• Katherine L Marcus, Carrie M Henderson, and Renee D Boss.
• 1Johns Hopkins University School of Medicine, Baltimore, MD. 2Division of Pediatric Critical Care Medicine, Center for Bioethics and Medical Humanities, University of Mississippi Medical Center, Jackson, MS. 3Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Berman Institute of Bioethics, Baltimore, MD.
• Pediatr Crit Care Me. 2016 Aug 1; 17 (8): 743-52.

ObjectivesIn 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 SourcesWe 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 SelectionTwo authors (physicians with experience in pediatric neonatology, critical care, and palliative care) made the final selections.Data ExtractionWe critically reviewed the existing data and models of care to identify strategies for improving ICU care of chronically critically ill children.Data SynthesisUtilizing 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.ConclusionsAs 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.

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