In the US each year there are 12 million adults who are medically misdiagnosed. That is equal to about 1 in 20 adults who could possibly face severe harm because of their misdiagnosis. This twelve million represents about 5% of outpatient encounters. This exceeds the number of people who are harmed by drug errors and surgery on the wrong patient or body part. A 2009 report found that 28 percent of 583 diagnostic mistakes reported anonymously by doctors were life-threatening or had resulted in death or permanent disability. I am one of those mistakes.
You can read my story here, but basically I went to dozens of doctors over the two years I spent looking for answers. In some cases I was given a bogus diagnosis, and in others I was completely ignored and told to take antidepressants to calm my female mind. By the time I figured out I had Lyme Disease it was too late, I was permanently disabled. I now get to live the rest of my life in pain because of doctors’ mistakes. And every one of those doctors is still out there practicing medicine on other people.
So why are medical misdiagnoses so common?
Doctors overconfidence and God complex
Doctors rarely think that they are wrong. Doctors who are aware of the prevalence of medical mistakes insist that “the other guy” is the problem. In my experience, the one doctor that I confronted about their misdiagnosis insisted the problem was my fault, that I hadn’t given him enough information. It didn’t seem to occur to him that since he ignored the information I gave him in the first place, additional information wouldn’t have solved the problem.
Overall with doctors there is often a failure of metacognition (the willingness and ability to reflect on one’s own thinking processes and to critically examine one’s own assumptions, beliefs, and conclusions). Doctors do not like to admit when they don’t know something, so instead they either blame the patient or throw a diagnosis out there that may or may not fit. If only doctors could learn the phrase “I don’t know, but let me refer you to someone who might,” there might be less misdiagnoses out there.
Lack of engagement
Ironically one of the best ways to improve patient outcomes is through engagement, and yet many doctors get offended when a patient dares to discuss their own opinions on their body. Personally I have never had a doctor speak to me for longer than ten minutes. How anyone could make an accurate diagnosis that quickly is beyond me. Of course the nurse or the physicians assistant is the one who gathers all my medical information and then passes off to the doctor, but rarely have I encountered a doctor who actually read all the information. Instead they often blame their mistakes on the patient and their “failure to communicate.” In reality healthcare is about everyone but the patient. Doctors don’t like engaged patients who ask questions, they want their patients to be quiet and passive.
The instances of sexism in healthcare are well documented and almost endless.
- Doctors are twice as likely to attribute a woman’s even “textbook” symptoms of heart attack to anxiety and are seven times more likely to send a woman home from the ER during a cardiac event.
- Women are disproportionately affected by chronic diseases that are life-long and difficult to diagnose such as autoimmune disorders, fibromyalgia, chronic fatigue syndrome. Yet the fact that this is widely known has not decreased the difficulty in getting a diagnosis. Women are often seen as “overreacting.”
- In a 1999 study published in the New England Journal of Medicine found that white women (and black men) were 40 percent less likely to be referred for potentially life-saving cardiac surgery.
- Women are more likely to have their symptoms misdiagnosed as “stress”
- It takes on average two years to get a Fibromyalgia diagnosis because many women just get told they are crazy and need to see a psychiatrist.
Lack of Incentive for accuracy
There is little incentive for doctors to come up with the right diagnosis. They get paid for surgery and performing tests, not by making the correct diagnosis. There is no penalty for failure except in the case of malpractice. Unfortunately, even if the doctor has great intentions there is no incentive for them to double check any of their conclusions. In an attempt to improve in this area the Affordable Care Act enacted “pay for performance”in hospital reimbursement for Medicaid and doctors are collectively shrieking about the unfairness of it. Even though this could be an improvement over the “pay for services” option in the past and maybe give some actual incentive for doctors and hospitals to care about their patient’s outcomes.
How do we fix this?
First there needs to be some structural changes. Patients should have access to their own medical records so they can review them for accuracy. There should also be increased training in medical school about making a diagnosis. Second, patients can make some changes by realizing that their doctor is not all powerful because they went to medical school. Patients should ask their doctor questions and always get a second opinion on a diagnosis. They also need to find a doctor who is willing to listen and isn’t threatened by an informed patient (easier said than done). Patients should also keep track of their own health care including medications, lab tests, and the course of their illness over time.
This is not an easily fixable problem, but it is something that can (and must) be improved incrementally. Patients and doctors can work together to reduce the number of misdiagnoses by improving their communication, and being willing to admit that they might be wrong.