Should a dying child have the right to decide between "heaven or the hospital?
An Oregon family’s decision to respect the end-of-life choice of their 5-year-old daughter has sparked a heated debate about this difficult question.
Juliana Snow has suffered from an incurable neurodegenerative illness called Charcot-Marie-Tooth disease, or CMT, since birth. The child can’t move or eat, wears a breathing mask at all times, and is confined to the four walls of her family’s Portland home.
According to her doctors, Juliana’s CMT has progressed to such a critical stage that even a minor cold could now kill her.
"For her, there is no light at the end of the tunnel," Dr. Danny Hsia, Juliana’s pulmonologist, told CNN. "She doesn't have a long time to live."
Watching their daughter suffer from this debilitating illness and understanding the inevitability of her early death, Juliana’s parents, who are Christians, have had to ask themselves a painful question: The next time their daughter gets sick, what will they do? They could either bring her to the hospital, where there’s a small chance her life could be saved, or she could remain at home -- where she would almost certainly die.
In a blog post on The Mighty earlier this year, Juliana’s mom Michelle Moon wrote that the couple, who also have a 6-year-old son, have decided to let the little girl make the choice for herself.
"Julianna made it clear to us that she does not want to go to the hospital again," Moon wrote. "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."
The mom recounted a recent conversation she’d had with Juliana, who was then 4-years-old, about heaven:
Mom: You don’t want to go to the hospital, right, J?
Juliana: I don’t like NT [naso-tracheal suction, the thing she hated the most from the hospital].
M: I know. So if you get sick again, you want to stay home?
J: I hate NT. I hate the hospital.
M: Right. So if you get sick again, you want to stay home. But you know that probably means you will go to heaven, right?
J: (nods)
M: And it probably means that you will go to heaven by yourself, and Mommy will join you later.
J: But I won’t be alone.
M: That’s right. You will not be alone.
In a follow-up blog post, published in June, Moon says she’s explained to her daughter that heaven is a place where "she will be able to walk, jump and play. She will not need machines to help her breathe, and she will be able to eat real food."
"We believe that sometimes it’s 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," Moon wrote. "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."
In response to the mom's blog posts, some have praised the family's decision, while others have been vehement in their criticism. The issue has even divided the medical ethics community.
"This doesn't sit well with me. It makes me nervous," Dr. Art Caplan, head of the Division of Medical Ethics at New York University's Langone Medical Center, 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 9 or 10."
Dr. Chris Feudtner, another renowned bioethicist and pediatrician at The Children's Hospital of Philadelphia, disagreed with this sentiment, however.
"To say [Juliana's] experience is irrelevant doesn't make any sense. She knows more than anyone what it's like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna," he said.
The child’s doctors and nurses also told CNN that they supported the family’s choice.
"You have to know what it's like to hold down a child and hear them scream so you can stick a tube down their nose. It's one thing to do that when you know you'll have a success at the end, but for Julianna, there is no success," said intensive care nurse Diana Scolaro.
Ultimately, Moon says she's "still scared of what is to come" and is petrified at the thought of losing her child. But she believes her daughter will know the best possible path for herself when the time comes.
"We have had more conversations, mostly initiated by Julianna," Moon wrote in June. "She’s scared of dying, but has, to me, demonstrated adequate knowledge of what death is. (J: 'When you die, you don’t do anything. You don’t think.') 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 honor her wishes."
Michelle Moon has a blog which documents her family's journey and Juliana's illness. Click here to read it.