MICHELE NORRIS, host:
From NPR News, this is ALL THINGS CONSIDERED. I'm Michele Norris.
MELISSA BLOCK, host:
And I'm Melissa Block.
Walk into the lobby of the Children's Hospital of Philadelphia and you'll notice it doesn't feel like a hospital - or sound like one.
(Soundbite of xylophone)
BLOCK: Balls bounce and bang inside an audio kinetic sculpture, hitting gongs and xylophone keys. The lobby's open and filled with natural light. Mobiles of stars and planets float overhead. Upstairs, the conversation brings you quickly down to earth.
Unidentified Woman #1: The next patient we have been following continues to be in the intensive care unit with relapse leukemia.
BLOCK: This is the weekly meeting of the hospital's pediatric advanced care team, or PACT. That's a less threatening version of other language, palliative care or end of life care. In other words, they help take care of children who are dying.
Unidentified Man #1: I think we want to try to just help her see what options therapeutically are going to allow him to have the best quality of life for as long as possible.
BLOCK: Every Thursday, the team members crowd into a small conference room to discuss the patients under their care. One of the patients, a 9-year-old girl with cancer, has just died that morning. One of the doctors squeezes his eyes tight as he takes in that news.
Unidentified Woman #1: The siblings and some cousins are coming in, so we're going to go talk with some of them. Although they knew and were, you know, getting ready in some ways, they're going to need some support today.
BLOCK: The palliative care staff knows there's still a taboo around what they do. They joke that they're thought of as the death squad. Their goal is to help parents and children navigate the course of a life threatening disease or chronic condition, and that can mean a lot of things.
The palliative care team might mediate with the primary doctors on the case, urging them to slow down, to give the parents time to think through treatment options. The team might advocate for a child to be allowed to go home, even if it means stopping treatment.
Unidentified Woman #2: If it can be done safely, and they're ready, we can try to get them home, you know, as soon as we can, and it might take -
BLOCK: There are tensions with other doctors in the hospital. Proponents of aggressive therapies, who would never admit they can't fix a child, those doctors consider palliative care tantamount to quitting.
Palliative care might mean frank conversations with families about dying and what that looks like. It might also mean making sure pain is being managed. It could be as basic as scrounging up some extra money for childcare or figuring out a way to bend the rules so a boy's dog can join him at the hospital.
Unidentified Woman #2: Plan B is to bring home here, and home is the dog. I mean, if that's his wish, we're going to have to get that done.
BLOCK: This pediatric palliative care team was started three years ago. It's not unique. More and more hospitals have added palliative care programs for their adult patients, and over time, hospitals have realized that children should be included and have a voice in that care.
This represents a huge change in culture. It recognizes that adding time to life may not be as important as adding quality. That a full press focus on more treatment, more procedures, may not be what a family wants. Dr. David Munson is a neonatologist and a physician on the palliative care team. He worries that the medical capacity to do has outpaced the capacity to choose.
Dr. DAVID MUNSON (Children's Hospital of Philadelphia): I think we are way skewed in that direction, and having a palliative care team really just empowers the medical staff and families to take back some control and say, you know, what are we doing? Have we gone too far? Have we lost sight of the big picture? Is there a good outcome at the end of all of this?
BLOCK: Gina Santucci(ph) remembers the time when the big picture got lost. She's one of the palliative care team's nurse coordinators. Six years ago, she was an intensive care nurse taking care of a 16-year-old boy who was waiting for organ transplant.
Ms. GINA SANTUCCI (Nurse Coordinator): Just watched deteriorate week after week, you know, a month, two months. And what happened for me, I just felt that somehow we abandoned, not the child, but like the family. Not physically, but we could not come to grips that he was dying. And the way we came to grips with it was that we did not talk about it. You know, there's things in your life that make you stop and pivot and say, what am I doing? That's what that case was.
BLOCK: So Gina Santucci left nursing, went to cooking school, chopped and sautéed and sweated in a restaurant kitchen. Then she came back to nursing and to palliative care. All the time now, she'll hear questions from parents about letting their child go.
Ms. SANTUCCI: Parents ask, is that okay, to say it's okay to stop fighting? Or some families will say that God is calling, and is it okay to go? And the best thing that we can do is really listen to families, really listening, quiet listening, and be there often. And not say much. I don't have a lot to say. They have so much more to say than me.
Mr. CHRIS FEUDTNER (Children's Hospital of Philadelphia): I think it is still, for many people, unimaginable to talk about a child dying.
BLOCK: Chris Feudtner is one of the doctors who started this palliative care team.
Dr. FEUDTNER: And part of what we try to do is create a space where it becomes safe to think it so that they can explore, what would that mean if we didn't “do everything?” And I will point out you can never do everything. If I commit a child to a very intensive course of therapy, I can't at the same time have them at home with their siblings or with their family members. That we are always making choices.
And that part of the rhetoric of, I need to keep fighting or we must do everything is really saying, There are certain things that we have just taken off the table and said we're not going to contemplate. And our job is to help families say, we can put it back on the table and contemplate it. It doesn't mean we need to pick it.
We often find by doing that that some families say, I've secretly wanted this back for awhile because I don't feel right about the amount of pain or suffering that our child is going through.
