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Supporting families with end of life decisions in paediatric intensive care
  1. LE Pritchard
  1. Paediatric Intensive Care Unit, University Hospital of North Staffordshire, Stoke-on-Trent, UK

Abstract

Aims This audit aims to ensure that families are given time to consider and discuss their options (particularly regarding choice of location for end of life care), and support to reach a consensus with the care team, when it is becoming evident that intensive care is no longer in a child's best interests.

Local practice was audited against the ACT guidance on supporting extubation.

Methods Discharges from PICU over a 26 month period were analysed and a case note review carried out.

Results Of 1,146 admissions, there were 52 deaths.

72% of the group studied died in the local PICU. 14% were transferred elsewhere for palliation.

Of those dying in PICU, intensive care was withdrawn or withheld in 68%. 32% died during active treatment. Of these, a consensus between family and physicians to withdraw intensive care was not reached in 30%.

In 26% of patients where withdrawal or non-escalation of intensive care was considered, this was initially discussed with families over 24 hours before death. In 16%, the initial conversation occurred less than 2 hours before death.

Of patients dying in PICU following withdrawal of intensive care, no families were offered transfer home or to a hospice. 60% died within an hour of withdrawing intensive care

Where a plan was made not to escalate intensive care, of the patients dying in PICU, transfer to a hospice or home was discussed in 40% and 20% respectively. In this group, 60% survived for over 24 hours after withholding intensive care.

Conclusion In over half of the patients in which withdrawing or withholding intensive care was appropriate, the family had over 12 hours to consider the decision and the majority had further opportunities to discuss their options.

Following withdrawal of intensive care, should transfer home or to a hospice be desired it would be appropriate to transfer the patient for extubation in the preferred setting, requiring careful planning. In the non-escalation group, the time between making the decision and the child's death was often longer, facilitating transfer to a chosen location when this is considered at an early stage.

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