Can a terminally ill five-year-old child decide whether to live or die?
As far as a family in Oregon is concerned, the answer is yes. But other people are not so sure whether it's the right call.
Michelle Moon recently shared online the touching story of Julianna Snow, her five-year-old daughter, who is suffering from a neurodegenerative disorder called Charcot-Marie-Tooth disease. CNN then came up with a two-part series on Julianna dramatising the struggles the child and her family are going through. The story has since then been picked up by other news organisations.
According to various reports, Julianna's ailment has caused her to become so weak that even a minor cold could kill her.
The doctors have given up on Julianna, saying that if she becomes ill again, she would likely be sedated and placed on a respirator for the rest of her life until she breathes her last.
With no hope to cling to, Michelle and her husband Steve Snow decided to offer their daughter a choice, asking her: If you become ill again would you want to go to the hospital again, or to heaven instead?
Julianna chose heaven.
In her online post, Michelle recounts a conversation she had with her daughter as transcripted by CNN:
Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?
Julianna: Not the hospital.
Michelle: Even if that means that you will go to heaven if you stay home?
Julianna: Yes.
Michelle: And you know that mommy and daddy won't come with you right away? You'll go by yourself first.
Julianna: Don't worry. God will take care of me.
Michelle: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.
Julianna: I understand.
Michelle: (crying) - I'm sorry, Julianna. I know you don't like it when I cry. It's just that I will miss you so much.
Julianna: That's OK. God will take care of me. He's in my heart.
If Julianna were an adult, it would be less controversial if she decided to say "enough" of the pain she suffers from whenever she is hospitalised.
But the problem is that Julianna is just 5 years old, raising the question on whether it was right for her parents to have allowed her to make a life-and-death choice.
Michelle received a mixed response from her blog post, with some readers voicing their support for her.
But others questioned her and her husband's decision. "Unbelievable that any parent would think a four-year-old (Julianna's age then) is able to understand or make a decision on life," Susan Timko wrote in the comments section. "Clearly that mother asks her leading questions. This article sickens me. I have a child with a chronic illness as well."
Following the criticism, Michelle wrote a second blog explaining her decision. She said it pains her and her husband to contemplate life without their child. She said her first instinct was to continue taking Julianna to the hospital, but they decided to honour Julianna's decision instead.
"We have had more conversations, mostly initiated by Julianna," Michelle wrote. "She's scared of dying, but has, to me, demonstrated adequate knowledge of what death is. She hasn't changed her mind about going back to the hospital, and she knows that this means she'll go to heaven by herself. If she gets sick, we'll ask her again, and we'll honour her wishes."
Michelle said Julianna's doctors support their decision to honour their child's wish.
But other doctors disagree on whether a child can already make the call between life and death. "This doesn't sit well with me. It makes me nervous," Art Caplan, the founding director of the Division of Medical Ethics at New York University, told CNN. "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 nine or 10."
Michelle said Julianna has been out of the hospital for a year now and that she's enjoying her time with her while she's still breathing. When Julianna becomes gravely sick again, that will be the time when they will make the ultimate decision on whether to take their daughter back to the hospital—or just allow her to "go to heaven" inside their home.
