Medical ethics experts are divided about whether a little girl in Oregon who has a terminal illness should be able to have a say in whether she dies at home or in the hospital.
Julianna Snow, 5, has a severe neuromuscular disease called Charcot-Marie-Tooth. Her parents have blogged about the heartbreaking ordeal and Julianna’s story was recently featured in a two-part “heaven over hospital” series on CNN.
Julianna’s disease has progressed to the point where she can no longer move, she is fed through a feeding tube and she wears a breathing mask at all times. There is no cure for CMT and Julianna’s doctors say she might not survive even a minor cold.
Faced with the difficult choice of whether they would return to the hospital upon her next illness or forgo treatment – knowing it would be unlikely to save her life anyway – so that she could stay at home, her parents decided to talk about it with their daughter, CNN reports.
Julianna’s mom, Michelle Moon, blogged at themighty.com about one of those conversations. She wrote, in part:
“Julianna: Mom, do you want me to get a shot?
Me: It depends. If you need the shot…
J: Do you want me to go the hospital and get a shot?
M: You don’t want to go to the hospital, right, J?
J: I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital].
M: I know. So if you get sick again, you want to stay home?
J: I hate NT. I hate the hospital.
M: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
M: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
J: But I won’t be alone.
M: That’s right. You will not be alone.”
Art Caplan, a bioethicist at New York University who read Michelle’s blog posts, tells CNN he believes Julianna’s parents might be making 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.”
But Dr. Chris Feudtner, a pediatrician and ethicist at Children’s Hospital of Philadelphia, disagrees.
“To say her experience is irrelevant doesn’t make any sense,” he tells CNN. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”
Aside from these expert opinions, there are also hundreds of people commenting on various news stories about Julianna and offering their own judgments. While most are supportive, others attack the parents’ decision, criticize the family’s dialogue about heaven or even question the parents’ motives.
But anyone who reads Julianna’s story and feels compelled to offer an opinion should stop and realize how little they know or can even comprehend about this family’s situation. We haven’t watched this little girl suffer with no hope of a cure. Ethical dilemma aside, the only thing anyone should take away from the story is absolute heartbreak and sympathy for this precious 5-year-old and her family.
Photo courtesy of CNN.com