A letter

Don’t tell me about your safety training efforts. Don’t tell me that patient safety is a priority for you. Don’t tell me how many safety organizations you belong to. Don’t tell me about your philosophies or commitments or beliefs.

My father suffered terribly in your hospital. He walked in with severe burns. Fifteen hours later, when he was finally loaded into an ambulance to be taken to a burn center, he was severely dehydrated, he was in renal failure, his heartbeat was unstable, and the base of both his lungs had collapsed. And later he died.

I didn’t need a marketing campaign.

I realize that instead of responding to my family’s questions it was easier to tell me about your safety training efforts. It was easier to tell me that patient safety is a priority for you. It was easier to tell me how many safety organizations you belong to. It was easier to tell me about your philosophies and commitments and beliefs.

But none of that mattered. None. What mattered was what happened to my father that night.

I needed to hear the truth. I needed to hear an acknowledgement of harm. I needed to hear that your organization could be honest with yourselves about what happened. I needed to hear an apology. I needed to hear that you had done a thorough investigation and that you had held yourselves accountable. I needed to hear the changes that had been made in your hospital so that this will never happen again.

And yes, I realize that you had been advised that a state statute “…precludes us from disclosing information with outside parties…”. I hope that my family’s efforts to make disclosure of errors mandatory in the state of Kansas prevents that from ever being used again as an excuse to cut off communication with patients and their families.

When I tell people about that first meeting—when you could not even acknowledge the simple fact that my father was in your hospital—they react with a mixture of disgust and disbelief. That doesn’t even come close to my own feelings. I let them know that since that meeting there has been an acknowledgement that my father was in your hospital, but that is all we have.

I think about what my mother went through: watching my father suffer so terribly that night instead of being transferred, spending eleven days at the burn center not wanting him to die, having an occasional glimpse of hope, but then making the decision to let him go. And then she comes back to a home that will never be the same—and a local hospital that speaks only empty words.

Perhaps we were just supposed to trust you that everything has been looked into, and everything is fine now. But we can’t. We simply can’t. My mother and father walked into your hospital that night trusting that my father would receive appropriate medical care. But he didn’t. Your hospital violated that trust. Why would we trust you now? That night created a huge deficit of trust, and it was your responsibility to earn it back. But you didn’t.

Perhaps we were just supposed to walk away. But we couldn’t. We vowed in the waiting room of the burn center that this would never happen to anyone else again. At that time we thought that this meant we would have a couple conversations with you and that your staff would receive some burn education. And then we could move on with our lives. But this has turned into so much more.

A year ago I never would have predicted that I would be blogging about medical errors and that my family would have a bill on a committee agenda for the next legislative session. I don’t know how this ordeal will end. But I assure you that we will see this through, and we will not be silent.

This is no longer just about my family. This is about all patients. We want the truth. We want honesty. We want transparency. We want hospitals that care about patients and their families. No secrecy. No hiding. No denying.

And now, I ask that you watch this presentation by Leilani Schweitzer describing what happened to her young son, Gabrielle.

 

After he died, the little plastic ID band that was around his tiny wrist should have been slipped onto mine. There was nothing more that could have been done for him, but there was plenty that needed to be done for me. I needed an infusion of truth and compassion. And the nurses and doctors who took care of him, they needed it too. We all should have been given ID bands and become patients that day. Death is a full stop for the patient in the hospital bed, but it is only just a very terrible beginning for the survivors left in the room. Hospitals should extend their care to these people, because the impact of these kind of experiences is slow, painful, and toxic. This is how transparency can help the survivors.

Gabrielle was treated at two different hospitals. He died because of mistakes made at both of them. Accidents that no one wanted to have happen. But how I was treated after he died was no accident. How they responded to those mistakes was very deliberate. Both had the opportunity to learn from my son’s death and be transparent, but only one did. So, though really wish I didn’t, I know both sides of the transparency coin.

The university hospital didn’t hide behind legal maneuvers and dismiss me. They learned, they explained, and they changed the procedures in their hospital to ensure that all of the children who were patients there were safer. Now they encourage me to share my ideas. They seek out my opinions, and they value what I have learned from Gabrielle dying. They give me the opportunity to help people, and that makes his life bigger.

But the local hospital ignored me. By going silent, they didn’t just humiliate me, they denied Gabrielle his dignity. And after eight years, that wound is very far from healing.

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