Pediatric palliative care is a powerful intervention that can be prescribed alongside curative or life-prolonging therapies for children with serious illnesses. Research has shown that pediatric palliative care services can help reduce a child’s pain, help manage other distressing symptoms, and provide emotional support.
At Children’s Hospital of Philadelphia, a nationally esteemed Pediatric Advanced Care Team (PACT) takes a comprehensive approach that focuses on psychological, social, and spiritual needs as a standard part of palliative care. Yet many families and caregivers elsewhere are not as familiar with palliative care’s benefits, and health care providers hesitate to recommend palliative care for their youngest patients.
Each year, more than 45,000 children die in the U.S., and three-quarters of these deaths occur in the hospital setting. The National Institute of Nursing Research (NINR) recently launched a national campaign, “Palliative Care: Conversations Matter,” to raise awareness of palliative care and increase its use within the pediatric population.
The NINR, a component of the National Institutes of Health, brought together parents, palliative care clinicians, and scientists to develop evidence-based materials designed to initiate dialogues about palliative care soon after diagnosis and throughout the course of an illness. Chris Feudtner, MD, PhD, MPH, director of research for PACT, was involved in planning the NINR campaign and has had several research studies funded by NINR grants, including an ongoing two-year cohort study focusing on decision-making in advanced pediatric care.
“Part of what the campaign addresses is concerns that parents may view the introduction of palliative care as an ominous sign that the medical team is stepping back,” Dr. Feudtner said. “Palliative care is not exclusive to patients who are no longer seeking cure or no longer seeking life-prolonging therapy. It can be in addition to those type of therapies. The campaign can help physicians provide a more clear explanation of what palliative care is and allay fears.”
The Palliative Care: Conversations Matter campaign materials include informational video vignettes and tear-off pads of patient education sheets that guide providers in how to engage in interactive palliative care discussions. The NINR has received requests for these resources from across the U.S. and internationally.
“The response has been excellent so far,” according to NINR Director Patricia A. Grady, MD. “We’ve been pleased to see so many colleagues in palliative care and nursing organizations helping us spread the word.”
An important part of implementing the campaign is having skilled staff as ambassadors at the bedside to collaborate with parents and incorporate their perspectives into the palliative care plan, Dr. Feudtner said. CHOP’s PACT, for example, helps families understand their children’s underlying disease process and prognosis, optimize symptom control, establish a comforting environment, and promote their highest quality of life.
“You need to have high quality palliative care teams in place in order to make a bad situation as good as possible,” Dr. Feudtner said.
A study he published in the December issue of Pediatrics showed an explosion in the number of palliative care teams over the past 10 years in the U.S. Of 162 children’s hospitals that provided data for the study, 69 percent reported having a pediatric palliative care program.
“NINR’s campaign will help raise awareness of and demand for pediatric palliative care among health care providers and patients, which we hope will encourage the continued growth in research in this important field,” Dr. Grady said.
Dr. Feudtner’s current research aims to improve understanding of how parents make extremely difficult medical decisions for children with life-threatening complex chronic conditions. The findings of his previous studies have emphasized the importance of psychology and the emotional realities involved in this daunting challenge.
Building on research papers published in 2010 and 2012 describing decision-making by parents of children receiving palliative care consultative services, the current CHOP cohort study is following 200 parents and 163 children. Dr. Feudtner and colleagues are examining the process of decision-making longitudinally and the impact on decision-making of hopeful patterns of thought, positive and negative affect, and the child’s illness trajectory.
“Our team and our experience at CHOP have helped us to heed the potential of what palliative care can do from many different angles,” Dr. Feudtner said. “And our research is taking us further. We have bedside learning from clinical practice intermixing with and informing health services and epidemiological research.”
Dr. Feudtner recently received the 2014 Hastings Center Cunniff-Dixon Physician Award in the mid-career category. Presented annually, the award recognizes five physicians who have distinguished themselves in advancing the practice of palliative care and model exemplary skill and compassion at the bedside. He also is associate professor of pediatrics in the Perelman School of Medicine at the University of Pennsylvania and the Steven D. Handler Endowed Chair of Medical Ethics at the Children’s Hospital of Philadelphia.