Is it time to reconsider the age of medical consent for adolescents? This is a question I ask myself as my children approach 18 years old. For many years, I dreaded the idea of my medically difficult child turning 18 and suddenly thrust into the not-so-warm-and-fuzzy adult world. I have nightmares about his boating insurance. I can't imagine my very passive and indecisive child on the phone arguing with the powers that be about coverage for his medications and equipment. The child who, until now, has been absolutely unwilling to discuss anything with an adult must advocate for the very things that keep her alive and healthy. Even though, as a teenager, she knows she needs these things, she is hesitant to take an active role in discussing them.
As a doctor, I know my fears are justified. I see many young patients moving away from a world of parental help and guidance and toward a world that suddenly excludes parents. In their new world, parents can no longer talk to insurance companies for their children without getting into challenges. In this world, taking your parents to the doctor with you is considered strange or codependent. Often, parents' motives are called into question when they don't leave the room. It's a difficult world in which young adults often cannot find a provider who would accept them as patients due to complex or poorly understood needs.
The Affordable Care Act now allows parents to keep their children insured until age 26. This 8 year period is when parents are paying premiums but can no longer call and ask why the Explanation of Benefits (EOB) looks like what they have. made or why the claims were denied. It is, on the one hand, a beautiful period of transition for this generation of adolescents, but on the other hand, quite paralyzing for parents. On the surface, this change appears to give this generation of children time to become financially capable of supporting themselves. However, keeping children on parental insurance longer begs the question: “Is it purely for financial reasons, or are we recognizing, in some way, that young adults still desperately need need their parents involved in the complex world of healthcare?
Over the past few generations, our understanding of brain development has evolved. we now know that adolescent brains are not fully developed. They make decisions primarily using their highly emotional and impulsive limbic system and amygdala, because the rational prefrontal cortex is not yet fully developed. Thus, they act before thinking; they take risks; they are not yet able to plan and prioritize, nor see the relationship between their actions and the short- and long-term consequences of those actions.
Add to that, children with chronic illnesses are surviving longer than ever before. Children who did not reach kindergarten in the 1970s are now living into adulthood. Children are surviving with increasingly complex needs and conditions, such as extreme prematurity, pediatric cancers, complex heart conditions and previously fatal genetic diseases. According to the CDC, 40 percent of children have one chronic health condition, 20 percent have multiple chronic health conditions, and 10 percent have complex to very complex health needs. These numbers have been and continue to increase. Health care for these children is a crisis of their generation, with shorter appointment times and few adult providers who feel comfortable managing their health care transition. Some of these children survive with illnesses that adult providers have never heard of, let alone treated. Unlike many survivors of the past, this generation of survivors often survives neurologically intact, capable, in theory, of making their own choices. These children do not need legal guardians. But the question is: are they ready at 6 p.m.? How can we judge neurologically intact and competent to make such important decisions?
Should we leave this subset of very vulnerable and marginalized children responsible for their health care decisions at age 18, or should we still expect and, to some extent, require parental involvement and oversight continue? We are leaving a very vulnerable subset exposed and even more vulnerable by removing parental oversight. These children are already at 10 times higher risk of morbidity and mortality during health care transition. Can we change this by changing policy? Could we protect this immature and at-risk group by changing the age at which they are medically responsible for themselves and giving them a little more time to understand how to navigate the incredibly complex world of medicine?
My seriously ill teenager recently told her doctor and me to stop discussing the transition to adulthood with her. Her doctor told her she was very intelligent and capable. Her response was, “I’m not ready.” I know I was there, it was my body, it was my surgeries, it was my health care. But you don't understand that I was young; I do not remember. I was given good medicine and I just don't remember it. I'm not ready to learn everything I don't remember and explain it to everyone who needs to know. My mother was there too. She remembers. I need her to continue to be a part of this. Stop kicking her out. Stop excluding him. I'm not ready.”
It is difficult, even for me, to meet his health care needs. I am a doctor; I've been there his whole life. She's still learning to navigate the world, just like her healthy peers. Are they really ready to make critical health care decisions, decisions with long-lasting and far-reaching consequences, before they are fully capable of reasoning? Or do we need to do a better job as a society to protect the most vulnerable?
Christine Marie Deeths is a family doctor.