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'You took the decision away from us'

Posted Jan 18 2012 10:34am

Tim and Gina Gort of Grand Rapids, Mich. have three children. Gwen, 9 (photo bottom), and Eliza, 1, have cerebral palsy, while Violet, 3 (photo top), does not. Tim commented on our blog about medical errors . His family has experienced two crushing mistakes. The first occurred when Eliza was given a blood exchange transfusion to treat jaundice as a newborn in February 2010 and sustained a brain injury because of air in the line. The second error occurred just 10 months later, when Gwen was accidentally given five times the dose of diazepam (valium) when in the hospital for a spinal-fusion surgery, which complicated her breathing problems and resulted in the need for a tracheostomy. I asked Tim about the impact of this second error and how hospital staff responded.

BLOOM: What error occurred in Gwen's care?

Tim Gort: It was an admitting error. When she was admitted for her spinal-fusion surgery, they asked what drugs she got at home. We told them she got valium (to relieve her high tone) but they input the wrong concentration. They thought they were giving her what she gets at home but they were giving her an adult dose. After her surgery she was having respiratory problems. They did a sleep study and said she was obstructing equally during the day and night and the only thing to fix it was a tracheostomy. So they put in the trach and the next day I was speaking with her physical therapist who asked about what she took for tone management. I told her Gwen's home dose of valium and then double-checked with our nurse. The nurse told me 'No, she's on five times that here.' I asked the nurse why and her eyes got large and she said: 'Oh my gosh I'm going to check into this.' But I think because we were in the intensive care unit it wasn't seen as a big deal that a kid would be getting a large dose. No one came and said anything. The next morning I confronted the doctor and residents on rounds. I said 'I question the results of the sleep study now because of this.' The doctor said: 'I agree. I would question those study results too.' There was an affirmation of what I was pinpointing, but no accountability for what happened.

BLOOM: What did you do?

Tim Gort: I called the risk management person and tried to set up a meeting to find out what happened. The odd thing was that this person asked me 'Who do you want to be there?' It was like it was my responsibility, as a parent, to figure out who needs to be there. At the first meeting they said there would be an investigation and we would have a meeting in five to six weeks to discover what had been learned.

BLOOM: Was there an apology for the medication error?

Tim Gort: Yes, in that first meeting there was. And we received another apology after they went through their discovery process. The head of safety apologized to us and said 'I'm really sorry for what your family's gone through.' But they never admitted that the valium dosage had caused the respiratory problems that led to the trach. We said in our very first meeting isn't it possible that the valium dosage, combined with the spinal-fusion surgery, pushed her over the edge? And the ENT said 'Yes, that is completely feasible.' But none of the facts were ever clear. We went into this meeting and professionals were still scribbling down their notes. I asked the manager of patient safety to send me a list of the things they would work on to prevent that error from happening again. They shared six things and I can tell you that one was in place when we were back at the hospital for a procedure with Eliza in January. That was a verification of home medications before (and after) she was even admitted.

BLOOM: What was the impact of the error on Gwen's and your family's life?

Tim Gort: It was dramatic. It created a lot of distrust in medicine. The caregiving part of it was the most stressful – the trach comes with so much responsibility and we had to go through seven days of intense training where they put the fear of God in us if the trach ever came out. It also added another layer of pressure on our family because when Gwen came home with the trach, she qualified for nursing care. That put an additional person in our house. Even though that's not supposed to be stressful, it was. We didn't sleep well for a long time. Not to mention Gwen's sleep cycle, which was screwed up because she was in the hospital for 40 days.

BLOOM: Do you still use that hospital?

Tim Gort: We went there for one more procedure with Eliza. But the people there figured out who we were – that we were the parents of both of these children who had been harmed by errors there. They were nervous and we were nervous. It almost created a setting that was prone for more errors. After that we decided we are not going back there. Now we drive to a children's hospital about two hours away.

