Pediatricians sometimes find ourselves holding small children down and treating them against their will. When cleaning the wax out of a toddler’s ear, for example, to see if there’s an infection, we don’t ask the child’s opinion.
But as children grow up, how can they, and how should they, begin to participate in making medical decisions? What if they disagree with their parents, or with their doctors? When do they get to decide whether to have elective surgery, whether to go on medication for attention deficit disorder, whether to undergo medical tests or treatments or just wait to see whether their symptoms clear up on their own?
The American Academy of Pediatrics last month issued a new policy statement, with an accompanying technical report, analyzing the issue of informed consent by pediatric patients. It discusses the question of formal informed consent, but also the question of assent, suggesting that even a child as young as 7 can express an informed agreement with proposed medical treatment, and that if the child is properly informed and involved in the discussion, this can “foster the moral growth and development of autonomy in young patients.”
Dr. Aviva Katz, a pediatric surgeon who is the director of the Ethics Consultation Service at the Children’s Hospital of Pittsburgh, and was first author on both, said that these new reports were guided in part by an understanding of neurodevelopment and the evolving decision-making abilities of adolescents.
The goal of pediatric assent, from a neurodevelopmental point of view, is to promote good decision making skills and build that growing sense of autonomy as a child gets older, so that by the time children reach adult autonomy, they understand the complexity of medical decision making and feel somewhat prepared to take it on.
“You wouldn’t expect a kid to drive at 17 without hours of driver ed,” Dr. Katz said. “Why would you expect someone to make complex medical decisions at 19 if they’ve never had a chance in a safer environment?”
That’s a medical perspective in itself, rather than a legal perspective, said Arthur Caplan, the director of the Division of Bioethics at New York University’s Langone Medical Center. “Medicine tends to think in gradients, emerging competencies, neurodevelopment,” he said. In contrast, “the law tends to think in bright lines: You can drink at this age, you can vote at this age — we don’t give 16-year-olds half a vote.”
Many of the high-profile cases around pediatric consent and assent have involved children with life-threatening illnesses, where refusing treatment may have fatal consequences. When the stakes are high, and a child is not going to be allowed to refuse treatment, it’s important to make that clear.
“For me, assent is recognizing that the child will have input, the child’s thinking will be responded to,” Dr. Caplan said. But involving the child does not mean signing over decision making. “You’re going to make some effort to persuade them toward the direction the doctor benevolently wants to pursue,” he said. “It’s input, it’s being treated respectfully but it’s not the last word.”
Adults, of course, are allowed to refuse lifesaving treatments or surgeries and to ignore their doctors’ advice. But they aren’t generally allowed to do that on behalf of their children, and there is plenty of legal precedent for overruling religious preferences and mandating blood transfusions or medications for children even if parents would be able to refuse for themselves.
“If you have life-sustaining treatment you’re going to provide it,” said Dr. Lainie Friedman Ross, a pediatrician who is a professor of medical ethics at the University of Chicago. “You can still ask for their voice, still respect them, still include them, but don’t ask for the choice if they don’t have a choice — and involve the 17-year-old way more than the 7-year-old.”
Making complex medical decisions, and making them well, means dealing with information about your illness, about therapies, about risks and benefits and side effects. Canada does not have a formal age of medical consent, and relies instead on the capacity of the patient. In a study published in 2011, Canadian researchers gave adolescents ages 12 to 16 and their parents information about stimulant treatment for attention deficit disorder — the kind of information that you need to understand in order to give informed consent. When they tested understanding and recall, the adolescents did as well as their parents. Dr. Debbie Schachter, a child and adolescent psychiatrist at the University of Toronto Centre for Addiction and Mental Health who was the first author on the study, said: “It’s hard for physicians to know the level of detail that people may want, so I try to give a lot of information.”
Clearly, a medication strategy is much more likely to be successful if an adolescent buys in and cooperates. Including the patient in the discussion and the decision can help with the treatment. “If somebody understands what is happening to them, they’re more likely to be adherent,” Dr. Ross said. She pointed to studies that show that many pediatricians talk directly to the parent and don’t involve the child at all. If we make a practice of including children in the medical conversation, she said, young adults will have more experience and be more ready to take part in decisions.
The new policy statement recognizes several situations in which adolescents are legally able to make medical decisions for themselves, including consenting to treatment for matters related to sexual health, contraception and prenatal care, and also to mental health and substance abuse treatment. The rationale for giving adolescents this additional medical autonomy is based on the concern that they won’t get treatment if they have to have parental consent.
But when the parent does have the decision making power, it’s still important to involve the pediatric patient. “Giving kids a little more freedom than we’ve gotten used to, that can be difficult and scary as a parent,” Dr. Katz said. “If I see someone with hernias, I’ll talk to the child, what’s your schedule, are you on a sports team, let’s work around a schedule that’s good for you.” Sometimes the parents are troubled that she’s talking directly to the child, she said, but not as often as they were 10 or 15 years ago.
The new guidelines encourage taking time and including the child, Dr. Katz said, but doctors must also remember that even children with strong cognitive skills don’t necessarily have mature judgment. “It’s best done in stages,” she said, “giving the kids the opportunity to start making medical decisions, to start being part of that discussion.”