DO CHILDREN AND YOUNG PEOPLE WITH LIFELIMITING CONDITIONS RECEIVE TIMELY PALLIATIVE CARE INPUT AND ADVANCE CARE PLANNING?

DO CHILDREN AND YOUNG PEOPLE WITH LIFELIMITING CONDITIONS RECEIVE TIMELY PALLIATIVE CARE INPUT AND ADVANCE CARE PLANNING?

Parry-Reece J; Jassal S; Soman A

Archives of Disease in Childhood

2024

advance care planning; palliative therapy; adolescent; aged; child; conference abstract; human; infant; major clinical study; newborn; pediatric intensive care unit; prevalence; retrospective study; special situation for pharmacovigilance; terminal care; therapy; time of death

Objectives To assess the prevalence of advance care planning in children and young people with life limiting conditions who die on the paediatric intensive care unit. Methods We retrospectively audited data on children and young people who had died on our PICU between January 2020 and February 2023. We included only children and young people who had a known life-limiting condition and excluded for children aged 28 days or less at the time of death. Results Sixty-seven children met our inclusion and exclusion criteria. Of these, only 5 had an advance care plan in place prior to their final admission to PICU, and only 1 had a ReSPECT form in place. 33/67 children received a ReSPECT form in the days or hours preceding their death, during their final stay. 9/67 children had paediatric palliative care input prior to admission and 22/67 had paediatric palliative care input during admission. Conclusion End-of-life care discussions are well documented whilst children and young people are in our PICU. However, it appears that children and young people with known lifelimiting conditions do not often receive specialist palliative care input and the opportunity to formulate advance care plans before a life-threatening crisis. Greater understanding of the barriers to accessing paediatric palliative care and/or advance care planning amongst various subgroups of children and young people with life limiting conditions is required and only then can appropriate recommendations be made.

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