Is it time to reconsider the age of medical consent for teens? This is a question I have been asking myself as my children are approaching 18. For many years, I’ve dreaded the thought of my medically challenging child turning 18 and suddenly being thrust into the not-so-warm and fuzzy adult world. I have nightmares about her navigating insurance. I cannot visualize my very passive and indecisive child on the phone arguing with the powers that be about covering her medications and equipment. The child who has, to this point, been completely unwilling to argue with an adult about anything needs to argue for the very things that keep her alive and healthy. Though, as a teen, she knows she needs these things, she balks at playing an active role in their discussion.
As a physician, I know my fears are grounded. I see many young patients as they transition away from a world of parental help and guidance into a world that suddenly shuts parents out. In their new world, parents can no longer talk with insurance companies for their children without jumping through hoops. In this world, bringing your parents to the doctor with you is viewed as weird or co-dependent. Often, parental motives are questioned when they do not leave the room. It is a harsh world in which young adults often cannot find a provider that will accept them as patients due to complex or misunderstood needs.
The Affordable Care Act now allows parents to keep their children on their insurance until they are 26. This 8-year period is one in which parents are paying premiums but can no longer call and ask why explanations of benefits (EOBs) look the way they do or why claims have been denied. It is, on the one hand, a great transition period for this generation of adolescents, but on the other, quite paralyzing for parents. On the surface, this shift appears to allow this generation of children the time to become financially able to support themselves. However, keeping kids on parental insurance for longer begs the question, “Is it only for financial reasons, or are we in some form recognizing young adults still desperately need their parents involved in the complex world of health care?”
Over the past few generations, there has been a shift in our understanding of brain development; we now know teen brains are not fully developed. They are making decisions primarily using their highly emotive and impulsive limbic system and amygdala because the rational prefrontal cortex is not yet fully developed. Thus, they act before they think; they are risk-takers; they are not yet capable of planning and prioritizing, nor are they able to see the relationship between their actions and the short- and long-term consequences of those actions.
Add to that chronically ill kids are surviving longer than ever. Kids who in the 1970s did not survive to kindergarten are now living to be adults. Kids are surviving with increasingly complex needs and conditions, like severe prematurity, pediatric cancers, complex heart disease, 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 care needs. These numbers have been and continue to rise. Health care for these children is a crisis of their generation, with shorter appointment times and few adult providers who feel comfortable managing the transition of their health care. Some of these children are surviving with diseases adult providers have never heard of, much less treated. Unlike many of the survivors in the past, this generation of survivors is often surviving neurologically intact, able, in theory, to make their own choices. These kids do not need legal guardians. But the question is, are they ready at 18? How do we judge neurological intact and competent to make such important decisions?
Should we be leaving this very vulnerable and marginalized subset of children responsible for their health care decisions at 18, or should we still both expect and, to some degree, require continued parental involvement and oversight? We are leaving a very vulnerable subset exposed and even more vulnerable by taking away parental oversight. These children are already at a 10-fold increased risk of morbidity and mortality during the health care transition. Could we change this by changing policy? Could we protect this immature, at-risk group by changing the age at which they are medically responsible for themselves and giving them a little more time to figure out how to navigate the incredibly complex world of medicine?
My very complexly ill teenager recently told her doctor and me to stop discussing adult transition with her. Her doctor told her she was very smart and capable. Her response was—”I am not ready. I know I was there, it was my body, they were my surgeries, it is my health care. But you do not understand I was young; I do not remember. I was given good drugs, and I just don’t remember. I am not ready to learn everything that I don’t remember and explain it to everyone who needs to know. My mom was there too. She remembers. I need her to stay a part of this still. Stop kicking her out. Stop excluding her. I am not ready.”
Navigating her health care needs is difficult even for me. I am a physician; I have been there her entire life. She is still learning to navigate the world, as are her healthy peers. Are they really ready to make life-impacting decisions about healthcare, decisions with long-lasting and far-reaching consequences, before they are fully able to reason? Or do we need to do a better job as a society in protecting those most vulnerable?
Christine Marie Deeths is a family physician.
