The Production of Uncertainty in Childhood Heart-Lung Failure

• In Event: Diagnosing Death: Critical STS Perspectives - II

Abstract

Comprehensive data on the prevalence, morbidity, and mortality of childhood heart-lung failure is limited, but the incidence is estimated to be 10% of pediatric hospitalizations. Daily critical care costs can exceed $3500 per child, and often surpass $1 million for a prolonged stay. Advances in mechanical support technologies allow for treatment of heart-lung failure over days, weeks, or even months depending on the child’s underlying condition. This paper seeks to explore the uses and limitations of "illness experience" (Kleinman 1986, Scheper-Hughes 1987, Rabinow 2008) during rare events in routine medical practice of a pediatric intensive care unit (PICU) at a large academic medical center in the Midwest that are currently understood solely through large databases.


This paper examines – through two years of participant-observation during over two-hundred cannulation events in the PICU – the application of mechanical circulatory support. These comprise three forms of continuous heart-lung bypass used in the pediatric setting to prolong a child’s life in the setting of extreme illness (such as heart, lung, or organ failure). I examine the frequency, severity, and extent of variation in a child’s well-being during heart-lung failure as related to same child’s intervention status and health at discharge. By examining cannulation events I understand how providers and families each manage “episodic” (Strawson 2004, Atkinson 1995) events in relationship to mortality and the uncertainty (Hacking 1990, Berlant 2011) inherent in life prolongation after heart and lung failure.

Author

• Krisjon Rae Olson, Krisjon Olson