“Parents Allow 5-Year-Old Daughter to Make End-of-Life Choice” originally appeared on Yahoo Parenting and was reprinted with permission.
The parents of a terminally ill 5-year-old girl are honoring their child’s decision regarding her end-of-life care — and that means allowing her to die at home rather than head to the hospital for life-prolonging but hard-to-bear medical treatments.
“She made it clear that she doesn’t want to go through the hospital again,” mom Michelle Moon, of Portland, Ore., told CNN. “So we had to let go of that plan because it was selfish.”
Her daughter, Julianna Snow (pictured above), was diagnosed with a severe case of the incurable neurodegenerative Charcot-Marie-Tooth disease before she was 2. Though currently stable, she could die from something as simple as a cold, as her coughing and breathing muscles are too weak to fend off pneumonia. Last time she had an infection and was hospitalized, Julianna had to undergo painful nasotracheal suctioning several times a day. And next time, doctors believe, the only way to possibly save her would be to subject her to a state of very low quality of life: on a respirator, sedated.
Her parents asked her what she wants to do when faced with that, and she told them she wants to die at home — or go to “heaven” — instead. That decision came out of a stunningly frank conversation between Julianna, then 4, and her mom, as recounted in Moon’s blog back in July and delved into this week through CNN’s two-part feature story on the family:
“Me: 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?
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.”
Moon, who did not respond to a request for comment from Yahoo Parenting, has blogged at length about the harsh reality for her family, which also includes husband Steve Snow and their 7-year-old son, Alex. “Her physical body is profoundly weak, but, verbally, she is like an elite gymnast,” Moon wrote about Julianna. “Her words are rich and precise. She uses them to entertain, engage and to show her love. Above all, she wants to be understood.”
Her parents could use some understanding, too, it seems, as going public with their story and with their decision to honor their daughter’s wishes has kicked up a social-media-trending controversy about not only whether such a young child has the cognitive ability to understand the finality of death, but to choose it. Commenters on Moon’s blog, as well as on Twitter, have been mostly supportive of the parents’ decision, though some were skeptical and even critical.
The experts who spoke to CNN were split: Bioethicist Art Caplan of New York University disagreed with the parents, noting that “this doesn’t sit well with me” and that there is “zero chance a 4-year-old can understand the concept of death.” Meanwhile, pediatrician and ethicist Dr. Chris Feudtner of the Children’s Hospital of Philadelphia supports the girl’s parents. “To say her experience is irrelevant doesn’t make any sense,” he said of their daughter. “She knows more than anyone what it’s like to be not a theoretical girl with a progressive neuromuscular disorder, but to be Julianna.”
Dr. Sarah Elizabeth Friebert, director of Pediatric Palliative Care at Akron Children’s Hospital in Ohio, spoke to Yahoo Parenting about her opinion. “From what I’ve seen [of the parents’ decision] it makes sense and is not out of the realm of scenarios I’ve seen in my career,” she says. “We don’t always listen as well as we should to kids who are younger and smaller. But if we did, we might find this is not so uncommon.”
Julianna and kids like her, Friebert explains, have a unique capacity for comprehending the world around them. “The children who are ill often have an advanced understanding of topics that the rest of the world doesn’t,” she says. “That often means their decisional capacity far exceeds that of their chronological age peers.” So most people from the outside looking in at this story picture someone Julianna’s age and “they think of the typical kindergartner who likes Ninja turtles and who is learning her colors,” she explains. But children dealing with life-threatening illnesses are different. “They are the ones living in their bodies,” she says, “and they are way smarter than the average 5-year-old about this issue.”
Friebert says that when caring for a terminally ill child, she encourages families to include the kids themselves, as much as possible, in important conversations. But since parents’ opinions about that can vary widely, it means carefully negotiating how and when to inform the kids and elicit their opinions.
“It’s a conversation that may go on for a while,” she says of speaking with the families under her care. “We don’t want to set up a paradigm where we don’t talk to the child. Children are much more scared of what they don’t know than what they do, and what they imagine is often much more scary than the reality. When you leave them out of the conversation, then they feel alone, abandoned, and isolated.”
Dianne Gray, president of the Elisabeth Kübler-Ross Foundation and the founder of Hospice & Healthcare Communications, which educates on end-of-life care, agrees completely — as would Kübler-Ross herself, she tells Yahoo Parenting. The late psychiatrist and grief-studies pioneer believed that humans were comprised of four “quadrants” — the physical, the emotional, the intellectual, and the spiritual. “And children who are seriously ill, she believed, have an enhanced spiritual quadrant,” says Gray, who recently helped pen a support script for people who may not know where to start difficult conversations about death and illness. She applauds Juliana’s parents for their openness, noting, “I want to support them and back them up.”
Gray speaks from experience: She says that her son, who died at 14 after a long battle with a neurodegenerative disease that’s one of the NBIA Disorders, knew instinctively that he was terminal just after he was diagnosed at the age of 5. “He said to me, ‘Mommy, when I go to heaven will I run as fast as a jaguar? When I die, will you hold my hand?’ I knew he understood,” she says. “Most kids understand.”
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