Through the Unthinkable
The UT social workers who help the sickest children have one of the hardest jobs in the world.
Toby is finally asleep. Three years old, with a surfer’s tousled mop of dusty blonde curls, he lies on a colorful quilt spread on the floor of his hospital room. As his chest rises and falls slightly with each breath, his brow furrows deep in concentration, as though just staying asleep requires great effort. His hands are squeezed into tight fists.
Toby has a rare genetic disorder that his doctors haven’t been able to diagnose. He suffers from frequent seizures, a serious heart defect, and fluid in his brain, and he’s been in the hospital for more than a week with breathing problems. No one knows what will happen next, but it doesn’t look good.
At the moment, though, the mood in his room is positive. After three days and nights awake, tossing and turning in pain, the fact that Toby is now comfortable enough to doze off feels like a small victory. So, too, does the fact that he’s scheduled to be released from the hospital later in the day.
Toby’s mom, Angela, is sitting on the floor with her son, stroking his forehead. A fan hums on its lowest setting and calm music plays on an iPad in the background. In the corner, a pullout couch is strewn with the detritus of living in a small space: a laptop and power cords, snacks, a tangle of blankets and pillows. “We’re so ready to be going home,” Angela says with a smile.
“Oh, I know you are,” answers Rachel Carnahan. She sits cross-legged on the floor, leaning in close to Toby and Angela. Carnahan, MSW ’09, is 28 but looks younger. With her tortoiseshell glasses, twill pants and button-up shirt, plus the Moleskine journal and pen she carries, she has the bookish air of a graduate student. The badge around her neck says “SW” in large blue letters.
As a social worker on the pediatric palliative team at Dell Children’s Medical Center in Austin, Carnahan spends her days with some of the sickest children in Central Texas. Many of them, like Toby, have diseases so rare that they may never get a diagnosis, and most will die. Carnahan’s job is to help their families get through the darkest days any parent could ever face. She refers them to support groups and other resources, she helps them talk through tough medical decisions, but mostly, she just sits with them and listens.
Today, she’s listening while Angela tells her a piece of good news—Toby’s pulse oximeter, a piece of medical equipment needed to help track his vital signs at home, has been approved by insurance after a long battle to get it covered. “That’s a relief,” Carnahan says. After a pause, she asks, “It’s been a different visit for you guys, hasn’t it? I know we just met last week, but Ann was telling me he’s usually in and out of the hospital pretty quick.”
Angela sighs and nods. “It’s all been a little more challenging this time,” she says. She talks about how instead of his regular doctor, three new specialists have treated Toby on this hospital visit. They’ve been urging Angela to take him home with a C-Pap, a machine that will help him breathe while he sleeps. But the C-Pap is uncomfortable, and Angela isn’t sure it’s the right decision. On top of everything, her brother-in-law is getting married, and she has to miss the wedding to stay home with Toby. “So it’s been hard,” she says.
“It’s so hard,” Carnahan echoes, “but you’re doing the best you can.” Angela nods, and they both stare down at Toby’s face as he stirs in his sleep, rolling onto his back and breathing in with a wet, guttural rasp. After a while, the conversation comes to a natural end, and Carnahan hands Angela her business card. “I’ll work on getting his medical records and some letters from his doctors together so we can get a picture of what went on in this visit,” she promises. “My cell number is on here, so call me absolutely anytime.” As she gets up to leave, Angela is still kneeling on the floor, talking to her son: “Hey, Toby. Hey, little guy.”
The word “palliative” comes from the Latin pallium, meaning “cloak.” A cloak is a fitting image for a model of health care focused on encompassing the whole person, not just their illness. Palliative care is often confused with hospice—a narrower subtype of palliative care focused on the end of life—but increasingly, it isn’t only for people who have a terminal prognosis. The basic idea is that a team of doctors, nurses, and social workers collaborates to alleviate pain and stress. Their top priority is to improve quality of life, whether or not a cure is possible.
On a hot, rainy August morning, UT social work professor and assistant dean Barbara Jones is explaining this to a roomful of doctors and legislators at a health care conference. Jones is a bright-eyed woman who speaks quickly and moves with the smooth, confident gestures of a karate teacher, which she is.
“Palliative care is not about death,” Jones tells them. “It’s more about living. In pediatric palliative care we look for ways to reduce suffering and allow kids and families to live life to the fullest.”
The concept is intuitive: People with chronic, life-threatening illnesses need more than pills and surgeries. They need help navigating insurance and hospital bureaucracies, managing work and school, and processing devastating emotions. Their families need help with all those things, too.
Yet palliative care was not part of the medical mainstream in the United States until the 1970s, and pediatric palliative care is even newer. When Jones started her career as a social worker in the cancer ward of a children’s hospital in the 1990s, there was no academic research on the subject.
“There were no best practices,” she says. “I would find myself at the bedsides of sick kids, at a total loss for what to do. I kept thinking, ‘We could do this better.’” So Jones went back to graduate school and virtually wrote the book on the subject—not to mention dozens of research papers, articles, and guest lectures on several continents. In her classes at UT, she’s trained hundreds of young social workers and other health care professionals, including Rachel Carnahan at Dell Children’s. She tells them never to say the phrase, “There’s nothing more we can do.”
“There’s always something we can do,” Jones says.
