Five-year-old Julianna Snow is suffering from spinal muscular atrophy, “a hereditary disease where neurons in the brain and spinal cord are progressively destroyed.” It’s an incurable disease and catching a cold virus could be enough to kill her.
But Julianna says that she doesn’t want to go back to the hospital if she gets sick again.
She’d rather stay at home, die, and go to heaven.
Bioethicist Art Caplan has read [mother] 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.
“To say her experience is irrelevant doesn’t make any sense,” [pediatrician and ethicist Dr. Chris Feudtner] says. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”
Remember: This is very different than the typical cases we hear about parents who are willing to sacrifice their children for the sake of religion. In this case, Julianna’s desire to go to heaven is almost irrelevant. It’s not like her parents are allowing her to die like the children of Christian Scientists. They’re trying to do whatever they can to make her daughter happy with the time she has left.
In other words, you could take religion out of this story and I don’t think my reaction would be any different. It’s still a question of whether a child should have the right to do what I believe adults should have a right to do: decide how they want to end their lives if death is imminent.
Going to the hospital, in this case, won’t prolong her life. So it seems cruel to tell her she must go there when she’d rather die at home.
(Screenshot via CNN video)