Parental Physical Proximity in End-of-Life Care in the PICU

Abstract

OBJECTIVE: Health professionals in PICUs support both child and parents when a child’s death is imminent. Parents long to stay connected to their dying child but the high-tech environment and treatment implications make it difficult to stay physically close. This study explores in what sense physical aspects of end-of-life care in the PICU influence the parent-child relationship. DESIGN: Retrospective, qualitative interview study. SETTING: Level 3 PICU in Erasmus Medical Center in the Netherlands. PARTICIPANTS: Thirty-six parents of 20 children who had died in this unit 5 years previously. MEASUREMENTS AND MAIN RESULTS: Parents vividly remembered the damage done to the child’s physical appearance, an inevitable consequence of medical treatment. They felt frustrated and hurt when they could not hold their child. Yet they felt comforted if facilitated to be physically close to the dying child, like lying with the child in one bed, holding the child in the hour of death, and washing the child after death. CONCLUSIONS: End-of-life treatment in the PICU presents both a barrier and an opportunity for parents to stay physically connected to their child. Parents’ experiences suggest that aspects of physicality in medical settings deserve more attention. Better understanding of the significance of bodily aspects-other than pain and symptom management-improves end-of-life support and should be part of the humane approach to families.