Aim The use of Emergency care plans (ECPs) is recommended by ‘Together for Short Lives’, (TFSL) to prevent inappropriate escalation to futile interventions in children with incurable life-limiting conditions (LLC).
The aim was to assess compliance with TSFL guidelines for ECP in children on a High-Dependency Unit (HDU), at a large children’s hospital:
proportion of children with completed ECPs
whether care during an acute episode was consistent with ECP
Methods Children with LLCs admitted to HDU over a 6 month period were identified. Underlying condition; reason for admission; record of discussion of end-of-life (EoL) preferences; HDU treatment; escalation to PICU.
Results 45 patients were evaluable. Fourteen (31.1%) patient notes recorded EoL preference. (24.4% completed ECP, 6.7% discussion alone). In two cases preferences were not followed because situation changed (1 parental wishes, 1 alternative intervention). 3/11 ECPs were physical hard copies in the notes that would be sought in an emergency, five could not be located.
Conclusions Documentation of preference in EoL care should be accessible in 100% of patients with LLC admitted to HDU. That target was not reached. For most, there was no record of any EoL discussion. Documentation was mis-filed in many cases, potentially rendering it difficult to access at crucial points in patient care. Where ECPs were in place, they were followed unless there was a reason for deviation.
We would recommend:
A lower threshold for clinicians to raise the subject of ECPs in life-limited children
A dedicated copy of any ECP to be filed at the front of the patient notes
A clinical portal copy of the ECP
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