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ABSTRACT
The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and space. In this paper, we report on a long-term ethnographic study of a Pediatric Palliative Care Team (PPCT). Using the concepts of spatiality and temporality; Deleuze’s concepts of smooth and striated spaces; Innis’s concepts of space and time biases; Foucault’s concept of heterotopian space—places with multiple layers of meaning; and a related concept of heterokairoi—moments in time with multiple possibilities—we consider how the PPCT constructs and reconstructs meaning in the midst of chaos, ethical dilemmas, and heartbreaking choices.
Acknowledgments
The authors would like to acknowledge and thank Dr. Jon Crane for his significant and valuable suggestions to revisions to the manuscript. In addition, we greatly appreciate the staff, patients, and families who invited us in to their lives during these vulnerable times and allowed us to share their experiences.