The consequences of decisions

My mother and I have been invited by Shelly Dierking at PSE Partnership to attend a Telluride Patient Safety Summer Camp this June. Most of the other people attending will be medical residents and patients safety experts. We will be providing our perspective as family members of a medical error victim.

I have a friend who is a physician, and I emailed him to say that I will be going to this camp. He wrote back to say, “The Telluride camp sounds like a great opportunity, but it will probably dig up bad memories. Don’t let it take you off track from your PhD work!”

That was the wrong thing to say.

You are probably thinking, What? Why was that wrong? That sounds like a perfectly reasonable thing to say.

My friend’s response demonstrates a lack of understanding of the consequences of medical errors and the consequences that occur when those errors are poorly handled. It demonstrates a lack of understanding of the family member’s (or patient’s) perspective.

Let me explain.

First of all, the suffering my father went through and irresponsible treatment of my family is not something in the past. It is not memories I need to “dig up.” It is a very current part of my life, even now, two years and one day after my father’s death. I realize that physicians are trained to deal with the suffering they see by walking away from it at the end of the day and wiping it out of their minds. I understand that is the only way they can get through their daily work. But they are able to do that because they did not personally suffer. For patients and families, the terrible event may have taken place in the past, but the pain is not confined to the past.

Second, yes, of course I am behind schedule in my dissertation work. Dealing with what happened to my father has delayed the completion of my degree by probably between six months and a year. I have finally gotten over beating myself up over my delayed progress. What happened and how this affected me is not my fault. So instead of telling me that I need to stay on track with my dissertation work, let’s instead think about the decisions that were made by other people that caused this situation.

  • The hospital made the decision to allow this particular physician to work in their emergency room. My family was affected by that decision the evening my mother and father walked in.
  • That physician made the decision to deny transfer for my father to a burn center, despite the repeated requests of the nurses.
  • The hospital CEO made the decision to avoid talking to us about my father (or even acknowledging he was in that hospital) during our first meeting two-and-a-half months after his death.
  • The hospital CEO and his legal council made the decision to tell my mother that Kansas law prevents them from talking about my father’s care with my mother, and that if she wanted to learn anything she would have to get the law changed.

Did anyone think about the real consequences of these decisions? Probably not. But my family and I are living the consequences.

In response to those very poor decision by other people, my family has made some decisions of our own. We are pursuing legislation for mandatory disclosure of harmful medical errors and unanticipated outcomes. I started this blog. And we are advocates for patient safety and patient rights. And as part of that, my mother and I are going to Telluride.

If someone wants to criticize the decision of my family to pursue legislation, then do so. If someone wants to tell me I am wasting my time on this blog, then do so. And if someone wants to point out that spending several days in Telluride is time I am not spending on my dissertation, then do so.

But if you are going to criticize my family for letting the suffering of my father and the way my family was treated disrupt our lives, then save your most severe criticism for the healthcare system that my family encountered.

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