Julianna Snow, a 5 year old girl who suffered from an incurable neuromuscular disease, died on June 14, 2016 after a long, hard fight that sparked a great deal of debate among bioethicists. Julianna was diagnosed at 2 years old with Charcot-Marie-Tooth disease, and by 4 years old she could not use her arms or legs and had to use a feeding tube. However, the effects of her illness were only physical and not mental. After being in and out of the hospital, Julianna’s parents were informed they would need to make extremely difficult medical decisions the next time Julianna got an infection that would make it hard for her to breathe. Even though Julianna was only 4 years old, her parents decided to include her in such medical decisions. To honor her wishes to “go to heaven” and not go back to the hospital, her parents decided to care for Julianna in the comfort of her own home.
This decision was highly criticized by some who believed Julianna’s parents “painted a coercive picture” to influence their daughter’s decision to “go to heaven.” Bioethicist Arthur Caplan, for example, argues that a 5 year old child is incapable of making this kind of decision especially in light of the case of Cassandra C., a 17 year old girl who refused chemotherapy but was mandated to receive treatment when a court concluded she lacked capacity to make such decision. Yet, the doctors who were most involved in Julianna’s care supported her parents’ decision. Even Bioethicist Arthur Caplan admitted after meeting Julianna that “she taught [him] and others that even a child can become very knowledgeable about a challenging illness and can convey thoughtful and remarkable feelings about her illness and her ideas.”
Julianna received hospice care for the last 18 months of her life and in that time she celebrated her fifth birthday as a princess. She died in her mother’s arms at home in her princess room.