Study: Use curative and palliative care for children

Author urges taking palliative care mainstream

People caring for profoundly ill children must meet their patients’ social, psychological, and spiritual needs as well as their medical needs, say the authors of an article published in the April 22 issue of the New England Journal of Medicine.

Joanne Hilden, MD, one of the article’s authors, says she wants to see palliative care become part of mainstream care for seriously ill and dying children. She says palliative care works best when it goes hand in hand with curative therapy, even when a patient’s prognosis is uncertain.

"Kids are so strong," says Hilden, chairwoman of the department of pediatric hematology/ oncology and director of pediatric palliative care at the Children’s Hospital of the Cleveland (OH) Clinic. "You don’t know who is going to make it through what, so you plan for both."

Diane Meier, MD, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine in New York, calls the article "critically important." Meier says palliative care is not only meant for people in the last days or weeks of their lives. She defines palliative care as "medical care focused on relief of suffering and support for the best possible quality of life for patients facing serious illness or injury and their families."

Palliative care, which evolved from the hospice philosophy, is appropriate for children suffering from a variety of conditions, including various heart and neurologic diseases, advanced cancer, cystic fibrosis, and muscular dystrophy, the authors wrote.

Based on anecdotal evidence, Hilden says, pediatric palliative care helps families.

"We see patients and families better served, pain better controlled, parents feeling better about their decisions, and siblings brought in to the conversations," she says. "But nobody has really measured it." Hilden and her colleagues call for more research on the issue.

A pediatric palliative care team should include a primary physician, a care coordinator, and, in some cases, a bereavement specialist, according to the authors. In addition, the team needs the support of child psychologists and child-life specialists. Together, they can answer questions, treat pain, and address fears of the patient and his or her family.

Leading children’s hospitals have such teams in place or are developing them, but Hilden says they are still a "luxury" because of such barriers as cost, training, and misconceptions.