Last Thursday I had a conference call with several people representing a couple Kansas professional organizations that I had invited to discuss with me their viewpoints on my family’s proposed legislation, Kansas House bill 2376. (This bill would require disclosure of unanticipated outcomes and harmful medical errors to patients/families, and would protect those disclosure conversations from being used as evidence of fault in court.)
Some very good points were brought up. For example, the language of the bill uses the term “harm” in defining other terms, but the term “harm” itself is not defined. (I will work on that.) Also, some aspects of practical implementation were pointed out. For example, in a situation where one physician discovers something that could possibly be an error made by another physician (particularly a physician unknown to the first), adhering to this process and timeline could get quite complicated and impractical. (I agree. And I don’t know how to handle that. I welcome suggestions.) There was also a concern that disclosing this information about outcomes and errors to patients/families would violate the peer review statutes (such as KS 65-49-22). (This is a very legitimate concern. This is the reason the local hospital CEO felt he was prohibited from sharing any information about my father’s care with my family. I cannot find any conflict between what my family has proposed and the peer review statutes. But if there is a conflict, my family feels that those statutes need to change.) All that discussion was very good, and exactly the reason I reached out to these groups.
But much of the conversation took a direction that I feel was quite inappropriate. I expected there would be an interest in the story of what happened to my father and family, because that is why we have drafted this bill. I did not expect to be put on the defensive and to have my family’s actions and account of what happened to my father questioned, prodded—and at times outright attacked.
Let me explain my perspective. I have been working on the issue of disclosure of medical errors for well over a year. I have been as open and honest as possible. I have tried to the best of my ability to examine different viewpoints and perspectives, and I have invited the thoughtful comments of others. These are complex issues, and they require careful listening with an intent to understand. And I will try to maintain this approach, regardless of how others respond.
And therefore, I am so very, very disappointed that the professionals on this phone call allowed what was to be a discussion about Kansas House bill 2376 to develop into something else, something that left me in tears. Those tears were not because I had to relive the incredible suffering my father went through, nor because I had to recite the account of how the local hospital CEO would not address my family’s concerns about my father’s care. Those tears were because I now had very clear evidence that my family is going to be personally attacked for our work.
It is our firm belief that patients have the right to know about unanticipated outcomes and harmful medical errors that occur during their care. Because the healthcare organizations in the state of Kansas have not set an expectation that disclosure conversations will occur—and provided a mechanism to ensure that they happen— legislation is necessary. Therefore I would like to keep the conversation on the legislation. However, I now see the conversation is likely to keep drifting toward trying to personally discredit my family. (Perhaps if my family can be discredited, then unanticipated outcomes and medical errors don’t really exist in Kansas? Or perhaps discrediting us will erase the evidence that patients and families expect to be informed about unanticipated outcomes and errors?)
My family has decided to publicly address the personal questions and criticisms that were directed at us during that phone conversation. When they were first asked I did a horrible job of responding. I did not come into the conversation prepared to defend my family, so my answers were very poorly articulated. I hope that my responses here provide the needed evidence and rationale for my family’s statements and actions. And I hope that by providing this information we can move the conversation away from details of my family’s personal experience and back to discussing the proposed legislation. (Or, of course, I realize that I could just be inviting attacks in new areas.)
Our response to the individuals on the call
The first issue: I was informed that I did not present enough evidence that my father had been harmed or that a medical error occurred. Every explanation I give you led to a further demand for evidence. My response to my lack of evidence has two parts:
First, I did not realize that I was going to be put on trial. The purpose of the phone call, as I understood it based on email exchanges that I initiated, was to discuss HB 2376. I don’t think it is particularly appropriate to start talking about details of what went on in the hospital that night because it involves people other than just my family. (Not to mention that my deceased father still deserves a bit of privacy.) But I see that those details are important for our credibility in your mind. So I will give you a small portion. I am not giving you everything, because I am saving the rest for any future attacks on my family. But for starters, here is one little box from my father’s intake record at the local hospital, and next to it the American Burn Association’s criteria for transfer to a burn center (and there are another four criteria that I am not showing).
You can see that his initial diagnosis was 30% second-degree burns. Patients need to meet only one criteria for transfer. My father qualified by the first criteria, because second-degree burns are also known as partial-thickness burns. (He actually met each of the first three criteria, because he had burns on his shoulders and he had extensive third degree burns on his back. I will save evidence and discussion of that for future attacks.) If you object to the American Burn Association guidelines, you can view another set of transfer guidelines in UpToDate. You will see that my father also qualified for transfer by those criteria.
Second, after my father’s death my family filed a complaint with the Kansas Foundation for Medical Care (this is an organization that investigates complaints filed by Medicare patients). We have received a letter with the result of the investigation. I suspect this letter would provide part of the evidence you seek, but I do not think it is appropriate to share it with you. (And in addition, the bottom of the letter states that the “information may be redisclosed only in accordance with federal regulations found in 42 CFR Part 480.101 and 42 CFR 480.107-108.”)
