Calling the shots

Oregon parents allow sick girl, 5, to make end-of-life decision

Spa day #CMT #charcotmarietooth #spa #snoopy

A post shared by Michelle Moon (@julianna.yuri) on

For 5-year-old Julianna Snow, life has been a bleak series of rigid medical treatments and stints in the hospital as she has valiantly battled a rare illness known as Charcot-Marie-Tooth (CMT) disease. The neurodegenerative disease, which is incurable, prevents Julianna from being able to eat and breathe on her own — or even move. She has had a life almost completely deprived of choice. “For her, there is no light at the end of the tunnel,” her doctor, Danny Hsia, told CNN. “She doesn’t have a long time to live.” Something as simple as the common cold can be life-threatening for Julianna, and require a hospital stay with extreme measures used to keep her alive. Her parents, who are devout Christians, asked Julianna if she were to become gravely ill again whether she’d prefer to go to the “heaven or the hospital.” Julianna said she chose heaven.

“Julianna made it clear to us that she does not want to go to the hospital again,” Michelle Moon, her mother, wrote in a blog post. “Like so many kids who have had to face life-threatening illness, she is wise beyond her years … I do not think that she will survive another illness, especially without aggressive intervention.” Moon went on to recount a conversation with Julianna in which the little girl lamented the pains of enduring naso-tracheal suction, one of the uncomfortable treatments she receives, and worried about dying alone. Julianna, weary of hospital visits, told her mom she wanted to stay home, even if it meant going to heaven.

Her parents have decided to accept Julianna’s decision to die on her own terms. In a follow-up blog post, Moon explained their support for her daughter. “We believe that sometimes in an act of love not to do ‘everything’ to extend life and focus instead on giving your child the most beautiful life possible for as long as you’re allowed,” she wrote.

Not surprisingly, the decision has set off controversy, with some expressing support — and others, some of them medical professionals, hurling criticism at the decision. “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,” Dr. Art Caplan, head of the Division of Medical Ethics at New York University’s Langone Medical Center said in an interview with CNN. “That kind of thinking doesn’t really develop until around age 9 or 10.”

Not everyone in the medical community is skeptical of the decision, however. Chris Feudtner, an esteemed bioethicist and pediatrician at The Children’s hospital of Philadelphia has a completely different view of the situation, and a different philosophy. “To say [Julianna’s] experience is irrelevant doesn’t make any sense,” Feudtner said. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.” Julianna’s own doctors agree with and support the family’s decision.

Read the full story at CNN.

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