Families are offered choice for compassionate extubation at hospices or at home. Well-coordinated, individualised child and family care is essential during this process.
Aim To evaluate compassionate extubations within a hospice against national standards to clarify potential improvements.
Proforma designed based on recommendations from ACT – A care pathway to support extubation within children’s palliative care framework, 2011.
Data collected from hospice notes from all deceased patients 01/03/2015–29/02/2016 transferred for compassionate extubation.
Results Although more were offered the service, 6 children who died had been transferred for extubation. Hospice doctors were involved with all transfers (50% by Palliative Care Consultant). Time between the initial discussion to transfer was 1–10 days. 50% of extubations happened within 1 hour of arrival. Time from extubation to death varied from few minutes to 2 days. The audit highlighted excellent care (100%) in most areas of standard 1–6 of ACT framework but table below shows areas requiring improvement.
Separate hospital and hospice notes exist; discussions may have happened at PICU, e.g. organ donation and possibility of death during transfer, without hospice staff being aware. Information may also be verbally disseminated and not documented e.g. no infection control issues. Actual standards may therefore be higher. Formal advance care plans, particularly parallel planning for survival, were rarely completed.
Conclusion This audit demonstrates the need for improved documentation and communication between parties to ensure seamless quality care. New documentation has now been developed for PICU and four hospices across the region. Practice will be reaudited.
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