For about a month, 17-year-old Cassandra C. has found herself isolated in a Connecticut hospital room under 24/7 observation.
A week into her stay, she said, she was strapped to a bed by her wrists and ankles and sedated. When she awoke, she found a port surgically placed in her chest.
“She hasn’t been convicted of a crime, but it’s kind of like she’s in jail,” said Joshua Michtom, an assistant public defender and Cassandra’s lawyer. “It’s an especially lousy way to go through chemo.”
The Connecticut Supreme Court ruled Thursday that Cassandra’s rights are not being violated by the state forcing her to undergo chemotherapy that she does not want. Her mother, Jackie Fortin, supported her daughter’s choice.
Cassandra, who is identified in court documents only by her first name and last initial, was diagnosed with high-risk Hodgkin’s disease in September and her mother has said she believes the chemotherapy could do more harm than the cancer. She and Fortin have said they want to try other therapies.
Doctors have testified that without chemotherapy, she will die. With it, her odds of survival and recovery are 80% to 85%.
“Even if the decision might result in criticism, we have an obligation to protect the life of the child when there is consensus among the medical experts that action is required,” the state Department of Children and Families said in a Jan. 5 statement.
In an op-ed piece Thursday for the Hartford Courant, Cassandra wrote: “This experience has been a continuous nightmare. I want the right to make my medical decisions.”
But do minors have such a right?
In some rare instances, legal experts say, yes. Although it was not the dominant issue in Cassandra’s case, the theory of “mature minor exception” was raised.
The theory is, at best, a nebulous legal concept. In general, it involves whether minors are mature enough to make decisions about their own medical treatment. Seventeen states, as of 2013, have provisions granting minors this kind of consent authority in some instances. Connecticut is not one of them.
“This is a new legal theory in Connecticut,” Michtom said.
In their ruling Thursday, the justices said that a hearing to consider Cassandra’s maturity was unnecessary — that there had been ample opportunity for Michtom and Fortin’s attorney, Michael Taylor, to make that point in lower-court hearings.
Tests of maturity can include questions about good grades or extracurricular activities, as well as other less-defined queries that would allow judges to see a young person’s thinking process and understanding of the procedure, said Doriane Coleman, a law professor at Duke University, who co-wrote an article on the topic for the journal Pediatrics.
There have been few cases in which minors have successfully appealed medical treatment decisions that the state made for them, mostly on the basis of religious objection.
The best-known is the 1989 case of a 17-year-old Illinois girl who was diagnosed with leukemia in 1987, but refused life-saving blood transfusions because it violated her beliefs as a Jehovah’s Witness. The teenager, known as E.G. in court documents, was supported by her mother in the decision.
Like in the case of Cassandra, the state of Illinois filed a neglect petition, and E.G. was placed under the temporary guardianship of someone who would support the transfusions. A juvenile court judge ruled that it was in E.G.'s best interests to have the procedure, and she received nine or 10 emergency transfusions.
Two years later, an appellate court overturned the lower-court ruling, saying E.G. was a mature minor who could make her own decisions, much as a pregnant teenager could choose to have an abortion.
Officials with the Connecticut Department of Children and Families, which took over medical guardianship of Cassandra, said in a statement after Thursday’s ruling that Hodgkin’s lymphoma was a curable disease and that they wanted to make sure Cassandra would survive to be a “healthy and happy adult.”
Cassandra will turn 18 in September.
Cassandra, a resident of the town of Windsor Locks, developed a mass in her neck about a year ago. After numerous tests, biopsies and examinations, she and her mother received the official diagnosis in September. They decided to seek a second opinion.
During this time, doctors grew increasingly concerned. In court documents, doctors describe several missed appointments, say Fortin refused to let her daughter undergo a PET scan, and say the mother interfered during a needle biopsy, preventing it from being finished. Doctors notified the Department of Children and Families about Cassandra’s case in October.
“In no way is my mom neglectful,” said Cassandra in her op-ed. “She has always put me before herself. I am offended by anyone who believes otherwise.”
In November, Cassandra said, the Department of Children and Families, as well as “nearly the entire Windsor Locks Police Department,” surrounded her house when she was home alone, and banged on doors and windows. She hid in a closet, crying, and called her mother and her friends until her mother came home.
Cassandra wrote that she sat there for an hour as she heard her mother and the officials argue downstairs. At the end, she had to leave with officials, and was placed in the temporary care of a foster home.
In November, she agreed to start chemotherapy in exchange for returning home. After two appointments, she ran away for a week.
She described her departure: “I packed all my stuff after Mom fell asleep, left my house and met up with people who were willing to take me in and help me. I had no intention of returning or staying in Connecticut.”
She said she came home because she didn’t want her mother to face jail time for a decision she didn’t know about.
By December, Cassandra was back in the hospital.
Her lawyer and Fortin’s lawyer will continue the legal battle, Michtom said. Cassandra insists she has the right to determine her own life span, whether that be 17 years or 100.
“How long is a person actually supposed to live, and why?” she asked in the op-ed. “Who determines that?”