Pediatric Palliative Care: Easing Your Child's Suffering
A team approach sees kids and families through illness.
Karen Zrenda remembers the first time she took her newborn son Tommy outside.
Tommy's respiratory defect had kept him at Yale-New Haven Children's Hospital for nearly the first year of his life. The sun shined on him for the first time.
"It seemed like such a normal thing, but it was so exciting. It felt like a sign that we were going to be able to take him home," Zrenda tells WebMD.
These ordinary moments, like walks outside or cuddling in a rocker, kept Zrenda going.
"In the hospital, you get so wound up in the medical care. That's the focus 24/7. It's important to try to put a little bit of normalcy into the family's life," says Zrenda, who is now coordinator of the hospital's family connections program.
Bringing normalcy to families' lives is a goal of pediatric palliative care, also known as pediatric advanced care (PAC). Many families, however, resist palliative care because they think it's limited to end-of-life care.
"We're supporting the whole family, beginning at [the child's] diagnosis and following them through," Yale PAC team coordinator Cindy Jayanetti, NP, tells WebMD.
What is pediatric palliative care/pediatric advanced care?
Pediatric and neonatal palliative care include all measures taken to lessen suffering at every stage of a child's illness. The PAC team guides children and their families through the hospital experience.
The palliative care team doesn't replace the active treatment team. The two work side by side.
So what does palliative care add? Sick children and their families can suffer, physically and emotionally, at all stages of chronic and life-limiting conditions. The pain may come from symptoms of the child's condition, of course, but also from side effects caused by curative treatments, anxiety over diagnosis, or dread of an unsure future.
"Dramatic life changes are going to happen both for the child and the family, so we're brought in. When the child becomes stable or there don't seem to be those kinds of needs anymore, we can sign off," says Helene Morgan, LCSW, social worker on the comfort and palliative care team at Los Angeles Children's Hospital.
For parents who fear that the PAC team is only called in when there are no other options, Arden O'Donnell, LCSW, tells WebMD, "The team's job and the doctor's job is to save the patient. You do everything you can to save every single child."
O'Donnell, who is a palliative care social worker at Dana-Farber/Brigham and Women's Cancer Center, says when parents are being asked to make hard decisions, PAC should be there.
Sadly, children's health sometimes takes a turn for the worst. When curative treatment fails, the PAC team continues to work with the family to help identify the child's and the parents' wishes and goals of care.