(Soundbite of elevator bell)
BLOCK: Up in the pediatric intensive care unit, there are 45 beds and they're mostly full. These might be children with advanced cancer, severe metabolic disorders, chronic lung, kidney or liver conditions.
For the last three months, one of these rooms has been home to Marcellus Sears, known as Celly. He's seven years old, and he will die if he doesn't get a lung transplant. He was napping when we stopped outside his room.
Ms. LISA SEARS (Marcellus's Mother): He's tuckered out. He had a busy day.
BLOCK: His mother, Lisa Sears, has moved here from Michigan with her younger daughter to be with Celly as he waits for a new set of lungs.
Ms. SEARS: He's my precious little angel. We couldn't see his face when he had the biocap on because it was a mask over his face. So it's nice that now he has a trach. We can see his whole face.
BLOCK: On this day, Lisa Sears meets with the palliative care team to talk over how Celly's doing and how she's doing. Social worker Caroline Long wants to know what's on Celly's mind.
Ms. CAROLINE LONG (Social Worker): Does he like ask tough questions, ever?
Ms. SEARS: He always has.
Ms. LONG: Or is he sort of focused on the goal of a transplant?
Ms. SEARS: No, he always has asked a lot of tough questions. He was asking me, you know, Mom, what is going to happen? And I told him, I said, you know, your lungs are very sick and we just don't know how long it's going to be, Celly. And he says, well, will I go be with Grandma? Because Grandma, he's had, experienced my Grandma passing away from cancer. And I said, it's a possibility. And he said, Well, I'm not ready to go to heaven.
And he was willing to do anything. So then the issue with coming to Philadelphia came around. So then I finally asked him, I said, well, you know, there's an opportunity here where we could go get new lungs that will give you a chance at a life and to live longer. And I asked him if that's what he wanted to do and he said, yes, that he wanted new lungs.
So, I've always been very honest with him, even at his young age of 7. He's quite mature. I mean, I don't know for a little boy, I swear, he's one of the strongest people I know to go through so much and still be loving and affectionate and caring and strong and such a fighter.
BLOCK: Lisa Sears says figuring out the best treatment for Celly has meant trying to set aside her own needs as his mother, as she puts it, to make sure she's not being selfish.
Ms. SEARS: You can do what you want for your child just to prolong their life and send them through so much, and if they don't want it, it's not for their benefit. It's for yours. And I love him so much that if he wanted to go, I would let him. If he wants to stop, we'll stop right here. And he says, you know, that he wants to fight - his words - he wants to fight.
BLOCK: It's hard to imagine a 7-year-old thinking like that.
Ms. SEARS: I know, I know. You should talk to him some time. He's a cute guy.
BLOCK: In the course of this conversation, nurse coordinator Jeannie Carol jumps up to get a box of Kleenex when tears starts to come, and she instinctively reaches out to hold Lisa Sears's hand. She's full of energy and quick with a laugh.
Ms. JEANNIE CAROL (Children's Hospital of Philadelphia): He's so good at knowing what he's going on to engage and what he won't.
Ms. SEARS: Yeah, yeah, he is.
Ms. CAROL: He's very centered in himself. Beautiful.
BLOCK: Later, when I asked Jeannie Carol what the hardest part of his job was, she surprised me. She talked about being frustrated with reimbursement rules that don't make sense and stupid bureaucracy. She didn't mention the pain of watching children die.
Ms. CAROL: There's this thing that I've done for so many years of my career, and it's always just like my mantra, and I say this is not my journey. This is not about me. I'm on a part of the journey with this child and this family, but I don't own that journey.
So I think that that's one way in which I sort of separate out. You know, when you've seen life begin and you see life end, those are two of the most beautiful things. And I feel like we are invited to be guests at a very intimate time in a person's life. And so I honor that and I respect that.
BLOCK: And part of respecting that experience means being mindful of language. Pediatrician Chris Feudtner says, take the term withdrawing care. How could you expect a parent to agree to something phrased like that? Tammy Kong(ph) agrees words have power. She also helped start the palliative care program. She's a pediatric oncologist.
Dr. TAMMY KONG (Children's Hospital of Philadelphia): The motto in cancer treatment and cancer survival has really been fight, right? I mean every sort of slogan you hear is, I want to keep fighting, we need to fight the disease, we need to beat the disease, as if everything is a winnable situation.
And so sometimes as someone treating kids with cancer, I feel like every time I hear that it's a little painful for me sometimes, because then I think of all the patients that as a palliative care team we take care of who feel like they're losing, or that they're giving up or somehow society has a stigma on them for not “fighting to the bitter end.”
BLOCK: As we talked in Tammy Kong's office, I notice a book on the shelf titled Dying Well. It's a notion Dr. Feudtner has trouble with.
Dr. FEUDTNER: I don't want to oversell palliative care. I won't talk about any kind of guarantee of a good death or good dying. Death is a bitch, and dying can take kids in ways that we still are humbled by. I wish I could've done a better job managing their symptoms. As soon as we start to think we've got it all sussed out, and we can provide for a comfortable death or a quality death, I think we have lost sight of the true reality, which is we are not in ultimate control.
What we're trying to do is make sure that all of our choices are really consistent with our deepest desires for what's best for the kid given what they're up against. And then we do the best that we possibly can.
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