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2.10.1: What Life May Offer to and Ask of Us in the Middle of Real Loss - End-of-life care with Kids

End of life care with children...

Things to Notice: To illustrate to the “many beautiful things” experienced in her years working with kids re end-of-life care pediatric Nurse Deborah Fisher tells a story. She points us to: The kids are really living their lives to the end. They are glad to be with others who enjoy being with them. In their own way they know they are “going away” and they are not scared. Parents who are already grieving do well to tune into how alive their child is right now. How their child already knows. It’s not about keeping knowledge from them… it’s not about keeping them from passing…What’s on offer is being genuinely alive and present with them now. They can be at peace when they die.

A nurse practitioner's take on end-of-life care for children

Transcript: "When I tell people what my specialization is, even when I worked in oncology [where we were trying to save heal kids with cancer], people would say: “Oh, that must be so sad.” - And then the conversation would stop and they’d leave, because they didn’t know what to ask, they did not 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 in pediatric palliative care.… I really love being with the kids, and I love being able to care for them. To treat suffering was very important to me. I felt like it 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.… For palliative care, you’re attending not just to the physical suffering, but you attend to the emotional, psychological, 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 are so many unknowns with pediatrics.

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 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 to support them and having honest conversations with their children. [There is] so much 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 to them about death and dying? And people are afraid. -- They fear 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.

A four-year-old that I keep thinking about was a child I took care of many years ago… We did so many different treatments for this child. He kept relapsing, he was not going to survive. And his mother was having a really hard time with that. She didn’t know what to say to him. I was really finding that it was difficult for her to even be in the room… Looking at him … she felt like… crying. And she was afraid she was upsetting him with the crying...

A lot of us… knew that he was not going to be there long, that he… was going to live a couple more days.

We said [to him]: We really enjoyed seeing you, and it’s been really fun, and thank you for letting me be your friend 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?” So, he knew he was going somewhere. And he was not scared.

And that was the best thing to be able to share with mom, was to say, “You know, he’s been telling us [about going away] … He knows what’s happening… He is 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 faces. 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… So that’s what we’re doing… Palliative care, it’s really about life." [End of video]

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