Synopsis
Deliver developmentally appropriate, family-centred paediatric palliative care from diagnosis through transition or death, integrating active treatment, symptom relief, communication, education, safeguarding and lawful best-interests decisions across settings.
- Paediatric palliative care begins when a life-limiting or life-threatening condition creates need; it can accompany curative, disease-modifying, intensive and experimental treatment.
- First-line assessment asks the child what matters using their communication level, while separately exploring parental understanding, family priorities, siblings, school, culture and practical support.
- Involve children and young people in decisions to the extent they want and can manage; age alone neither proves nor excludes decision-making competence.
- Parents with parental responsibility usually participate, but treatment must remain in the child's best interests and serious disagreement requires early mediation, ethics, second opinion or court review.
- Create a child-specific advance care plan covering likely crises, resuscitation, ventilation, seizures, feeding, place, transport, school, medicines and the professionals available at all hours.
- Pain and symptom prescriptions are weight-, age-, route- and organ-specific; use paediatric formularies and specialist advice rather than scaling an adult anticipatory pack casually.
- Assess pain through self-report where possible and behavioural or physiological change when communication is limited, comparing observations with the child's known baseline.
- Support ordinary childhood: play, learning, friendships, privacy, risk taking and family activities are therapeutic goals, not optional extras after medical tasks.
- Plan transition to adult services early for young people likely to survive beyond paediatric care, including prescriptions, equipment, emergency plans, capacity and named coordinators.
- After a child's death, offer culturally responsive care, memory choices, sibling support, clear investigation information and continuing bereavement contact without imposing keepsakes or viewing.
Key red flags
Apnoea, cyanosis, stridor, exhaustion or failure of ventilatory equipment requires immediate paediatric airway support.
A seizure continuing beyond the child's rescue threshold needs the prescribed emergency medicine and escalation route.
New fever, poor perfusion, reduced urine or marked baseline change can indicate sepsis despite chronic complex disability.
An unexplained fracture, injury, medicine discrepancy or unsafe caregiver behaviour remains a safeguarding concern.
Doses copied from an old weight or different concentration can cause severe under-treatment or toxicity.
Serious treatment disagreement should not be left until the planned withdrawal day or emergency collapse.
A child expressing fear, coercion or a wish to speak without family present requires a safe confidential opportunity.
Prolonged seizure, airway obstruction, device failure, severe respiratory distress, sepsis, uncontrolled pain or suspected abuse needs immediate event-specific action.
Investigation priorities
Elicit the child's views with suitable communication and assess parental understanding, siblings, culture, practical need and desired outcomes.
Management branches
A child has a life-limiting condition, significant symptoms, family need or complex decisions.
- Introduce palliative care as an extra layer alongside the disease team and ask the child and family what would improve ordinary life now.
- Assess symptoms, communication, school, siblings, practical burden and likely crises and allocate a named coordinator.
- Review goals and services at developmental, disease and family transitions rather than waiting for a terminal prognosis.