When our children went to the doctor for shots, we usually stopped for an ice cream cone on the way home. It was a small compensation for a painful procedure they did not choose. I imagine their answer would have been “no!” Parents worry over how much control their children should have. One dilemma in medical ethics is how much to tell our children, and how much to involve them in the decision. Let me explain.
A cornerstone of medical ethics is respect for persons, reflected in the doctrine of informed consent. Respect for persons means good communication between the doctor and patient, whether an adult or a child. Just like children, adults feel vulnerable when we’re sitting in the consult room wearing a hospital gown and little else. Children are also vulnerable due to their age, immaturity and dependency.
What’s different is that an adult is free to refuse after learning the benefits and risks of the proposed procedure. Children cannot. With a few exceptions, children cannot legally consent until they are an adult. A child might not be able to weigh something that hurts a lot now against the benefit of feeling better in the future. Here, the key is appropriate explanation, active listening, and paying attention to the child’s concerns.
Parents may give permission for tests and treatment. Although the parent’s role is often described as giving “informed consent,” the American Academy of Pediatrics recommends “informed permission.” Children who are able to participate can give their “assent.”[1]
This underlines the importance of involving children in medical decisions. Their doctor can explain things in ways the child can understand, such as: “We need to do something that will make your arm stop hurting, but you might feel like throwing up the rest of the day. What do you think about that?” For older patients, physicians can give more details about the disease or injury, tests and treatment. And, just as with adults, physicians respect the child by getting their agreement, if possible. Even a three-year-old can decide whether the shot should go in their arm or their leg.
Many older children and adolescents can speak for themselves. These “mature minors” are capable, ethically speaking, to agree to or refuse treatment. Although this is usually around the age of 14 or 15, younger children who have lived a long time with a disease like cancer know and understand a lot, and can give their assent.
Doctors are also bound by legal restrictions. A legally emancipated minor can give informed consent. But, many states allow minors to assent to treatment without parental involvement in situations such as sexually transmitted diseases, drug abuse, psychiatric illness, and teen pregnancy.[2] The doctor may be required to report abuse and statutory rape, complicating the relationship with their patient and her parents. Ironically, that same girl might not be able to consent to immunization.
To summarize: doctors respect their young patients when they listen and explain well; parents guard their children through informed permission; and children may be able to participate through assent. And all of us can agree that respect for persons is the key.
[1] Committee on Bioethics, “Informed Consent, Parental Permission, and Assent in Pediatric Practice,” Pediatrics 95 (1995): 314.
[2] Committee on Bioethics, 316.