Stories Bearing Witness

These stories are of two varieties. There are those told by team members not directly involved in a situation but who witnessed it and feel the need to give an account of it. These stories tend to focus on the actions of an individual. The plot may conclude—a patient dies or is discharged; a conflict is defused—but the issues the story raises remain unresolved.

The second of this kind of story tells of the team's faith and courage, or of the patient and family's safe passage through treatment. These stories tend to focus on the character of more than one person, and on the meeting of moral challenges and achieved resolution or understanding.

A social worker's story

We had a 12-year-old with cerebral palsy who came to us after a left-hemisphere aneurysm. Following surgery, he wasn't waking up at first, and some of the team were questioning, "Well, what are we doing? We feel really bad for this child. Look at what he's already had to deal with, and this is just one more thing. What kind of damage does he have? Is he even going to be able to recover from this? And if he does, what kind of life is he in for?" I kept hearing this, and I didn’t really have a feeling one way or the other.

I invited the mother to sit with me. I said, "You don’t have to share this information with me, but how did he cope through the years? This must have been incredibly challenging. It's tough enough to grow up as a kid, with all of the stresses and all of the challenges that you face, but certainly with the cerebral palsy.... How does he cope with that? How does he manage?" 

She talked about how wonderful this kid was, so happy and optimistic, with tons of friends. He went out for track and was involved in lots of school activities, and never once did he stop to think, "This should be something that’s going to hold me back." She brought in photos and awards he had won at school for being an amazing kid. He wouldn't let his physical disability stop him from engaging in any activities that any other child would get involved in. I was amazed. I thought, "Okay, this is what his family is saying that he would want; I support that."

Your own values and your own emotional reaction impose on what you think should be happening. It's hard to take that step back and consider that the child could survive and do wonderful things. I really felt that I needed to talk with other staff, to try and help them understand a bit more about who this kid was and how he's lived his life. Talking about this child and putting the photos and his plaque up on the wall seemed to really change their perspective.

My advantage is that I don't have such a sense of the hierarchy that I can't talk to this or that person. I don't know if that's just my personality or if that's my role, because it's quite unique within the group: everybody expects me to be able to communicate different things. I'm confident that I can go to the physician and say, "I'm having a really hard time with this. Can you explain it to me?" Sometimes I need to talk to colleagues to get a different perspective.

I've had conversations with physicians before going to a meeting and then heard them in the meeting give a completely different message than I thought we had talked about. Yet they're very much of the impression that that's exactly what we had talked about. You are communicating information, but sometimes it's just about how you communicate—and everybody's a bit different doing that, too, right?

A nurse's story

A child came in and he had a serious brain injury. Grey matter was coming out his nose and ears and so forth.

The family refused to let the child go for an MRI to see whether there was any blood flow to his brain. The physicians felt they couldn’t declare brain death unless they could prove definitively the brain cells were gone, no blood flow. The family resisted for a few days, but they finally agreed.

The MRI confirmed there was no blood flow. After they learned the results, it was really hard on the family to come to the PICU and see what was left of this child who they now knew was brain dead.

It was three days after the results of the MRI before we withdrew care. The nurses really, really struggled with looking after that child once they knew there was no hope. 

But the parents really struggled with it, too. At least they had three days to hold their baby’s hand, and three days to come to terms with death. Some people don’t get three days. Some people have no time at all. In a blink of an eye their child is dead. Why would I want to take those three days away? Looking after that child and his family might not be the best assignment, but I get to go home and see my children and be with my husband. For that family, these are the last few days that they get with their child.

I don't know if it's right or wrong to have children live on longer than what's perceived to be the point where they would have died, but I do know that it's right to treat every patient and every family, no matter who they are, with the utmost respect. It's a privilege to give the best care for their children. When a parent says to you, "Thank God you're here; I can go home and sleep tonight," that’s an honour; they trust you with the most precious little being in their life.

I have struggled because my colleagues don't necessarily feel that way about other people's children.