Abstract
Background: Structured and appropriately timed approach to end-of-life care decision-making has become an important part of care in children with terminal illnesses. Despite its importance, many families and medical care teams face these issues fare to late.
Objective: Our aim was to retrospectively evaluate end-of-life care decisions (EOLCD) made in children who died in a university hospital's respiratory high dependency unit.
Methods: Medical files of children who died in a 14-year period were analyzed for the relevant medical history and the EOLCD process.
Results: 20 children out of 16.800 patients treated in the observed period, died. Mean age at death was 2.4 yrs, SD 6.7, 65% were girls. Respiratory arrest was the cause of death in 18, 2 died of cardiac arrest. All patients had underlying conditions (60% neurologic, 30% syndromatic and rare diseases, 10% pulmonary). Only one child had no advanced care plan and died following unsuccessful cardiopulmonary resuscitation. 15 patients had a structured EOLCD in 4 the agreements were not formalized. The shortest time of death after EOLCD was 1 day (median 3 days, range 1-708 days). Family members consented the advanced plan in all cases.
Conclusions: End-of-life care decision-making was perused in almost all children with serious life limiting conditions. More attention for timely engagement in the process should be advocated.
- Copyright ©the authors 2016
