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

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.

Transitions to and from the acute inpatient care setting for children with life-threatening illness.

Children with life-threatening illnesses (LTIs) are hospitalized more often and spend more days in the hospital than children without LTIs. Hospitalizations may be associated with changes in health status of children with LTIs and thus alter their care needs significantly. Transitional care is particularly relevant for this population. Pediatric palliative care clinicians and teams are well-positioned to improve transitional care of children with LTIs by facilitating communication between clinicians and educating clinicians about issues related to children with LTIs.

Managing medical equipment used by technology-dependent children: evaluation of an instructional tool for pediatric residents and medical students.

OBJECTIVES: To evaluate the effectiveness of a workshop on managing medical devices used in technology-dependent children. METHODS: Study participants included residents and medical students rotating in the pediatrics department at the time of the study. A workshop was conducted consisting of learning stations for common medical devices, including brief presentations and opportunities for hands-on practice with each device. Participants completed surveys before and after the workshop assessing their perceived ability to manage medical equipment before and after the workshop and their ongoing learning needs. RESULTS: All participants indicated a substantial need for training on how to manage medical devices used by technology-dependent patients. Scores for perceived ability to manage the devices improved significantly after workshop participation for nearly all devices taught. CONCLUSIONS: Medical trainees have significant learning needs for managing devices used by technology-dependent patients. Hands-on, small-group training can be an effective instructional tool for improving confidence in these skills.