Pediatric and Perinatal Palliative Care
Family-centered care
Pediatric palliative care begins at diagnosis and can continue alongside curative treatment. Care is family-centered, developmentally appropriate, and focused on the child's quality of life. Parents are usually surrogates, but children should participate through assent according to their developmental stage. Infants have no concept of death; preschoolers may see death as temporary; school-age children often understand finality; adolescents can reason abstractly. A major trap is assuming infants do not feel pain; they do, and they require weight-based analgesia.
Assessment and communication
Use age-appropriate pain tools such as FLACC or Wong-Baker FACES. Opioid dosing is weight-based, and neonates require careful monitoring. Ask what the child has been told and what they want to know. Siblings need support and honest, developmentally tailored information. School reintegration and peer support matter. Perinatal palliative care addresses prenatal diagnoses with a birth plan, comfort-focused delivery, memory making, lactation suppression, and bereavement support. Some conditions once considered lethal now have longer survival, so avoid absolute predictions.
Systems and ethics
Children may receive concurrent hospice and disease-directed care. Consent is parental, with assent from the child when appropriate. Ethical conflicts should use a best-interests framework and ethics consultation. Cultural and religious beliefs shape decisions.
Traps
Do not withhold a diagnosis from a child who is asking. Do not apply adult hospice rules without modification. Do not forget siblings and grandparents.
Rule of thumb
Ask the child what they understand and what questions they have, then answer at their developmental level without forcing information they do not want.