Exploring How Claims of "Suffering" are Operationalized in Pediatric Critical Care

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.