Give patients the truth, or they will find something to substitute in its place

Yesterday I was planting my garden and thinking about all the crap my family has gone through over the past year. And I also realized that the way I think and talk about what happened to my father has changed.

A couple months after my father’s death I told a few people here in Seattle what happened. When I got to the part where I said, “the physician would not allow him to be transferred to a burn center”, people always looked at me with a horrified/puzzled expression and asked “why?”. I would respond that I didn’t know why.

When I was first investigating what happened I was very careful to remember that I didn’t know the truth. But I desperately wanted to know the truth, and I spent quite a bit of time working through every possible scenario that could explain the delay. I started making flowcharts to keep track of every possible cause and account for every decision point and every person involved in my father’s care. (It is not appropriate to publicly share these, but below is a low-resolution example so that you can see what I am talking about. An example of one question is “Was transportation to the Burn Center available?”)

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I narrowed the delay down to three probable causes. I suspected that they all may have had an influence, but I didn’t know that, of course. And I kept reminding myself that I didn’t know the truth.

But today I realized that if I was now telling you what happened to my father and I got to the part where I say, “the physician would not allow him to be transferred to a burn center”, and then you asked “why?”, I would tell you why. I am to longer able to keep this void open. I have to fill it with something, and I have filled it with what I have come to believe.

I wish that the hospital would have told us the truth. I believe that patients and their families deserve to know the truth about medical errors. Withholding the truth hurts people deeply, and eventually they will find something to call the “truth”. (And I suspect that at times this substitute truth may be more damning then the actual truth.)

This is why my family has proposed legislation to require disclosure of harmful medical errors. I hope you will join us by supporting this legislation.

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