New Publication: ‘Overriding Adolescent Refusals of Treatment’

Written by Anthony Skelton, Lisa Forsberg, and Isra Black

Consider the following two cases:

Cynthia’s blood transfusion. Cynthia is 16 years of age. She is hit by a car on her way to school. She is rushed to hospital. She sustains serious, life-threatening injuries and loses a lot of blood. Her physicians conclude that she needs a blood transfusion in order to survive. Physicians ask for her consent to this course of treatment. Cynthia is intelligent and thoughtful. She considers, understands and appreciates her medical options. She is deemed to possess the capacity to decide on her medical treatment. She consents to the blood transfusion.

Nathan’s blood transfusion. Nathan is 16 years of age. He has Crohn’s disease. He is admitted to hospital with lower gastrointestinal bleeding. According to the physicians in charge of his care, the bleeding poses a significant threat to his health and to his life. His physicians conclude that a blood transfusion is his best medical option. Nathan is intelligent and thoughtful. He considers, understands and appreciates his medical options. He is deemed to possess the capacity to decide on his medical treatment. He refuses the blood transfusion.

Under English Law, Cynthia’s consent has the power to permit the blood transfusion offered by her physicians. Her consent is considered to be normatively (and legally) determinative. However, Nathan’s refusal is not normatively (or legally) determinative. Nathan’s refusal can be overridden by consent to the blood transfusion of either a parent or court. These parties share (with Nathan) the power to consent to his treatment and thereby make it lawful for his physicians to provide it.

According to the law in England and Wales, adolescents found to have decision-making capacity have the power to consent to—and thereby, all else being equal, permit—their own medical treatment. However, adolescent refusals of treatment do not have the power to always render treatment impermissible; other parties—that is, individuals who exercise parental responsibility, or courts—retain the authority to consent on the adolescent’s behalf. This is sometimes referred to as the concurrent consents doctrine.

The concurrent consents doctrine is puzzling, but intuitively attractive. It is puzzling because it is hard to grasp why an adolescent’s valid consent has the authority to permit treatment, while their valid refusal lacks the authority to render treatment impermissible. In the case of an adult who has decision-making capacity, both valid consent and refusal are normatively (and legally) determinate. The doctrine is intuitively attractive because it attempts to strike a balance between protecting potentially vulnerable adolescents and respecting their developing autonomy.

In our recent article, ‘Overriding Adolescent Refusals of Treatment’, published (open access) in the Journal of Ethics and Social Philosophy, we develop a well-being-based view that might help make philosophical sense of the concurrent consents doctrine. Our account emerges from detailed criticism of rival frameworks that might be used to provide philosophical support to the law

We consider and reject two views (by Neil Manson and Faye Tucker) that argue for the sharing of the power to validly consent to treatment for a period between adolescents and their parents and courts under an arrangement of transitional paternalism. We then consider and reject a stage of life view (building on Andrew Franklin-Hall’s work) on which the mere fact that an adolescent is at a stage in life before assuming full responsibility for her life may warrant others consenting to treatment on her behalf.

We argue instead for a well-being-based view, which may justify the concurrent consents doctrine. On this view, facts about the nature of adolescent well-being may in some cases justify allowing consents but not refusals to be normatively determinative. We offer a deeper philosophical rationale that captures and explains the plausible elements of the views we reject while avoiding their infelicities and defects.

To set the stage for our view, it is important to clarify some philosophical terminology. When we appeal to the notion of well-being, we are appealing to what is non-instrumentally prudentially good for an individual, that is, what is beneficial for, or in the interest of an individual. Something (e.g., happiness) is non-instrumentally good for one when its possession makes one better off in and of itself; it is not worth having simply because it causes what is good for one in and of itself. We contend that what is non-instrumentally good for adolescents is distinct from both what is non-instrumentally good for adults and from what is non-instrumentally good for young children. More specifically, our view is that adult well-being is primarily subjective in nature while the well-being of young children is primarily objective in nature. Well-being is subjective if it is the case that for something (eg, a stroll in the park) to make an individual non-instrumentally better off it has to be valued (eg, wanted) by that individual or in some way resonate with her from her own point of view. Well-being is objective if it is the case that something can be non-instrumentally good for an individual even if it is not the case that it is valued by or resonates with that individual.

We therefore favour variabilism about well-being and reject invariabilism about well-being. Invariabilism is the view that the same theory of well-being is true for all welfare subjects (adults, children, newborns, non-human animals, and so on). An example of this might be hedonism about well-being, according to which all welfare subjects’ well-being consists in pleasure. Variabilism denies invariabilism—what is prudentially good for an individual will be different for different welfare subjects. According to variabilism, for example, a view about of the nature of well-being may be true for adults but false for small children and vice versa. Hedonism might, for example, be true for young children while a desire satisfaction theory might be true of adults.

We think variabilism has the resources to make philosophical sense of the concurrent consents doctrine. Roughly, we hold that the well-being of adolescents includes both subjective and objective components. If an adolescent values or cares about something (e.g., athletic prowess), it is non-instrumentally good for her to possess it. Subjective goods might include getting what one wants or happiness. However, there are also certain so-called objective goods that are non-instrumentally good for adolescents (regardless of what they value or want). Objective goods might include knowledge and freedom.

We argue that one such objective good is shielding, which consists in being insulated from the full brunt of, the full responsibil­ity for, action on autonomous aims. Shielding is a variety of freedom: freedom from making certain kinds of decisions in the absence of a safety net of scrutiny and possible limitation on action.

How might the appeal to a distinct view of well-being for adolescents justify the concurrent consents doctrine?

Act­ing on autonomous aims is developmentally important for adolescents. Being able to exercise autonomous choice at least to some extent is useful from the point of view of preparing an adolescent for the kind of decisions she will have to make as an adult. When Cynthia and Nathan consider treatment, they contemplate whether to consent to or to refuse treatment (and which option to pursue in cases in which more than one intervention is offered). This involves exercising a broad range of skills, including understanding the facts of the situation, applying these to themselves, and taking a decision based on a sober assessment of what they most value. One might think, therefore, that the rule according to which adolescent medical consents always have the power to render treatment permissible is justified by the fact that it involves promoting instrumentally beneficial exercises of autonomy without the threat of serious costs. This account can explain why the power to consent is normatively determinative, namely, because the opportunity to consent allows the considerable instrumental benefits of the exer­cise of autonomy to accrue to the adolescent.

The instrumental benefits of exercising autonomy may also accrue in the case in which an adolescent refuses treatment. This may provide a reason to consider the refusal normatively determinative. However, it seems more plausible to attribute refusals lesser weight. This is because it is prudentially good for an adolescent to be shielded from making the decision without a safety net. In addition, the (sometimes) provisional nature of the values on which an adolescent acts and the fact that action on them may be very costly—especially in the cases such as Cynthia’s and Nathan’s, which involve life-prolonging treatment—provide a further reason not to give refusals full power. These various factors together provide strong reason to protect an adolescent from the consequences of deciding alone. These values seem to provide us with reason to sometimes treat refusals differently—that is, as not always capable of rendering treatment impermissible.

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