Treating Teens: Considerations When Adolescents Want to Use Complementary and Alternative Medicine

Who Decides?

The law strongly protects people's rights to bodily integrity and autonomy, which in the health care context means that health care providers must obtain consent before treating.⁶ To give a legally valid consent, the person concerned must be competent (sometimes referred to as decisionally capable), which means that he or she can both understand and appreciate the nature and consequences of the recommended treatment, alternative treatments, and nontreatment.^7–9 He or she also must be able to make a decision that is voluntary (ie, an expression of will rather than a direction from others). Some young people (referred to in law as “mature minors”) meet both of these requirements, although the younger the patient is, the less likely he or she is to do so.^9,10 Absent additional statutory or common law constraints, minors who are decisionally capable can make their own decisions about treatment.^9–12 If a minor does not satisfy these minimum requirements, then a substitute decision-maker, usually a parent or guardian, has the legal authority to consent to or refuse treatment on his or her behalf.

Especially when there is conflict between parents and their child or between a child, the family, and health care providers, it is important to establish who can consent to treatment: the minor or his or her parents. The question is both legal and factual, because laws that govern capacity vary among jurisdictions, and minors differ in whether they can make mature, independent decisions. Determinations about decisional capacity can be challenged in court or, in some jurisdictions, by application to a specialized tribunal.^13,14

Decisional Capacity

Decisional capacity can be particularly difficult to assess in adolescents. The law recognizes the degree of understanding, and appreciation of the consequences of treatment and its alternatives required will vary with the gravity of the decision and the circumstances of the minor.^13,15 Refusing treatment needed to preserve life or prevent a serious risk to health legitimately requires greater appreciation of the consequences than does refusing more minor treatment, and so does a difficult and complex decision.^15,16

Would the determination about whether Chris can make his own treatment decisions be affected by the fact that the conventional treatment recommended has achieved satisfactory results in a large majority of those who have undergone it or by the alternative nature of the treatment option that he wants to explore? In theory, if he is decisionally capable, it should not. Decisionally capable adults are free to refuse treatment and pursue other options for whatever reasons seem sufficient to them. However, when minors are concerned, it is not clear that the same result will follow.

When challenged, older minors' decisions about treatment have not always been upheld by courts, for a number of reasons.¹³

• There is some support in the jurisprudence and academic literature for the argument that when health risks are serious, a minor, even if mature, can only consent to care that would be of benefit (ie, a minor can only make those decisions about medical care that others would consider to be in his or her interests).^17,18 This reasoning, referred to as the “welfare principle,” challenges the extent of the commitment in law to mature minors' interests in self-determination and autonomy and weighs in favor of acceding to the minor's decision only if he or she opts for the recommended treatment.

• In some jurisdictions, legislation may impose other conditions before the minor can prevail (eg, a minimum age or concurrence of treating physicians).^11,19,20 In the United States, although many states recognize that mature or emancipated minors can decide about treatment, not all of them do.²¹

• Child-protection proceedings (which can be triggered by refusal to obtain needed medical intervention that will have serious consequences for the child's life or health) may limit minors' decision-making. Child welfare legislation typically allows a court to authorize treatment that it determines is in the best interests of a child found in need of protection, even against the child's and parents' wishes. However, the Supreme Court of Canada has held that even in that context, courts must interpret the best-interests standard “so that a young person is afforded a degree of bodily autonomy and integrity commensurate with his or her maturity.”²² Thus, in Canada, if an adolescent can establish that he or she is able to exercise mature, independent judgment about the treatment in question, then his or her decision should be respected.

When deciding whether a minor meets the test for decisional capacity and can make a voluntary decision, health care providers (and, ultimately, courts) should take into account the nature, purpose, risks, and benefits of the recommended treatment, the basis and reasons for the minor's decision, and the decision's likely consequences, which will assist in determining whether the minor has the necessary information to decide and the understanding, appreciation, and independence required to do so.^15,23,24 In Re D.(T.T.), a 13-year-old boy who was suffering from osteosarcoma wanted to refuse medically recommended chemotherapy and amputation of his leg in favor of herbal remedies and other less aggressive treatment favored by his parents. The court held that because he had been given only partial and inaccurate information from limited sources (his father, not health care providers), and because of family dynamics, he had neither sufficient information nor sufficient independence to make a truly voluntary decision. Consequently, he could not decide whether to consent to or refuse treatment himself.^25,26

In our scenario, refusing treatment that is likely to achieve good results and wanting therapy not shown to be effective for this condition raise legitimate questions about whether the patient is properly informed and has the necessary decisional capacity. This situation should be explored further.

Decisionally Capable Patients

The physician must determine if Chris is decisionally capable of consenting to or refusing treatment. The more serious the condition and consequences are, the more searching the scrutiny of him and the decision should be.¹⁵

The physician should strengthen her relationship with Chris and ensure open, honest, and respectful dialogue and explain the reasons for the recommendation, including the likely effects of delay. She can initiate conversation by inquiring about why he is hesitant to have this surgery and perhaps allay his fears by showing him successful results of the operation or arranging a meeting with a patient who has already undergone the procedure. The physician should not minimize Chris's concerns or the potential negative effects of surgery but should also be clear about the risks of delay. Chris will have an ongoing need for medical care, and trust must be maintained. The physician should share the lack of efficacy data and reassuring safety data about homeopathy with Chris. If he is able to make his own decisions, this will assist in ensuring that his consent is both properly informed and voluntary. If he insists on homeopathy, the physician will need to closely monitor his condition by using conventional means.

Decisionally Incapable Patients

Should a physician determine that a pediatric patient is not capable of making his or her own treatment decisions, the physician must obtain consent from a substitute decision-maker, usually the patient's parents. It is still important and respectful of the child to include him or her in discussions and decisions to the greatest extent possible. In these situations, the child's assent, or appropriately informed agreement, should be sought but is not controlling.^5,9,40 Even if the patient has not yet developed the ability to understand the scientific information and weigh the risks, thus falling short of the legal test for capacity, engaging him or her in conversation about a therapy that he or she independently sought will show the patient that the physician is mindful of his or her independence and respectful of his or her ability to take part in developing the management plan. A child's sustained dissent, or resistance to treatment, should be taken seriously, and discussions with the parents and team should be held in an attempt to reach a conclusion that all of them can live with.

Mature Minors: Child-Protection Proceedings

Legislation is not uniform across Canada, the United States, or elsewhere regarding older minors' authority to make decisions about health care, especially in the context of child-protection proceedings. Recent Canadian jurisprudence confirmed that child welfare legislation must be interpreted to allow adolescents the opportunity to demonstrate sufficient maturity and independence to have their decisions about particular treatments respected.¹⁵ Given variations in both jurisprudence and legislation, it is important that health care providers have regard to the law in the jurisdiction in which they practice and consult as needed to do so.