Actual and Preferred Location of Death for Children Known to a Palliative Care Service

Abstract

This study aimed to establish the frequency and congruence between preferred and actual locations of expected pediatric deaths and to identify associated factors. A retrospective review of death review forms and medical records was conducted in two pediatric palliative care services in Sydney, Australia, involving 486 patients who died between January 2017 and May 2024). Hospital was the most common LOD (49.8%), then home (28.4%) and hospice (21.0%). At the last documented LOD conversation, 36.2% of families preferred home, 28.6% hospice and 26.4% hospital. Preferred LOD outcomes were achieved for 87.7% of families, although 21% who preferred a home death did not achieve this. Preferred and actual LODs of home were significantly associated with having a community palliative care referral and palliative care home visit. The findings highlight the importance of enabling families to plan for their child’s LOD, and ensuring preferences are documented and communicated across health services.