A five-year-old girl in Portland, Oregon, has been given by her parents the option of refusing further medical treatment in order to get to heaven, according to WGNO.
The girl, Julianne Snow, has been living with an incurable neurodegenerative condition called Charcot-Marie-Tooth disease. The disease, which has been gradually weakening her breathing muscles, has the potential to progress the next cold Julianne contracts into pneumonia.
Should this happen, doctors are unsure whether or not they could save her. If they are, they believe she will need to be sedated on a respirator for the remainder of her life.
Julianne’s parents, Michelle Moon and Steve Snow, asked their daughter if she would like to go to the hospital for treatment next time she becomes dangerously ill, or if she would like to stay home, where she will die. Julianne said she doesn’t want to go to the hospital because she wants to go to heaven.
“I hate the hospital,” she told her mother. Her parents, who belong to Portland’s City Bible Church, had planned on taking the girl to the hospital next time she took ill until Julianne told them she would rather go to heaven.
“Heaven is good,” Julianne said. “But I don’t like dying.”
This decision has sparked a large controversy. Critics ask whether Julianne should be allowed to make a life-ending decision like this, regardless of what her parents might want.
Art Caplan, a bioethicist at New York University, has problems with Julianne’s decision. “It makes me nervous,” he said in response to Julianne’s mother’s blog.
He believes Julianna might be “capable of deciding what music to hear” or “what book [she] might want to read.” Art contends that an understanding of the concept of death “does not develop until around age 9 or 10.”
Dr. Chris Feudtner, a pediatrician and ethicist at the University of Pennsylvania, disagrees. “She knows what it’s like more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianne.”