Table 1

Summary of the phases of care in relation to withdrawal of life-sustaining ventilation out of the paediatric intensive care unit24

Phase of careChild/familyEnvironment/staff
Introduction of withdrawal and preparationDiscuss parallel planning and potential outcomes
Family choices (place/time)
Personal resuscitation plans
Anticipatory management of symptom control
Faith and spiritual needs
Joint planning between teams
Advanced care plan for child
Consult with palliative care service
Equipment/medications required
Organ donation/autopsy
Pre-transferContact numbers
End-of-life care plan confirmation
Rationalisation of medication
Discuss time frame for extubation
Agree symptom management plan
Place of care/practicalities
Establish team roles
Contact appropriate local services
ExtubationProvide time for privacy and rituals
Discuss possible symptoms and management
Consider pre-emptive symptom management
PostextubationContact details of leading team
Symptom management
Constant symptom review
Plan ongoing fluid management
Ensure ongoing care provision (24 hours telephone support)
PostdeathFaith and spiritual needs accommodated
Registration of death
Funeral care arrangements
On-going bereavement support
Medical certification
Child death overview panel
Ensure adequate bereavement support
Establish place of care of body