Friday, March 4, 2011

"I tell you, they're not listening"

Dr. Oz's March 3 show (replayed in many cities the next morning), dealt with
Dr. Kimberly Manning admits "I tell you, they're not listening".  Doctors are taught (in some medical schools) to do "teach back" -- have the patient tell you what they think you said so you can verify they understood the prescription.  In my case, it would've been helpful to have the doctor do "teach back", so I could correct their misperceptions about when and why I stopped working, what I'd told them my existing diagnosis was, etc.
Something on the order of 80% of malpractice lawsuits are based on avoidable error.  And the biggest error is that the doctor didn't listen to what the patient actually said.
When I said "I was diagnosed by a virologist" how on earth did the doctor get from that "I have lifelong depression, not a physical illness"?!  Because he wasn't listening!!!!!!  He heard what he wanted to hear to support the diagnosis he wanted to make.  It made more sense to him to hear that my symptoms started when I got depressed after losing my job than to hear what I actually said, that my symptoms were the reason I lost my job.
Another doctor chose to hear that I stopped working in 1988 when I got my diagnosis, because that better fit into his bias than the truth, that I worked till 2000.  I was not a pampered housewife looking for alimony because I didn't like being back in the work force, I was a careerwoman who was ticked off that everyone wanted to accuse me of not wanting to work rather than doing what it took to get me back to work.
I didn't find these false statements in the records until after Disability had been denied based on them.  HIPAA does say you can request that errors in medical records be changed, but it's at the doctor's discretion.  If he wants to insist that he wrote down what you said and now you're changing your story, there's not a thing you can do about it.
If I'd done "teach back" -- tell me what you think I said about my symptoms, when they started, why I stopped working, etc. -- maybe this would've been avoided because I could've corrected their misperceptions.  Or maybe not, because these were intentional misunderstandings, where they turned things around in their heads till they made sense in light of their prejudices that all divorced women are depressed.
As a matter of self-defense, every time you see a doctor, make a request to promptly see what was written in the medical records at that appointment.  Then put it in writing "your records state that I stopped working in 1988.  In fact, I worked for Dewey, Cheatum and Howe until 2000, when I was fired because my symptoms were so severe that I could no longer do the work.  Please correct this error."
If the doctor insists on diagnosing depression, call him on it.  There are a number of symptoms that appear in CFS but not in depression, so ask point-blank, "What about this rash?  The fever?  The fainting spells? Are those symptoms of depression?"  Make him explain why he's disregarding objective symptoms in order to make a diagnosis that doesn't fit.
And, yes, I know, when you're deathly ill, just getting to the doctor's office can be more than you're really capable of, without standing up for yourself, too.  If at all possible, have a friend or relative accompany you to make sure the doctor's getting things right.  Dr. Oz also suggests Guardian Nurses nurse-advocates or some other patient advocate if you can't get a friend to take time off work.

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