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Technological advancements and rapid expansion in the clinical use of extracorporeal life support (ECLS) across all age ranges in the last decade, including during the COVID-19 pandemic, has led to important ethical considerations. As a costly and resource intensive therapy, ECLS is used emergently under high stakes circumstances where there is often prognostic uncertainty and risk for serious complications. To develop a research agenda to further characterize and address these ethical dilemmas, a working group of specialists in ECLS, critical care, cardiothoracic surgery, palliative care, and bioethics convened at a single pediatric academic institution over the course of 18 months. Using an iterative consensus process, research questions were selected based on: (1) frequency, (2) uniqueness to ECLS, (3) urgency, (4) feasibility to study, and (5) potential to improve patient care. Questions were categorized into broad domains of societal decision-making, bedside decision-making, patient and family communication, medical team dynamics, and research design and implementation. A deeper exploration of these ethical dilemmas through formalized research and deliberation may improve equitable access and quality of ECLS-related medical care.
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INTRODUCTION: Improving family centered care in the PICU requires understanding the milestones that families need assistance preparing for as well as factors that facilitate or obstruct preparedness. We present a model of family preparedness for transitions in the PICU based on semistructured interviews with clinicians and families that is designed to improve family centered care through the reduction of failed or traumatic transitions. METHOD: We conducted semistructured interviews with 20 clinicians and 25 families in an academic PICU. Transcript analysis focused on identifying factors facilitating or obstructing family preparedness for care transitions. We analyzed interview transcripts for emergent themes and metathemes using grounded theory methodology. RESULTS: Family preparedness for care transitions is dependent upon both cognitive and emotional preparedness. Six metathemes form a novel model for understanding the factors influencing both components of preparedness and their interrelationship. Specifically, family preparedness is influenced by (a) individualized backgrounds, coping skills, and support systems as well as the (b) emotional context, (c) care environment, (d) course of care, (e) content of preparatory information, and (f) manner in which care is coordinated to effectively deliver information. We also describe 10 transitional categories that provide context for application of the model. DISCUSSION: Cognitive and emotional preparedness for care transitions in the PICU develops through attentiveness to six features. The conceptual model presented here will allow clinicians to support family centered care through interventions to facilitate a shared development of expectations for the future and reduce the risk of failed or traumatic transitions. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
