Stories of Resistance

These stories tell of acts of resistance within the PICU setting. The action may resist a care plan, an ideology, or a narrative favoured by the healthcare team, the institution, the family, or the general public.

These stories tend to be evenly driven by character and plot, because they tell of the conflict between the story's actors.

An intensivist's story

We had a teenager with cystic fibrosis, diagnosed in infancy, and doing quite well at home—she had never been hospitalized. If you speak to the people who'd been looking after her, the family seemed to be quite in denial of her disease and she didn't come for treatments and didn't do her therapy.

Then she had an abrupt decline in her lung function and was on antibiotics at home and coming in more often for treatment, and then she had to come to the ICU because she got much worse. First she was on non-invasive ventilation and then she got intubated.

Even in my fellowship we didn't intubate patients with cystic fibrosis because we felt they wouldn't make it through the illness. But because this girl had done quite well before, and maybe this was an acute viral or bacterial illness from which she could recover, she was intubated.

She got worse, much worse, so she needed escalating levels of therapy, was on high-frequency ventilation at very high pressures—the maximum the machine could give. The bacteria were resistant to every antibiotic we had; even in the lab it was growing despite every antibiotic that was given, to the point where the infectious disease specialist said, "It's like we're in a pre-antibiotic era. There's nothing we can do to treat this bacteria."

So I took over on a weekend for the call, and then I was on the next week as well. On the Friday morning she'd had a seizure. When my colleague handed her over to me with the family, the discussion was that their child was very sick, that we were pretty much at the maximum that we could do in terms of the ventilator. It had already been decided with the severity of her lung disease that we wouldn't go to ECMO [extracorporeal membrane oxygenation]. We were worried about the seizure. If her body could hold tight and make it through this illness then we were supporting her, but with the lower levels of oxygen in her blood it was possible that her organs might start failing. At that point, unfortunately, there wouldn’t be much more we could do.

In the discussion, we did not say flat out that she would be dying. I don't know exactly how you say it, but unfortunately there wasn't anything we could do other than what we were already doing.

The next day she went into progressive renal failure. She needed quite a bit of inotropic support, I think just because of the high ventilator pressures. On the Sunday she had become anuric, and she was on maximum ventilator pressure and needing medication to keep her blood pressure up, and every day I was meeting the family to try to establish some kind of bond with them and explain that things weren't going the way we'd hoped.

The dad became very obsessed with small details: she had a cuffed endotracheal tube and he was telling me that if we inflated or deflated the cuff a certain amount it would change the flow of air around the tube and maybe she would saturate: that was why she was saturating at 81 instead of 84.

So there I was, facing this on the weekend. I feel like I'm viewed by my colleagues as the one who keeps going when there's no hope, and I was worried. I was worried about what people would say the next day if I put her on dialysis, even though I didn’t think, at that point, with her lungs and heart so sick, I didn’t feel like dialysis was indicated, because I thought she was dying.

She didn't have any indication for dialysis except her potassium started going up, so I started every other medical therapy for potassium going up; I really wanted to delay putting her on dialysis until I could discuss this with my colleagues.

The dad, at 3:00 in the morning, sat me down and told me that, in his understanding of the situation, her lungs were stable, she was saturating at 80% on maximal therapy, the heart was stable, and what would kill her now were her kidneys. He said if I didn’t start dialysis, I was signing a death warrant. He also suggested that I was not a fighter and that I did not believe his daughter deserved to live.

He hit all these things that are in the back of my mind in these kinds of situations. I found that very difficult. I explained to him that there was no indication for dialysis at that moment, but I chickened out of saying, "There won't be dialysis. She’s dying." I just didn't feel equipped for that conversation at that moment.

I really believed she was dying. Now, predicting death is difficult. I did believe that more invasive therapy was inappropriate. At that moment I hope for a more dignified death, and focus on what's more comfortable for this girl: is it to put in more tubes and anticoagulation and the risks of that, or is it to try to gain some kind of sad acceptance that she's dying?

I really thought this was my own insecurities or my lack of experience. I was quite worried about what people might say the next day if I had slapped on dialysis in the middle of the night on a patient who I believed my colleagues would all say is clearly dying.

I was surprised, because the next day she was put on dialysis by consensus of the group. So I didn’t know any more if my thinking was clear or too affected by what I thought my colleagues would think of me in that situation. She went on dialysis just to get her potassium down for the days that she needed it.

On that day, one of my colleagues went with me to talk to the family. I really didn't want to have conversations with the family alone anymore, because I didn't feel like I was helping them or establishing a really good bond, and I was a bit worried that we were going to end up in a constant disagreement over what was happening to their daughter or how sick she was. So we decided with the family on that day to stop her sedation as well, because she had seized the day before, she was on all this sedation, she was in renal failure, and we wanted to see what was going on: was she awake? I mean, just to get more of an idea of how sick she is. And she never, ever woke up.

