In light of preconceived notions in Western society that children make irrational decisions, society often wants to “protect children from themselves” (Doyal and Henning 1994, 771). In Eastern countries, notions of familial hierarchies, respect, and harmony remove children from decision-making contexts and promote nonemotive silence (Wang and Marsh 1992, 85; McLaughlin and Braun 1998, 118). One must be wary of unquestioningly valuing parental choice as it can cause medical, personal, and familial harm while disregarding the importance of children’s autonomy, regardless of how “limited” or “incompetent” it may be. It is unjust to generalise and say that children are inexperienced and thus lack capacity to make decisions. It is also unjust if cultural notions disregard the child’s voice. For children who have been ill their whole lives, it can be certain that they have a greater capacity to understand their situations than they are given credit for—it may even be reasonable for them to “prefer death” and voice that thought (Raymond 1999, 15). I am writing from an “end-of-life” perspective where minors are severely ill, probably have been for a long time, and should have the opportunity to refuse treatment and have that decision respected. This fact is not mentioned often throughout the essay because although end-of-treatment care for children prompted my research, I believe minors have an overarching ability and right to have a role in their medical decision-making, regardless of the severity of the situation. I am not suggesting that adolescents should make decisions unaided. I do recommend, however, a care ethics approach that calls upon guardians and professionals to assist with the adolescent-patient’s understanding of the situation by contextualising the situation and offering valuable information and teaching via open communication. This enhances and develops patients’ capacity, values it, while also providing the opportunity for professionals and guardians to evaluate their capacity which is currently a difficult process. Contextualised by the current dynamics between parent, child and medical professional, it is clear that a care ethics approach is a beneficial way to rebalance the power between these parties and fix many of the issues integral to a) unjustified overt paternal authority; and b) not acknowledging or valuing a minor’s capacity, for families all over the world from Canada to New Zealand to China, Malaysia and India.


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pp. 4-19
Launched on MUSE
Open Access
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Archived 2017
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