What Is Pediatric Palliative Care?
Pediatric Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with a serious illness. Palliative care focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the child and the family.
A specially-trained team of doctors, nurses, social workers and others provide palliative care. The team works together with the child’s other doctors as an extra layer of support. Palliative care is appropriate at any age and at any stage of an illness. It is appropriate for neonates, perinates, infants, children, adolescents, and young adults, and it can be provided along with treatment meant to cure.
Palliative care is based on need, not prognosis, so it is best to bring the team in early.
Pediatric palliative care addresses serious medical conditions, including genetic disorders, cancer, prematurity, neurologic disorders, heart and lung conditions and others. It relieves the symptoms of these diseases, such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite and difficulty sleeping, anxiety and depression. In short, it helps the child and the family improve their quality of life.
Pediatric palliative care is family-centered. It helps with communication and coordination of care. With the close communication that palliative care provides, families are better able to choose options that are in line with their values, traditions and culture. This improves the well-being of the entire family.
Palliative care is based on need, not prognosis. It is best to start palliative care as early as possible. This benefits both the child and the family.
Patient Perspectives: The Shu Family’s Palliative Care Story
In this podcast, we hear from Dannell Shu, whose son was born with severe brain damage. Dannell discusses the role the pediatric palliative care played, not just in improving Levi’s quality of life, but in supporting the entire family as it navigated the waters of his chronic condition.
For additional resources (videos, podcasts, downloadable guides) and stories from families about how palliative care makes a difference, visit https://courageousparentsnetwork.org/topics/how-palliative-care-helps