after the tragedy
When a child died due to a medical mistake, the silence between her father and doctor turned toxic.
Moments after the sudden death of his daughter, John Lewis remembers being ushered into a tiny room with a surgeon, a nurse and an ICU physician who looked unmoved and said very little. Claire had been recovering fine after surgery to remove a pituitary tumour; in that moment Lewis was far too stunned to say much either. But somewhere in the back of his mind the doctor’s manner registered. His silence seemed cold — like he didn’t care that a healthy, happy 11-year-old had just died on his watch.
In the weeks that followed, Lewis dwelt on this encounter. As he worked to pick apart how staff had mismanaged Claire’s fluids so badly, leading to massive brain swelling, he tortured himself with another thought: What if the doctor had also been cavalier in the way he cared for Claire? And should Lewis, himself a nurse, have picked up on this? Could he have stopped his daughter from dying in front of his eyes? Although many people had been involved with the mistake, his rage, at himself and at the attending physician, mounted.
“I was profoundly angry with him,” recalls Lewis, a frail, soft-spoken Burlington native, now retired. “It struck me that he didn’t give a shit. The hate was just dark, really, really dark. It was irrational almost. I didn’t like being like that.”
This case haunts me. It sits in the back of my head and somewhere in my heart.
Sixteen years after Claire’s death, Dr. Andreas Freitag recalls every moment clearly. When he rushed into Claire’s room and saw the brain-dead girl, he remembers wanting to vomit and cry. Despite being an experienced intensivist and director of the ICU, Freitag instantly felt worthless, that he had no business being a doctor. But he pulled himself together and walked into the tiny exam room to face the family. Freitag had 16 other patients that day, including one who was crashing on the other side of the ICU. He had been trained to remain calm and stoic in such situations. A stiff upper lip was needed to stay strong for the nurses, residents and family members.
Freitag, speaking publicly about the case for the first time, remembers not saying much in the room with John Lewis.
“I didn’t show any emotion at the time,” he says. “I had to maintain my composure. I had to compartmentalize. I was trying to focus on the other patients on the unit. I had to deal with this, but at the same time I’ve got someone else on the other end fighting for their life and I’ve got to manage that.
“I wanted to say, ‘I don’t know the purpose of why Claire had to die today, but she’s gone to a better place.’ I well up sometimes. There are times when you start to cry with the family, you say ‘I’m so, so sorry.’ You don’t understand the sense of it. You don’t understand how something as tragic as this could occur.”
Looking back, those are the words Freitag wishes he’d said to the Lewis family. But in the shock and crisis of the moment, he was in a different space. He remembers what followed as the most bitter, hostile experience he’s ever had in his 30-year medical career.
John Lewis with Claire, aged 11.
Melting the Hate
Both men were determined that something positive should come out of Claire’s death. Lewis pored through records to pinpoint systemic problems that had led to the cascade of mistakes, and he demanded change from the hospital administration. Unknown to him, Freitag had been pushing for similar changes for several years, and was now quietly working behind the scenes to raise $10 million for a dedicated Paediatric ICU.
Lewis met with the nurse and resident directly in charge of Claire’s care. They cried and hugged each other, and both caregivers got the chance to say how sorry they were. The resident, who came from overseas and returned to his country soon afterwards, wept as he talked about his own children; Lewis was reassured that his mistakes had not been for a lack of caring. The meeting helped “immensely,” says Lewis. “In some small way I felt that I was somehow responsible. The apology helped me to forgive myself.”
Freitag also offered the family a heartfelt apology during a meeting with hospital administrators. But Lewis had become increasingly angry because he felt that Freitag should have reached out for a one-on-one meeting with him. It seemed like further evidence that the man in charge didn’t care.
“I think parents want to hear that apology,” he says. “I think that apology helps melt the hate, melt the anger. It’s a powerful process. But they do become very human, and I think that’s hard on them, to have to show their own humanity. It makes them vulnerable.”
Around this time, Lewis had started sending threatening emails to the hospital about Freitag, and nobody, himself included, thought it was a good idea for the two men to meet. “I’m totally non-violent by nature,” says Lewis. But “I was so angry, he might have been a little worried.”
