In the middle of a busy clinic I go to see my next patient, a 16-year-old girl with a swollen knee. I had seen her the week before and, after discussing the options regarding treatment of her arthritis, had organized a joint injection for today. As I walk in the door she emphatically informs me, over her parents’ objections, that she is not going to have the injection.
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Explore This IssueJanuary 2020
What should we do? What are her rights as a minor? Can she refuse treatment? Further, what obligation do we have as providers and the parents have as guardians to make sure she receives appropriate treatment of her disease?
Adults, defined as 18 years of age or older, are presumed to make their treatment decisions based on informed consent. This forms the basic tenet of a doctor-patient relationship. However, in pediatrics, where shared decision making is encouraged, informed consent consists of a combination of parental permission and child assent. This works well when parent and child are on the same page, but falls apart when disagreement occurs over the best treatment options. Under certain circumstances, children are legally able to make their own decisions. Emancipated minors are one example: included in this group are adolescents who are self-supporting and living separately from their parents, are married, have delivered a child or are on active duty in the military.
Since 1976, the American Academy of Pediatrics has made several policy statements concerning informed consent. In 1995, this also included a statement regarding how parents, patients and providers need to work in partnership in regard to decision making.1 The latest statement from the American Academy of Pediatrics in 2016 goes even further, stating that dissent by the pediatric patient should carry considerable weight, especially when the proposed intervention can be deferred without substantial risk.2
Active involvement of the pediatric patient in any medical decision has been an important development in recent years. The rationale behind this has been that by engaging in their own care the patient is developing an awareness of their disease, an understanding of the treatments available and, therefore, an acceptance of the proposed care. For this to work, the patient must have the capacity to participate in decision making.
Studies have shown that by age 14, adolescents are capable of making appropriate decisions regarding their healthcare.3 In practice, this relies on the patient putting down the cell phone long enough to actually listen to and understand the implications of treatment.