Purpose

To describe the modes of death (MOD), the elements related to the decision to forgo life-sustaining treatments (LST) as well as the medical and parental environment surrounding time of death in our pediatric intensive care unit (PICU).

Methods

This is a retrospective, single-center study from a Swiss PICU. All patients between 30 days and 18 years of age who died in our PICU from 2006 to 2019 were eligible for inclusion. Data were collected from patients’ record and from a standardized death form containing information on circumstances surrounding end-of-life. Patients’ and families’ characteristics as well as trends over time of MOD were evaluated.

Results

Of 6930 PICU admissions during the whole study period, 121 (1.7%) died in our PICU. Mortality significantly decreased from 2.9% in 2006 to 1% in 2019 ( p = 0.003). More than half of patients died after a decision to transition to comfort care (68.56%). Withdrawal and limitation of LST were the prevalent MOD (56%) with a significant increase in withdrawal over time. Primary diagnosis, limitation (vs. withdrawal) of LST, type of admission and families’ religious background are associated with longer latencies between admission to decision to comfort care and from decision to death. At least one parent was present in 94% of cases when LST were limited or withdrawn.

Conclusions

Most of the deaths follow LST limitation or withdrawal with increasing rates of withdrawal over time. We also showed that time latencies between admission and decision and from decision to death varies depending on MOD, patients’ characteristics and families ‘religious background.