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Why a 17-year-old with cancer is being forced to undergo chemo against her will

A state can force a 17-year-old cancer patient to receive chemotherapy treatments against her will, the Connecticut State Supreme Court ruled Thursday.

The court found that the state has not violated the rights of a 17-year-old identified as Cassandra C., who's receiving forced chemotherapy for Hodgkin's lymphoma.

Cassandra refused treatment after her diagnosis in September because she believes chemo would cause significant long-term bodily harm, like organ damage and infertility. Connecticut's Department of Children and Families disagreed: it mandated that Cassandra receive medical care because the life of a child should be protected in a case like this, where the medical consensus is treatment is necessary. Two chemo treatments later, Cassandra ran away from home for a week. Her treatments picked back up in December under the court’s orders.

The court ruled today her attorneys had the chance to prove her status as a mature minor in the initial trial, but didn't.

Cassandra's case has raised a host of questions about autonomy and medical care, particularly as it applies to minors. When can children refuse care? When does the state have an interest in intervening? With the court's ruling made, here's a guide to the issue.

1) What happened in the Connecticut case?

Doctors diagnosed Cassandra in September with Hodgkin's lymphoma, a cancer that attacks the lymphatic system (which is closely tied to the immune system). The body's ability to fight infection decreases as the disease advances. Cassandra was diagnosed with Stage 3 or 4 Hodgkin's lymphoma and was being treated at Connecticut Children's Medical Center.

Hodgkin's lymphoma is frequently treated with chemotherapy, which does have possible long-term side effects including heart damage and lung damage and fertility issues, according to the Mayo Clinic. The cause of Hodgkin's lymphoma isn't known, and it's diagnosed using a lymph node biopsy. Her doctors say it's highly likely she'd die without chemo.

Cassandra had surgery to remove part of her lymph node as a surgical treatment, and doctors moved to start her on chemo. She and her mother left against doctor's orders. Cassandra's doctors, who are mandatory reporters of child abuse or neglect, reported this to DCF, which took the case to state Superior Court (a lower court to the Connecticut Supreme Court) in November. There, doctors testified Cassandra needed the treatment, which has an 80 to 95 percent success rate. The court granted DCF temporary custody of Cassandra. She underwent two chemo treatments and then ran away from home, refusing at one point to come back for further care.

The court convened again, which resulted in DCF removing Cassandra from her mother's home and giving the agency authority to make all of her medical decisions. She has been forcibly hospitalized since December, receiving further chemo treatments. Doctors have said she has an 80 to 85 percent chance of surviving the cancer if she keeps going with the court-ordered chemo.

2) Why would a minor refuse care for cancer?

In Cassandra's case, she's a young patient who is deeply concerned about the effect chemotherapy would have on the rest of her life. She wants to refuse the treatment even though, her attorneys say, she fully understands the implications. She's a competent patient who should be allowed to make her own medical decisions, her attorneys argued.

"Absent any finding that they [Cassandra and her mother] are incompetent, the trial court violated their constitutional rights in allowing DCF to substitute its judgment for theirs and in permitting DCF to force Cassandra to receive medical treatment against her will," the appeal that Cassandra and her mother filed says.

If an adult made a decision to halt treatment, courts would not intervene. But with minors, the system works differently: parents or guardians have the final say over what type of medical treatment occurs. That is, unless the courts rule the patient a mature minor.

This comes to the mature minor doctrine, a legal concept with variations in each state that acknowledges it. The mature minor doctrine acknowledges that an unemancipated minor may be mature enough to move forward with or reject a health care treatment. Cassandra and her mother argued that her status as a mature minor should have been considered by the court before DCF took custody.

Many instances of minors turning away cancer care come from religious or spiritual beliefs. Young Jehovah's Witnesses have refused life-saving treatments because of their religious beliefs, and courts have respected those decisions. In 2007, 14-year-old Dennis Lindberg died of leukemia after refusing to undergo life-saving blood transfusions. As a Jehovah's Witness, he didn't want to receive blood as the practice is banned in the faith. In that case, a judge ruled Lindberg had the right to make that decision for himself.

