Most Children in Palliative Care Live Longer Than a Year

Published on in CHOP News

May 24, 2011 — Children with life-threatening illnesses receive hospital-based palliative care services for an average of more than a year, far longer than adults who require similar end-of-life support, according to a new study from the Pediatric Palliative Care Research Network and PolicyLab at The Children’s Hospital of Philadelphia.

Children receiving end-of-life care differ from adults

The majority of children were treated for genetic, congenital, neuromuscular, breathing and stomach illnesses, much different from the adult palliative population often dominated by cancer. About 20 percent of the children in the study had cancer. The study, “Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study,” was published online today in the journal Pediatrics and is the first cohort study to look at the characteristics and survival of children receiving end-of-life care.

“This study provides a snapshot of who is being cared for by some of the leading hospital-based pediatric palliative care teams in the U.S. and Canada,” said lead author Chris Feudtner, MD, PhD, MPH, director of research for the Justin Michael Ingerman Center for Palliative Care team at The Children’s Hospital of Philadelphia. “This study highlights the differences between adults and children needing end-of-life care and should help instruct other hospitals looking to establish their own pediatric palliative care teams.”

As the field of pediatric palliative care evolves, the creation of such an interdisciplinary team needs to account for the different patients they will serve. Palliative care teams need broad understanding of many underlying medical conditions and the ability to skillfully address the complex chronic illnesses in addition to the challenges of pain and symptom management, the authors said. The teams’ main objectives were to manage pain, improve communication among all parties involved in the patient’s care, support decision-making and help coordinate care.

Study findings

Researchers studied 515 patients from six hospitals in the U.S. and Canada in 2008, with 1-year follow-up. Children with grave and chronic illnesses receive an average of nine drugs and the majority rely on life-supporting medical technology such as gastric feeding tubes, the study found.

Two-thirds of children in the study survived past the 12-month follow-up. Patients who died within 30 days after joining were more likely to be infants and to have either cancer or heart conditions. The typical adult receives palliative care for between one to three months.

“The average life span of these patients was longer than many would have expected and the study results help emphasize that children receiving palliative care services are living — and that palliative care is principally about how to best live — with grave life-threatening conditions,” Dr. Feudtner said. “We catch a glimpse from these data into the lives of these children and their families, and seeing that their journey is long, understand better the support that they need.”

Dr. Feudtner also points out that “the longevity of patient survival underscores the importance, for many patients and families, of integrating the best of palliative care with the typical medical and surgical interventions that seek to ameliorate the underlying disease.”

The study authors recommend future studies to collect more information directly from patients and their families served by more hospitals and to assess processes of care and outcomes.

Children's hospitals involved in the study

The six hospitals involved in the study include The Children’s Hospital of Philadelphia; Children’s Hospital Boston/Dana-Farber Cancer Institute; Seattle Children’s Hospital; Akron Children’s Hospital; Children’s Hospitals and Clinics of Minnesota; and Canuck Place and British Columbia Children’s Hospital.

The study authors

In addition to Dr. Feudtner, study authors include Tammy I. Kang, MD, and Kari R. Hexem, MPH, of The Children’s Hospital of Philadelphia; Stefan J. Friedrichsdorf, MD, and Kaci Osenga, MD, of The Children’s Hospitals and Clinics of Minnesota; Harold Siden, MD, MHSC, of the Child and Family Research Institute of Vancouver; Sarah E. Friebert, MD, of Akron Children’s Hospital; Ross M. Hays, MD, of Seattle Children’s Hospital; Veronica Dussel, MD, MPH, and Joanne Wolfe, MD, MPH, of The Dana-Farber Cancer Institute and Children’s Hospital Boston.

More information

Read the full report.

About PolicyLab

PolicyLab at The Children’s Hospital of Philadelphia develops evidence-based solutions for the most challenging health-related issues affecting children. PolicyLab engages in research that is both responsive to community needs and relevant to policy priorities, partnering with practitioners, policymakers, and families throughout the research process. Through its work, PolicyLab identifies the programs, practices, and policies that support the best outcomes for children and their families, disseminating its findings beyond research and academic communities as part of its commitment to transform evidence to action.