How pediatrician helps children at the end of their lives

CHARLESTON, S.C. (AP) - Has anyone talked to you about her latest brain scan?

Jillian and Steve Williams were desperate for good news when they sat down in a small room full of medical specialists to talk about their baby girl.

Three-month-old Charlotte was born nine weeks early and slept nearby in the intensive care nursery. She’d spent her whole life in hospitals and on the highways between them. A hospital in Myrtle Beach, another in Florence, a third in Charleston.

A meningitis infection racked Charlotte’s small body. Five silicone tubes stuck out of her scalp like long spaghetti noodles to drain the excess fluid inside her head. She’d already survived five brain surgeries and more seizures than her parents could count.

Along the way, Jillian and Steve tracked their daughter’s every setback, making the four-hour round-trip drive from their home in Horry County several times a week. They kept careful notes. They learned the complicated language and the acronyms that hospital staff used. And they met with Charlotte’s team at the Medical University of South Carolina every day. All that time, they trudged toward the goal of getting their girl home.

Not if, but when.

Now, this nightmare: Has anyone talked to you about her latest brain scan?

“No,” Jillian said. “No.”

That’s when Dr. Dorothea Jenkins, a neonatal brain injury expert, showed Charlotte’s parents a 3-D model of a healthy baby’s brain. The mood in the room felt subdued that morning. Something seemed different.

Jenkins pointed to the occipital lobe, near the brainstem. This is where vision comes from, she explained.

But on Charlotte’s brain scan, the occipital lobe was damaged. Her vision was gone.

“OK. Our daughter is going to be blind,” Steve said. “We can handle that. No problem.”

Back to the healthy brain. This is where speech comes from, Jenkins said.

But on Charlotte’s scan, that part was gone, too.

“Gone. Fine. She’ll be blind. She won’t be able to talk. We can handle it,” Steve said. “We’ll get through it.”

Last, motor skills.

Also gone.

“Does she have any quality of life?” Steve said.

No, the doctor said.

Jillian and Steve started sobbing. Everyone else in the room was crying, too. They all knew they’d reached the end. The beginning of it, at least.

In their fog of grief, one of the specialists led Charlotte’s parents to a small, private space near the neonatal nursery on the eighth floor of the children’s hospital. It was dimly lit, furnished with a few chairs, stocked with tissues. It’s known as the Grieving Room.

Jillian and Steve waited for a tall, lanky pediatrician named Conrad Williams to join them. They’d never met this young doctor, a stranger who shared their last name. He was relatively new to the hospital, the one who would shepherd them through their daughter’s death.

“We heard you were coming,” Steve told Williams as he walked through the door. “We just don’t know what to do.”

Conrad Williams didn’t look much like a doctor. At least Jillian didn’t think so.

No lab coat, no stethoscope. They hang in his office, rarely used, next to a few pictures of his favorite patients and his framed diplomas. Williams studied history in college and didn’t much like medical school. At first sight, with his dark hair and eyeglasses, he resembles Harry Potter, if Harry Potter had grown up and become a doctor.

He dresses casually for work - chinos, checked shirts - and in his back pocket is almost always a sheet of white paper, folded longways, with a list of patients he’ll see that day. There may be more than two dozen names on that list, mostly babies, some of them nearing the end of their short lives.

Williams is one of few physicians in the United States who specialize in end-of-life care for children.

Most days, he walks the hospital hallways making sure his patients are comfortable. He talks to children in their beds and to babies in their bassinets. He talks to their families, too, and introduces himself as Conrad, but doesn’t make much chitchat.

His wife says he’s “more on the introverted side.”

Williams grew up in New Orleans but bears no accent. His voice is deep. He asks families how his team might be helpful. He listens.

And when the time comes - if the time comes - he’s often the one who explains to parents what to expect when their children are taken off life support, what happens when their babies begin to die, how their hands and feet might turn cold and change colors, what noises they might make and what those noises mean. He answers questions parents don’t want to ask, the ones many doctors aren’t trained to handle.

Then, Williams often sits with his patients and their parents, sometimes all day. This is pediatric palliative care.

