Should teens get to say ‘no’ to life-saving medical treatment?
"Really, the child stands in the shadow of her mother here," an assistant attorney general testified, arguing for forced treatment. "She’s not an independent decision-maker.”
Two weeks ago, the Connecticut Supreme Court
on Cassandra C., a 17-year-old girl with
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, concluding that she was not a “mature minor” in the legal sense of the term and was therefore unable to refuse such life-saving treatment. Assistant Attorney General John Tucker argued on behalf of the state in favor of compulsory treatment that both the teenager and her mother opposed. Cassandra “was very quiet, did not engage in conversations during the medical appointments. And for a 17-year-old, as you can imagine, that’s a little bit unusual,”
adding: “Really, the mother did all of the talking and sort of the fighting with the medical personnel. And so, really, the child stands in the shadow of her mother here. She’s not an independent decision-maker.”
Children are considered to lack the requisite capabilities required for independent medical decision making. For the vast majority of pediatric patients in hospitals around the country, standard practice recognizes an adult surrogate (usually the parent) to make treatment decisions in line with the child's best interests. In the case of infants and young children, use of the best interests standard is rarely controversial; clearly, they are unable to make medical choices. But the case of older children and adolescents such as Cassandra is far more challenging, in part because our understanding of decision-making capacity for these patients continues to evolve.
When we consider the fact that teens brains are still developing and that their emotive impulses outpace their cognitive abilities, a more comprehensive notion of decision-making capacity emerges.
We believe the Connecticut court system was correct in challenging Cassandra's right to refuse a treatment very likely to be curative. When weighing the grave consequences of refusal against the likely benefits of treatment, it makes sense to err on the side of intervention. Still, the possibility that Cassandra and certain other teens fall outside the mean and are actually fully capable means that we must develop more robust and meaningful measures to assess decision-making capability. In addition to the contributions of neuroscience, psychology and ethics, we need a broader conversation about the role teens play in their own in medical care.
Teens and young adults should have a place at that policy table.
Andrew Siegel is a psychiatry resident at the University of Pennsylvania Perelman School of Medicine, where he is also a Clinical Research Scholar studying issues in mental health care ethics.
Dominic Sisti is an assistant professor of medical ethics at Penn.
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