The internet has lit up with a story about a five year old girl, Julianna Snow, who has Charcot-Marie-Tooth disease, a neurodegenerative illness. At this point in her illness, doctors say that a simple cold could likely mean that she would spend the rest of her life sedated and on a vent––if she can be saved at all. What makes Julianna an internet controversy is not her disease but her desire to chose to refuse medical interventions the next time she gets an infection. She would like to stay home and die there rather then spend her last days doing painful medical interventions. Her parents want to honor her decision, but there is more than a little controversy over letting a five year old choose to die.
As a crisis counselor, I know that it usually is not until age twenty-four that a person can fully grasp their own mortality and understand that death means there is no going back: life is over. This fact makes it even harder to stomach a tiny, five year girl making a life and death decision.
However, I am also a patient who has had a life threatening illness since I was a child and this experience has also colored my views on this case. I know that life and death situations force children to emotionally mature at a much faster rate than a normal child. I would say as a 36 year old that I was just as capable, if not more capable in some ways, of making decisions surrounding my body and care when I was 12 and severely ill. Granted twelve is a lot older than five, but I still think experiences of other severely ill children should be factored into this case.
I’m not suggesting that every sick child is capable of making care choices, but I do think that children with life-threatening illness mature differently and, therefore, should not be automatically categorized with healthy children that have a very different experience and life-span. Further, I think that parents are probably the best people to advocate for the true decision-making capabilities their children have.
In my situation, because my illness was rare and misdiagnosed, my parents were suspected of making me ill until I was correctly diagnosed. As a result, their decision making rights in my healthcare were taken away. Because I was a child, I had no rights over my own body or medical care, so I was left with my doctors––doctors that were busy covering up their medical mistakes on my case––to make my healthcare decisions for me. I think this is a situation that is far worse than letting children make their own health decisions independently because this policy creates an inherent conflict of interest in care decisions.
I think the best course of action is for children with life threatening or terminal illnesses to have a team to help them make medical decisions. This team would consist of the child, parents, and a child therapist that work in collaboration with the child’s doctors to make these tough decisions. What do you think?
photo from CNN article Heaven Over Hospital: Parents Honor Dying Child’s Request