Ensuring informed consent is central to safeguarding an individual’s right to health. At its core, the concept of informed consent requires more than mere acceptance of a particular medical procedure; rather, it demands that such medical procedure has been freely and voluntarily chosen by a sufficiently informed person. Any intervention taken without informed consent violates a patient’s right to bodily integrity and, fundamentally, the patient’s autonomy.
Notably, the requirement for informed consent not only ensures a patient’s right to obtain the information needed for her to make an educated decision on her treatment, but it also protects her right to refuse treatment or make what her doctors may see as a bad health choice. Informed choice does not guarantee the medical decision leading to the healthiest option is selected, it merely assures that an individual can make the health decision which she understands to be in her own best interests.
So far so clear, but the informed consent waters can become muddier when a patient’s capacity to consent is at issue. Legal capacity is assumed in adults—though it can be recognized as diminished in certain persons with mental health afflictions—however, the legal capacity of children is treated in various ways throughout the world. Some jurisdictions rely on a competency test to establish that the minor has the maturity to make her own medical choices while other jurisdictions require parental consent. The right to health, as guaranteed Article 12 of the International Covenant of Economic, Social and Cultural Rights and interpreted by General Comment 14, demands that a child’s informed consent to a particular medical intervention be obtained to the extent such child has the maturity to make such decisions. In other words, legal capacity is not a switch in a child which can only be turned on at age 18 (or whatever the jurisdiction’s legal age of majority is), but rather exists in increasing increments reflected by the maturity of the child in question.
It may be difficult, however, for us to get comfortable with the idea of allowing a child with sufficient legal capacity to make what we may see as a bad health choice. Take the case of “Cassandra C.”, for example, an American 17 year old suffering from Hodgkin’s lymphoma. Cassandra refused treatment for her cancer, not for religious reasons but because, according to one commentator, “she hates the miserable treatment — hair loss, feeling sick, nausea, and being really tired”. In this case, her refusal was supported by her mother. Cassandra’s decision, however, was not supported by the state’s Department of Children and Families, which filed a motion to gain temporary custody of the 17 year old. The motion was granted and Cassandra was ordered to undergo chemo. According to some reports, Cassandra has been confined to a hospital bed with a port surgically implanted in her heart and a guard at her hospital door.
The violation of Cassandra’s right to bodily integrity here is clear, perhaps made even more poignant by the respect of her mother (who legally did have the capacity to refuse consent on behalf of her daughter) for Cassandra’s autonomous decision. It is understandably painful for state authorities and the health community as a whole to watch a child, having been fully informed about the treatment options, making a decision which could hasten her death, especially where such decision may simply be a result of poor judgment. Ultimately, however, the right to health can only be guaranteed if we respect an individual’s ability to make both good and bad decisions as the alternative is to outsource an individual’s right to make decisions about her own body to medical practitioners and the state. Just as we recognize that freedom of speech safeguards the right of individuals to make distasteful or offensive speech so too must we be willing to accept uncomfortable health outcomes flowing from respect for a patient’s informed consent and autonomy.