Discussing Pediatric Palliative Care with Doctor Chris Feudtner
"Supporting parents and families in the best way possible given a child’s illness and prognosis." That is a doctor’s role on the pediatric palliative care team, according to Dr. Chris Feudtner.
Now a pediatrician and researcher at the Children’s Hospital of Philadelphia, Dr. Feudtner became interested in palliative care while in pediatric training in Seattle.
"Families dealing with the serious illness of a child are trying to cope in territory they never expected to be in," he observes. With palliative care, Dr. Feudtner says, "We are providing a space to talk about issues that are difficult to talk about, potentially scary, and at the same time, about the positive aspects of life and what we’re hoping for."
Besides opening channels to talk about a child’s treatment options and prognosis, the palliative care team can help in managing symptoms that are bothering the child. Such support may bring together whole teams of medical, psychosocial, and pastoral care providers—in addition to the primary care doctors—to offer the best care possible for the child.
"Palliative care works with the family as a whole," Dr. Feudtner explains, "to think about the best way they can be supported at home or in [the] hospital."
No "Typical" Case
There is nothing routine about what Dr. Feudtner encounters on any given day.
"I have to be ready to catch everything a parent or family throws at me," he says. "I have been called in at the eleventh hour to the Neonatal Intensive Care Unit (NICU), where a newborn is mortally ill and the parents are beside themselves with grief, and we’re asked to help them make a series of gut-wrenching decisions, while also helping to keep the baby comfortable. Sometimes, there will be young siblings in the room, and I’ll be trying to help them make sense of what’s happening. Why are their parents crying? What’s happening to the baby? Palliative care can help in that kind of crisis, when a child is very close to dying.
"At the other end of the spectrum, we may get involved years before a child becomes gravely ill, but where the family has been told the bad news that the disease will progress. In many cases, there’s uncertainty about how quickly it may progress; they may be fretful, upset, and anxious. And at the same time, hopeful. There the question is, how do we help this child live the best life possible for potentially as long as possible?
"We are there to help the family understand what is going on, to think about the treatment options, to make the wisest and best decisions to take the best care of their child. These children will often be at home with some level of palliative support for years."
The team is involved every step of the way. "We stay in touch with families at home as they live this almost dual-reality life: living happily one day at a time, but having part of their world tied up with the progressive nature of the diagnosis. We help as best we can to make sure each day is the best it can possibly be."
The Family-Team Relationship
"No one is trained to be the parent of a child who is seriously ill," says Dr. Feudtner. Helping parents find their way, and helping young patients find and share their voices, involves a deep, trusting relationship between families and clinicians.
The palliative care team can help a family explore options while respecting their values. "A large part of what we do is help parents grow in their capacity to be the outstanding parents they are. It’s out of that context that you make decisions," explains Dr. Feudtner.
Studying Family Decisions
Dr. Feudtner’s research has looked at how parents make decisions when handling their child’s serious and complex medical issues. He has worked with Pam Hinds, a nurse scientist at Children’s National Medical Center, and other researchers to develop related best practices for clinicians.
"We want to flesh out what parents are thinking and how that affects what they do, how they decide. We want to identify the support systems that would be most helpful to parents." Answering these questions may help pediatric palliative care teams better support families and clarify their goals in difficult circumstances.
"Palliative care is there to be helpful," Dr. Feudtner says, noting that the advantage of this support is that "parents and families will be in more control, not less."
Read more about Dr. Feudtner's research:
Parental Hopeful Patterns of Thinking, Emotions, and Pediatric Palliative Care Decision Making
Feudtner, et al.
Archives of Pediatrics and Adolescent Medicine