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

Area of Science:

• Pediatric Palliative Care
• Thanatology
• Health Services Research

Background:

• Understanding the preferred and actual locations of death (LOD) for children is essential for providing patient-centered care.
• Significant discrepancies can exist between families' wishes and the place where a child's death occurs, impacting family experience.
• Pediatric palliative care services play a vital role in facilitating end-of-life care discussions and planning.

Purpose of the Study:

• To determine the frequency of preferred and actual locations of expected pediatric deaths.
• To assess the congruence between preferred and actual pediatric death locations.
• To identify factors associated with achieving preferred pediatric death locations.

Main Methods:

• Retrospective review of death review forms and medical records.
• Analysis of data from 486 pediatric patients across two palliative care services in Sydney, Australia (January 2017 - May 2024).
• Statistical analysis to identify factors associated with preferred vs. actual LOD.

Main Results:

• Hospitals were the most common actual location of death (49.8%), followed by home (28.4%) and hospice (21.0%).
• Families' preferences at the last documented conversation were: home (36.2%), hospice (28.6%), and hospital (26.4%).
• Preferred LOD outcomes were achieved for 87.7% of families, but 21% who preferred home did not achieve this; home LOD was linked to community palliative care referral and home visits.

Conclusions:

• While most families achieve their preferred location of death, a notable percentage do not, particularly for home deaths.
• Effective planning, documentation, and communication of end-of-life preferences across healthcare services are critical for aligning actual and preferred pediatric death locations.
• Strengthening community palliative care referrals and home visits can improve the likelihood of achieving home deaths when preferred.