Here’s a short but ineffably sad piece at PuffHo about a five-year old girl from Oregon, Juliana Snow, who has a horrible and terminal neurological disease that will end her life her very soon:
Juliana Snow has suffered from an incurable neurodegenerative illness called Charcot-Marie-Tooth disease, or CMT, since birth. [JAC: description of the illness here.] 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.
Juliana is sick of repeated visits to the hospital, and so her Christian parents have had a conversation with her about whether she wants to prolong the largely fruitless treatment, which buys her a few more weeks of misery, or simply stay at home and die in the presence of her family. The sticking point for me is that they’re telling her what I see as a lie: that she’ll go to Heaven, where she’ll some day be reunited with her family.
On her own website, Juliana’s mother Michelle recounts a conversation she had with her daughter:
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?
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.
J: Do some people go to heaven soon?
M: Yes. We just don’t know when we go to heaven. Sometimes babies go to heaven. Sometimes really old people go to heaven.
J: Will Alex [her 6-year-old brother] go to heaven with me?
M: Probably not. Sometimes people go to heaven together at the same time, but most of the time, they go alone. Does that scare you?
J: No, heaven is good. But I don’t like dying.
M: 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.
In a later post, Michelle recounts what she told Juliana about Heaven:
We had taught Julianna our belief that there is a better place for her. In heaven, 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. There will be no hospitals. Very clearly, my 4-year-old daughter was telling me that getting more time at home with her family was not worth the pain of going to the hospital again. I made sure she understood that going to heaven meant dying and leaving this Earth. And I told her that it also meant leaving her family for a while, but we would join her later. Did she still want to skip the hospital and go to heaven? She did.
PuffHo recounts how the parents’ wish to give Juliana the choice is controversial among medical ethicists:
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.
In general I agree with Feudtner. What harm is being done here, even if we’re pretty sure that Juliana isn’t going to go to Heaven after she dies? How much of the child’s decision really rests on her notion that she’ll have a nice afterlife, versus on the reality of the medical torture she’s enduring now? This is a tough question, but I can’t bring myself to urge the parents (who, as Christians, wouldn’t do it anyway) to tell the child that when she dies, that’s it. This may be one of those rare cases where faith-based delusion is actually helpful.
When I was young, my 13-year-old cousin had liver cancer, and we all knew he was going to die. But he was told he had “pleurisy” and would eventually recover. Whenever I visited him in the hospital, I felt horrible, as if we were all participating in some hideous charade, and that my cousin really should be told that he was going to die. But he was 13, not 5.
As a nonbeliever, I think that Juliana’s parents are deluding her with false promises of her fate after death. But I see no way to prevent them from doing so, and, in truth, little harm in it. Would she seek more medical care if she knew death was final? Can a five-year-old make any kind of responsible decision about this? Should the parents have decided for her, without deluding her about Heaven?
These are difficult questions, and I have no answer, though I lean towards accepting the parents’ wishes. Reader are invited to weigh in below.