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Pediatric Palliative Care: Easing Your Child's Suffering

A team approach sees kids and families through illness.
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Communication: The heart of pediatric palliative care

Effective, supportive communication is the heart of pediatric palliative care.

The more complicated a patient's condition, the greater the number of specialists who may be involved and the greater the number of decisions to be made. The palliative care team can serve as an objective third-party advocate for the patient and family and as a moderator of intense communications with and between the child's doctors.

Among the team's first objectives is to learn the goals, wishes, and values of the child and family. Later, if decision making becomes more difficult or heightened emotions cause parents to lose focus, the team can help keep treatment plans on track with the family's original wishes and goals. And the team helps families re-evaluate goals as circumstances change.

With pediatric patients, there may be parents, step-parents, and grandparents involved in decision making. "The majority of our job is being mediator among family members' multiple, conflicting perspectives," says Terri Major-Kincade, MD, who is a neonatologist with a specialty in palliative care.

The team also helps parents discuss difficult matters with children, whether it is breaking the news of a diagnosis, explaining a condition, or, if the time comes, explaining the possibility of death to the patient and the siblings. Social workers and child life specialists may also give presentations at patients' and siblings' schools, or work with school psychologists, so classmates and friends can understand.

"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.

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