Two weeks ago, the Connecticut Supreme Court ruled in favor of a Hartford Hospital forcing chemotherapy on Cassandra C., a 17-year-old girl with Hodgkin's lymphoma, 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,” he testified, 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.
Traditionally, capacity has been defined as a set of rational, cognitive processes that include the ability to state a treatment preference, to understand the information relevant to the treatment decision at hand, to weigh risks and benefits in a rational manner, and to appreciate the personal relevance of the treatment decision. We would not be surprised to find that Cassandra is able to satisfy these criteria in her refusal of chemotherapy. In fact, studies have shown that children by the age of 14 perform similarly to adults in measures of understanding and reasoning through a treatment decision.
On the other hand, much evidence suggests that the parts of the brain responsible for planning, emotion regulation and impulse control do not fully develop until the middle or late 20s. It is inappropriate to ignore the role of these brain functions in decision-making, particularly in stressful situations involving serious illness. Studies show that adolescents are particularly vulnerable to outside influences. Peer and parental pressure may undermine their ability to fully comprehend and appreciate the long-term consequences of their choices.
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.
Read more about The Public's Health.