Guide, witness, caregiver: A pediatric palliative care nurse on helping families weather the worst

Children aren’t supposed to get life-threatening or terminal illnesses. They’re supposed to live full, rich lives. But sometimes the unthinkable happens. Kathy Perko has been helping families through the unthinkable from the time she first started in nursing. Perko is a pediatric nurse practitioner, head of the Bridges Pediatric Palliative Care Program at Doernbecher Children’s Hospital in Portland, Oregon, who has been recognized by Regence BlueCross BlueShield for her work.

A time to listen, a time to ask questions

One night, she found herself on the overnight shift on the pediatric cancer unit. She peeked in on a young patient whose mother was sitting vigil. Perko decided to sit with her. She remembers the conversation. “The mom said, ‘Sometimes I wonder if we’re making all the right decisions.’ But I thought, ‘I’m 23. I don’t have the answer.’ But the answer was likely to just sit down and let her talk.”

Perko has been listening ever since – even becoming a pediatric palliative care specialist. That means she helps young patients and their families face serious illness with tools like counseling, symptom and pain management, spiritual care and help coordinating the often dizzying number of sub-specialists caring for a sick child. The crux of her work is asking the right questions at the right time, and helping families arrive at their own answers.

For instance, when a child has terminal cancer, physicians – and families – may want to exhaust every treatment option, despite serious side effects. It’s understandable: no one wants to let a child die. But, when a child’s quality of life is declining, Perko says sometimes it’s important to step back and ask whether a particular treatment still makes sense.

“It’s not ‘can we do it?’ Because we can,” Perko says. “Medicine is amazing and it saves children’s lives every day. But does it make sense anymore? Because we can almost always do something to somebody. We can add more medicines, we can offer more surgeries. But is it for her? For her comfort? Is it meeting the goals the family has for her? Or are we doing it to her because we can?”

A family’s goal for their terminally ill newborn

Perko reassures families that she’s not there to discourage treatment. She’s there to encourage families to think about what they want for their children – throughout the course of a life-threatening illness, or during the end of a child’s life. “Our goal is to make every day the best day it can be. And that’s the goal for all of us that are walking around on this earth. And so sometimes just getting away from all the politics around it and saying what makes sense for this child and this family on this day,” she says, is what it takes for families to make the best decisions for their child.

Perko remembers working with a family whose unborn daughter was diagnosed, at 20 weeks, with life-threatening birth defects. “And so we met with that family as a palliative care team,” says Perko, to help them develop a birth plan. “We didn’t know with this baby if she would live a few hours, a few days, a few weeks. And so if families are going to have a short time with their infant, we want to think ahead of time about what that time will look like.”

A baby with these kinds of conditions would most likely be taken to the neonatal intensive care unit. But the family understood that kind of care probably wouldn’t lengthen or improve her life. Perko uncovered that what the family wanted was as much time with their daughter as possible. They wanted her to be kept comfortable, but maybe she didn’t have to be in the NICU. They wanted to bring her home.

Perko and her team sent oxygen and medications to the family’s home, to ensure the baby’s comfort. They coordinated with a local hospice provider. And they helped arrange a family portrait – pictures with the parents, sibling and newborn. “They were able to take her home, be there with their community. And they were able to take her to the park in a stroller. She was able to go to church with them,” says Perko. The baby lived for six days and died at home. “They had this time at home. I don’t know if they would have been able to have all that without palliative care. Maybe they would have, but it wouldn’t have been as seamless.”

Having the difficult conversations, earlier

Perko believes that involving palliative care earlier in a child’s illness – regardless of their condition – helps set the stage for the difficult conversations that may lie ahead.

“When you’re older you have an understanding of what death is,” says Perko. “Maybe you can have those conversations a little earlier. But with children and parents you have to show up and get a little credibility going. So I think the conversations we have maybe take two or three meetings before we can actually have some of the conversations I think we want to have.”

In Perko’s work, those are often conversations no parent or child ever wants to have. “It is a sad and unfortunate thing that children die,” says Perko. “But by us showing up and witnessing it with their parents, we might make it a tiny bit better.”