Table 1

Guidance for hospital staff planning extubations outside intensive care (IC) settings (following clinical judgement that IC interventions are deemed to be futile and not in the child's best interest)

Phase of careActions to be taken
Introduction of withdrawalConsult with palliative care service
Identify appropriate clinicians to meet with parents to discuss management of child's care and treatment
Meet with parents to discuss withdrawal including Implications of withdrawal Management of symptoms Place of care preferences Provide parents with opportunities for further discussions and involvement in decision making
Pre transferRationalise medication and interventions to maximise comfort
Contact religious/spiritual advisors as per family wishes
Identify and contact appropriate local services Home—general practitioner, community children's nursing team, local paediatrician Hospice—lead nurse and designated medical support Local hospital—lead consultant
Negotiate availability of local services to meet child and family at home, or support extubation at destination
Negotiate availability of ambulance services for transfer
Acquire knowledge on accessibility at planned destination from parents, family members and or local staff
Ensure destination is accessible for all equipment
Ensure necessary equipment necessary for transfer and ongoing care available and able to be used in required settings Ensure arrangements in place for certification postdeath
Review with family agreed time frame for extubation
Distribute Symptom Management Plan (SMP) to all members of the local, transferring team and destination team and give a copy to the family
Arrange medication recommended in SMP to be available at transfer site
Train parents/carers in how to give potential ongoing medication
Discuss and agree planned action if extubation or death occurs during transfer
Establish which health professionals will carry out extubation
Determine timescale for discontinuation of life-dependent medications (ie, in the ICU, on arrival at the destination or peri-extubation)
ExtubationProvide family with time and appropriate privacy to complete rituals
Clarify with family that death may not occur in the expected timeframe and in some circumstances a child may survive longer term.
Inform family/carers of symptoms and signs that may occur postextubation
Outline management of symptoms that may occur
Ensure provisional plans in place for child's ongoing care
Commence any symptom management medication that may be required around the time of extubation and immediately postextubation
PostextubationReview symptoms and initiate appropriate management
Handover care responsibility to local team (community, hospice, hospital)
Review fluid management plan
Provide access to ongoing care and symptom management support (including 24/7 telephone access)
Ensure Emergency Care Plan (ECP) corresponds to current wishes of parents
Communicate child's location and status along with any ECP changes in writing to local primary care, community, hospital and emergency services
Provide family with written copy of updated ECP
Provide family with information on who to contact should a healthcare professional not be present at time of death
Post deathMonitor that previously planned activities are proceeding: Designated medical practitioner available to complete death certificate Designated family member takes responsibility for postdeath arrangements Agreed upon bereavement support is initiated Planned for care of child's body postdeath is carried out
  • ECP, emergency care plans; ICU, intensive care unit.