I realize that my family is using an unusual strategy to bring attention to the need for a law requiring disclosure of harmful medical errors to patients in Kansas. Our strategy is based on extreme transparency and the expectation of having authentic discussions with relevant organizations. And therefore, in this spirit of extreme transparency I am going to explain the strategy behind our strategy.
The reasons behind our strategy
It has been pointed out to me that this blog “is available to everyone, including those who may want to see your bill fail.” Yes. That is the point. Consider our perspective. My family expects healthcare providers to have authentic, honest conversations with patients who have been harmed by medical errors or who have suffered unanticipated outcomes, even if those healthcare providers will find those conversations uncomfortable, and even if those healthcare providers may appear imperfect in those conversations. Therefore, I expect no less from my own family. We hold ourselves accountable for having authentic, honest conversations about our proposed legislation, even when those conversations are uncomfortable, and even when we may appear imperfect.
It has also been pointed out to me that I am letting my emotions show in this blog. Yes. That is the point. For most people, the topic of medical errors is abstract or academic or viewed as a threat to professional identity. And unfortunately, policies concerning medical errors are often cast as a political issue or a “doctors versus lawyers” issue. The purpose of my blog is to redefine this as a patient issue and a healthcare issue. And for some of us, this is a very personal and painful issue. This perspective needs to be heard because I believe it is the most important one.
The forces against us
This strategy is not naive. I am quite aware of the forces against us.
First, if we take the “doctors versus lawyers” mindset, neither party likes what we have proposed. Doctors don’t want to be required to disclosure harmful medical errors and unanticipated outcomes to patients, and lawyers don’t want disclosure conversations to be excluded from evidence in malpractice proceedings.
Second is the money issue. I have matched campaign contributions from the relevant state professional organizations to the members of the Kansas Committee on Health and Human Services (who will be hearing testimony on our bill). I am trying to not read too much into these donations, but they make me uneasy. In contrast, my family sent two books on medical errors and accountability in healthcare to each member of the committee. So the other parties are saying “take this money and get re-elected” and my family is saying “take these books and read them so that you will be informed”. No contest there. (As a side note, my mother had to register as a lobbyist. That feels kind of dirty.)
Third, Kansas is not known as a leader in patient safety or patient rights. When I talk with people here at the University of Washington about what my family is doing and tell them this is happening in Kansas, they often give me a strange look, there is a long pause, and then they repeat “Kansas?”. Yes, Kansas is perhaps the last state anyone would choose as the site for a campaign for a mandatory disclosure law. But I didn’t choose the state.
Possible strategies by other parties
So now that you know the reasons behind my family’s strategy and what we are up against, let me speculate on the strategies that could be taken by others (including those who want to see my family’s efforts fail).
First, there could be more personal attacks on my family. As demonstrated in my last blog post, I will respond to those. And I will get pissed off. I hope that you will get pissed off too.
Second, it is possible to string together a series of fears about the medical system in order too imply that our bill threatens access to healthcare and will threaten lives. (Here’s an idea…If disclosure is made mandatory, doctors will flee the state, and the poor people will be denied access to a doctor, and the babies will be hurt!) Please attack us using that angle. I have my material ready to go.
Third, representatives of the Kansas healthcare system might claim that Kansas is not capable of implementing a system of mandatory disclosure for harmful medical errors and unanticipated outcomes. This may be a real concern, given that a voice on the conference call last week exclaimed, “There’s 127 hospitals!” (at least I think 127 was the number given). (As a side note, in 1986 Kansas enacted laws requiring medical facilities to create risk management plans and to conduct peer review (secretly) and to notify the state of “reportable incidents” (secretly). I would like to use that as evidence that Kansas should be capable of carrying out disclosure to patients. But since all the peer review and reporting is secret, I do not know if any of it actually happens.) So I will admit that taking the strategy that Kansas is not capable of delivering what my family is asking for is a reasonable way to defeat our efforts. However, I see two dangers in making this argument. First, having honest conversations with patients about harmful errors and unanticipated outcomes (and having some oversight to help ensure this is done) is rather simple compared to the job of actually delivering healthcare to the citizens of Kansas. Kansas citizens might realize this and start to question their healthcare system. Second, this strategy could make Kansas look bad in the eyes of other states. I promise not to bash Kansas, but I cannot control the reactions of others.
A fourth possible response is to actually work together toward a new legislative bill that reflects the four rights and responsibilities my family’s bill is based on.
My family, this blog, and moving forward
So I would like to conclude by saying that my family has three things: (1) what has happened to my father and my family, (2) our honesty, integrity, and willingness to stand up for patient’s rights and safety, and (3) this blog.
I am using this blog to document my thoughts, to provide links to some resources, and to shine a light on whatever happens as my family moves forward with this. I hope that this blog becomes a resource for classes in medical ethics, healthcare administration, and healthcare law. It is my contribution to efforts in patient safety and patient rights. (I realize that right now this blog is a bit difficult to navigate with just the tags and categories. When this is over I will create a table of contents that will group the posts by subject.)
I will also be talking and writing about my family’s experience in forums outside of this blog. Yesterday I wrote a piece for the Engage science communication blog that discussed last week’s conference call. That piece is titled “Having conversations on emotionally-charged topics…and getting hit with big balls of nasty.”
I believe in transparency. I believe in honesty. And I believe that improvement in healthcare requires people to speak up and do uncomfortable things, simply because it is the right thing to do.
Will you add your voice?