'We subscribe to the principle that people should get to make decisions for themselves almost all the time'
Last week, the case of a Connecticut teenager, identified as Cassandra C., 17, made headlines. Diagnosed with Hodgkin’s lymphoma, Cassandra wanted to forgo chemotherapy altogether—a decision her mother reportedly supported. But in early January, child services took the 17-year-old into custody and on Jan. 8 the state Supreme Court denied the teenager’s request to not receive the drugs.
The state’s interference in a personal decision about health care provides a rare lens into when and how health officials can mandate health care. Forced treatment is rare, but it happens when people, most often minors and the mentally ill, find themselves in extenuating circumstances.
“We subscribe to the principle that people should get to make decisions for themselves almost all the time,” says Paul S. Appelbaum, a psychiatry, medicine and law professor at Columbia University. “The exceptions to that rule are rare. What we’re seeing play out in Connecticut is really the exception, not the rule.”
Competent adults in the United States are almost always permitted to make their own health care decisions, even if that means forgoing a potentially life-saving treatment. Even in cases of highly infectious disease, state laws don’t typically allow forced medical treatment. Instead, sick individuals may be quarantined until they agree to comply with treatment procedures.
The most obvious exception to the principle applies to mentally ill patients deemed incompetent to make their own health decisions. Though laws vary for long-term involuntary treatment between states, most jurisdictions allow short-term hospitalization for individuals thought to be a risk to themselves or others.
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Minors have no official say when it comes to decisions about their health care; parents or guardians are typically charged with making treatment decisions on their behalf. (Minors do have the right to petition the courts to show that they are “mature”—something Cassandra from Connecticut did—and therefore capable of making their own decisions. Cassandra’s petition was denied.)
If parents refuse a recommended treatment, the state typically works with parents to reach a mutually agreeable solution, says Appelbaum. If the parties still can’t agree, the case may go to the courts. “The legal principles here are fairly consistent, but their application is not necessarily straightforward,” said Appelbaum of the difficulty of resolving health care issues in court. “There is no algorithm.”
When brought to court, judges weigh a range of concerns, including the consequences of leaving an ailment untreated. Life-threatening conditions are much more likely to result in forced treatment than, say, a recommended cosmetic surgery, said Appelbaum.
“How long is a person actually supposed to live, and why? Who determines that?” Cassandra wrote in a op-ed in the Hartford Courant. “I care about the quality of my life, not just the quantity.”
The court, which had previously ruled Cassandra’s mother unfit to make decisions on her daughter’s behalf, rejected Cassandra’s explanation and ordered her to undergo chemotherapy.
“This is a curable illness, and we will continue to ensure that Cassandra receives the treatment she needs to become a healthy and happy adult,” said a statement from the Connecticut Department of Children and Families.