My family’s testimony before the Kansas House Committee on Judiciary

Last Monday my mother and I testified before the Kansas House Committee on Judiciary in support of our bill that requires disclosure of harmful medical errors to patients (and it also protects disclosure conversations from use as evidence of fault in court).

Testimony was heard on two bills during the hour-and-a-half hearing. HB 2523 (an apology protections bill) was heard first. Our bill was heard second.

My mother and I testified against HB 2523. Our position is that because this bill does not require conversations for disclosure of harmful errors, it will have little to no effect on getting these conversations to take place. And of course we testified in favor of ours. Our position is that patients have a right to know about unanticipated outcomes and harmful medical errors in their care, and a law is needed to uphold this right.

Here are the links to download our written testimony:

The experience of testifying

First I want to say that I made it through the whole thing without crying. Although I thought I was going to start crying a couple times when I was speaking (and probably everyone in the room thought so too), I didn’t.

I had never been to a legislative committee hearing before, so I learned quite a bit about what takes place. First of all, this was the layout of the room:

testimony_room_layout

The chairman had the list of proponents and opponents who would testify for each bill. Proponents went first, followed by opponents. People testifying had already submitted fifty copies of their written testimony earlier that morning, so each person spoke for just a couple minutes to summarize his or her position and then answer any questions from committee members. With the exception of my mother and myself, everyone else was representing an organization. Some organizations only submitted written testimony and did not appear in person.

Each person who took their turn providing testimony or asking a question began by saying, “Thank you, Mr. Chairman”. It was all quite formal. I think there might have been certain words that were to be said to indicate that a person was finished testifying and is ready for questions, but I didn’t quite figure out that part.

I didn’t hear any ideas new to me in any of the oral testimony. I guess I have read so much about apology and disclosure lately that I already know all the arguments. But I also know the weaknesses in those arguments. It was quite strange to sit there and think, “Yes I agree that is true. Yes I agree that is true. NO, THAT IS NOT TRUE!!!

The experience of writing my testimony

I spent over five days writing my testimony. It took such a long time because I held myself accountable for constructing logical arguments that are based on evidence from research studies whenever possible. I will let you determine how well I did.

There is a fair amount of research in the area of medical errors and error disclosure, and I believe this research should inform policy. If someone makes a claim about something in the world, I want to see the evidence that supports that claim. It is too easy to make general statements that sound like they should be true, and then use them to construct an argument that has no connection to reality. I want to see the evidence behind what other people are saying, so I expect people to want to see the evidence behind what I am saying.

It was sort of like quals. But different.

This experience had a strange resemblance to going thorough the qualifying exam for my Ph.D. work: Everything else in my life had to stop for about a week while I was writing a document that pulls together what I had been learning for over a year, then I appeared before a panel of people to answer questions. But unlike the oral part of my qualifying exam which lasted for about an hour, there was time for only a minute or two of questions after my testimony. I was disappointed that I wasn’t questioned for much longer, because I had so much more to say, so much more to say. But of course time was short, it was late in the day, and there were more people to testify.

But there was one aspect that was very different from my qualifying exam. At my qualifying exam I was the one who was new to biomedical informatics, and everyone on the examining committee knew much more about the field than I did. The situation was flipped in my testimony, where I was the one knowledgeable on this topic, and those on the committee knew much less about disclosure and apology for medical errors and unanticipated outcomes.

So what came out of this?

I think that my mother and I succeeded at raising awareness among members of this committee about the lack of disclosure of harmful medical errors. I hope that we were convincing enough that they will discuss this further in committee meetings. I hope that there will be a serious effort to craft a bill for disclosure of harmful medical errors and unanticipated outcomes based on what we have proposed, and that bill will be moved to the House floor. I realize that is a lot of hoping, but I also hope that no family in Kansas will ever again experience what my family has been put through. We have seen the very ugly side of the healthcare system, the side that hurts people and then tells them they have no right to know what happened.

I realize that the easiest thing for lawmakers to do is to look away, and pretend this side of the healthcare system doesn’t exist. So our efforts to speak out may be met with silence. But our efforts could also bring about concern and action. I don’t know what will happen. But as I always say, I will not be silent.

My father is dead. I have nothing to lose by speaking out. I hope to give a voice to those who cannot speak for themselves. I will not be silent.

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