“Inevitably, people say, ’That must be so depressing. How can you do that?’ ” Williams said. “And it has its sad moments, but one of my friends said, ’If you focus on the 5 percent that’s sad, you’ll miss 95 percent that’s profoundly joyful.’ “

Still, if he happens to be at a party and anyone asks, Williams usually just says he’s a pediatrician. That’s technically true. Finding words for his precise role requires more time than a passing introduction typically affords. Death and casual conversation don’t mix.

What most people don’t understand is that death is only one facet of his job, and not even the hardest part.

In fact, he finds helping families during their darkest days genuinely rewarding. Mostly, though, his patients don’t face imminent death. Children are more resilient than adults, and young patients facing grave illness often defy medical expectations.

That’s why he’s quick to dispel the myth that pediatric palliative care equals hospice care equals the end of life.

“There are plenty of times we think a kid is going to die and three months later they’re still here. They have these ups and downs,” Williams said. “Very rarely do we get to a point where we’re just focused on hospice.”

Palliative care, meaning to “ease the burden,” was born of the hospice care movement in London some 70 years ago.

A female physician named Dame Cecily Saunders invented the idea of special care for dying patients. She coupled pain relief with symptom management and offered her patients dignity and a chance to resolve their lives before death.

“I didn’t set out to change the world, I set out to do something about pain,” Saunders told The Daily Telegraph of London in a 2002 interview. “It wasn’t long before I realized that pain wasn’t only physical, but it was psychological and spiritual.”

Today, palliative care is an umbrella specialty that includes, among other things, hospice care for patients at the end of life. But there remains much confusion about what these words mean, especially when it comes to children.

“As a longtime hospice medical director, I spent decades trying to convince people that hospice is not about death and dying,” said Joe Rotella, chief medical officer at the Chicago-based American Academy of Hospice and Palliative Medicine.

To further complicate the issue, some hospitals have started “rebranding” their palliative care departments. MD Anderson Cancer Center in Houston, for example, changed the name of its palliative care clinic to the Supportive Care Center.

Camilla Zimmermann, who practices palliative care medicine in Ontario, Canada, recently published research on this topic. She found that patients warmed to the concept of palliative care once they were familiar with it. But most never came around to liking the name and were reluctant to tell family that they were seeing a palliative care doctor for fear of alarming their loved ones.

It is wrongly associated with “giving up,” Zimmermann said. “What they’re really afraid of is death.”

Twelve years before Charlotte was born, Jillian and Steve Williams met each other at ESPN.

They were technical operators at the sports network, specializing in camerawork and editing, lights and behind-the-scenes production.

Late one night at the company’s headquarters in Connecticut, they overheard a co-worker talking to his child on the phone.

All right, buddy. Have a good night’s sleep. I’ll see you when you get home from school tomorrow.

Jillian and Steve stared at each other. Something clicked.

“Can we be doing this job and have children?” Jillian said to him. “How could that ever work? We’d be here at night. Who would be with our children?”

Jillian and Steve were only dating at the time, but they decided to change their lives. They quit their jobs and moved to Myrtle Beach, where Steve’s family owns a printing business. Jillian returned to school and became a teacher. They married in 2009 but struggled to start their own family. Jillian couldn’t get pregnant.

Then, after two rounds of in vitro fertilization and many thousands of dollars later, Jillian and Steve conceived a baby girl. Annabelle was born in 2014.

A year later, they decided to try again. After two more rounds of fertility treatment, Jillian became pregnant with another daughter.

That pregnancy plodded along normally until one night, while they were watching “The Walking Dead,” Jillian’s placenta detached from her uterus nine weeks before the baby’s due date. Steve rushed her to Grand Strand Medical Center, where Charlotte was born during an emergency cesarean section.

She would live for 93 days.

Conrad Williams met them on Day 92.

For Williams, staring down death isn’t the hardest part of his job. Yes, he said, there are patients, even some doctors, who only associate his role with the end of a child’s life, not realizing that palliative care means much more.

The nurses, chaplains, social workers and volunteers on his team help patients make memories - hand prints on canvas and baptisms at bedside. They decipher all the medical jargon thrown at families by other health care providers. They celebrate their patients’ success stories and comfort grieving parents.

