Synopsis
Integrate paediatric palliative care and short breaks from diagnosis, assess multidimensional symptoms, support family life, record proportionate emergency and end-of-life decisions and provide coordinated care wherever the child is treated.
- Paediatric palliative care begins when a life-limiting or life-threatening condition creates need and can run alongside disease-directed treatment.
- Assess physical symptoms, communication, development, emotional wellbeing, family capacity, culture, spirituality, education and practical care together.
- Offer short breaks according to assessed family need and child safety; respite can occur at home, in hospice or another suitable setting.
- Create an advance care plan through repeated conversations, including goals, preferred place, emergency treatments, escalation limits and key contacts.
- A do-not-attempt-cardiopulmonary-resuscitation decision concerns CPR only and must not be interpreted as withholding antibiotics, oxygen, fluids or comfort care automatically.
- Reassess potentially reversible causes of deterioration while delivering prompt relief from pain, breathlessness, secretions, nausea, agitation and seizures.
- Prepare anticipatory medicines and equipment through the responsible clinical team with exact child-specific instructions, access and governance.
- Continue bereavement support, sibling care, practical guidance and team debrief after death rather than ending contact abruptly.
Key red flags
Uncontrolled pain, breathlessness, agitation, haemorrhage or repeated prolonged seizures requires urgent specialist symptom-management support.
A family unable to continue safe care because of exhaustion, equipment failure or loss of night support needs an immediate contingency response.
Conflict about treatment goals, uncertainty over plan validity or disagreement between those with parental responsibility should prompt senior clinical and legal-ethical support.
New injury, unexplained medicine discrepancy, fear or neglect remains a safeguarding concern despite life-limiting illness.
A plan that cannot be found, is out of date or lacks clear emergency actions is unsafe and must be reviewed rather than interpreted informally.
Sibling distress, parental mental-health crisis or complicated grief risk deserves active assessment and support.
Investigation priorities
Define intensity, likely mechanism, triggers, communication and effect on function.
Management branches
A life-limiting condition causes symptoms, complex decisions or substantial family burden.
- Ask the child and family what matters now and what they fear.
- Assess symptoms, development, family capacity and practical service gaps.
- Coordinate disease-directed, community, hospice and primary-care contributions.
- Agree regular review and a route for urgent advice.