In 2009, 13-year-old Daniel Hauser of Minnesota refused chemotherapy for his Hodgkin's lymphoma, despite a predicted 90 percent of survival with chemo and a 95 percent chance of death without it. When taken to court, Hauser's mother said "We believe in traditional methods. To strip that away would be stripping his soul right out of his body." The boy's parents were taken to court. His mother fled with him, but returned after a week and complied with court-ordered treatments. His request to be designated a mature minor was denied, as he couldn't read.

3) Why would the state intervene?

DCF, acting on behalf of the state, says it's obligated to intervene in this case. It's their duty to act when a child would die if medical decisions were left up to the parent. DCF's decision is based on experts — in this case, the doctors who diagnosed and are treating Cassandra who all agree she needs the chemo. To step in, DCF had to win temporary custody of Cassandra.

"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," DCF said in a recent statement.

4. What are the arguments each side made Connecticut?

Cassandra C. and her mother appealed the court's decision to award custody to the state on three points:

  1. Their constitutional rights were violated when Connecticut overrode their demands to cease treatment.
  2. Cassandra and her mother also want Connecticut to acknowledge the mature minor doctrine, meaning that the court must decide if Cassandra is mature enough to make her own decisions before forcing her to receive medical care against her will.
  3. Common law in Connecticut, based on the precedent of previous judicial rulings, says a patient can't be forced to receive care over knowing and informed objection. Cassandra and her mother both said no and say they understand what that means, but the treatment is compulsory anyway.

The state argued that if all the medical experts agree that the chemo is necessary, then the chemo should be administered to save a child's life. Just like a state would step in to save a child from abuse or other harms, it argued that it has the same prerogative in Cassandra's case.

"When experts — such as the several physicians involved in this case — tell us with certainty that a child will die as a result of leaving a decision up to a parent, then the Department has a responsibility to take action," DCF said in a statement.

But the prognosis isn't the point, Cassandra's attorneys argued. For them, it's a question of her rights as a patient. It's also a question of whether DCF was properly given the authority over her medical decision in the first place, given that her status as a mature minor wasn't evaluated.

5) What was the court's ruling?

The court ruled the state has the right to continue to make Cassandra's medical decisions while she's a minor. She appealed in part on the claim that the state didn't consider designating her a mature minor before taking authority. Her lawyers failed to bring up her mature minor claim during a December trial in Juvenile Court, leading the Connecticut State Supreme Court to rule against her. The brief decision will be followed up by a lengthier ruling in the future, according to the AP.

6) How have courts decided other, similar cases?

Mature minors are acknowledged on a state-by-state basis. Some form of the mature minor doctrine existed in 17 states as of 2013, but Connecticut isn't one of them. In Illinois' landmark case on mature minors, the Illinois Supreme Court reversed a trial decision mandating a minor, E.G., undergo blood transfusions.

E.G. brought the issue to trial using her 1st Amendment right of freedom to exercise religion, saying her beliefs as a Jehovah's Witness led her to refuse treatment for her leukemia. But when the court ruled, it made its decision on her ability to decide her own treatment.

Sarah Hershberger, a 10-year-old Amish girl living in Ohio, refused further treatment for her leukemia in 2013 after her first of multiple rounds of chemo. Her father told CBS the family believes in modern medicine to an extent, but at that point in Sarah's treatment, it was time to stop and try something else. The hospital took the family to court, which led to an appointed guardian making Hershberger's medical decisions. The Hershbergers went into hiding to avoid the forced chemotherapy. When this happened, the guardian asked the court to allow her to stop trying to force Sarah to return to chemo treatments, a request the court granted.

For the most part, mature minor doctrines give minors the right to choose their medical treatment against the wishes of their parents. Cassandra's case is different than many before because she sought the power to override the state's wishes, with the full knowledge and approval of her mother.

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