Stories of Collusion

These are stories told by health professionals who feel they have taken part in actions contrary to their own values. The storyteller provides more back story contextualizing his or her relationship to the situation. These stories tend to be less linear than the others.

Moral Distress - A Dietician's Story (Digital Story by Matthew Green) 

A dietician's story

"How much did she weigh today?"

These parents asked me this every day. It was as if everything would be okay if their child kept growing, if in that one way she could be normal. She was deaf, blind, and didn’t have enough brain function to vomit. She was so severely brain damaged that she couldn't even swallow.  

I'm not really clear now what caused the brain damage, or all the details of the different medical conditions, but this child had been in the unit for weeks, kept alive through tube feeding and a ventilator. Weeks were stretching into months, and despite all the challenges this child faced, the parents wanted me to weigh her every day and keep adjusting the nutrition to make sure her progress was following the expected curve for a child her age.

As a dietitian I don't have to spend a lot of time in the intensive care unit itself. I assess, write orders related to feeding, monitor weight gain and tolerance, and make sure nutritional needs are met. But I'm part of the team, and when you have these young children—infants, really—that's what parents want to know from me: Is my child normal?

Quality of life was seen by the team to be an issue because most of us were concerned that this baby was suffering, although the baby had such little brain function that she may not have been able to experience suffering. But the parents did not see it that way and felt that a miracle was going to happen.

"She’s gaining weight, right? You weighed her today?"

They believed their baby was going to wake up and see and hear and take a bottle.

I hadn't been aiming for weight gain. I don't mean that we were withdrawing nutrition. We've never in our unit withdrawn nutrition; at least not since I've been here. I was making sure the fluid levels were up and appropriate nutrition was being maintained, but I didn't see the point of that level of monitoring. It was always a struggle for me to try to figure out whether I should even be weighing this baby: is that really even appropriate?

The rest of the team was trying to figure out what to do, what the options were for this baby. Nothing seemed to be happening. The baby was there, the parents were waiting for the miracle, and they wanted to be sure their baby was showing healthy weight gain.

I was never really sure what I was supposed to be doing. I don’t think the team knew either, and that's why there wasn't really any kind of direction on what to do. I was torn between trying to keep the parents happy and make sure the baby was gaining appropriate weight each day, and my own feeling that probably that wasn’t at all appropriate.

I have never disagreed with the team's decision. Usually the situations I can think of are where the team and the family disagree, and I agree with the team.

Certainly everyone felt we should continue to feed her. The question I had was whether I should be monitoring long-term. Normally I would be measuring head circumference, length, weight, and adjusting the feeds for appropriate caloric intake.

In the end I ended up weighing the baby and putting her on higher-calorie feeds and getting her to gain weight, because it seemed to me like it was a situation that wasn't ending. I wasn't really clear what I should do. I mean, I didn't want to ... I was really struggling with what to do, and no one was really providing any direction for that, so....

"You weighed her? And it's good?"

I switched because of the parents' request. I couldn't justify not monitoring weight if it was going to be a few months, even though I didn't feel it should be another few months before the situation was resolved.

So I was actively trying to get the baby to grow and gain normal baby weight—which wasn't what I felt I should be doing.

I know that some physicians were quite frustrated, and one of the problems was that the staff would change every week; the staff physician would change and what we would do would change a little bit too. As time went on, the team was prepared to choose a different approach. Pharmacists, residents, staff doctors—they were clear with each other and with the parents that the time had come to discontinue everything, including fluids and feeds.

Normally this happens and quite often the family agrees, and that's fine. I withhold nutrition and everything goes on. The question is: What do you do when the family doesn't agree?

The parents had very strong religious views; they believed in a miracle. They had very strong beliefs that God would save their baby and everything would be fine.

I'm trying not to be judgmental. The team feels that there's not going to be any miracle, but the parents clearly do. I would've liked to have seen the treatment stopped earlier so the parents could have taken their baby home and had a peaceful death there.

So while the physicians were trying to convince the parents and the parents were trying to convince the physicians, no-one had any clear direction for what I was supposed to do. They'd talk about whether they should give chest compressions and that kind of thing, but not about feeding. I kept changing my mind, as a matter of fact, as to what I should be doing. At the same time I was very happy about the fact that technically I didn't have to make any kind of real decisions in this.

Whether I changed the feeds and made it a nice chubby baby really did not affect the outcome. I didn't think it was appropriate to be making sure she was growing along her curve, but if she did it wasn't going to change anything one way or the other. You can convince yourself that it doesn't really matter.

In the end it went to court and the court ruled the baby was suffering, and they withdrew care and the baby did pass away.

This was the first time I'd seen it get to the point where no-one agreed and the child was shipped out for someone else to deal with. Earlier on I would have expected that some consensus would have been made.