We stopped her sedation on Monday—and several days later she still had nothing. She was in a deep coma. She had a Glasgow coma of 3, she was totally unresponsive and she was sitting with a saturation of 80 for the whole week. Her kidneys weren't getting better and her blood pressure was slowly getting lower on more and more support, so just about every organ in her body was failing. Yet the family still had hope.

The dad took me aside one day and told me that he was working on some invention, I don’t know what, but if he patented it he would be rich, millions of dollars, and that if we saved his daughter he would be more generous than Bill Gates. This was difficult for me to hear; we don't treat rich people differently than poor people.

Friday, we finally sat down with the family and we explained that her lungs weren't getting better; they were in fact getting worse. Her kidney was not getting better. The brain scan was quite bad, actually, and the neuroimaging showed diffuse changes and grey–white differentiation, and her basal ganglia didn't look good. With these results and her having been in a coma for four days with no medication, there was no sedation left … our recommendation to the family would be to withdraw invasive therapy and try to ensure their daughter's comfort. If she got worse, we wouldn't be escalating the degree of invasive therapy. They looked at the scan and they looked at the imaging. The family seemed to understand. The thing that affected them the most was that she never woke up.

There are a lot of different views in my group. Some people feel we shouldn't put any burden of decision-making on the parents; that it's our role, our responsibility as physicians, to tell them that there's no more hope or just make the decision and be very directive. A child is part of a family and the parents are the ones who've lived with this child and are going to live with themselves. At the same time, I don't want to shirk or shy away from my responsibilities in terms of helping or guiding them.

That evening we had her on medications, and her heart was slowly going down, her blood pressure was slowly going down, and the dad had chosen to go home. The mother called us into the room—my colleague was still there—and she yelled at us that we needed to start more medication because her blood pressure was going down, and ... I said that we wouldn't. She yelled at me, telling me I was cruel....

At that point I didn't know. I was imagining being in court with this mother telling everyone—I don't know, it was ridiculous; it was unbelievable. So I actually did increase the inotropes so the husband could get back. I told her the husband needed to come back and that was it. I never increased anything more, and over the night, over several hours, her heart rate went down and her blood pressure went down and ... and she died. She died on high-frequency ventilation, on three inotropes, in her bed with her parents standing over her holding her hand.

I found that a very sad death because ... I don't know. I would've hoped maybe that she would have been in her parents' arms or something, but with this family, that was how it had to be. When I offered my condolences, the mother said something about how she really shouldn't have died, or I didn't know her or something, and then they left.  So ... that was bad. That was a bad situation. I felt like I never had any kind of bond at all. It was really tricky because, I think, at that point, when you really think a child is dying, and they're probably not suffering because their brain is so affected, then our goal is to help the family through it, and I don't feel like I did.

A nurse's story

I think moral distress is not necessarily associated just with dying children or with futility of care. I think it comes to us also because we work in teams, teams that are somewhat respectful, or sometimes respectful, or not respectful at all. It can be about whose voice gets heard, what language is used. That kind of thing can bring me moral distress as well. 

Nurses are listened to. For instance, on rounds the nurses may put forward their suggestions about a treatment and the physicians will not respond to it. It takes someone with more authority who can say: "Well, you know, the evidence suggests...." But I don't have a randomized clinical control trial in my back hip pocket to prove my point. Sometimes I think that if I had the language I could make a nursing perspective more appreciated. That I don't have this sometimes brings me distress as well.

Other nurses will come to me sometimes to ask me to speak for them. For example, when a patient is in pain, a nurse might come to me and say, "I don't believe the kid's getting enough pain medication. And I've asked and the physician doesn't want to increase the infusion and they think that the bolus doses are adequate. Would you go up and talk to them? Because we know that if you talk to them, we'll get what we need."

It can be distressing how hierarchical PICU can be. I remember once we were doing rounds and there was a very complex congenital cardiac little baby. We were having the discussion about how long we should go on treating in this venue. The parents were not at the bedside, but there was another parent at another child's bedside close by. 

I turned to the physician in charge of rounds and I said, "Could we not talk about this right now?" 

He turned to me and said, "I'm tired of not talking about what's important. If you don't want to be faced with that, then you don't have to be here." 

I said, "That was not my message. I was referring to the time and place, because other family members are around. Could we just move away?" 

I moved away and he was very angry with me for what I'd said. His language was disrespectful. We later had a conversation, not a positive conversation and one that I did not feel resolved the issue. Several other nurses spoke to me about it. That created a lot of distress because they felt that nursing wasn't being respected. But I did get my point across to that physician and we did move the conversation away from the bedside. And I must say that when I said, "No, you and I need to talk about this, but not here," he did follow me. We moved to another bedside where there was no child or parent and we had that conversation. And I will give him his due. A couple days later, he came to me and apologized.