A Portland family is allowing their terminally-ill 5-year-old daughter decide whether she should continue seeking medical treatment or be allowed to die if her condition worsens, CNN reported.
“Very clearly, my daughter was telling me that getting more time at home with her family was not worth the pain of going to the hospital again,” Michelle Moon said of her daughter, Julianna Snow. “I made sure she understood that going to heaven meant dying and leaving this Earth. And I told her that it also meant leaving her family for a while, but we would join her later. Did she still want to skip the hospital and go to heaven? She did.”
Moon’s daughter is currently living with a severe case of Charcot-Marie-Tooth disease (CMT), an incurable neurodegenerative disease, which has affected her respiratory muscles to the point where even a cold could lead to her developing pneumonia. The girl currently uses a breathing mask, and would require a respirator and heavy sedation even if she survived such a scenario.
Fields posted an excerpt online from a conversation she had with Julianna regarding the decision:
Me [Fields]: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
J: not the hospital
M: Even if that means that you will go to heaven if you stay home?
M: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.
J: Don’t worry. God will take care of me.
The family’s decision has spurred a mixed reaction in medical circles, some of whom have debated whether Julianna can reasonably make this kind of judgement regarding her life.
“This doesn’t sit well with me. It makes me nervous,” said Art Caplan, a professor at the Langone Medical Center at New York University. “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 pediatrician Chris Feudtner, who heads American Academy of Pediatrics section on hospice and palliative medicine, believes Julianna is capable of making the decision, based on Fields’ writings.
“To say her experience is irrelevant doesn’t make any sense,” Feudtner told 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.”
Danny Hsia, who has treated the girl, also said that he trusted Fields and her husband, Steve Snow.
“For her, there is no light at the end of the tunnel,” Hsia said of the girl. “She doesn’t have a long time to live.”