Friday, June 24, 2011

The Patient Catch-22

"You are your best advocate." How many times as a patient have you heard that it's our responsibility to stay informed when it comes to our health? Whether it's Dr. Oz, The Wall Street Journal's column The Informed Patient, or a website dedicated to patient care, all of them suggest staying informed. But when it comes to working with doctors, many absolutely despise well-informed patients. Doctors have such a bias against informed patients that they have a term for it: cyberchondriacs- someone who thinks they're sick just because they've researched too much online. This Catch-22 is, in my experience, potentially deadly.

I had researched my symptoms using an online diagnostic tool. It spat out several possible diagnoses, many of which I could rule out. One I really couldn't: adrenal insufficiency, a life-threatening condition. I asked the doctor for the test (I blogged the visit). He told me I didn't have it. He was wrong. When I got my records for a move to California, there was no mention of my request for the test. Nothing about my symptoms or complains. And nothing to take to an advisory board or lawyer...

I was dying. I caught it. He missed it. My experience tells me that I MUST stay and informed patient if I value my life. I was the one who suspected my pituitary and I was right. I was the one who thought it was autoimmune and I was right. But only when I had doctors who valued my opinion did I ever get the proper tests and treatment for what was actually wrong with me. All of it was provable or disprovable by simple blood tests. But my first doctor refused to run the tests. That is absolutely insane to me.

The problem is, of course, professional narcissism.

Consider a patient like Susan, who Dr. Scott Haig, an orthopedic surgeon in New York, wrote about in Time magazine in November 2007. The title of the essay: “When the Patient is a Googler.”

Susan, in her 40s, had been diagnosed with chronic patellofemoral pain. By the time she came to Dr. Haig, possessing a wealth of information, she had seen three other doctors. At once, he writes, Susan “launched into me with a barrage of excruciatingly well-informed questions.” On and on she went, reported Dr. Haig, raising every possible theory about her knee pain. He called it a “diatribe.”
The Medical Googler

Um... Excuse me? Check your ego at the door, sir. There is no way that you are such a gift to medicine that you don't have to look stuff up yourself! There are even studies!

Australian researchers reported in the British Medical Journal on their study that chose 3-5 search terms for hard-to-diagnose illnesses, and then looked at how Google did compared with reports published in the New England Journal of Medicine. The study found that doctors who use Google to help diagnose difficult cases can find a correct diagnosis over 60% of the time.
What Doctors Really Think About Women Who Are Medical Googlers

What's frightening, is that's the exact same success rate of real live doctors.

[Dr. Elizabeth] Burton says experts find a 40 percent misdiagnosis rate. "Out of those 40 percent, about 10 to 12 percent are significant. In that---had that diagnosis known---been known prior to death, at a minimum, the patient probably could have been discharged alive from the hospital during that hospitalization," she says.

What's more, despite all the advances in modern medicine, the rate of misdiagnosis hasn't essentially changed in 100 years.
Because The Doctor Isn't Always Right

What you fear being undermined, sir, is your relevance, not your authority. But you don't have so much to fear!!

See, I still want to ask the professional about my research. I know I'm the lay person here. But I'm pretty damn smart, and I did pass orgo chem (so I can pronounce those big fancy words, than you very much). I want the professional opinion because they are much more familiar with the territory of medicine than I am. I'm just an expert on me. I can tell a doctor everything about the forrest. But doctors are the ones with the skills to see the path through the trees.

Because even though I can out diagnose most of my doctors, they find things that never even cross my mind. It was my endocrinologist who sent me to a rheumatologist who discovered I had Sjogren's. It was my neurologist who discovered my all-over muscle spasms. I'd just thought those were flukes of my biology. "We Southern women don't perspire; we glisten." Um, no... That's a family autoimmune disease. "I've got strong shoulders." Yeah, because all the muscles are frozen in place. Oh, crap.

I think what medicine and doctors are having is an identity crisis. They used to be the gate keepers of knowledge of the body, but now that knowledge is available to everyone. They medical system has become so corporatized that doctors in med school take classes on insurance and office work that didn't exist 50 years ago. They're becoming cogs in a machine with less autonomy than ever.

But the truth is doctors are very much artists, each with their own style and approach. Lawyers are much the same way. We all want things this way. Problem solving requires creative thinking. Our bodies are not machines, they are individualistic; like works of art. I know my painting pretty well and I can say, "This is what I see." But the doctor, with their trained eye can say, "Ah, but did you notice this here? And did you see that nuance there. Now what do you see?"

The hard reality is, the Internet is not going to go away, and patients are gonna ask a lot more informed (or misinformed as the case may be) questions. Doctors can reject this and close their minds to these patients, and get scathing reviews in the process. Or, they can re-evaluate their pride and embrace this informed patient as someone who wants to be responsible in the management of their health.

Patients are very networked these days. Doctors can use that to their advantage.Because when I get a doctor I can work with, I always improve. It may take a little trial and error, but we get there, and I recommend these doctors to every support group I'm a part of. Between popular message boards like those at, Facebook, and LiveJournal, that's a hell of a lot of free advertising reaching the precise target audience. You can't pay for that kind of good press. So really, it's in doctor's best interests to work with folks like us.

Furthermore, we 'Medical Googlers' save y'all's butts sometimes. I took a call from my Aunt Gege when she was really pissed at her doctor because of something he'd done. But, because I'm an informed patient, I was able to explain to her that he had to do it that way because of x, y, and z. "Well, I wish he would have explained that to me!" To which I replied, "He probably didn't have the time..." And she recalled he did have to rush off to surgery. One more satisfied customer, your welcome. I don't even *know* this doctor and I'm advocating for him! Lol!

Doctors: See us informed patients as a golden opportunity for shining success rather than a challenge.

That's my opinion as a self-proclaimed "professional patient." ;)

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