Meanwhile, the rest of the medical establishment seems to be catching up. A 2010 study in the New England Journal of Medicine found that lung cancer patients who received palliative care shortly after diagnosis not only had a better quality of life, but also lived longer. The study was a watershed moment, says Abby Rosenberg, a pediatric oncologist at Seattle Children’s Hospital.
“Since then, the field has skyrocketed,” says Rosenberg, who counts Barbara Jones as a mentor. “The concept has been around for a long time, but only now is it really becoming a standard of care.”
It takes an extraordinary person to work with sick and dying children. Many new hires flee the field in search of less emotionally taxing work. The saying is that if you can make it three years, you’ll be a lifer. Carnahan, who first knew she wanted to be a social worker when she saw the TV show Judging Amy, has been in the job for almost exactly that long. As we walk the sunny, brightly colored halls of Dell Children’s, she tells me that it hasn’t been easy.
“Starting out, I was so much sadder than I thought I would be,” Carnahan says. “I would go home and sit in the dark, cancel plans with friends.” It was a rookie mistake, she says, to try to bottle up her grief after building a relationship with a sick child only to watch him suffer or die. Better to embrace the pain and then let it go. Now at the end of a bad day, she puts on a playlist of sad songs and sobs while she drives. “Then when I get home, I turn the music off, take my badge off, and leave it all in the car.”
Katie, age 12, is staring blankly at Cartoon Network, but when Carnahan walks into her room, her eyes light up. “It’s so good to see you,” Carnahan says brightly. She finds a pink stuffed rabbit tucked into the sheets and makes it hop up and down the little girl’s arm. Katie chortles with delight.
In a chair next to the bed, Katie’s mother, Cindy, looks wan. She and Carnahan hug; they’ve known each other for more than two years. Katie has cerebral palsy and mental retardation, and yesterday she started having muscle spasms. “Her legs turned blue,” Cindy says. “I still don’t know why.” In the first panicked hours at the hospital, no one told Cindy that Katie’s hip had been dislocated (it later turned out to be a false alarm). Recounting this for Carnahan, Cindy laughs and cries at the same time. Then she just cries. “I know other families that have it worse than us,” she says, “but I just worry, what if something happens to her?” Carnahan is quiet for a moment. “What other families are going through doesn’t invalidate your experience,” she says. “I want you to work on finding more compassion for yourself.”
For the next half hour, she sits quietly while Cindy opens up about how alone she’s felt. “A lot of my work is just letting families tell their story,” Carnahan explains later. “When a child is first diagnosed, communities rally around the family. Then after months or years pass, at some point a support system gets really tired of talking about a sick kid, and the support wanes. So one of the biggest ways to honor a person’s story is just to hear it.”
Carnahan meets daily with the two doctors and the nurse practitioner who make up the rest of the palliative team. They talk about how each child and their family is doing and what decisions they face. Then Carnahan goes from room to room, visiting with up to 10 families in a day, as well as finding time for phone calls and emails with outpatients. “People think of us as the comfort-only people,” she says, “but we’re not. Equally as often we’re advocating for more medical interventions, if that’s the family’s goal.”
As medical science advances, more children are surviving life-threatening illnesses. More than 80 percent of kids with cancer will survive—a dramatic increase from 50 percent in 1975—and progress is being made with other diseases, too.
That good news brings new challenges, like how to help the increasing number of young adult patients and survivors. Teenagers and young adults have traditionally been shoehorned into either pediatric or adult care. “I was 19 when I was diagnosed,” says Doug Ulman, now CEO of the Livestrong Foundation. “It was hard to rely on other people at a time when I wanted to be more independent. I remember social workers being the only ones who would come into my room and just listen to what I had to say. I’m still grateful for that.”
Livestrong and Barbara Jones have teamed up to build social work and patient-centered health care into the curriculum of UT’s new Dell Medical School, slated to open its doors in fall 2016.
“Social workers have historically been overlooked and underappreciated, and often the first thing cut from a hospital budget.”
Back at Dell Children’s, Carnahan has another visit to make. Six-month-old James is barely visible under the menagerie of stuffed animals filling his crib. An unknown type of leukodystrophy, a group of genetic diseases that break down the nervous system, has weakened his muscles so much that he can’t move his arms or legs and must breathe through a tracheostomy tube. He wears a bib that says “I Love You to the Moon and Back” and has an unusually expressive face. After his mom, Maria, kisses his cheek, they lock eyes and smile at each other.
“As difficult as all this has been, there’s something beautiful about having to slow down,” Maria observes. She’s come straight from her job at an elementary school, and she tells Carnahan that commuting doesn’t bother her anymore.
“I used to get annoyed when someone cut me off in traffic,” she says, “but now I just think, who knows what’s going on their life? Maybe they have a sick kid too.”
Together, they discuss how hard it is not knowing whether James’ latest symptoms are temporary setbacks or new signs of his decline. Maria says, “My fantasy is that maybe he’s not done here yet. That somehow, all the love he’s been given won’t just go away when he’s gone.”
Carnahan answers, “James is teaching us all so much.” After the visit, she stops in the hall to shake her head in awe: “That mom is so articulate, so resilient.” Then she goes on to the next room.
Some names have been changed.
Illustration by Christopher Silas Neal.
Photos from top: Rachel Carnahan, Barbara Jones.
Photos by Anna Donlan.
