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Exploring How Claims of "Suffering" are Operationalized in Pediatric Critical Care
Karolina Grekov1, Jason Batten2, Tyler Tate3
1Department of Pediatrics (K.G.), Boston Children's Hospital, Boston, Massachusetts, USA.
Insights
Understanding child suffering in pediatric intensive care is challenging. The term "suffering" is often used vaguely, impacting care goals and family communication.
Area of Science:
- Pediatric Critical Care
- Medical Ethics
- Qualitative Research
Background:
- Assessing child suffering in pediatric intensive care units (PICUs) is complex.
- Understanding the term "suffering" is crucial for clinical decisions, communication, and goal-setting in end-of-life care.
- Ethnographic methods were used to explore meanings of "suffering" among clinicians, patients, and families in the PICU.
Purpose of the Study:
- To investigate how clinicians and families operationalize "suffering" in PICUs.
- To analyze the implications of "suffering" discussions on decision-making processes.
Main Methods:
- Qualitative exploratory study using ethnographic methods.
- Analysis of 21 care conference transcripts and 50 ethnographic observations.
- Iterative, interpretive approach to identify themes in data from physicians, nurses, and families.
Main Results:
- "Suffering" was infrequently defined explicitly.
- Discussions of patient suffering encompassed patient experience, and collateral impacts on providers and families.
- Physicians used "suffering" to shift goals of care; parents' usage was variable.
Conclusions:
- "Suffering" in the PICU lacks specificity, signals distress, and can shift care goals inconsistently with family values.
- Recognizing implicit linguistic messages can improve communication, collaborative decision-making, and patient outcomes.
- Enhanced communication regarding goals and preferences is vital for pediatric end-of-life care.
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 21 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.
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