Pediatric Palliative Care: Easing Your Child's Suffering
A team approach sees kids and families through illness.
Communication: The heart of pediatric palliative care continued...
"It's not easy for anyone to talk about," says McCabe. But parents don't have to do it alone.
Parents are always given the option of explaining their child's condition themselves, but they usually choose to have a specialist in the room who can take over if the conversation becomes too difficult, says Kendra Frederick, who is the certified child life specialist in the pediatric oncology unit at Yale-New Haven Children's Hospital.
There are precise ways to explain illness and death to children depending on their age. "[These conversations] are a lot like surgery. There's a specific procedure. There are questions you can ask that open a conversation up rather than shut it down," says O'Donnell. Social workers can help role play difficult conversations with parents before they occur or show them means of breaking the ice.
Few things could be more difficult than talking to a child about the possibility of not surviving an illness. All experts who spoke to WebMD agree that children usually know more than parents think.
"The kids know what's going on. No matter how hard parents try to protect them from the truth, they know," says McCabe.
Children often won't ask questions if they sense their parents don't want to talk about it. So open communication can relieve a great deal of children's anxiety and suffering.
Pediatric Palliative Care: Support for the Whole Family
The pediatric palliative care team works across disciplines to support the whole family and the whole person. It may be a doctor that offers emotional support rather than a social worker. It may be a chaplain who rocks a baby in neonatal ICU rather than a nurse.
As McCabe tells WebMD, having a seriously ill child "is a marathon," and families need to maintain some elements of normalcy in their lives in order to pace themselves and to cope with long hospital stays.
McCabe gives parents a couple of days to get used to being at the hospital before she reminds them that they need to have regular meals, go home for showers and clean clothes, and get outside for a walk or a cup of coffee from time to time.
Normalcy also means having normal moments with your child. "It's very easy to lose sight of that when you're in an intense medical environment, but it's so important," Zrenda says. She should know: Zrenda's son was 4 months old before she was alone with him for the first time.
"You always have a lot of time at home alone with your child, holding him. But I had never had that [with Tommy], so you realize how important it is. We need to make those moments happen for families," Zrenda says.
PAC teams help families have parent-child moments in the hospital by arranging alone time, walks outside, or family portraits with photographers.