When the Affordable Care Act was still being debated in the halls of Washington DC, there was concerns raised by some over so called “death panels” and rationing of health care (see Sarah Palin circa 2009). Concerns were raised by many over two parts of the law – the Independent Payment Advisory Board’s proposal to reimburse physicians for having end of life discussions with patients as well as the Patient-Centered Outcomes Research Institute (PCORI) which was supposed to be charged with using cost-effectiveness analysis to aid Medicare in coverage and reimbursement decisions. Both parts of the law were removed or modified to placate more conservative members of Congress, as public perception of these two portions of the law was that government was trying to dictate who could and couldn’t get treatment – decisions usually reserved for physicians and patients.
The implications of those changes are profound (HUGE really), but the changes effectively meant that the government wouldn’t be able to determine who would be ineligible for care (again, that’s a gross overstatement and not entirely what those changes mean but also not the point of this post). But with all the hoopla over “death panels and rationing”, no one has ever stopped to worry about when someone can be forced to receive care. And for one girl in Connecticut, that drama is currently unfolding.
Much like the government and the legal system state that adulthood begins at eighteen, the health care system generally assumes the same principle. We all know, however, that eighteen is a somewhat arbitrary number – there are certainly mature and advanced children who are younger than eighteen and “adults” who can’t function well into their 20’s and 30’s. But when it comes to a technical definition of consenting or abstaining from care, eighteen is the age at which physicians deem a patient competent to make their own health care decisions.
Cassandra C. is a 17 year old girl who lives in Windsor Locks, Connecticut. A more accurate statement would be that Cassandra currently lives at the Connecticut Children’s Medical Center in Hartford – where she is being forced to undergo chemotherapy.
Cassandra was diagnosed with Hodgkin’s lymphoma in September 2014, and with treatment, her chances of survival are roughly 85%. The specifics in the media are a little murky, but with the support of her mother Jackie Fortin, Cassandra ultimately decided she didn’t want to undergo chemotherapy for her disease. In October, Cassandra was forcefully removed from her mom and was placed in temporary DCF custody. A month later, she was returned to the custody of her mother with the promise of initiating chemotherapy. After two days of chemotherapy, Cassandra ran away from home. She was later returned to DCF custody, and in December was hospitalized and forced to undergo chemotherapy. She has been there ever since.
On Thursday, January 8th, the Connecticut Supreme Court ruled unanimously that the state can require Cassandra to continue treatment. She turns eighteen in September.
Cassandra’s attorneys argue that maturity doesn’t develop at a certain age, and that the state should adopt the mature minor doctrine, which allows courts to consider evidence on whether a teen is competent to make health care decisions. While the case is novel in Connecticut, similar cases have appeared in the courts in Illinois and Maine.
But the question remains… who gets to decide on forgoing treatment? In Cassandra’s case, the decision has been made for her by the courts, without any consideration of why she may not want life sustaining treatment. But is eighteen really an absolute? Does a mere eight months invalidate Cassandra’s wishes? And if eighteen is not an absolute, then the next logical question is how young is too young to decide?
In medicine, we like to assume that parents have the best interests of their children in mind – in fact we often operate under what is known as the “best interest principle”. We’re often suspicious of parents that force their children to undergo treatment that may not be in the best interest of the child. But the situation here is different. Any logical human being can conclude that chemotherapy is certainly in Cassandra’s best interest – and yet her mother is supporting Cassandra’s choice to forgo treatment. But even if chemo is in Cassandra’s best interest from a medical standpoint, does that mean that violating her wishes and forcing her to undergo treatment is ethically right?