Living with Grief Following Removal of Infant Life Support: Parents' Perspectives

Research findings reported in the literature about making life and death decisions for critically ill infants in the neonatal ICU focus primarily on the experiences of health care providers and the ethical dilemmas surrounding these decisions. Fewer studies focus on parents' experiences in making decisions about discontinuing life support for their infant, and even fewer address what life is like for parents following the deaths of their infants. This article expands on the concepts identified by parents as factors in their decision making and on the facilitators and barriers parents faced, and continue to face, in their grieving process.