Most children receiving palliative care live for more than a year after beginning such treatment
Research Activities, December 2011, No. 376
Palliative care for adults, mostly cancer patients over age 60, is usually thought of as short-term care to ease the patient's dying. In contrast, most children receiving palliative care—with the exception of infants—are alive for more than a year after beginning care, a new multicenter study shows. Only in the past decade have children's hospitals begun offering palliative care services to address the needs of children with advanced, life-threatening conditions and their families.
Chris Feudtner, M.D., Ph.D., M.P.H., of Children's Hospital of Philadelphia, and colleagues followed 515 children, who received palliative care at six children's hospitals during a 3-month enrollment period, for 12 months or until death. Of these, 36 percent were new to the pediatric palliative care programs while 64 percent were established patients. Ages ranged from less than 1 month (5 percent) to 19 years or older (16 percent). Genetic/congenital problems accounted for 41 percent of the group, followed by neuromuscular disorders (39 percent), cancer (20 percent), respiratory problems (13 percent), and gastrointestinal disorders (11 percent). More than half of the children had more than one condition, resulting in problems totaling more than 100 percent of patients. Nearly half of the patients (47 percent) were cognitively impaired and 31 percent suffered chronic pain.
Thirty percent of the children died within 12 months of their palliative care consult, with a median time-to-death of 107 days. The children who died within 30 days of the consult were more likely to be infants, and their consultation goals were more likely to be decisionmaking support, near-death recommendations, or parental and sibling bereavement. The study was funded in part by the Agency for Healthcare Research and Quality (HS18425).
More details are in "Pediatric palliative care patients: A prospective multicenter cohort study," by Dr. Feudtner, Tammy I. Kang, M.D., Kari R. Hexem, M.P.H., and others in the June 2011 Pediatrics 127(6), pp. 1094-1101.