For his part, Freitag knew Lewis hated and blamed him, but felt helpless to do anything about it. He would have preferred to be screamed at and physically attacked than to live with the silence, but meeting wasn’t an option. “I was advised, ‘Do not meet with the family,’” he says. “‘Don’t email them. Don’t send a letter. Don’t pick up the phone. It’s out of bounds. We’re representing you now.’ But that’s not me.”
It was only after one of Lewis’s emails contained a threat toward Freitag that hospital officials thought to check in with him, Freitag recalls. But he says other than that brief conversation, he was not offered any emotional support for the post-traumatic stress that he, and several nurses, suffered. At the time, he was being dragged through endless reviews; although CPSO found no fault with his management, the process felt punitive. And for the first time in his career, he experienced a family member’s behaviour as vengeful.
Freitag maintained his silence toward Lewis, but privately he was ruminating constantly about what had gone wrong and what should have been done differently. As the senior staff member in the ICU he couldn’t confide in anybody on his unit. He remembers crying and asking his wife to tell him he wasn’t a bad person. He wrote a letter to Lewis but didn’t send it. He considered showing up at his doorstep and asking if they could talk without lawyers. He knew exactly what he would say: “Can’t we just go for coffee and talk? Not because I’m afraid I’m going to be sued. I just want to talk to you like a person, like a human being, to say we’re not bad people. Nobody’s trying to cover this up.”
The two men had hardly exchanged any words during that first encounter, and aside from a few brief meetings with hospital officials around a crowded table, they never met again. After a flurry of news articles and a lot of negotiation with hospital brass, the case was settled outside of court.
In one way, the tragedy of Claire’s death had a positive ending: The hospital worked with Lewis to make improvements to prevent other children from dying in the same way. Lewis co-wrote a book, Beware the Grieving Warrior: A Child’s Preventable Death, A Struggle for Truth, Healing and Change. He and his wife focused on helping their other daughter, who was 13 at the time, with the loss. After a few years, for the sake of his own sanity, he let go of his anger at Freitag. “You’ve got to move on. You can’t live in that space,” Lewis says. “It was kind of selfish forgiveness.” Around that time, the hospital administration agreed to pass along a message from Freitag asking Lewis for a meeting, but Lewis was no longer interested: “I was tired, and I didn’t see the point.”
Today, Claire would be 26. Lewis imagines she might have purple or green hair because of her artistic streak. “She’d probably be doing something creative, an artist or musician,” he says. “I tell my other daughter, when she gets upset about Claire, ‘It’s part of the tapestry of your life.’ It doesn’t have to sit front and centre. You don’t forget the person, but you can get past the wreckage.”
As a physician, Freitag never got any closure, and he struggled to figure out how to live with Claire’s death. “Everybody seemed satisfied from a legal perspective, but there was all this other stuff left on the table,” he says. “There was no place to go from an emotional and ethical perspective.”
It’s at this point experts say a doctor could be in grave danger of burnout, depression or substance abuse. Some feel that unresolved medical mistakes are a major reason for the epidemic of physician burnout currently sweeping the profession.
I just want to talk to you like a person, like a human being.
In fact, the tragedy did have significant effects on Freitag’s career because the following year he decided to stop providing critical care to children (he continues to serve as director of the Paediatric ICU, and to treat kids and adults as a respirologist). His marriage broke up, but he was lucky enough to have a close group of childhood friends who helped him through the tough times. He noticed that the constructive change resulting from Claire’s death seemed to have created a healthier climate toward mistakes and apologies at his hospital.
Freitag remarried, to a nurse who had done a lot of palliative care and had an excellent manner with patients. She helped him let go of the stiff upper lip, and learn how to reveal his own vulnerability to patients.
These days, when he talks to families about death, “the residents look at me and say ‘This guy is pretty emotional about this’; they look at me in shock,” says Freitag. “They’re going ‘You seem so tough.’ But facial expressions don’t tell you what’s underneath the skin. [Claire’s death] allowed me to be more forthright and to talk about these things.” Now he sees his past stoicism as false bravado, and freely acknowledges the impact the tragedy has had on his life.
“This case haunts me. It sits in the back of my head and somewhere in my heart,” he says. “But for me, Claire’s death was not in vain. We really did work to change the system, and have made it a better place. We really do care, and strive for excellence.” ■