Challenging patient deaths in pediatric oncology

Purpose: Pediatric oncologists look after patients and their families for extended periods of time when they are diagnosed and treated for cancer. Twenty percent of these children will die while under their care. The purpose of this study was to explore what makes patient deaths challenging for pediatric oncologists. Methods: Twenty-one Canadian pediatric oncologists were interviewed about their experiences with patient death and were probed about the factors that make patient deaths particularly challenging. Data were analyzed using the grounded theory method. Results: Challenging factors pertaining to patient death were categorized into three main domains. Relational factors included dealing with families perceived as challenging; identifying with parents; and having long-term relationships and special connections with patients and their caregivers. The second domain captured the process of death and dying and included death after curative treatment was stopped; death caused by complications; and unexpected deaths. The third domain encompassed patient factors that included suffering of the child, and the sense that no child should die. Conclusions: The types of relationships pediatric oncologists have with patients and caregivers, and the process by which children die affects pediatric oncologists’ perceived level of difficulty in coping with the death. The findings point to the complexity of working with children where parents are included in the decision-making processes around a child’s treatment. Implementation of structured review opportunities around patient death and associated decision-making within a multidisciplinary healthcare team may alleviate some of the emotional burden associated with patient deaths.