Listening to Families
As part of the palliative care team, Cora Welsh, a child life specialist at Johns Hopkins Children’s Center in Baltimore, says, “Our goal is to hear what’s important to the family, and what extra supports they need to help them meet their children’s needs. We’re a complement to care working alongside the medical team. We fill in any gaps or needs not being met.”
When she meets a family, Ms. Welsh’s primary goal is to figure out what brings joy to their baby, child, or adolescent. She asks them to describe the best part of the day and explain what makes it the best. Then, she uses that information to determine how the team can provide more joy in whatever context is appropriate: home, hospital, or elsewhere.
The next step is helping that child’s voice be heard, regardless of where they are developmentally. “A 17-year-old’s voice is going to be different than someone who is, developmentally, a three-year-old,” Ms. Welsh explains. “We want the family to hear it, but we [especially] want to make sure the hospital or clinic hears it loud and clear.”
Finally, Ms. Welsh looks for things the family can do together. “I do arts and crafts and memory-making activities. I try to frame all those activities in terms of what fun things the family can do together,” she says, noting that it could be “something as simple as making a scrapbook, or taking their baby outside to feel snow on their face.”
There may also be times when a child doesn’t want to include their parents. Ms. Welsh explains, “When a child is old enough to express his or her desires, I try to give them the freedom to do that. I’ll find ways to talk to parents about why it’s important to give their child that space.”
Sometimes, her job involves helping families come to terms with an uncertain reality while achieving the best life possible.
“Palliative care is for kids with very complicated illnesses… [who] spend quite a bit of time in medical care,” says Ms. Welsh. But they are still children—children who are trying to live within the context of their illnesses. “Seventy-five percent of our patients will be in the hospital for a little while, then go home and live with their families. We want to facilitate that as much as we can,” she says.
Ms. Welsh appreciates that, as tough as it can be for children and families coping with serious illnesses, “they are just trying to live their lives.” She believes that the top two benefits of pediatric palliative care are continuity of care and the amount of time that team members spend with patients and families. “I get the chance to establish a connection with parents and caregivers,” says Ms. Welsh. “We make a very serious effort to do that.”
A Day in the Life
Cora Welsh explains a day as a child life specialist
I walked in this morning and knew there were two patients in our Pediatric Intensive Care Unit (PICU) whom I worked with extensively. One of them is near the end of her life. Her family wanted everyone to focus on the big picture—if she wasn’t able to leave the hospital in the same shape as when she walked in, the young woman was not interested in medical treatments. Over the month she has been in the PICU, it’s been the role of her nurse practitioner—and mine—to keep reminding the medical team of her goals.
I also checked up on another patient’s lab tests—an adolescent with some developmental delays. He gets very anxious in the hospital. He frequently doesn’t have a parent here with him. I spend a lot of time helping him communicate that he’s feeling anxious, reassuring him that it’s okay to ask for help; he’s safe here.
Then, I checked in with a family in the Neonatal Intensive Care Unit (NICU) whose son was born with congenital birth defects. They’re working on being discharged. They have two older children, and they’re concerned how the older son will be able to cope. So, we’ll be in communication with the brother’s school counselor.
I have the luxury of spending an hour or two with a patient. We know we are so lucky compared to [those] who have limited interaction.