Intensity of Care at the End-of-Life in Pediatrics: A Single Center Analysis With Implications for Advanced Care Planning in Saudi Arabia

Abstract

Background: Advances in medicine have altered the progression of several pediatric disorders. However, this progress also comes with medical, economic, and ethical challenges, which can negatively affect children's quality of life. Objective: This study examines the quality of care of children with malignant and non-malignant conditions at the end of life. Design: A two-year cohort retrospective analysis was conducted. Setting/Subjects: The study included all children who died between December 1, 2021, and December 1, 2023, in a tertiary center in Saudi Arabia. Measurements: Data included. information on children’s demographics, medical history, EOL care, and healthcare services utilization. Results: A total of 302 deaths were analyzed, 42% of infants. The most frequent conditions were cardiac diseases (30.1%) and malignancy (20.9%). Two-thirds had a Do-Not-Attempt-Resuscitation (DNAR) (66.6%), with most officialized in the Intensive Care Unit (ICU). Two-thirds had no advanced directives (66.9%). A majority of children died in the ICU (64.6%), with a significant number receiving intensive care until the very end of life. The Palliative Care Team was involved in only 27.9% of cases, with a median of 47 days between referral and death. Conclusion: These findings highlight the paucity of advanced care planning, delays in goals of care discussion at the end of life, and suboptimal use of specialized palliative care resources early in the disease trajectory. These gaps impact children’s symptom burden, family psychological distress, and unattained children and families’ last wishes.