In this review, we examine features of ICU systems and ICU clinician training that can undermine continuity of communication and longitudinal guidance for decision making for chronically critically ill infants and children. Drawing upon a conceptual model of the dynamic interactions between patients, families, clinicians, and ICU systems, we propose strategies to promote longitudinal decision making and improve communication for infants and children with prolonged ICU stays.Data Sources:
We searched MEDLINE and PubMed from inception to September 2015 for English-language articles relevant to chronic critical illness, particularly of pediatric patients. We also reviewed bibliographies of relevant studies to broaden our search.Study Selection:
Two authors (physicians with experience in pediatric neonatology, critical care, and palliative care) made the final selections.Data Extraction:
We critically reviewed the existing data and models of care to identify strategies for improving ICU care of chronically critically ill children.Data Synthesis:
Utilizing the available data and personal experience, we addressed concerns related to family perspectives, ICU processes, and issues with ICU training that shape longitudinal decision making.Conclusions:
As the number of chronically critically ill infants and children increases, specific communication and decision-making models targeted at this population could improve the feedback between acute, daily ICU decisions and the patient’s overall goals of care. Adaptations to ICU systems of care and ICU clinician training will be essential components of this progress.