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 views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.