Abstract
ObjectiveWhat role should minors play in making medical decisions? The authors examined children's and adolescents' desire to be involved in serious medical decisions and the emotional consequences associated with them.MethodsSixty-three children and 76 adolescents were presented with a cover story about a difficult medical choice. Participants were tested in one of four conditions: (1) own informed choice; (2) informed parents' choice to amputate; (3) informed parents' choice to continue a treatment; and (4) uninformed parents' choice to amputate. In a questionnaire, participants were asked about their choices, preference for autonomy, confidence, and emotional reactions when faced with a difficult hypothetical medical choice.ResultsChildren and adolescents made different choices and participants, especially adolescents, preferred to make the difficult choice themselves, rather than having a parent make it. Children expressed fewer negative emotions than adolescents. Providing information about the alternatives did not affect participants' responses.ConclusionsMinors, especially adolescents, want to be responsible for their own medical decisions, even when the choice is a difficult one. For the adolescents, results suggest that the decision to be made, instead of the agent making the decision, is the main element influencing their emotional responses and decision confidence. For children, results suggest that they might be less able than adolescents to project how they would feel. The results, overall, draw attention to the need to further investigate how we can better involve minors in the medical decision-making process.
Highlights
As part of an attempt to increase children’s participation in decision making, Articles 12 and 13 of the United Nations Convention on the Rights of the Child specify that minors have the right to express themselves freely, be heard on all matters affecting them, and have their views taken seriously [1]
The US Supreme Court has come to recognize that minors who show maturity and competence deserve a voice in determining their medical treatment and even allows minors, in cases such as abortion, treatments for substance abuse and sexually transmitted diseases, and contraception, to receive treatment without parental consent or notification [3]
To the best of our knowledge, this is the first study to investigate (a) children’s and adolescents’ desire for autonomy, (b) their confidence that the right decision was made, and (c) their emotional reactions when faced with what Botti, Orfali, and Iyengar [6] called ‘‘tragic’’ medical choices
Summary
As part of an attempt to increase children’s participation in decision making, Articles 12 and 13 of the United Nations Convention on the Rights of the Child specify that minors have the right to express themselves freely, be heard on all matters affecting them, and have their views taken seriously [1]. Research on shared medical decision making among minors has so far focused on legal and ethical issues (e.g.,[4]), cognitive competency (e.g., [5]), and providing recommendations for determining children’s level of involvement [2]. These are important issues, researchers have neglected to examine minors’ views and feelings about this decision-making process. To the best of our knowledge, this is the first study to investigate (a) children’s and adolescents’ desire for autonomy, (b) their confidence that the right decision was made, and (c) their emotional reactions when faced with what Botti, Orfali, and Iyengar [6] called ‘‘tragic’’ medical choices
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