Nurse at Children's Hospital Gives Strength to Kids, Families
By Luis Fabregas
TRIBUNE-REVIEW
Sunday, December 2, 2007
The 5-year-old boy just died of leukemia and his parents couldn't muster the strength to leave Children's Hospital. They asked nurse Carol May if she would hold Jake's body while they walked away. May wrapped Jake in a blanket and rocked him. She made him the way he liked it, snug as a bug in a rug, and his parents left. "I could not walk out of that room and leave my son laying on the bed," Jake's mother, Kristi Lannin, said. "We didn't want him put in a bed and wheeled down to do the morgue."
One year later, there are reminders of Jake's life in May's office: a photo of Jake, grinning on his hospital bed the day of his bone marrow transplant, and a pink and yellow sword made of construction paper and decorated with hearts. That she can talk about the little boy she knew as "Captain Carlos" without shedding a tear is part self-preservation, part job description.
At Children's, it is May's job to give patients and families an organized way to deal with all the aspects of a life-threatening illness: the interminable medical tests, the pain, the anxiety and, sometimes, the crushing blow of death.
"I am not the death nurse," said May, 38, even though many of her colleagues get jittery when she's around. "I don't tell parents, 'Let's talk about how your child is going to die.' It's more like, 'What can I do to get you through this?'"
Armed with advanced degrees and hospital street smarts, May keeps tabs on patients whose doctors don't know if they will survive.
Some patients live. Some don't.
May is there for all, like a lion taking care of her cubs. Her mission is as simple as it is heart-breaking: ordering more pain medicine, speeding an X-ray, consulting with a doctor, finding an extra blanket or thinking up an answer when a child asks, "When am I going to die?"
"They're trying to give your child a better life," said Lannin, 30, of Finleyville.
May tells parents what a test means or how long it will take. She tells them it's OK to stop treatment, and helps them understand that one hour at home can be more valuable than two more days hooked to a ventilator.
"I see it as my responsibility to make these kids and their families as comfortable as possible," she said.
Growing trend
In the last five years, pediatric palliative care programs have rapidly grown nationwide as a way to help the more than 300,000 children in the United States who are living with complex medical conditions.
Of those, 50,000 die every year.
The National Association of Children's Hospitals says nearly two out of three of the 200-plus pediatric hospitals in the country have a palliative care program.
Although that's considered progress enough, the field is lagging behind programs for adults, said Dr. Joanne Wolfe, a pediatric oncologist at Dana-Farber Cancer Institute in Boston whose research focuses on palliative care. The reason, Wolfe says, is that some doctors believe offering palliative care could give the impression they're giving up and parents might choose to stop pursuing options for their child. "There's a misunderstanding that if you admit to palliative care, you are suggesting that a child may die," said Wolfe, an assistant professor at HarvardMedicalSchool.
Indeed, palliative care isn't only about preparing for death. It's also about building rapport with families and making them feel at ease, even if for May that means giving them her pager number and making herself available 24/7. It's about offering a dose of humor when there is tension and anxiety. "I know it's boring around here," May told John Chalis, 17, a cancer patient from Freedom, after he worried about waiting three hours for a scan test. "I can put you to work."
When another patient, Andrew Kirsch, told May about his shoulder pain but suddenly lost track of what he was saying, she responded with friendly banter. "Oh my God, dementia is kicking in," she told Andrew, eliciting a laugh. Such an approach works because it allows the patient time to be himself, May said. "If I were all medical, nobody would want to talk to me."
If there are days when the job gets too hard, May doesn't show it. She is always upbeat.
"I often wonder if people think I'm cold or callous because I'm not crying all the time," she said. "But I'd be in a corner pulling out my hair if I don't control myself. I have to help the families. I have to be strong for them."
Answers for families
The palliative care program at Children's Hospital started after lengthy conversations with 14 families whose children died under the care of Children's doctors, either at the hospital or at home.
Spearheaded by the late Dr. Eugene Wiener, the hospital's former medical director, officials found that families facing the death of a child are hungry for information and support.
