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Contemplating youth and the end: Cassandra C. and the ‘mature minor’ debate

In this Jan. 2, 2015 still image from video provided by WVIT-TV, Jackie Fortin, Cassandra C.’s mother, speaks at her home in Windsor Locks, Conn., about her daughter’s forced chemotherapy treatment for Hodgkin’s Lymphoma at Connecticut Children’s Medical Center in Hartford. (AP Photo/NBC Connecticut)

At what point does a matter of months become more than simply a matter of months? In Connecticut this week, the state Supreme Court decided that a teenager who is going to become an adult later this year is still a teenager, and agreed that she should be forced to continue chemotherapy to fight cancer. This case involves a 17-year-old girl identified only as “Cassandra C.,” a teenager who has stated that she does not want to receive chemotherapy for her Hodgkin’s lymphoma.

Cassandra has been vocal about not wanting to receive this treatment, and her mother has agreed with her, saying that Cassandra does not want “poison” in her body. In an op-ed for the Hartford Courant, Cassandra argued that she has been traumatized, writing:

This experience has been a continuous nightmare. I want the right to make my medical decisions. It’s disgusting that I’m fighting for a right that I and anyone in my situation should already have. This is my life and my body, not [the Department of  Children and Families] and not the state’s. I am a human — I should be able to decide if I do or don’t want chemotherapy. Whether I live 17 years or 100 years should not be anyone’s choice but mine.

The debate here, and the Connecticut Supreme Court’s order, centers in large part on the notion of Cassandra’s age and maturity. It also speaks to a larger issue involving when adolescents and children can make their own medical decisions.

There are 17 states with “mature minor” doctrines in place allowing children more control over some medical choices, according to a 2013 article published in the medical journal Pediatrics. Connecticut is not one of them. The state Supreme Court order argues that Cassandra, along with her mother, had a chance to show that she was a mature minor and did not do so. It also says that even if you presume the mature minor doctrines can be considered in Connecticut, Cassandra and her mother failed to prove she is “capable of acting independently” when it comes to her illness and treatment. (The court cites the fact that Cassandra ran away from home for a time and stopped her treatment as a part of this finding; you can read the order here.)

The existence of age-related laws and requirements creates a certain gray area. Does a person who is one week shy of turning 21 change dramatically over the ensuing week before being deemed mature enough to drink alcohol? It is tough to argue that a mere matter of days represents enough time for incredible change to occur for each and every person governed by these laws. There are also exceptions to the rules that exist. You typically have to be 25 to rent a car, but in some states younger drivers can rent a car if they are willing to pay an additional fee.

There is a dramatic difference between signing a rental car agreement and signing off on medical treatment, of course. Cassandra wrote: “I care about the quality of my life, not just the quantity.” This court decision comes not long after Brittany Maynard, a 29-year-old who was diagnosed with a brain tumor, took drugs prescribed by a physician and ended her own life. Her action was legal under a law passed in Oregon in 1997. Maynard had been an outspoken advocate for what have become known as death-with-dignity laws, becoming a face for a movement that argues in favor of allowing terminally ill patients to decide when and how to end their lives.

There are three states with laws allowing doctors to prescribe patients medication that can be taken to end the patient’s life, according to Death with Dignity National Center, a non-profit group. Several other bills were introduced in states like Connecticut last year, but they did not pass. This debate is about the living as much as the dying, owing to religious or moral issues raised by the specter of doctor-assisted suicide. But it also parallels the problem many of us seem to have with adequately contemplating the end, as Atul Gawande discusses in his book “Being Mortal.” He writes:

There’s no escaping the tragedy of life, which is that we are all aging from the day we are born. One may even come to understand and accept this fact. My dead and dying patients don’t haunt my dreams anymore. But that’s not the same as saying one knows how to cope with what cannot be mended. I am in a profession that has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not? The fact that we have had no adequate answers to this question is troubling and has caused callousness, inhumanity, and extraordinary suffering.

In her article for the Courant, Cassandra touches on a similar question, asking, “How long is a person actually supposed to live, and why? Who determines that?” The answer to the latter question is not her. For now, at least. She turns 18 in September.