Parents Let Terminally Ill 5-Year-Old Daughter Make Her Own End-Of-Life Decision — And Choose ‘Heaven’ Over Hospital

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A 5-year-old girl with a rare, incurable disease told her family that she’d rather go to heaven than go back to the hospital — and her parents are honoring her request.

Michelle Moon and Steve Snow‘s daughter Julianna has a neurodegenerative illness called Charcot-Marie-Tooth disease, which renders her coughing and breathing muscles so weak that she will likely end up sedated on a respirator with very little quality of life.

What Julianna’s religious parents have chosen to do has sparked a huge debate: they asked their daughter if she would want to go to the hospital the next time she falls ill, or if she wants to stay home — where she would die and “go to heaven.”

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Before asking her daughter’s thoughts on the matter, Michelle searched for guidance about having end-of-life talks with a young child.

Finding nothing, she contributed to The Mighty — a website where people write about dealing with disabilities and diseases — to post the discussion she had with Julianna in which she stated she didn’t want to go to the hospital again.

The conversation went as follows:

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… I hate NT (naso-tracheal suction, where a tube was placed down her nose into her lungs without sedation). I hate the hospital.
Michelle: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
Julianna: (nods)
Michelle: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
Julianna: But I won’t be alone.
Michelle: That’s right. You will not be alone.
Julianna: Do some people go to heaven soon?
Michelle: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.
Julianna: Will Alex (her 6-year-old brother) go to heaven with me?
Michelle: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?
Julianna: No, heaven is good. But I don’t like dying.
Michelle: I know. That’s the hard part. We don’t have to be afraid of dying because we believe we go to heaven. But it’s sad because I will miss you so much.
Julianna: Don’t worry, I won’t be alone.
Michelle: I know. I love you.
Julianna: Madly
Michelle: Yes, I love you madly. I’m so lucky.
Julianna: And I’m so lucky.
Michelle: Why?
Julianna: Because you love me madly.

Before hearing Julianna’s wishes Michelle and Steve had planned to take their daughter to the hospital once she gets another infection.

But now, they’ve changed their minds. Michelle told reporters:

“She made it clear that she doesn’t want to go through the hospital again. So we had to let go of that plan because it was selfish.”

While most readers were supportive of the parents’ decision, some critics expressed that Michelle and Steve are making a big mistake.

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Bioethicist Art Caplan thinks Julianna’s parents shouldn’t listen to what she has to say about end-of-life decisions, explaining that the child might have chosen heaven over the hospital because she knows how much her parents hate to see her suffer. He said:

“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.”

This is just so difficult and sad a situation for a parent.

What do YOU think?


[Image via Julianna Yuri.]

Oct 28, 2015 2:33pm PDT

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