"We found out the families needed to have someone who was comfortable articulating what this process looked like, could possibly feel like, what their resources were both here (at the hospital) as well as at home," May said.
Since its creation in 2003, the program has grown to serve about 100 families a year.
Many are families of cancer patients. There are children with genetic illnesses, or diseases typically associated with grown-ups such as heart disease and lupus.
"I think I would've had a nervous breakdown if it hadn't been for her," said Karen Rossi of Transfer in MercerCounty, whose son, Clint, died at 16 from a rare form of cancer.
When Clint was sick at the hospital, May visited daily and checked his blood work, X-rays and oxygen level.
Her voice and her touch became familiar to Clint, a straight-A student who liked baseball and soccer. In his last hours July 2, 2006, it was May who helped the family transfer Clint from the intensive care unit to a regular room.
"We don't have this memory of all these tubes and machines in the ICU," Rossi said. "She was not only there when he was alive, she was there when he was gone."
Indeed, May seems to be everywhere at the hospital, walking hastily to patient units like a restless cat. She carries a coupon holder containing names of the patients she's about to visit and copious notes about the drugs they're taking. Some of her colleagues tell her she's the most-paged employee.
"She's incredible," said Dr. Debra Cohen, an oncologist at Children's. "She's always available and she's so compassionate and kind."
May's daily trek around the Oakland hospital sometimes takes her to 15 patient rooms. She's both energetic and soothing, and families say she has a knack to make children feel as if they are the most important patient.
On one of her many visits to Ben Mock, the 10-year-old redhead asked for a roll of tape.
"I need it for a tape ball I'm making," Ben said, motionless underneath his Steelers blanket. May quickly stepped out of the room and produced the tape within minutes.
"It's a way of developing rapport with them at different levels," she said later. "You have to build trust so when you have to have the difficult conversation, they'll be open to it."
That difficult conversation with Ben's mother, Lisa Mock, came a few weeks later.
May stepped into Ben's hospital room and immediately sensed something was wrong.
Ben clutched his blanket up to his chin, and tears welled in his eyes.
"He's in pain all the time," Lisa Mock said, standing a few feet away.
May did her best to appear upbeat.
"You need more white cells, darling," she told the boy with cancer.
May's words were cheerful, but what she saw -- and what she knew about Ben's relentless illness -- triggered questions she'd rather not ask: Had Ben's parents considered their child could die?
"He has full faith he's going to do better," Mock told her a few minutes later in a conference room, managing a faint smile. "We haven't talked about the ifs."
May would take care of that.
The right thing
There is a poignant undercurrent to May's approach and her decision to become a palliative care specialist. She was close to her grandfather, Fred Geisel of Johnstown, and watched him die from lung cancer in 1986 when she was 17.
"He died at home very peacefully," May said. "It just seemed to be the right thing for him."
She realized then that others, including children, should have the opportunity to be at peace when they're facing the last days of their lives.
It is not necessary, experts say, to spend those last days hooked up to machines in a state of futility.
"The goal is that you live until you die, not that you linger in this horrible state where it's agonizing for everybody," said Dr. Reggie Jakacki, a pediatric oncologist at Children's Hospital who serves as medical director of the palliative care program.
Jakacki and May believe palliative care is about quality of life, a philosophy that mirrors guidelines from the American Academy of Pediatrics, which says the goal of palliative programs should be "to optimize the quality of the child's experience rather than hasten death."
Such a philosophy was evident in the care of Jake Lannin, who was diagnosed with leukemia at 11 months. He was in remission until he relapsed at age 4. At one point, Jake and his family spent three months at Children's. Jake just wanted to go home, his mother said. May and Jakacki made it possible, even though he was hooked to countless intravenous lines.
"He was able to play baseball, ride on a lawn mower and do the things that no child in his condition would be able to do," Kristi Lannin said. "That gave him the strength to fight. They gave him confidence and courage."
When Jake died a few days after his fifth birthday, Lannin relied on May, the friend Jake fondly referred to as C.C. It was May who bathed him after Jake died, and it was May who carried him to the morgue. "There's nobody else in that hospital that I would have asked to do that," Lannin said.