“No, No!”
A 2-year old girl is screaming in my office and tears are streaming down her face. As heartbreaking as this display is, her protests don’t stop her parents, or me, from giving an injection of medicine to treat her juvenile idiopathic arthritis. Clearly, if this toddler had her way, she would never receive another injection again. We know that this young girl does not have the capacity to make medical decisions for herself. But as children grow up, how should they participate in making these complex medical decisions? What happens if they disagree with their parents, or even their doctors?
Informed consent in pediatric patients
In 2016, the American Academy of Pediatrics (AAP) published a policy statement regarding informed consent in pediatric patients. This policy provides the framework for decision making, noting that informed consent and knowledge are key to making healthcare decisions. Patients and parents (or surrogates) should be aware of the nature of the illness, proposed diagnostic or treatment steps, and potential risks and benefits in order to engage in dialogue with medical staff. Children as young as 7 years of age can give assent to medical treatment because they are entering the concrete operational stage of development, allowing limited logical thought processes and the ability to develop a reasoned decision. The goal in the preadolescent age group is to help the patient reach a developmentally appropriate awareness of the disease and treatment, and solicit an expression of the patient’s willingness to participate in the treatment.
When the patient refuses treatment
But what happens when these preadolescent patients do not want the proposed treatment ─ such as subcutaneous injections? In that case, physicians taking care of these young children have a duty to follow the Hippocratic Oath and “do no harm.” This includes making sure the diseases, such as arthritis or lupus, do no harm, and that the patient receives adequate therapy. Involving the parents and guardians is important to ensure compliance and buy-in with the treatment goals. I also find that involving other services such as psychology or Child Life can be incredibly helpful. These professionals can explain the disease and treatments on a level the child can understand.
Involving adolescent patients in their care
Adolescent patients can present an additional challenge. Their ability to make decisions depends in part on their cognitive ability, maturity, and moral authority. As noted in the AAP policy statement, many adolescents are able to think abstractly and handle complex tasks. However, brain remodeling in the prefrontal cortex, the site of executive function and impulse control, is the last to mature and can continue developing as people turn 30 years of age. The risk-taking areas of the brain develop around puberty. This divide between the two systems can lead to risky behavior in adolescence and the implication for this is that adolescents may rely more on impulse decisions rather than cognitive choices.
Pediatric and adult rheumatologists must take these facts into consideration when prescribing treatments. Clearly, if the adolescent buys into the treatment, success is more likely. In my practice as a pediatric rheumatologist, I will often ask the parents or guardians to leave the room so the teenage patient can discuss questions or concerns. This fosters a sense of independence for these young adults and gives them a chance to take ownership of their health.
Reaching medical decisions together
In pediatric rheumatology, there is debate on when to start biologic therapy for juvenile arthritis ─ immediately upon disease onset, or after failure of other traditional disease-modifying therapy (such as methotrexate). This “debate” is ongoing and many studies are hoping to address this issue. I find that incorporating the pediatric patient’s views on this treatment debate is important, yet difficult. How can the patient, parents, or guardians reach a conclusion, when we as physicians do not know the answer? The patients are the ones who will have to deal with any untoward side effects when they reach adulthood, either from the medications or the arthritis. In clinic, I try to explain these views to parents and children and together we reach a decision that works best for the patient. We are all doing our best to care for these young people so they can lead the happy, healthy lives they deserve!
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