The case was discussed at ethics rounds. I attended but I didn't bring up the feeding issue because it seemed like a small one compared with the issue of whether we should withdraw. And the ethics rounds were helpful, having a place where the issues can be discussed. They're once a month and all the seats are full.

We have regular rounds with 10 to 15 people, and the physician goes through the case and then he says, "Does anyone disagree with what I'm saying?" You would feel quite uncomfortable if you sided with the parents, because the way it would always be discussed is that the "parents were ridiculous." Anyone who felt that we should not withdraw care would not feel comfortable saying anything, quite honestly. We have this culture that assumes no-one would want to take home a severely disabled child, because we just assume everyone thinks the same way we do ... and who knows that everyone does? Our social worker has to bring this up a lot.

But I know from hearing the nurses and the pharmacists and everyone—people gossip about these things in the break room for stress relief, whether they should or not—that a lot of the non-medical staff feel that a lot of what we do is wrong, but no-one ever asks their opinions. Nurses are not asked; dietitians, pharmacists are never asked. So you hear people saying, "I can’t believe they're still ... the parents won't agree," or, "I can't believe we're still doing this." That's not going to change, because obviously you can't have the entire team involved in these decisions talking with the parents. I think a lot of people feel they're not involved in the decision but they're forced to carry out decisions made by others. I can see why they exclude a dietitian, but I think nurses are a different story....

I can actually physically leave the child's room if I'm being bothered. I'm not stuck at the bedside. Technically, I can see that patient without really seeing her: everything is charted on the computer. So I think one way I'm actually able to cope better is to step out, see a different patient, go out of the unit. I think of bedside nurses stuck there, having to deal with that for their 12-hour shift....

I can't speak for all the members—but many of the allied health, like physio, pharmacists, et cetera, are often able to cope better because they can step away from it if they want to. We have much more freedom in terms of "I'm not stuck at that bedside; I can make recommendations and then walk away."

As for my coping mechanisms, I run home from work. I can run it out. After work, at night, I might think about it once and then usually it doesn't affect me as much. I take the stress off myself and say, "I'm not making the decision, so...."

A child dying makes me sad, but it doesn't affect me as much as seeing the parents grieving. As a dietitian, you don't always see that. I'm not usually in the room in the last few moments. I don't counsel the parents. When there have been nights where I've thought about patients over and over, it's when I've seen grieving—like screaming or crying in the hall. If I don't see that, I'm much better.

An intensivist's story

A lot of people can be involved in a complex case. We had a multidisciplinary case meeting and I counted 23 people in the room. This time it was a teenager who had been having school behaviour problems. It turned out he had an undiagnosed disease affecting one of his organs, and somehow this had been missed in tests done a year earlier.

The child was incredibly ill and a transplant was indicated. I remember the discussion we had the day of the transplant: did we actually think the operation could be survived, and was it ethically appropriate to take an organ that could be given to someone with a better chance of survival? We went ahead with the transplant.

There have been numerous complications and therapies to match, some of them breaking new ground for us. The teen ended up tracheotomized, paralyzed, dialyzed and needing another transplant. In the case meeting you heard things like, "Oh, what did we create by putting this patient on this therapy? Yeah, the child is alive, but...."

Another time, I wanted some pictures about some very specific technical things related to tracheostomy. I got on this American website, and it's people’s stories, and it's full of: "The doctor said my child was going to die, and she didn’t die and here she is now…" and she's this kid with multiple issues and just in passing has tracheostomy and maybe chronic problems. The adversarial relationships and the confrontations that are described: "I had to push and fight, but we've made it." It's very sad. Maybe some of these kids are happy, productive, lovely children that make their families very happy and are going to have wonderful lives, but some of it is stretching the limits of what can be done just to prove a point.

When I was a resident doing a rotation in the rehab facility, the developmental paediatrician said the question to ask the parents was, "Does your child get invited to birthday parties?" I was impressed by that. Of course, the question is not just whether the child is invited, but how actively do they participate?

And the alternative is to let the child die. I really don't view what I do as playing God. Sometimes what I'm doing is I'm preventing God from playing God. There is uncertainty even when you have decided to withdraw.

Even when you are extubating someone who is brain dead, has no brainstem function, cannot breathe, so you know they're going to become hypoxic and their heart is going to stop, I always say, "There are so many things that I can control, but the one thing over which I have absolutely no control is the timing of death. Your child is going to die. Your child's brain is dead, their body is going to stop. All the organs are going to stop functioning, but I don't know exactly when. I can estimate, but I don't know. I don't control that; you don't control that. It's going to happen, and we'll make sure it happens in such a way that it's as free of pain as can be for you given that I don't think your child is feeling any pain anymore, but I can't control that." Ultimately, if we're making life-and-death decisions together, I don't know exactly when that final moment will take place.