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When Do We Become Autonomous?

By Michael Cook

It’s more important for a child to live to become an autonomous adult than to die to defend her mother’s prejudices against medicine.

I am used to controversy, but sometimes you do get surprises. The hot button issues of bioethics – abortion, euthanasia, stem cell research, genetically modified foods – always generate passionate controversy, but I never imagined that chemotherapy for a 17-year-old girl would interest anyone.

I was quite wrong. I have hardly ever received so many comments on an issue.

Here’s what happened. Cassandra C., aged 17 years and 3 months, was living in the American state of Connecticut when she was diagnosed with Hodgkin lymphoma. Without chemo, most patients die within a couple of years. With it, they have an 85% survival rate.

These statistics did not sway Cassandra from her belief that chemotherapy was toxic. She feared being ill during treatment, damage to her organs and possibly becoming infertile. She refused to be treated. Her mother, Jackie Fortin, supported her decision to the hilt, fully aware that her daughter might die. She allowed her to skip her chemo appointments.

On her 18th birthday, Cassandra will become a legal adult and will be able to refuse chemotherapy. Until then she is a minor and the state ultimately has responsibility for her.

The clock was ticking. Last October Connecticut police and the Department of Children and Families (DCF), alleging “medical neglect”, removed her from her mother’s care and placed her with a foster family. Cassandra returned home in November after promising to undergo chemotherapy, but after 2 days of treatment she ran away and disappeared for a week. In December she was strapped to a bed, sedated and given chemotherapy. Now she is in a hospital room with a guard at the door. Her mobile phone has been taken away and the landline has been removed so that she cannot speak with her mother, who can only visit twice a week.

Cassandra feels violated. She wrote in a local paper: “This is my life and my body, not DCF’s 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. How long is a person actually supposed to live, and why? Who determines that? I care about the quality of my life, not just the quantity.”

The case was reported across the United States, provoking passionate comments. Two issues emerged clearly. The first was a deep distrust of paternalism: that doctors and government authorities know what is best for a patient. The second is a passionate, almost visceral, support for autonomous decision-making. As many people pointed out, the bright line drawn under her 18th birthday makes no sense. She will be no more mature then than the day before. Furthermore, at 16 she can drive, a potentially hazardous practice, and consent to sexual activity. She could probably get an abortion at 14. Does it make any sense to deny her the right to refuse medical treatment at 17?

The DCF says that it had no choice. “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,” it said, “then the Department has a responsibility to take action”.

It is important to respect the autonomy of adults because they are presumed to understand the issues. But children are different. Even if they know the facts of life, they may not understand them. Death means something very different to a 17-year-old than it does to a 47-year-old.

I would support the state, although I suspect that the doctors and departmental apparatchiks are old-fashioned paternalists who failed to communicate well with Cassandra and her mother. Cassandra may look mature, but running away was not a mature response. It suggests that she may not understand the gravity of her situation and may be parroting her mother’s medical prejudices.

It’s more important for a child to live to become an autonomous adult than to die to defend her mother’s bad science. But there are a lot of people who will disagree with me.

Michael Cook is editor of BioEdge, an online bioethics newsletter.