A nurse practitioner’s Brief But Spectacular take on end-of-life care for children

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• Judy Woodruff:

  Pediatric nurse practitioner Deborah Fisher spent the early part of her career working in intensive care units.

  That experience made her feel that more needed to be done to improve end-of-life care for children.

  Fisher now specializes in providing palliative care at Children's National Hospital in Washington, D.C.

  This is her Brief But Spectacular take on an important subject that can be hard to talk about.

• Deborah Fisher:

  There are times that I'm asked what my career is. What do you do for a living? And I have to say that, sometimes, I don't tell them the whole story. I don't give them the specialization. I say, I'm a pediatric nurse practitioner.

  And then, whenever I have told them what my specialty is, even when I worked in oncology, people would say, oh, that must be so sad. And then conversation would stop, and they'd leave, because they didn't know what to ask, and they didn't want to hear it.

  This is really not about death. And that's what everyone seems to assume, that, oh, all children with cancer must be suffering and laying in the bed.

  They might have a bald head, but these children are really living their life, and they're trying to have the best life possible. And we help them to do that.

  I'm a pediatric nurse practitioner, and I have been one for over 21 years. Now I am in pediatric palliative care. I was interested in pediatrics back in nursing school. I really loved being with the kids, and I loved being able to care for them.

  To treat suffering was very important to me. I felt like that could be done better. I also felt like the conversations weren't always clear to these families, and they didn't understand what was happening and what their choices really were.

  Now, for palliative care, you are attending to not just the physical suffering, but you attend to the emotional, the psychological, the spiritual suffering.

  How do we provide that good quality of life for that person who doesn't know how much to be scared? And they don't know how much time they have, and they don't know if they can stay in the hospital, or come home, or if they're going to graduate from high school.

  There's so many unknowns with pediatrics. And you want to be able to provide them with choices and options.

  We know that we want to be able to support families and help children to live at the best and the fullest of their capacity for however long they're going to be with us. I felt like there was a need to improve end-of-life care and how to teach parents and to support them in having honest conversations with their children.

  So much a focus on life, and people don't realize, life continues up through the moment you die. And how you're going to handle that time is very important. When we think about children and being honest with them, we think about, how can I possibly talk them about death and dying? And people are afraid.

  There are fears that they're going to make the child sad or that they will tell the child something they don't want to know, when the fact is that these children already know.

  The 4-year-old that I keep thinking about is a child I took care of many years ago, and we did so many different things, so many different treatments for this child. He kept relapsing, and he was not going to survive. And his mother was having a really hard time with that. And she didn't know what to say to him, and was really finding it difficult for her to even be in the room, because, looking at him, she felt like she was crying.

  And she was afraid she was upsetting him with the crying. And a lot of us, we knew that he was not going to be there long, that he maybe was going to live a couple more days.

  We said, we're really enjoying seeing you, and it's been really fun, and thank you for letting me be your friend and to take care of you all this time. And he would look at us and say: "You know I'm going away on a trip, right? You know I'm going away on a trip?"

  And so he knew he was going somewhere. And he was not scared. And that was the best thing to be able to share with that mom, was to say, he's been telling us this. This is what he's saying, so he knows. He knows what's happening. And he's not scared. He's saying goodbye to us. He's not scared.

  I have witnessed so many beautiful things that I feel like it was such an honor and a privilege to be there with these children in their last moments, and to see them with peace on their face.

  It's not sad to me. We don't have a cure for death and dying and terminal illness. And, in the meantime, we need to be able to do our best there too.And so that's what we're doing in palliative care. It's really about life.

  My name is Deb Fisher, and this was my Brief But Spectacular take on providing palliative care for children.

• Judy Woodruff:

  And it is such an extraordinary gift.

  And you can find all of our Brief But Spectacular segments online at PBS.org/NewsHour/Brief.