The second issue: It was the opinion of one individual that my family’s proposed legislation is inappropriate because my family has “unfinished business”. I was told quite sternly that we should have been able to resolve this issue by speaking with the physician that had been on call that night and who made the decision to not transfer my father to the burn center. My response to that assertion has three parts:
First, why was it our job to speak with the ER physician after my father’s death? My family’s motivation for attempting to discuss this matter with the local hospital CEO was to make sure the hospital was aware of this matter and was taking it seriously. We needed to know that the matter had been investigated and that it would not happen again to another patient. Also, it was clear to my mother that there were serious deficiencies in teamwork that night, and so we made the CEO aware of a program in teamwork training for healthcare professionals. I do not see how approaching the physician who was on call for the ER that night would have resolved any of my family’s concerns. In fact, given that the local hospital CEO made it very clear to us that he believed the state prohibited communicating with us about my father’s care, I do not think it would have been appropriate for us to start approaching individuals at the hospital. (Should we have also contacted each nurse involved and asked why they didn’t take action to elevate this matter to the next level of authority?) I believe that investigating what happened is the responsibility of the hospital, not my family. Because we have received no information from the local hospital about my father’s care, I was not able to answer your questions about why the ER physician made the decision to not transfer my father to the burn center. But I assure you that my family would like to know the answer. So yes, I agree that my family has “unfinished business”. But that unfinished business does not in any way detract from my family’s proposed legislation. Instead, it is a clear example of the need for the legislation.
Second, our decision to communicate with the CEO of the local hospital was very deliberate. That decision was based on what I had read about communicating with hospitals about concerns and apparent errors, as well as advice I had personally received. (As a graduate student in the University of Washington School of Medicine, I have been fortunate to be in an environment were I can receive a bit of guidance about how to proceed.) I know that my family’s contact with the local hospital CEO was appropriate because we had a hospital concern, not just a physician concern. If the CEO felt that the ER physician should have been involved in a conversation with us, I have no doubt that he would have suggested that. I suspect that the CEO would like nothing more than this entire mess—which is a gigantic headache for him—to have been quickly resolved and disappear. If bringing the ER physician into a conversation was the answer, it would have happened.
Third, we did not try to set up a meeting with the ER physician after my father’s death because of the tremendous amount of emotional trauma my family went through. (To be honest, I was unsure if we could even get through a conversation with the CEO. But we did.) To expect my mother to have a conversation with the ER physician, a person who only briefly had contact with my father and mother, and who neither my mother nor father had met before that night, is completely unreasonable. Try to imagine, just for a moment, what my family has gone through, and the role the ER physician played. That physician made the decision that my father would not be transferred to the burn center that night. So instead my father spent that first night in the local hospital, a place that was simply not equipped to treat patients with extensive burns. That physician is the reason that my father spent that night with skin coming off his back, becoming increasingly dehydrated, and his body’s systems shutting down. The next morning when the order to transfer to the burn center was finally given by another physician, he was placed on life support. And realize that my mother was with him the entire time, witnessing all this happening to my father, and the extreme frustration of the nurses in their inability to get a transfer approved by that physician. I believe that experience would take a serious psychological toll on anyone. Therefore, this is my mother’s perspective on the ER physician: she associates that person only with harm. Why would you expect a grieving widow to seek out a person associated only with harm? After all, if that physician has caused physical harm to my father and emotional harm to my mother, she would except the emotional harm to continue if she had further contact with him. If this perspective does not make sense to you, it is because you have never had a family member seriously harmed by someone in the healthcare system.
And so based on those three reasons, for me to be told that my family is at fault for not making an effort to speak with this physician after my father’s death is so utterly disgusting that I have no words with which to respond.
My observations about the conversation
In reflecting on that phone conversation last Thursday, I have two general observations:
First, I am still stunned at how inappropriate many of the questions and comments concerning my family were (as well as the tone of these questions and comments). It revealed a huge disconnect between the perceptions of individuals sitting high up in organizations and the reality for family members of patients who have been harmed by the healthcare system.
Second, I realize that personal attacks are easy. But we need to do the difficult work of crafting a piece of legislation that works for everyone. Don’t take the easy way out. Kansas has the opportunity to construct a piece of legislation on the issues of disclosure and apology protection that is based on evidence of what has worked well (and not so well) in other states. This legislation can help ensure that patients are treated fairly, and that healthcare providers have clear expectations for disclosure conversations—as well as assurance that those conversations will not be used as evidence of fault in court. Although there is nothing in this proposed legislation that directly addresses patient safety, I certainly hope that discussions of patient safety can develop out of efforts to craft this legislation. And a safer healthcare system would be a win for everyone.
So the choices are (a) personal attacks on my family, or (b) working toward a healthcare system in Kansas that communicates honestly with patients and takes seriously the issue of medical errors. That decision is up to you.
But if you happen to believe that patients do not have the right to know about unanticipated outcomes or harmful medical errors that occurred during their care, or that medical errors do not happen in Kansas, or those errors that happen are not important, or anything else that contradicts the premises this proposed legislation is built on, then have the courage to say it. Don’t take cheap shots at my family.
And in closing…
I have not named the organizations or individuals I had this phone conversation with. But if there are more attacks on my family in the future, I will be naming names. I think that behavior of this type reveals a great deal about the beliefs and priorities of individuals and organizations. And I think it is important for the citizens of Kansas to understand those beliefs and priorities. Because after all, it is their healthcare system.
Update: I looked into the issues in the second paragraph in this post.