End-of-Life Pathways and Limitation of Life-Sustaining Treatment in Children with Pre-existing Neurological Disorders: A 10-Year Retrospective Cohort Study.

Abstract

Background and objective: Limitation of life-sustaining treatment (LSTL) is an important component of pediatric end-of-life care, but its use in children with pre-existing neurologic disorders remains insufficiently described. We aimed to characterize end-of-life pathways, LSTL practices, and decision-making processes in this population.

Methods: We conducted a retrospective observational cohort study of children with pre-existing neurologic disorders who died in a tertiary pediatric hospital between 2015 and 2024. Clinical characteristics and end-of-life care were compared between children with and without LSTL preceding death.

Results: Of 37 included children, LSTL preceded death in 24/37; 8/37 died after brain death and 5/37 after unsuccessful resuscitation. Compared with children without LSTL, those with LSTL were less often admitted for acute neurological conditions (2/24 vs. 6/13, p = 0.013) or receiving invasive mechanical ventilation at death (9/24 vs. 11/13, p = 0.014), and more often died on the pediatric ward (15/24 vs. 0/13, p < 0.001) or had received pediatric palliative care (7/24 vs. 0/13, p = 0.038). Among children with LSTL, most decisions were documented during clinical stability (15/24), involving a median of four physicians; a do-not-resuscitate order was documented in 16/24 cases.

Conclusions: In this cohort, LSTL was the most frequent end-of-life pathway among children with pre-existing neurologic disorders. Decisions were often documented before terminal deterioration and were usually multidisciplinary. These findings suggest that earlier advance care planning, structured, individualized documentation, and closer integration between pediatric neurology and pediatric palliative care may contribute to improving the quality and consistency of end-of-life care.