I have been taken to task by members of the medical community for daring to expose the truth that some doctors are incompetent and make misdiagnoses.
It will be interesting to see what those same people have to say about "How Doctors Think", the new book by Dr. Jerome Groopman, a Harvard Medical School professor and a honcho at the respected Beth Israel Deaconess Medical Center. After seeing incompetence and misdiagnosis affected friends and family, Dr. Groopman set out to find out how this happens.
Non-fiction author Ron Chernow praises "In this splendid and courageous book, Dr. Jerome Groopman lifts the veil on possibly the most taboo topic in medicine: the pervasive nature of misdiagnosis."
I am very curious to see whether the medical community calls Dr. Groopman the same names they have called me for breaching this taboo, or whether they praise him for finally educating them on how to avoid being sued for malpractice. Quite often, the problem is simply that the doctors didn’t listen. Groopman documents that patients are interrupted, on average, after just 18 seconds. This can be the difference between hearing the two symptoms that are compatible with depression and the third one that changes the diagnosis to CFS. My own medical records prove that doctors don’t listen – there are many things in there that I never said, twisting of facts, and flat-out lies.
For years, I suffered from daily digestive problems. Since the first doctor had convinced himself that I gained weight because I sat in front of the fridge stuffing my face at 3 AM whenever I couldn’t sleep, he missed the real cause. A doctor who did listen, who asked the right questions instead of deciding he didn’t need to ask questions because he knew what the answers would be, solved the problem in minutes, with a bottle of antacid pills that cost a whopping $3.
By listening instead of filling in the blanks with assumptions, he figured out that the problem was not that I was eating at 3 AM, but that I was NOT eating at 3 AM. I’d collapse into bed, exhausted, at 5 PM, too exhausted to get back up, and not eat anything for 12+ hours, leaving my stomach acid nothing to work on. There were times I was too exhausted to fix dinner, and didn’t eat for 18 hours between lunch and breakfast the next day. The only difference between the two doctors was that one "knew" that "every depressed woman eats non-stop" and the other treated me as an individual, not a statistic, asking what I did, not assuming that I do what other women do. (In fact, weight gain from altered metabolism is a common problem in CFS, and has nothing to do with increased caloric intake.)
The very first story Groopman tells in the introduction is very similar to mine: a woman with chronic digestive problems whose life was saved because after 15 years of misdiagnosis and wrong treatment, a doctor finally decided to think outside the box. Dozens of doctors, multiple hospitalizations, numerous psychological assumptions, and everyone missed that her problem wasn’t in her head or her stomach: she was allergic to gluten. Doctors had almost killed her by telling her to eat carb-heavy meals to gain weight – giving her massive doses of precisely the foods that she was allergic to.
I’m not a doctor. I’m a patient. I was only two pages into the introduction when Groopman said the sentence that leapt out at me, after being told to eat easily-digested carbs "the more she ate, the worse she felt." I knew the problem right then. It took the doctors till page 15 to settle on celiac sprue as the proper diagnosis. Why? Because I’m NOT a doctor. I subscribe to B.F. Synhorst’s theory that "Historically, illnesses are attributed to temperament when science lacks, or refuses to seek, answers". I don’t automatically blame the patient; when the answer isn’t obvious, I think outside the box. I’ve also, as a patient, heard a lot of other patients say "doctors misdiagnosed my problem for years, but when one suggested celiac, I recovered quickly". What made me a better diagnostician than all the doctors this woman saw? I’ve listened to what other patients have told me about their experiences, and I spotted a detail that got lost in the big picture because I’ve heard this story many times before and know how other doctors solved the problem.
Similarly, we’ve all heard doctors say that it’s haaaaaaaard to diagnose CFS. Then why is it that CFS patient support groups can diagnose it with near-100% accuracy? Once again, because we listen. We’ve heard it all before, we know what tell-tale phrases will spring up in a True CFS patient. Some of us studied CFS under the medical care of one of the nationally-recognized experts (and others have read their books till they’re committed to memory); we actually know more than the average PCP about CFS because we’ve immersed ourselves in it since the 1980s.
Groopman writes that medical students are taught "Only after all the data are compiled should you formulate hypotheses about what might be wrong." Unfortunately, if you begin interrupting after just 18 seconds, you can’t possibly have all the data. The doctor who finally correctly diagnosed the patient’s celiac sprue did just the opposite. He asked her to begin at the beginning, the first symptoms, the doctors, the tests, and let her talk all the way through to the end, listening all the way. By doing so, he picked up clues that others missed. He started fresh, with an open mind, instead of assuming that the prior diagnoses were correct and the only reason treatment wasn't working was because the patient was non-compliant.
William Osler said that if you listen to the patient, he is telling you the diagnosis. I’ve had doctors blame my divorce for symptoms that started years earlier when I was married, but that was ancient history and they didn’t want to listen to it. Faster and easier to blame the divorce, but that leads to misdiagnosis, because they’ve missed the part where "I have never felt right since the virus in 1987", the part that means it’s most decidedly NOT post-divorce depression. Groopman agrees, "If the patient is inhibited, or cut off prematurely, or constrained into one path of discussion, then the doctor may not be told something vital."
Social psychologist Judy Hall observes "The doctor is supposed to be emotionally neutral and evenhanded with everybody, and we know that’s not true." CFS literature is filled with stories of women who were given psychiatric diagnoses while men with the same symptoms were "really sick".
Unbeknownst to each other, a friend and I saw the same doctor; when we compared notes afterward, he had made the same disparaging remarks to each of us about divorced women; he had the notion that every divorced woman is looking for a way to get alimony so she won’t have to work. He may be a good doctor for men, but he’s going to approach every divorced woman with the attitude that she’s out to fleece her husband. The medical group does nothing to ensure that he sees only male patients, so he continues to misdiagnose divorced women, even those who had been the primary breadwinner and didn’t stand a chance of getting alimony from a near-penniless spouse.
Groopman elucidates "Misdiagnosis is different. ... It reveals why doctors fail to question their assumptions, why their thinking is sometimes closed or skewed, why they overlook the gaps in their knowledge. Experts studying misguided care have recently concluded that the majority of errors are due to flaws in physician thinking, not technical mistakes." "As many as 15% of all diagnoses are inaccurate", primarily because doctors "fell into cognitive traps", like the doctor who consciously or un assumes that all divorced women are scheming to get alimony. Groopman observes "The doctor becomes increasingly convinced of the truth of his misjudgment, developing a psychological commitment to it. He becomes wedded to his distorted conclusion. His strong negative feelings about the patient make it harder for him to abandon that conclusion and reframe the clinical picture differently."
And, in fact, without proper treatment, both my friend and I failed to improve, which "proved" to that doctor that the whole problem was we didn’t want to work. He didn’t need to look for any other reason for our symptoms beyond the assumed desire for alimony. When we reported getting progressively worse, he viewed that simply as "proof" that if we couldn’t get him to say we were disabled with our initial symptoms, we were going to exaggerate until we found the level at which he was convinced of our disability.
Unfortunately, both of us had very real medical problems, which really did become worse and caused further physical damage when they were not properly treated, but because he was filtering everything we said through "divorcee wants alimony", he never once considered that we were telling the truth.
My friend, thank God, got to a different medical group in time, and is now back at work. He and other members of his medical group strung me along with empty promises until it was too late for me to make a full recovery.
MORE COMMENTS AS I GET FURTHER INTO BOOK...
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