Unexpected Survivors: Children With Life-Limiting Conditions of Uncertain Prognosis

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Abstract

Objective:

Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers.

Study Design:

This is a retrospective cohort study conducted in a tertiary-care children’s hospital in North Carolina. “Unexpected survivors,” defined as children who survived despite a prognosis of imminent death or significantly longer than prognosticated by health-care providers, were identified from among 349 children enrolled in a pediatric palliative care program between March 2008 and October 2012. Children’s clinical courses were followed until September 2015 or their death.

Results:

Eighteen (5%) children were identified as unexpected survivors; 17 (10 girls and 7 boys) were included. Congenital anomalies were the most common diagnoses. Neonatal intensive care unit was the most frequent setting of prognostication. Thirteen children used some form of medical technology at the time of prognostication. Eleven children received hospice services. Eight died during the observation period but survived significantly longer than expected (median survival time 1.5 years), and 9 survived beyond the observation period (median survival time 5.9 years).

Conclusions:

Unexpected survivors are a small group of children with life-limiting conditions. Clinicians should be aware of the possibility of prognostic inaccuracy, able to communicate prognostic uncertainty to parents, and engage supportive services when prognosticating poor survival. Prospective studies are needed to understand outcomes of children with life-limiting illnesses of uncertain prognosis.

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