Advances in pain and palliative care for adults have been significant in the past decade due in part to increased recognition, support and use by caregivers and patients. While acknowledging that lessons from adults can be borrowed to help pediatric patients, an international team of pediatric palliative care specialists is also calling for increased research to address children's differing physical, psycho-social and clinical needs.
In a review article to be published by the journal Lancet on its Web site on Aug. 16, and later in a print edition, Joanne Wolfe, MD, MPH, of Dana-Farber Cancer Institute and Children's Hospital Boston and her coauthors outline steps to further the development of pediatric palliative care standards and objectives.
"Emerging data from our research suggest that there are a lot of opportunities for improvement in the area of pediatric pain and palliative care," explained Wolfe, the paper's senior author. "If we do not become a community of interested individuals moving this field forward, there isn't going to be the opportunity systematically to figure out ways to do a better job of taking care of these children and their families."
Pediatric palliative care focuses on ensuring the best possible quality of life for children whose illness makes it likely that they will not live to become adults, and focuses on the physical, emotional, social and spiritual needs of the child as well as supporting the family.
In the United States there are over 300,000 children living with complex chronic conditions that may lead death in childhood or premature death and who may benefit from palliative care.
The authors reviewed the use of palliative care world-wide and identified limitations based on access to care and resources. They cited six challenges that must be addressed to further the field of pediatric palliative care:
- Clearly defining pediatric palliative care
- Better understanding the needs of children with life-threatening conditions and their families
- Developing an approach to pediatric palliative care that will be appropriate across different communities
- Reducing suffering, and promoting hope and healing
- Acknowledging professionals' responses and needs for support
- Promoting needed changes by cultivating educational programs
"Annually, 55,000 children die, but there are so many more kids living day to day," said Wolfe, who is also an assistant professor of pediatrics at Harvard Medical School. "Along with care focused on their underlying illness, we also need to focus on their quality of life, comfort, day-to-day living, because they may not live to adulthood."
The study was funded by the National Cancer Institute and a Child Health Research Grant from the Charles H. Hood Foundation.
The study's other authors are Stephen Liben, MD, Montreal Children's Hospital of the McGill University Health Center in Montreal, and Danai Papadatou, PhD, University of Athens, Greece.
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