Background Advance Care Planning is part of the standard of care for children with life limiting or life threatening conditions. An Advance Care Plan (ACP) includes management of acute and inter-current illness, wishes for life and also end of life.

Aim We audited children attending the local hospice to see if they have an ACP and whether they were being regularly updated as per the regional guidelines.

Methods Medical records and Family and future wishes document of 75 (87 in re audit) children and young persons (0–20 years) from the local hospice were audited. Standards were set that at least 80% of the children attending the hospice should have an ACP and it should be reviewed annually. It should be documented if an ACP was not relevant for the stage of illness.

Results 55% of the children and young persons had an ACP or documentation in notes if not applicable, as compared with the set target of 80%. Only 78% of the ACP’s were reviewed annually (instead of 100%). These shortcomings were highlighted. A re audit performed 6 months later demonstrated significant improvement. 64% (improvement of 9%) of children and young persons had an ACP and 96% (improvement of 18%) of the plans were reviewed annually. Interestingly, two thirds of the children and young persons who had previous PICU admissions had an ACP as compared with nearly half from the non-PICU admission cohort.

Conclusion Waiting for PICU admissions to commence an Advance care plan is neither advisable nor acceptable. If done timely, this may potentially avoid unnecessary admissions and address the expectations of the children and young persons and their family.

Recommendations There is a pressing need to revisit ACP pathways and training needs in the majority of the trusts in the region. The concept of parallel planning is useful.