Exploring how claims of 'suffering' are operationalized in pediatric critical care.

Abstract

Context: Identifying when a child is suffering can be incredibly challenging. Understanding how the term 'suffering' is used in pediatric critical care - and specifically end of life care - is critical for clinical decision-making, communication, and goal-setting between healthcare providers and families. To gain insight into this complex question, we employed ethnographic methods to explore the underlying meanings and goals associated with the use of this term by clinicians, patients, and families in the Pediatric Intensive Care Unit (PICU).

Objectives: To explore how the term 'suffering' is operationalized by clinicians and families in Pediatric Intensive Care Units (PICUs) and its implications for decision-making.

Methods: This study was conducted in three specialized PICUs within a large tertiary children's hospital. This exploratory qualitative study used ethnographic methods, including narrative literature review, analysis of verbatim transcripts of 30 care conferences and 50 ethnographic observations involving physicians, nurses, and families. Analyses employed an iterative, interpretive approach to identify key themes across data sources.

Results: This study identified three main themes: 1) 'Suffering' was rarely defined, 2) Discussions of patient 'suffering' included collateral impacts on providers and families, in addition to impacts on patient experience; and 3) Physicians used 'suffering' to pivot goals of care, while parents used it variably.

Conclusion: These findings suggest that 'suffering' is often invoked in the PICU with little specificity, is used to signal provider or caregiver distress, and is used with the intention to shift goals of care in a manner not always consistent with family values or interpretations. Recognizing the implicit messages conveyed through language may support families and healthcare providers to better communicate their goals and preferences, fostering collaborative decision-making and enhancing patient outcomes in the PICU and during end-of-life care.