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On June 14, 2016, 5-year old Julianna Snow died at home, in accordance with her stated wishes not to return to the hospital. Julianna suffered from a severe form of Charcot-Marie-Tooth disease, an inherited neurodegenerative disorder which, while not always lethal,1 had weakened her body to the extent that even a cold could be fatal. Julianna’s case raises important questions about patient autonomy and end-of-life care for children. The child did not wish to return to the hospital, and was willing to go to heaven instead.6 Though her parents respected her autonomy and honored her decision, the question remains: did Julianna have the decision-making capacity to make a life-or-death decision at such a young age? Are there cases where autonomy may have to be sacrificed in favor of other important ethical determinants, such as beneficence or non-maleficence?

Autonomy and Patient Care: To What Extent Should Children Make Their Own Decisions?