When Errors Attack
Sunday, March 29 2009
Paul Levy is hosting this week’s Grand Rounds, and he wants posts about “When things go awry“ – namely, medical errors. I’ve posted on this topic before, but I might as well revisit a couple of these stories. I have experienced innumerable minor errors in my life, but at least two were serious. I’ll tell those stories, then answer Paul’s questions.
A year after I was diagnosed with Crohn’s, I went off to my freshman year in college. I found a gastro in town, who immediately put me on prednisone at a fairly high dosage. Every time I went back to his office, he would weigh me. Prednisone being what it is, I gained a lot of weight. I was also miserable – couldn’t sleep, had wild mood swings, drove my car into things, got massively depressed. I told the gastro about this repeatedly, and he always pointed out that my weight gain meant I must be getting better. After a couple months of this, I was closing in on suicidal. I had plans. Fortunately, I had a friend whose mom was a nurse; she overhead me say I was on a high dose of pred. “You know that stuff can make you crazy, right?” she asked. It was news to me. I promptly fired the gastro and went back to my hometown doctor, who agreed the prednisone was killing me. He weaned me off pred for the next four months. Even after that, I was badly shaken; it took me a year or two to get anywhere near normal.
A year later, I was still in college but had no gastro; there was only the one gastro practice in town, and I didn’t want to go back. When I developed a painful bump near my anus, I went to see a primary practitioner that a friend recommended. The PCP diagnosed my bum bump as a “boil”, and told me to take regular sitz baths until it resolved. That didn’t help, so he tried a course or two of antibiotics. It always came back. After a few months, I asked the doctor whether this could be a fistula. “I don’t think so,” he said. When I went home for Christmas, my mom noticed I was limping. When I told her why, she insisted I go see my gastro, who confirmed that it was a fistula. The next day I saw a surgeon. The day after that, I went into surgery to have it resolved. The problem had festered for so long that it left a lot of damaged tissue; I had to have a drain in my butt for about a month, until the surgeon decided it was safe to remove.
In both cases the mistake was the same: the physicians didn’t listen. In the first case, the gastro ignored the side effects that I repeatedly complained about. In the second, the doctor ignored the knowledge I brought to my treatment. In both cases, the doctors had all the information they needed to avoid dangerous, costly errors. For whatever reason, they felt they could disregard that information because it came from the patient.
Paul wants to know how my provider(s) responded: they didn’t. Once the errors were discovered, I didn’t stick around to give them a second chance. They had plenty of time to figure it out in the first place. Neither of them ever made an effort to apologize or contact me after they were made aware of their errors.
As for my view of the medical profession, these were my first peeks behind the curtain – and there is no wizard. I began to realize that if I was to thrive despite this disease, I needed to step up. I quit relying on my doctors to take care of me. I started paying more attention, and began learning more about my disease. I started looking for doctors who do listen, who welcome my active participation in my care.
My advice to providers: listen to your patients. I think the inability to listen is symptomatic of a bigger problem in health care, that patients are taught to think of themselves as subordinates in the physician-patient relationship. I’ve written a lot of posts against that attitude, and usually my point is that it’s bad for patients. What should be obvious from this post is that this attitude is also bad for physicians; a patient who isn’t allowed to help his doctor can’t help that doctor avoid serious mistakes. How physicians might cultivate more equitable relationships with their patients is a different post, but learning to listen – and listening to learn – is a good start.
I love to read your information from a patient’s point of view. I am family physician but my daughter has cancer so I also have seen things a lot from the patient’s point of view.
I, as a physician, always try to listen to my patients. Sometimes patients come in with a concern and I specifically ask them what they expect of me that day. Sometimes it is not clear. I also always try to keep asking “Anything else?” until they say “No. That’s it.” Sometimes patient information is off base. If so, then I try to explain to the patient why it is off base. Sometimes a patient’s concerns are out of step with their problems (they are worried about wrinkles and I am worried about their chest pain).
As the patient advocate for my daughter, we have moved around a few times for her care. She had a problem with her feet 2 different sizes. Her oncologist said it was from her puberty. I took her to her pediatrician and he noted her legs were 2 different lengths. This was from her tumor. Now she is seeing ortho as well. If I hadn’t kept pushing then I would not have gotten her the correct help. I still see the oncologist for her cancer care, but not her legs. You have to keep pushing sometimes until things seem right.