Background End of life care in the setting of choice is important in palliative care. The majority of children die in hospital intensive care where end of life frequently involves withholding/withdrawing life sustaining treatment: many have conditions that may benefit from palliative care. We hypothesised children were dying without specific palliative care support despite a well established paediatric palliative care team and that a proportion of children would be suitable for rapid discharge to the setting of choice for end of life care.
Method Casenotes for inpatient deaths from January to December 2013 were reviewed to identify: children with a life limiting condition, whether the end of life occurred following planned withholding/ withdrawing of life sustaining treatment and if so whether the child was stable enough to be transferred to an alternative care setting for end of life care.
Result 62 children (31 male) died. Median age at death was 10 ½ months (Q1 6 weeks, Q3 2 years 8 months). Primary diagnoses were cardiac 40%, general paediatrics/neonates 19%, oncology 14%, neurology 11%, congenital malformations 11%. 85% children had life threatening conditions. 58% children died following planned withholding/withdrawing of whom 39% (N = 14) were stable enough to transfer to an alternative setting for end of life care. Median interval between withholding/withdrawing and death was 30 min but 27 h (Q1 = 4 h, Q3 = 132 h) for those stable enough to move. All 15% (N = 8) children with life limiting conditions known to the palliative care team, but no other children had documented discussion of preferred place of care. Preferred place of care was hospital for 6 and home for 2 of whom both were stable enough to move but not notified to palliative care team until after death.
Conclusion Approximately 22% children dying in our institution would have been suitable for rapid discharge, living median of 27 h following transfer to their setting of choice.
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