Phantom Stories

These stories do not relate the storyteller's direct involvement or witnessing of the care of a patient. Rather they recall situations that belong to the collective memory and lore of the particular unit.

These stories are significant in that they may influence future treatment decisions. They may also affect the experience of moral distress in the PICU by acting as exemplary "cases" wherein hope had been justified, distress had been resolved, or distress was unavoidable. Hence these stories may belong to a repertoire that PICU staff use to initiate, educate, or caution new team members.

A nurse's story

A couple of us nurses would be in the lunchroom, and one would say, "We haven't seen Alicia for a while. I wonder how she's doing?"

"Don't say her name!"

"Why not?"

"Because every time someone says her name, she comes back in...."

Alicia was a girl of eight or nine with muscular dystrophy. She was severely handicapped as a result, and was in our unit off and on, especially in the wintertime, for respiratory issues. She would come in and be on a ventilator for a week to two weeks and then go home right from ICU, which doesn't usually happen. Usually the kids go from ICU to the regular paediatric wards for a few days and then home. The father had concerns about the level of care on the regular floors, so he would take her straight home from ICU. And the ethics committee agreed with his decision. So she would just come in and be admitted to us, stay with us until 24 hours after extubation, and then go home. 

He was a single guy and he did awesome with her. He had three daughters ... she was the only one who had special needs. He did really well with all three of the girls. 

It got to the point that she would be admitted, intubated for a week or two, then extubated. He would leave. He was starting to leave as soon as 12 hours after extubation. And then, of course, maximum two days later, she's back in to be intubated. It seemed every time somebody said her name, she would come in.

At this point, the doctors didn't want to continue with care. They wanted the father to agree to the next extubation being the last time, that he would agree to palliative care and she would die at home or in hospice. 

Father didn't agree. He got a lawyer. The ethics committee got involved with him, and this went back and forth for a week or two. She was intubated for a long time that time. The ethics committee agreed with the father, but ultimately the dad said: "Well, I'll think about it. I cannot make any decisions now 'cause I'm not in that place right now, but I'll think about it." The physicians had wanted him to straight out agree that he would not bring her back, but he wouldn't. He wouldn't sign the palliative care order either. There was no other paediatric ward in the area that he could go to. He took her home and she hasn't been back since. 

The nurses were really split on this case. We'd talk about it on our breaks, still a little superstitious about saying her name. I was still pretty new to the hospital, and I wasn't sure how I felt about this case. We had her on good pain control, so I don't think she was suffering that much. She had regular suctioning, so we were able to pre-medicate her for it. It wasn't like there was a sudden crisis situation. Once she was in and on the ventilator, she was fine. We gave her lungs a break and she got stronger. But once we took her off the ventilator—that was it.

A nurse's story

"Does he hear me? Can he hear me?"

Her son has attempted suicide. His body is being kept alive in the PICU, on a ventilator, but the suicide attempt did the job on his brain. He was resuscitated, but it was touch and go.

"Yes, I'm sure he's hearing you. I see changes in his blood pressure when you speak to him. But I can't really promise you that he knows what you're saying."

When they saw what he would be facing, this boy who had already found life so hard that he'd tried to end it, the family wanted to talk to the doctors about end-of-life issues. The mother approached the physician. "This isn't what I want for him. This isn't what he would want for himself. I think maybe we should stop."

"Well, you know, maybe if we give him another day or so we'll have a clearer idea of what is to come." 

I stood there, hearing this, and I wanted to say, "What are you doing? This boy is severely brain damaged. He is gone." I didn't say anything, though. I've had experiences with this particular physician before where it didn't matter what I said, he would not hear me. A less experienced nurse might not even have thought to say anything. I had lots of experience—enough to know that it wouldn't be a good idea to question the doctor in front of the family, and enough experience to know the best thing for this child would be to let him go.

The family agreed to wait and see.

"Is he ever going to be able to sit up again?" his mother asked. She stayed focused on the practical issues.

I answered her truthfully. She deserved that. I told her "No, probably not."

"So then he's going to need a wheelchair."

"Oh yes, he's definitely going to need a wheelchair."

I felt so guilty about not speaking up, because I would come back into the unit and see this child and know what was going to come. Sometimes we're invited to offer our opinions, but they are never taken into consideration when it comes down to actually making the choices.

"Will he ever be able to eat again?"

"Hmm. You know, I think he's probably going to need a tube for eating."

"Oh. What about going to the bathroom?"

"Yes, well ... he's not going to know that he needs to go. It's just going to happen."

"Oh."

I could see that this boy was going to exist in a bed somewhere for a very long time and the family would have to go through untold suffering because they couldn't do what they'd like to do for him; they didn't have the tools to do it.

The mother talked to the physician again. I would've liked to give my opinion, but I thought it was important that everyone be on the same page. We try to be that way on our unit, but with this boy we were not there yet.

It is still very much us and them. And I'm really trying to close that gap. We've got to stop looking at it as us and them. We are we and we need to be we. And we need to work towards the same goal, and that's to provide the best outcomes for the patients that we care for. If the best outcome is to die, then that's what we need to provide them.

The doctor reassured the mother again, giving her hope. "Once he stabilizes, we can try something else. We've got all these other things that we haven't done yet."

He didn't tell her that the child they brought to the hospital is not the child they'll be taking home. The child they knew was no more. This was somebody else, somebody who wasn't going to give them the same joy as before. It was going to be completely different. They never got to see that until it was a reality and they didn’t have any further choices.

The physician was giving them a rainbow, and I was shrivelling up inside.

This boy had a history of problems. He was actually supposed to have been under secure supervision when he hanged himself. (At least he'd been in a care facility, and it wasn't his parents who found him.)

We're supposed to save them, but we can't save them all.

The boy's body stabilized over the next hours. When we did withdraw care, when we took him off the ventilator, he breathed on his own. Because he no longer needed intensive care, he was transferred out of our unit. There's not a lot of continuity of care in our facility, and often you don't even get to say goodbye.

To me, saving someone means that when they go home they will interact with their environment. They'll recognize the people who love them, and they'll have some sort of quality to their life, whether it's laughing at TV or enjoying music. But to go into a residential facility where they lie in bed all day and someone comes and does things to them—that is not a quality life.

We had a patient who came in with a spinal cord injury. We all expected this patient would be severely handicapped, but one day I was at rehab and saw the patient wheeling down the hallway in a motorized wheelchair, the mother running chasing it down the hallway. I thought: "Oh! That outcome was ... was so much better than I thought it would be."

Maybe that's how the physician was thinking about this boy. The image of the one who turns out well supersedes the image of the one who doesn't. "Well, we had this other child, very similar to yours. This is what happened...." But they don't talk about the 10 who didn't have that recovery.

I think his viewpoint would be that they still had their child. He was still alive; he was still with them. They still had the opportunity to spend time with him, and that has to matter. And, you know, maybe it does have to matter. But that isn't really what they signed on for, to have their son, this young man, live without connection to his environment. It was not what they wanted for him, but that's what he—they—got.

It's years later now, and we nurses still talk about this boy, that hanging case.

"I wonder how he's doing?" I'll ask.

Somebody will say, "I have a friend who works where he is. He doesn't get any visitors." Not even family. Not the mother. That young man is still breathing, but he has no connection to this world, other than that he's breathing.

And someone else will say, "We did this to them."

That feeling is awful: that we did this to them because we weren't able to interfere with the path that the physician took.