But Williams also holds a desk job. As the pediatric palliative care team’s medical director, he must figure out how to float a program that doesn’t generate a profit for his employer.

MUSC, and thousands of other hospitals in the United States, tie physician salaries to productivity - how many patients they treat and how many surgeries they perform. But Williams does little of that. At work, he mainly talks to people. No medical billing codes exist for sending a condolence card or attending a funeral.

And while he’s convinced that pediatric palliative care is meaningful, even essential, for children and their families, he also understands, from the hospital’s perspective, that it’s not lucrative. He gives MUSC credit for spending money it knows it won’t get back.

“Two days ago, I was with a family, pretty much all day, at the end of life,” he said recently. “In a month, I could come back and tell you what I actually was able to bill from that - from a money standpoint - and what we actually collected, based on spending four or five hours with that family and documenting that encounter. It’s probably going to be a few hundred bucks.”

That won’t come close to covering his salary and benefits.

“In the eyes of the numbers people in the hospital system,” he admitted, “that doesn’t make a lot of financial sense.”

Evidence shows that palliative care offered to adult patients yields meaningful cost savings. But that benefit is less well established when it comes to children who need this kind of care.

So Williams is forced to raise money in other ways. His first month on the job, he donned a red tie and white lab coat for a 3-minute promotional hospital video, then did it again when MUSC’s marketing team highlighted his new role in a press release.

He speaks slowly and formally in the video. He crosses his arms in one of the press release photos and smiles for the camera - a posed shot. He doesn’t look entirely relaxed, but needs to make the pitch anyway: Palliative care is important and MUSC is making an investment. But it’s “not a moneymaker,” the press release underscored.

On top of this, he routinely makes small speeches and works closely with the hospital’s foundation, explaining to donors how modest gifts can make a big difference.

He doesn’t mind public speaking, but raising money is time-consuming and stressful. It pulls him away from patients and serves as a constant reminder that every dollar counts if he wants to sustain the program and eventually grow it outside the hospital’s walls.

“There are moments, a lot of Mondays,” Williams admitted, “when I’ve been like, ’I can’t do this anymore.’ “

Jillian and Steve held onto each other, crying, as Williams walked into the Grieving Room and introduced himself.

He asked them to recount what they’d already been told by other doctors.

Then, they had questions. What would Charlotte look like when they took her off life support? How would this work? When would it happen?

Williams told them Charlotte would probably sound like she was gasping for air when they removed the breathing tube. It would sound terrible, he warned them, but she wouldn’t suffer.

“It’s basically like synapses going off, involuntary,” Jillian remembered him explaining.

Williams also said that Charlotte might turn purple before she died. That she might start making a sound called “the death rattle,” an effect of fluid in the airway and weak respiratory muscles.

“I can’t be certain,” he told them, “but based on what we know about what’s wrong with her, she’s probably not going to live more than a few minutes or a few hours.”

They were terrified.

A nurse took Charlotte off the ventilator at noon the next day. A few minutes passed. Then, an hour.

Two, three, four, five hours. Charlotte held on.

Several times that afternoon, Jillian and Steve thought their daughter had taken her last breath, only to hear her gasp for air once more.

They both cried. They asked Charlotte to let go. They told her she’d been fighting for so long.

“It’s OK,” Jillian told Charlotte. “We’re going to be OK.”

It started getting late. Hanna Epstein, a nurse practitioner who works with Williams on the pediatric palliative care team, came into the room.

“Can you give her more morphine?” Jillian said.

Charlotte sounded like she was in such pain.

A higher dose of morphine would speed up their daughter’s death, but Epstein warned them not to rush this moment. They would linger on these last few hours long after Charlotte was gone.

Jillian and Steve listened. They decided to wait.

During his residency training, when Williams was struggling to decide what kind of doctor he wanted to be, a mentor suggested he consider pediatric palliative care. But he didn’t know what she was talking about. It was so obscure.

“My understanding,” he said, “was that it was hospice and that it was for old people and that’s where they go to die. Like, literally, a place where they go to die.”

