By: Hannah Heitz
Julianna began voicing her misery and dislike of the medical care that keeps her alive so her parents asked her the unthinkable: to choose whether or not she wanted to continue medical care. Julianna’s parents gave her the choice of going back to a hospital the next time she got sick, a place where she has experienced extreme pain, or if she would prefer to go to heaven. Her mother described heaven as an idyllic place. Compared to being bed-ridden and unable to eat, heaven could easily be the preferable option to any young child, even the healthiest of children. While media portrayals tug at readers’ heartstrings and emphasize the perspective that allowing Julianna to refuse care was the only way to alleviate her suffering, many bioethicists have a different perspective on this story. Putting this story into the context of autonomous decision making, coercion, and capacity to consent, it is easy to come to the conclusion that this choice to Julianna is unethical.
Perhaps more concerning is Julianna’s age. She is five years old. Thus, Julianna’s ability to understand the consequences of refusing care and make an autonomous, informed choice is in question. Julianna is legally underage, and, more importantly, her brain is developmentally unable to grasp the meaning of such a choice. Research has shown that the ability to understand death is not complete until eight or nine years of age. Moreover, according to psychological research her religious beliefs regarding death, particularly her belief in heaven and the possibility of reuniting with deceased relatives there, is associated with a misunderstanding of the concept of death. Although bioethicists value autonomomous medical decision making, Julianna is unable to give informed consent, which necessitates full understanding of the clinical situation and its consequences. If a young child can refuse medical care, then why can’t a toddler make the same choice? Inconsistency in application of ethical rules and procedural expectations creates a slippery slope for future decision-making.
The news article chronicles Julianna’s severe pain, overemphasizes the small amount of time she has left to live, and portrays a child with wisdom beyond that of any other five-year-old. Following media attention, Julianna has lived through months with pain, but they have also been months spent interacting with family and friends, playing dress-up, and experiencing life. Her life remains fulfilling and rewarding, which also suggests providing her the choice to refuse care is questionable. In the end, considering the facts of this case using bioethical precepts leads to the conclusion that providing Julianna with this choice is unethical.
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[JS1]Can you tell if she is 5 now or 5 when they offered her the option or both?