Pediatric Palliative Care: Easing Your Child's Suffering
A team approach sees kids and families through illness.
What is pediatric palliative care/pediatric advanced care? continued...
"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.
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.