BLOOM: What did the hospital do right in your case?

Tim Gort: Not much. I think the silence is deafening. There's an attitude of 'the error happened, let's not talk about it and move on.' The hospital did a couple of things right. There was a gap in nursing care when we went home, so they paid for Gwen's nursing for two weeks. And they paid for a video monitor because of how far Gwen's room was from our room. Because we could no longer hear her cry, we needed to be able to see if she was in discomfort. But those things were kind of obligatory. A lot of the stuff was lip service. They also e-mailed us the things they were working on to prevent this from happening again. We did get asked by the manager of patient safety if we would share our story with residents and interns, but it didn't feel sincere. It felt too close to the incident. If they had asked us further down the road, after giving us full answers and treating us respectfully, it might have been different.

BLOOM: What would you want the hospital to do in the future?

Tim Gort: I don't have a magic answer to that. Open, consistent communication unfiltered by attorneys is what families want. Sitting down not just once but multiple times. Having the president and CEO, who is ultimately responsible for something like this, at the table, because the culture will never change if it's not top down. Having the president or someone in senior admin send me a letter or call me, saying 'You know what, this is unacceptable and we're going to fix this.' I think medical error is often not addressed when the patient doesn't die. For science, the ultimate failure is to have the patient die. But if the patient doesn't die, there isn't the same view. In Gwen's case it was like 'Oh, she's got a trach, she's breathing, so what? She was going to need it eventually anyway.' What the doctors don't see is how severely affected the person's quality of life is. What my wife Gina said was: 'We're not saying she's not a candidate in the future for a trach. But you robbed us of who knows how many years without it. You took the decision away from us.' I feel like there was a point in time where if we had been embraced and coddled and massaged a little, it could have resulted in a huge benefit for the hospital's learning – to learn from caregivers and to realize what it's like to be on the other side of this. They really missed out on an opportunity to educate staff.

BLOOM: What advice would you give other parents who have experienced a medical error?

Tim Gort: I would suggest having a third party to help you make sense of the situation and navigate the hospital. The challenge I found is that advocates work either for the institution or the insurance company. No one will really pay for a third-party to come in, but you could ask a friend or family member to be present. You need to be well informed and demand transparency. The challenge is that we as humans don't want to accept that things are random. There is a grieving process because as a parent you make the best informed decision you can, because you want the best outcome, and I feel confident that the medical professionals want the best outcome. And when that outcome is something no one expects, it's hard to accept. I've gone down that road of asking ‘What could we have done differently?’ and there's not a thing we could have done to change that outcome. Once you've accepted what happened, you have to figure out how you can create change to prevent it from happening again. We realized quickly that in our case we weren't going to change the institution because the people weren't open to us helping them change. We had a social worker who recommended we turn them into the patient safety board but that wasn't something we could do at that time. We were very vulnerable.

BLOOM: How is Gwen today?

Tim Gort: Her trach came out before Christmas and her life is much better. We don't believe she ever really needed it. It was definitely put in under what was created to be an emergency situation, which never really was. Over the last year we've been working toward getting rid of it – doing trials when we capped it. We worked with an ENT who said she should be able to breathe without it. Then one morning on the bus Gwen pulled her trach out and the nurse didn't see it and by the time they got to school, the stoma had closed up. So Gwen basically took matters into her own hands.

BLOOM: What would have happened if you hadn't asked questions?

Tim Gort: We never would have known. We did learn that the pharmacy intern had questioned the dose and brought it up with whoever his or her superior was, but that person didn't follow up. The hospital was switching over to electronic note taking. They had a team working on a system to double check the electronic notes with a paper trail, but they hadn't implemented it yet. They knew that there were holes in transferring over to this electronic system prior to our error.

A Dad's View is an organization Tim created to better educate medical professionals and students about patient safety and to advocate for families of children with special needs. He is the author of The Gort Family blog and a healthcare advice columnist for the Grand Rapids Press.

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