Many of us dream of watching our children grow up some day. Julianna Snow’s parents don’t have that option.
Julianna is a 5-year-old girl from Oregon who suffers from Charcot-Marie-Tooth disease, an incurable neurodegenerative disorder that will inevitably lead to her death. But Julianna and her parents, Michelle Moon and Steve Snow, have decided that the next time infection strikes, she won’t be going to the hospital. Instead, Julianna has made it clear that she would rather stay home and go to heaven.
Michelle has described heaven to her daughter as a place where she can play and eat, unlike on Earth. She and Steve have explained that neither they nor Julianna’s brother will be in heaven when she gets there. But Julianna’s condition is so poor that even a cold could give her a case of pneumonia that her doctors could not likely treat — and even if they could, she would be placed on a respirator and sedated with little quality of life, CNN reported.
Michelle started a blog about dealing with devastating diseases, where she posted the conversation she had with Julianna about her not wanting to go back to the hospital. According to the conversation, Julianna knows that if she stays home she will die.
But bioethicist Art Caplan told CNN that a child probably doesn’t fully understand death until he or she is about 10 years old, and that perhaps Julianna has decided to stay home based on cues she has picked up from her parents — maybe she didn’t want them to suffer.
Others assert that it’s unethical to say Julianna’s experience is irrelevant. Chris Feudtner, a pediatrician and ethicist at Children’s Hospital of Philadelphia who used to work with Caplan, used to ask about the wishes of all his pediatric patients. He told CNN, “Palliative care isn’t about giving up. It’s about choosing how you want to live before you die. This little girl has chosen how she wants to live.’”
If death is Julianna’s only option, than it only seems fair that she die in peace and comfort, just as those who are placed in hospice care. Instead, because she is a child, we are bombarded with arguments about the sanctity of life and the inability of a 5-year-old to make a decision this extreme.
The issue lies in the fact that our culture doesn’t know how to come to grips with death as inevitable. Even in cases of physician-assisted suicide for adults, we tend to attack because these people are supposedly throwing away their lives. But we must ask ourselves: what is life worth if you don’t feel you’re living it?
In Julianna’s case, this isn’t a decision between life and death. This is a decision between life with tubes and florescent lighting, unfamiliar smells and white sheets, and life at home, with princess dresses and her 6-year-old brother and her favorite blankets. Death, sadly, comes either way. If Julianna faces infection again and spends the remainder of her life hooked up to a machine that breathes for her, her parents might still choose to turn them off. The only difference is, now they are making the decision to take her off the machine before the machine is even necessary.
We can’t speculate that Julianna doesn’t understand death, but we can’t expect her to fully comprehend it, either. But regardless of whether or not she understands what death is, she definitely has an understanding of what is comfortable for her. Most children probably don’t consider what happens to them after death — at least not enough to address the looming ambiguity that would influence this kind of decision. But she has been through the tubes and the needles before, and she’s more than capable of saying she doesn’t want more.
And who is to say that Julianna doesn’t have grounds to make a decision based on immediate relief? Most of us have never experienced anything close to what she has. But we all know what it feels like to be in the comfort of our homes, with our families.
Some may say that teaching Julianna about heaven was a form of coercion, or that it comes from a place of selfishness. But this clearly isn’t the case — regardless of her parents’ explanation of what happens after death, they at least made it apparent that they would no longer be with her, and that she would leave Earth forever. Perhaps the idea of heaven gives her parents something to believe in. After all, they are watching their daughter slowly die.
Realistically, not one of us has a right to make a judgment call about Julianna’s death. Even if you have a child with a chronic illness, every single person’s illness is so different. Not only is it difficult for us to understand what Julianna has gone through, but we also can’t possibly put ourselves in her parents’ position.
We also cannot say that it’s fair to wait a year to see if cures emerge for this terminal disease. In all aspects of this child’s life, comfort is imperative. And not only have her parents made this decision process comfortable, they have also made her as physically comfortable as possible.
According to CNN, Julianna spends her days in Disney Princess dresses, watching her brother play and laughing along with her family. And we all know that when we are happier, we are healthier. Perhaps the sheer joy that comes from the comfort of home will be enough to make Julianna just a little bit better. And if Julianna is made that much more comfortable and her pain is eased, then she should absolutely spend the time she has left in the care of her family.
What’s so interesting about Julianna’s case is that scenarios like this must happen all of the time. So many patients decide to move to hospice, or to move home or to go to that last high school football game. But this blown up controversy is quite probably only making this family’s process even more difficult.
It isn’t our business to be discussing it, and it isn’t anyone’s business to comment on. And yet, here we are.
While many of the comments surrounding her parents’ decision are negative, even more of them are surprisingly positive. Really, the only stance we can ethically take is to support their decision. This situation is so delicate that we can’t have anything but sympathy.
