The Right of Children to Participate in Medical Decision-Making

Can minors decide what is in their interest, or do parents know better? While Art.1 of the UN Convention on the Rights of the Child defines children as “every human being below the age of 18 years”, most children are in a position to make decisions about their health earlier. In medical law cases, this can lead to difficult assessments of decision-making abilities. The “best interest” of the child (Art. 3 CRC) is usually what all parties involved strive for. However, the definition of “best interest” can be contentious, so that the courts have to balance all conflicting interests. This article aims to analyse the influence of the different parties involved in competing rights claims concerning children’s health. The following ‘best interest’ test will be used as a framework: D = ax + by + cz (D: judge’s decision, x: child’s preference, y: parents’ wishes and z: State’s interest).

The prima-facie parental responsibility

In the current state of the law, the primary responsibility to take care of children lies with the parents (factor ‘y’). While children hold rights under the CRC, the parents are the duty-bearers of those rights. This mostly paternalistic mindset aims to protect children, as it is believed that by attributing them adult-style agency, they are at risk of jeopardising both their present and future welfare.

While States play a supporting role in the attainment of high standards of health (Art. 24(1) CRC), parents will eventually be the ones ensuring daily care. They have an almost absolute power to both authorise and withhold medical treatment and a wide margin of appreciation as to what is in their child’s best interest. As the child’s evolving capacities increase (Art. 5 CRC), the role of the parents should decrease over time, and the weight “b” of the equation decreases as decision-making is gradually transferred to the child.

Overall, courts are more willing to recognise the decreasing rights of parents as their children mature. The CRC makes a significant step in the direction of acknowledging children as independent rights-holders, as it wishes to break the paternalistic approach and allow children to speak out. It, however, does not regulate on the issue of consent and does not provide much guidance on how to decide when consensus cannot be reached. In some instances, conflict may arise between the competing interests of the parents, the child, medical practitioners and the State.

The child’s wishes

The importance of the child’s opinion („x“), will be determined primarily by his*her right to participate and his*her actual capacity to make decisions. It is, however, important to consider these factors separately, as capacity should not be a precondition for the right to participate. Rather, the issue of capacity will only influence the second part of Art. 12(1) CRC on whether the child’s views should be acted upon.

The right to participation (Art. 12 CRC) is the principle which allows children to be involved in individual healthcare decisions, as well as in the development of health and policy services. It can, therefore, be used as a tool to promote child autonomy. As a result, tensions can arise between Art. 3 (best interest of the child) and Art. 12 CRC, where the adults’ idea of “best interest” prevails over the child’s right to participation. Often, adults see children as “humans in development” rather than fully-abled agents. This view of future-orientated consent is largely used as a justification to violate children’s short-term autonomy, to even allow them to mature into consent-capable adults; especially when the child’s decision would result in death or serious injury. For example, a child will be forced into following chemotherapy treatment against his will, in order for him to survive and then later on, as a mature adult, be able to make his own decision.

The problem with this approach is that it focuses on the outcome rather than on the autonomous decision of the minor. While it is usually accepted that short-term infringements of autonomy are lawful if the treatment proves to show long-term benefits, the child’s best interests will ultimately be determined by adult views, disregarding Art. 12 CRC. Crucial aspects of the child’s decision may be overlooked as the child may, for example, prefer quality over the duration of life. There is for example a point to be made about the development of science, where techniques like cryonics seem detrimental on the short-term, but could be life-saving on the (very) long-term. A 2016 decision in the UK allowed a 14 years old child to use this preservation technique.

The issue of capacity is the second factor, which weighs into the “ax” part of the equation. While adults are presumed competent, competency has to be demonstrated for children. Children are still considered to be dependent and vulnerable beings, who often cannot correctly assess what is in their present and future best interest. The UN Committee emphasised the necessity of an individual approach as elements vary from case to case. Age, medical background, social context, education, etc. are being assessed to decide whether the child owns capacity.

The problem with most existing capacity tests is that they perpetuate the paternalistic approach. As long as they keep being framed from an adult perspective, the assessment can only be as accurate as the decision-maker’s knowledge permits. The individual knowledge, background and personal characteristics of the professionals performing the assessment are subjective components, which are difficult to disregard. It for example happened that judges assessed the maturity of teenagers based on whether they were dating or not, which however should be a completely irrelevant criterion in medical law cases!

Interests of the State

Parents are not the sole bearers of children’s rights; ultimately they share their responsibility with other adults in society, like doctors and the State. This usually gives rise to triad relationships, where children can struggle to be heard in an adult-dominated setting. Autonomy and participation rights should ensure for the minors’ views to be consulted by the medical staff. These rights can, however, be curtailed when balanced against the protection of health (Art. 8(2) European Convention on Human Rights) and the right to life (Art. 2 ECHR).

More generally, the State can decide to expand its mere supportive role and can, for example, have an overriding interest when the parents’ idea of “best interest” clearly infringes children’s rights, e.g. in cases of female genital mutilation. The State may also have an overriding interest where (dis)continuance or alteration of treatment would inevitably lead to the child’s death. In cases concerning Jehovah’s witnesses, parents are not allowed to refuse a life-saving blood transfusion for their child. It is well-established case-law that religious grounds are not accepted as a refusal to treatment for children.

However, the overriding interest has to be strong and only in exceptional circumstances will the State be able to replace parental responsibility. In these cases, there must be a heavy burden of proof on the authorities to demonstrate the benefits of their actions, and any least restrictive alternative should be preferred.

This article is based on a research paper which was written in the context of an internship at the Kenniscentrum Kinderrechten (KeKi) in Ghent, Belgium. KeKi is a Children’s Rights Centre which acts as a linking point between researchers, policy makers and practitioners, and aims to gather, disseminate and stimulate academic knowledge on children’s rights. An important part of KeKi’s work is to draft policy advices regarding children’s rights for the Flemish Governement, with a strong focus on the UN Convention on the Rights of the Child. A recent report extensively analysed the concept of the child’s “best interest” of Art.3 CRC in theory and in practice.

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