Should a child decide her own end-of-life care?
For adults, end-of-life decision-making is relatively straightforward: Basically, we get to decide how much medical treatment we want and don't want.
But how much say should a child get? And at what age?
Without realizing it, Michelle and Steve had stepped into a heated debate.
Julianna toward the end of her third hospitalization in October 2014.
Julianna toward the end of her third hospitalization in October 2014.
Bioethicist Art Caplan has read Michelle's blogs, and he thinks she's made the wrong decision.
"This doesn't sit well with me. It makes me nervous," he says. "I think a 4-year-old might be capable of deciding what music to hear or what picture book they might want to read. But I think there's zero chance a 4-year-old can understand the concept of death. That kind of thinking doesn't really develop until around age 9 or 10."
He says Julianna's parents shouldn't put any stock in what she has to say about end-of-life decisions. Maybe she chose heaven over the hospital because she feels how much her parents hate to see her suffer; young children often pick up cues from their parents and want to please them, he says.
Caplan, before he started the bioethics program at New York University a few years ago, worked at the University of Pennsylvania and consulted on end-of-life cases at Children's Hospital of Philadelphia with Dr. Chris Feudtner, a pediatrician and ethicist there. Caplan respects him a great deal.