do you think that patients getting multi-drug resistant Klebsiella and having medical staff share equipment between those patients and health patients is OK? Greg, have you considered anger management or taking a break from the medical field, because you sure seem to be full of hostility. Maybe a bit of time for reflection would do you wonders.

          • GregM

            Please Karen, tone down the condescension. Nothing in my original post implied anger or that I required anger management. Some annoyance with the overinflated number that has been disproven many, many times? Yes. Anger? No. It actually seems like you might be the one with the issues here. I’ve responded back reasonably, with minimal emotion, and actual scientific articles (with citations) to back up what I state. You’ve responded with emotional questions, no citations whatsoever, and grammatical errors.

            I doubt you’re a physician, so you probably don’t understand many of the things that happen to patients. My morbidly obese, diabetic patients who are admitted due to whatever condition they came in with (generally self-inflicted) will have a near-100% chance of getting, for example, bed sores if they’re in the hospital for a week. No matter what we do, no matter how many times we reposition them, etc. Now, getting those bed sores is apparently a “medical error” even in these patients, who are at incredibly high risk for getting these, getting a hospital-acquired infection, etc. Even with the best, most attentive staff, they’re still at pretty high risk for developing these. I have no clue what you mean by “intentionally” starving patients to the point of UTI — I’ve never, ever seen that happen in the many hospitals I’ve been in throughout training and practice. I’ve also never seen equipment sharing between patients with MDR bugs. I don’t what hospitals you’ve been to, but that’s most likely an isolated incident. Extrapolating from that to the entire medical field is downright idiotic and disingenuous.

            Have you considered educating yourself on basic medicine? Perhaps spend some time shadowing in the hospital or the clinic? Maybe then, you’ll have some idea of what the real world of medicine is like. Your idealism is nice, but you overestimate how much we know about the human body and how capable we are of preventing anything and everything. Maybe after spending some time on the wards yourself, you’ll understand why there’s so much difficulty in preventing things like nosocomial infections, etc. Many patients WILL get these no matter what we do.

            PS. Again, yes, that 98,000 number HAS been disproved an incredible number of times. I’ve even provided 2 sources (actual peer-reviewed articles) for you to assess. If you want more, I’m afraid it’s up to you to search for them. I can’t spoon-feed you everything, after all. The original study was incredibly flawed and used very dubious methodology to come to its conclusions. I stand by what I said earlier — that original report was as damaging and disingenuous as the Wakefield article was to vaccination.

  • http://www.facebook.com/shirie.leng Shirie Leng

    Excellent post. I find in our ER that if a person comes in with abdominal pain the CT and the complete blood work have already been done and the OR booked before a doctor even really lays eyes on the patient. Part of the problem is defensive medicine, part is lack of time to really evaluate a patient, part of it is the pressure to figure out “dispo”
    The problem with you’re recommending that the patient ask about diagnoses is that you are assuming a level of knowledge/education that most people don’t have. Most people will willingly go to test after test because they think that medicine is an absolute science and that we doctors have all the answers. Medicine is not an exact science.

  • Nurhusen Ibrahim

    I completely agree with your point that the client have to ask indetail about thier diagnosis before they signed the consent.

  • Dyck Dewid

    What I’m hearing, doc., is your recommendation for the patient to be more involved.

  • swatib

    Not’ ruling out’ as you put it is the job of a family physician / general practitioner and not a specialist.
    A lay man wants to be treated specially and as the misnomer term leads him to an unwanted place to a fella who is specially trained to view the tubular & magnified view which is of course required but then under different circumstances.
    Both docs are complimentary but not changeable.

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