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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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What is pediatric palliative care/pediatric advanced care? continued...

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.

"We had a little girl who desperately wanted to attend the Halloween parade in the hospital. So it became the focus of clinical decision making," says Megan McCabe, MD, director of the pediatric critical care fellowship program at Yale School of Medicine.

If a child dies, the palliative care team continues to support the family through the bereavement process.

"It's so important to have someone who already knows you, to keep the relationships you have, not to bring in somebody new at the time of death," Morgan tells WebMD.

For these reasons, it is ideal for palliative care teams to come in as soon as a child is diagnosed with a chronic or life-limiting condition. "The earlier you get a team in, the better -- even if you never use it. PAC has signed off on many people because they got better," says O'Donnell.

Coming in early, the team can learn the triggers of suffering for each family member as well as their sources of strength.

"We can build on them later when the going gets really tough," says Andres Martin, MD, medical director of Children's Psychiatric In-Patient Service at Yale-New Haven Children's Hospital.

A PAC team typically is composed of a doctor, a nurse coordinator, and one or more mental health specialists. The latter may be a social worker, psychologist, psychiatrist, child life specialist, or any combination thereof. Many children and families benefit from a nondenominational hospital chaplain as well.

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