Re: This afternoon I read Karla's Story - from the adhesions quilt

From: cathy:- (anonymous@medispecialty.com)
Wed Dec 12 15:46:34 2001


This is a fabulous monograph, Jo. So clearheaded.

I just wanted to add a few thoughts to one part, where you talked about the psychology of the doctors who we come in contact with:

At Tue, 11 Dec 2001, Wally wrote: >Still others will send us off for a battery of tests, each appearing to
>back up that they have completed their task and that all is right and
>that we have no cause to complain.

I find that an incredibly insightful explanation. And I think you are right to focus on this -- if we don't understand what motivates the doctors we will not be able to motivate them to help us.

There are 2 points that I think in particular are important and I would like to add to your analysis. The first is a rather straightforward fact that has been observed and well-documented, and that is that there are many people whose insides look like an explosion at the glue factory but they are NOT in pain. And no one really understands the difference... So when you sit there in the doctor's office claiming that adhesions cause pain, the doctor may be hearing that "adhesions ALWAYS cause pain." And then he says, "Aha! You are WRONG!!!" Of course when you are sitting there you are only claiming that YOUR adhesions are causing YOU pain. If you find yourself having one of these academic arguments of what percentage of people who have adhesions have pain, you need to make it clear that you are perfectly willing to believe that you are in the minority. Because a surgeon will have personal experience where he went in to do some surgery and he found dense adhesions, and then after the surgery he asked the patient if she had ever been bothered by abdominal pain and she will look at him blankly and say, "why no." You need to validate the doctor's personal experience -- yes, that patient really had adhesions, and yes that patient really was not in pain. But that's her and I am me and I AM in pain.

The other psychological sticky point for doctors is that adhesions are NOT a disease, they are an injury. And sometimes the injury is caused by inflammation or a trauma like a car accident. But the VAST majority of the time the injury was CAUSED by surgery itself. In other words, it was caused by a doctor. A couple of days ago there was in article in the Wall Street Journal and they talked about how the (US) Veterans Administration health care system has set up this really impressive medical database that helps them to make better treatment decisions for the people they treat. This was set up by a guy who came from NASA. He started by pointing out to a huge difference between the way that pilots and engineers think of safety and the way that doctors think of safety. When a plane or rocket crashes, the NTSB or NASA or the military equivalent show up and ask the fundamental question, "What happened?" When a patient is injured, the question is, "Whose fault is it?" Well, when we show up at the doctor's office with our doctor-caused injuries (maybe even caused by the very doctor we are talking to) then somehow we need to keep the focus on "what happened?" and "what can we do to make it better?" and stay away from "Whose fault is it?" Because as soon as you start with the "blame game" then the doctor will go for the "denial strategy" where he simply denies that you have been injured. Because if he admits that you have been injured by surgery then he has to make a whole lot of other very uncomfortable admissions. Things like the fact that actions can have unintended consequences. That a doctor can go in with the intention of making things better, and come out with the fact that he has made things worse. That the doctor is not in charge, and not in control, and just because the nurses and the surgical techs can be made to do his bidding does not mean that your abdominal fascia can be forced to go along with his desires.

--
cathy :-)

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