Children with complex chronic life-limiting conditions, although well known to their carers locally, are often unknown to the paediatric intensive care (PICU) team on admission. End-of-life discussions involving the withdrawal of mechanical ventilation can be especially difficult if the patient's family are in unfamiliar surroundings. The option of compassionate extubation at home occasionally appears as a topic in the literature.
Aim To present two case reports of compassionate hospice extubation by a PICU team in two terminally ill paediatric patients.
Method Two case reports. The authors' PICU recently transferred two paediatric patients with life-limiting conditions to hospices for compassionate extubation. This was facilitated over a relatively short period of time and was much appreciated by the patients' families and care-givers. Literature relevant to home/hospice extubation is reviewed. With some PICUs serving a large area geographically, patients and their families can sometimes be over 100 km away from home. Compassionate extubation at home involves a huge amount of preparation and time. Comprehensive discussions with the family, nursing staff, physicians and the local multidisciplinary care-giving team are required. In case 1, the authors describe a 10-year-old child with a premature ageing syndrome, Cockayne's syndrome, who was ventilated for acute respiratory failure associated with pneumonia. Case 2 describes a child with partial trisomy 18 with influenza A subtype H1N1 pneumonia. Both families welcomed the option of withdrawal of mechanical ventilation closer to home, but not actually in their family home.
Conclusions To ensure quality end-of-life care, those caring for critically ill children must be adequately prepared in the principles and practice of palliative care. Compassionate extubation outside of the hospital setting should be an additional option for patients and parents. Further training, creation and implementation of guidelines should ensure we have a workforce capable of meeting the needs of our communities.
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