BY CRAIG KLUGMAN, PH.D. | cklugman@depaul.edu

Julianna Snow is a 5-year-old dying of a neurodegenerative illness, Charcot-Marie-Tooth disease. It is the most common of all inherited neurological disorders, affecting about one in 2,500 people in the U.S. The disease affects not only Julianna’s movement, but her ability to swallow and breathe. Every few hours, she is subjected to nasotracheal suctioning to remove mucus from her airway. Her decline has been rapid and severe.

Her parents, Michelle and Steve, have been forthright with Julianna about her prognosis. They also described heaven as a place where she will be able to “run and play and eat,” as well as meet both her great-grandmother and God. They asked their daughter if she would rather go to the hospital or to heaven the next time she gets sick. Julianna chose heaven.

Her parents have decided to support her decision, and the next time she has a cold or needs to be in the hospital, they will keep her at home. While many bioethicists would disagree with their decision, Julianna’s direct care providers support the choice.

A year ago, 17-year-old Cassandra C refused chemotherapy treatment, even though it had an extremely high likelihood of leading to her remission. Cassandra’s mother supported her refusal, but the court removed Cassandra from her home and temporarily assigned medical decision-making authority to child protective services.

Cassandra was required to remain in the hospital for treatment; she was also kept away from her mother. Cassandra is in remission today.

If a 17-year-old was found to lack capacity to make this kind of medical decision, then why should a 5-year-old be seen as capable of making this choice? Her family claims that Julianna is intelligent, mature and has never known life without this disease.

According to the Centers for Disease Control, a 5-year-old should be able to speak clearly, use full sentences, use the future tense, know his or her name and address, count ten or more things, draw a person, write some letters and numbers, know shapes, and want to have friends. Not one of these attributes signals higher order thinking.

A child’s understanding of death is also important to consider. In general, children under 5 frequently consider death to be sleep-like. They do not see death as final. Those between the ages of 5 and 9 may see death as a person (like a skeleton, ghost, zombie or angel). Children also tend to believe that death can be avoided.

A 5-year-old should never be making a choice to live or die. Paternalism needs to override the child’s autonomy.

The Snows explained that death is equivalent to going to heaven—a place to play with deceased relatives. This understanding is in line with most 5-year-olds’ concept of death. But this is not the understanding required to give informed consent. Julianna’s parents have essentially told their child that she may choose between remaining in the hospital or playing with her grandmother. Who wouldn’t choose heaven? The child lacks competency to make this choice, capacity to make this choice and a sufficient cognitive development to understand.

Julianna’s parents have painted a coercive picture. What would Julianna say if death was explained as “ceasing to exist.” Perhaps as “never ever playing again” or “cold, dark, and lonely.” A hospital could be described as a place to “feel better.” These descriptions are equally coercive.

There is also the aesthetic side of this case to consider. Julianna is a cute girl. Pictures show her smiling in fields. A dying child does not fit our narrative; thus, this case “feels” wrong. There is an inclination among Americans to do everything possible to protect and save children, but her parents seem to be choosing otherwise.

A 5-year-old should never be making a choice to live or die. Paternalism needs to override the child’s autonomy. If Julianna’s parents want to decide to pursue no further treatment, they have the right to make that choice. But the choice needs to be theirs. They can’t avoid guilt by putting moral responsibility on a 5-year-old. At the same time, if they can’t make a choice or don’t want to, the state may need to step in, as it did in the case of Cassandra C.