by Craig Klugman, Ph.D.
Julianna Snow is a 5-year-old who suffers from Charcot-Marie-Tooth disease, a neurodegenerative illness. This is the most common of all inherited neurological disorders (about 1 in 2,500 people have it). The disease usually is noticed in adolescence or early adulthood. For Julianna, the disease affects not only movement but swallowing and breathing. She is subjected to NT suctioning every few hours to remove the mucus that accumulates. Her decline was rapid and severe. Michelle and Steve Snow have written extensive blogs about their experiences and conversations.
Julianna’s prognosis is not good. Her parents sat her down and explained that heaven is “where she’ll be able to run and play and eat, none of which she can do now. Heaven is where she’ll meet her great-grandmother…God will be in heaven, too, they tell her, and he will love her even more than they do.” They then asked her if next time she gets very sick, would she prefer to be in the hospital or heaven. She answered heaven.
Her parents have decided to support her decision and the next time she has a cold (which is dangerous for her) or needs to be in the hospital, they will keep her at home. Bioethicist Arthur Caplan was interviewed for a CNN article after reading the blogs. He disagreed with the parents’ position. Julianna’s direct care providers support the parents’ decision.
A year ago, a 17-year-old Cassandra C was refusing chemo treatment even though she had an extremely high chance of remission. Her mother supported her decision. The court stepped in and removed Cassandra from her home and temporarily gave medical decision-making to CPS. Cassandra was mandated to stay in the hospital for treatment and keeping her away from her mother, who they thought may have influenced the decision. She is in remission today.
If a 17-year-old was found to lack capacity to make this kind of decision, then why should a 5-year-old be seen as capacitated to make this choice? The family claims that Julianna is intelligent and has never known life without this disease, experiences that have made her more mature. I have written about a 12-year-old with end-stage astrocytoma who was extremely mature and knowledgeable about his condition. He died in hospice having had most of his wishes filled. But there is a big difference between 5 and 12.
According to the CDC, 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 10 or more things, draw a person, some writing of letters and numbers, knows shapes, can sing/dance/act, has some independence, can be demanding and cooperative, wants to have friends. None of this is higher order thinking.
Children differ not only in their maturation but in their understanding of death. In general, a child under age 5, if they have an awareness death thinks of it as “sleeping” or “moving on.” They do not see death as final but rather as a different form of life. During ages 5-9 a child sees death as a person (like a skeleton, a ghost, zombie, or angel). They also tend to believe that death can be avoided.
The Snows explained death as going to heaven—a place to play and be with deceased relatives. This is in line with most 5-year-olds’ understandings of death. But this is not understanding for informed consent. They have essentially told their child, the choice is between being in the hospital or playing with grandma. Of course she chose heaven, who wouldn’t? The child lacks competency to make this choice, capacity to make this choice, and a sufficient cognitive development to understand.
The parents are painting a coercive picture. What would Julianna say, if death was explained as “ceasing to exist. As sleeping, not dreaming, and never ever waking up. Never ever playing again. Never ever seeing anything or anyone ever again” or as “cold, dark, and lonely with worms gnawing through your body.” A hospital could be described as a place to make you better. These descriptions are equally coercive and because children are impressionable, likely to lead to a different preference by the child.
If a child asked to play with guns or knives, would the parents, say “sure.” If the child asked to go play with a lion at the zoo, would the parents agree? Of course not, because children have magical thinking and its up to adults to keep them safe.
Then there is the aesthetic side of this case. Julianna is a cute, little girl. Pictures show her smiling in fields. We are used to images of people in their 90s being ill and that fits our narrative that adults die after a full life. A dying child does not fit our narrative and thus, “feels” wrong. There is an inclination by Americans to do everything possible to protect and save children. This is not part of the Snow’s thinking but might be part of the reason this case “feels” as it does.
In no way should a five year old be making a choice as to whether to live or die. This is a case where paternalism needs to override the child’s autonomy. If the parents want to decide to pursue no further treatment, they have the right to make that choice. But it needs to be their choice. 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, this may be a place for the state to step in, as it did for Cassandra C.
ADDENDUM October 29, 2015
This post has generated quite a conversation on Facebook and I have discussed the case in two undergraduate courses. A lot has been made that it is admirable that the parents are talking to their child about death and her dying in particular. Some have brought up, “what’s wrong with magical thinking in a child?” If it brings a sense of peace and reduces suffering, then perhaps it is okay to tell a tale to a child. I do not disagree with these ideas, but I do disagree with the notion that parents would say they the child made the decision. This is a parental choice and helping the child deal with it should appropriate to her age and understanding.