Abstract

In my hospital experience working with families of seriously ill children, parents describe being stripped of confidence and having their functioning so compromised that they are unable to process facts or initiate action in a meaningful way. These narratives offer a glimpse into the minds of these parents and two things are clear: they love their children and they want to do the right thing. Treatment for pediatric brain tumors can last for long periods of time (months, even years) and cause significant damage even while seeking to save the child’s life. Over the course of time, the family dynamic changes. Several important themes emerge from these stories and are explored in this commentary. An overarching theme is the agony that these parents go through as they struggle to make life and death decisions on behalf of their children.