Children’s Autonomy in Health Care: “Medical Decision-Making for Minors: Two Puzzles”

Speaker

Joseph Millum
Senior Lecturer
St Andrews University
Dr. Millum is currently Senior Lecturer in the Department of Philosophy at St Andrews University. He also serves as a consultant to the World Health Organisation and he is the Chairperson of the International Society for Priorities in Health. Prior to arriving at St Andrews, Dr. Millum worked at the US National Institutes of Health for 15 years – in the Clinical Center Department of Bioethics and the Fogarty International Center.

Dr. Millum’s research spans various topics in bioethics and applied ethics. These include: (1) Health care priority-setting; (2) Health research priority-setting; (3) Consent; (4) The ethics of research with human participants; (5) Bioethical theory; (6) The ethics of parenthood. His books include Global Justice and Bioethics (2012), The Moral Foundations of Parenthood (2018), Global Health Priority-Setting: Beyond Cost-Effectiveness (2020), and A Theory of Bioethics (2021).

Abstract

This talk will engage two puzzles surrounding medical decision-making for older children and adolescents. The first concerns decision-making by minors. The law and professional guidelines typically support allowing minors over a certain age to make some decisions for themselves (e.g., regarding sexual health) but not others (e.g., refusal of life-saving care). This is puzzling because the same individual may be deemed competent to make one decision but not another, even though the decisions are equally complex. The second concerns decisions that are made on a child’s behalf. Parents frequently make decisions that are contrary to their children’s interests. This is puzzling because it appears to conflict with the “best interests” standard for pediatric decision-making.

In both cases, thinking about the philosophical foundations of clinical practice can help give principled guidance. Regarding decisions by minors, we can distinguish two rights that together constitute “decision-making capacity.” One is the power to waive one’s rights by giving consent; the other is a claim against others that they not interfere with one’s decisions. I suggest that individuals with borderline decision-making capacity can have the first but not the second—this explains why we should respect adolescent decisions that align with the patient’s interests and values, but can overrule decisions that are highly contrary to the adolescent’s interests. Regarding decisions made for minors, I argue that the “best interests” standard should be replaced by a “reasonable subject” standard. This standard would balance the interests of the child with the interests of others. It explains why parents can take their own needs into account in making decisions that affect their families and why it can be permissible to enroll young children into non-beneficial research studies, while still protecting children from choices that would sacrifice their well-being.

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