Bioethics in Faith and Practice, Volume 3, Number 1

Bioethics in Faith and Practice ⦁ 2017 ⦁ Volume 3 ⦁ Number 1 1 Bioethics in Faith and Practice vol. 3, no. 1, pp. 1-3. ISSN 2374-1597 © 2017, Heather Kuruvilla, licensed under CC BY-NC-ND ( http://creativecommons.org/licenses/by-nc-nd/4.0/ ) From the Managing Editor Autonomy and Patient Care: To What Extent Should Children Make Their Own Decisions? Heather G. Kuruvilla, Ph.D. Cedarville University 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. 2 Julianna’s story had previously been featured in USA Toda y 3 as well as a number of online news sites, because of the controversy surrounding her wishes. On previous occasions, doctors had sustained her life only by subjecting her to invasive and painful procedures. Her parents therefore had frank discussions with their daughter about her preferences. 4 Julianna decided she didn’t want to go back to the hospital, so her parents used her input to forgo further painful interventions . 5 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? The question of whether minors have the capacity to make their own medical decisions remains controversial, an issue heavily influenced by cultural and religious traditions. For example, under Sharia law, a boy is considered a man once he has completed 15 lunar years, and a girl is considered a woman once she has completed 9 lunar years . 7 In the United States, where 18 has long been considered the age of majority, the criminal justice system, as well as studies of adolescent psychology, have indicated that younger children, possibly as young as age 15, may be capable of understanding and making monumental health care decisions under certain conditions, where emotional arousal is minimized and they are not under peer pressure. 8 Nonetheless, U.S. law continues to define minors as persons under 18 years of age. When a minor child wishes to refuse care, but the parent desires to continue pursuing it, the law generally sides with the parent . 9 The situation can be even murkier when a mentally disabled person over the age of 18 wishes to refuse medical treatment. While in the past, a guardian would generally make medical decisions for the patient, the current trend in medicine favors “supported” decision making rather than “substitute” decision making. 10 This trend is based partly on the United Nations Convention on the Rights of Persons with