“I was able to still be her mom”—parenting at end of life in the pediatric intensive care unit

Objectives: The death of a child in the pediatric intensive care unit is perhaps one of the most devastating and challenging experiences a parent can ever endure. This article examines how parents of children dying in the pediatric intensive care unit understood their role and discusses implications for clinical care and policy. Design: Retrospective, qualitative study. Setting: Two pediatric intensive care units located in children’s hospitals within academic medical centers in the northeastern United States. Subjects: Parents of 18 children who died in the pediatric intensive care unit. Interventions: Semistructured telephone interviews, digitally recorded and transcribed. Measurements and Main Results: Many of the factors deemed important by the parents related to their capacity to be a “good parent” to their child throughout his or her stay in the pediatric intensive care unit. Specifically, parents sought meaningful ways to express and assert their parenthood across three domains: 1) providing love, comfort, and care; 2) creating security and privacy for the family; and 3) exercising responsibility for what happens to one’s child. Conclusions: Parents’ ability to fulfill the essential features of their role as parents of children dying in the pediatric intensive care unit shapes how they perceive the quality of the experience. Pediatric intensive care unit clinical care and policies can and should uphold and protect these features enabling parents to feel that, despite the outcome, they had done their best on behalf of their children.