But he knew he loved working with children. And he had a gift for talking to them.

Throughout his residency training, one mother kept calling Williams back to her daughter’s bedside.

“I walked into the room and she was like 4 or 5 years old, all dressed up in pink. She had this bed that was nicely made by her mom,” Williams said.

“You must like pink,” he told her.

The child was too sick from a fatal mitochondrial disorder to answer him, but Williams talked to her anyway. And he came back, year after year.

He eventually asked her mother why she wanted to see him.

“I’m just an intern,” he explained.

“You’re one of the only ones who actually talked to her,” she said.

Williams’ wife Kelli - back then his fiancée - said she understood why he was drawn to palliative care and told him that he would do well practicing it. But she predicted it would “be hard on us and you.”

That proved true. Williams finished a year-long fellowship in Akron, Ohio, in 2013, then moved to Washington, D.C., to join the pediatric palliative care program at Children’s National Health System. He became the hospital’s first full-time palliative care doctor for children.

Back then, he would leave the house early, stay late at work and unwind on the walk home through Northwest D.C. He lost almost 30 pounds. Kelli worried he had cancer. It wasn’t cancer, only stress.

He “was running around like a crazy person,” Kelli said.

These days, Williams tends to compartmentalize his work at the hospital and life at home.

In the morning, Williams and his wife glide past each other, two people accustomed to routine. They wake up before sunrise with their boys - Grant, 3, and Owen, 1 - then fill bottles, fry bacon, scramble eggs, brush teeth. Pandora’s “Hipster Cocktail Party” serves as background noise.

Then they’re both with patients all day. Kelli is a doctor, too - an allergy and immunology specialist. They met on the first day of medical school at Tulane University. First anatomy lab partners, then friends.

“He didn’t say much,” Kelli said, “but when he did say something, it made me laugh.”

After work, Williams starts dinner as his wife makes her way home. He doesn’t tend to talk about his patients with her, and admits that he sometimes struggles to empathize with Kelli if she’s had a bad day. His bad days are always worse.

“I think there’s this exhaustion that I have that I don’t fully realize,” he said.

Five hours after Charlotte’s breathing tube had been removed, Hanna Epstein, the palliative care nurse practitioner, bent down, put her arms around Jillian and Steve and asked them if they wanted to lie down with their daughter in a hospital bed.

They hadn’t even considered it a possibility. Charlotte had always been hooked up to tubes and machines. Of course they wanted to lie down with her.

So they did. Just Jillian and Steve and Charlotte.

It was summertime, still light outside that evening, but their family and friends had gone home. The room was quiet.

Jillian fell asleep for a few minutes. When she woke up, Steve slept. Their daughter had stopped gasping for breath and her heartbeat had regained its rhythm. Charlotte dozed between them.

“How long is she going to live?” Steve said to Williams the day before.

“There are some pretty distinct signs of dying,” the doctor said. “But the truth is I don’t really know.”

He’d prepared them as best he could. There was no script, but Charlotte’s last day played out almost exactly as Williams warned them it would. At least they knew the nightmare they were walking into.

Six, seven, eight, nine hours.

Charlotte finally died when both of her exhausted parents fell asleep together for the first time, 10-and-a-half hours after she’d been taken off life support.

“We finally relaxed,” Jillian said. “We were finally at peace.”

A nurse who had been monitoring the baby came into the room and woke them up. She couldn’t hear a heartbeat. Charlotte was gone.

Jillian hugged her daughter.

“You did so good,” she told Charlotte. “We’re so proud of you.”

“It was the most peaceful thing that could have happened,” she recalled. “We were able to do it together.”

As the Medical University of South Carolina constructs a new $385 million children’s hospital - the most expensive in state history - administrators recently hired another full-time pediatrician to join the pediatric palliative care team.

Jillian and Steve Williams are helping the program grow, too. They held a golf tournament this fall and raised more than $20,000 in Charlotte’s memory. All of it will be donated to the pediatric palliative care team at MUSC. Their gift was the single largest amount the program has ever received from one of the families in its care.

And more good news: Jillian and Steve are expecting another child next year, a baby boy.