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Parents Allow Terminally Ill Child to Decide End-of-Life Care

The Short of It

The parents of a terminally ill 5-year-old Portland, Ore., girl plan to honor her wishes to die at home rather than endure another painful hospital stay.

The Lowdown

It's heartbreaking to see photos of little Julianna Snow, who suffers from an incurable neurodegenerative illness known as Charcot-Marie-Tooth disease. She could die from something as simple as a cold, although doctors might be able to save her. But Julianna's quality of life would deteriorate further—she already can't eat, run or even play. Likely the little girl would have to be hooked up to a respirator and sedated. The last time she went to the hospital, Julianna had to endure painful nasotracheal suctioning several times a day.

Her experience led her to the decision to stay home next time she gets sick, instead of going to the hospital. Her parents Michelle Moon and Steve Snow say she understands that she will die if she stays home. They have had several conversations with Julianna about what heaven is: a place where God and her great-grandmother live and she can do the things other kids get to do. Her parents say Julianna also understands that neither her parents nor her big brother will be able to go with her at the same time.

Moon shared the conversation she had with Julianna about the decision to end her own life on her blog:

M: 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?

J: Yes.

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.

M: 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.

J: I understand.

M: (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.

J: That's OK. God will take care of me. He's in my heart.

Moon says she realized after this conversation that sending Julianna to the hospital again would be selfish.

The Upshot

It's hard to put myself in Moon's place, even though I too have a 5-year-old daughter. How can you possibly come to terms with the idea of losing your precious child at such a young age? By the same token, how could you stand to watch your child suffer day in and day out? A child is supposed to be carefree and play, and just, well, be a kid. It seems terribly unfair otherwise, and who knows what a mom would be pushed to do or think in this unthinkable circumstance.

That being said, as parents we are charged with making sometimes impossible choices for our children, in their best interest. Because they are just children. So allowing them to make a decision so big, so difficult, that even an adult would struggle desperately with it, is hard to justify. But again, we cannot know what this family has endured. We can only wish them strength and comfort.

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