by Amy Bloom, Bioethics Program faculty
I have been reading the latest news regarding Cassandra C., the teen with Hodgkin’s lymphoma who refused treatment but was forced into receiving it by a Connecticut Supreme Court ruling. As a mother and a bioethicist, these are the times when reconciling my personal opinions with my professional experience can be most challenging. Many of my “mom” friends were shocked and horrified by the image of a young woman being restrained to a bed, forced to undergo treatment. They had visions of a screaming pained girl, a mother helpless to save her child, and “big brother” dispensing poison to an innocent girl whirled through our collective mind.
From an ethics standpoint, it is generally wrong to force medical treatment on anyone, particularly when there are cultural and religious factors to be taken into consideration. I am reminded of cases involving Christian Scientists who believe that any “traditional” medical intervention is contrary to their cultural and religious views. Oftentimes, in cases involving a seriously ill child, parental rights are legally overruled and children are “forced” into treatment. Sometimes, the state may assume its parens patriae rights and substitute its own control over children when the natural parents appear unable or unwilling to meet their responsibilities, or when the child poses a problem for the community. Further still, the state can mandate treatment in order to assure proper care, as established by Jacobson v. Massachusetts in which the US Supreme Court upheld compulsory vaccination laws.
So, on the one hand we argue it is unethical to force treatment. On the other hand, we do sometimes make the decision to mandate care, particularly when children are involved. The question becomes: how does one manage the rights of children and of parents, while also maintaining the responsibility of the state to protect children?
First, we must consider what is in the “best interest” of the patient while still considering individual choice. Such cases are clearer when an outcome like death is imminent. The case of the 29-year-old young woman with terminal brain cancer who refused treatment and moved to Oregon to end her life is a good example. Most ethicists supported her decision, although there were some who disagreed with “ending one’s life” so directly. In her case, this was a quality of life issue. Treatment provided no long-term benefit. It only prolonged her pain and suffering while delaying the inevitable. From a legal perspective, she was also an adult and capable of making her own decisions.
Cassandra’s case is different. Chemotherapy has a very good chance (~85%) of curing her. I personally struggle to understand how, when faced with these scientific facts, she chose to refuse care. I am troubled by the daughter’s decision-making process, and I wonder about the relationship between the mother and daughter. Some of the words and the reactions make me wonder what, in fact, the young woman believes to be true. As far as I can tell, there were no religious or cultural beliefs behind her renouncing medical care. Seeing chemotherapy as “poison” is a bit odd, truthfully, and her claim to be “ready to die at 17” is even more disturbing, especially given that there is treatment available.
My ‘gut’ tells me that there is something askew in Cassandra’s belief system. The things she claimed to fear as a result of chemotherapy – loss of fertility, side effects to other organs – may not happen. Moreover, if she’s dead then these are no longer an issue. These side effects are also manageable. She can prevent a potential loss of fertility by freezing some eggs. The emotional and psychological effects of chemotherapy can similarly be managed with proper medical and palliative care.
Some bioethicists have suggested this was a missed opportunity for an ethics consultation. I agree, and then some. This was not just a missed opportunity for an ethics consultation, this was a missed opportunity for education, communication, support and compassion. This was a missed opportunity to reach out, inform, and support a teen navigating the difficulty of deciding how to treat a life-threatening illness. This was a missed opportunity to understand how she came to the notion that “chemo is poison” or that “being ready to die at 17” is something worth talking about.
For argument’s sake, let’s assume Cassandra made her decision to refuse treatment with all the facts. Let’s assume that the medical providers explained all the details to Cassandra and she still chose to renounce care. We then have to ask about Cassandra’s mother, the woman who is still legally responsible for her care. Why would she not choose the treatment most likely to cure her daughter? Some claim Cassandra’s mother showed great bravery, love and compassion in standing by her daughter’s decision to refuse care. I struggle with this. I feel that a mother’s responsibility is to advocate for the best care for her child. Unlike the 29-year old with terminal brain cancer, this treatment will save Cassandra’s life.
This case has caused me to reflect on the implications of a government that mandates the care I give (or choose not to give) to my child, under the assumption that I am of sound mind and can make proper choices about my child’s health. I trust science, and I trust myself to be a critical thinker. I believe that there are certain health care issues that should be mandated – vaccinations, for one – because the science is clear (and the information against it is completely faulty and warped by media sensations like Jenny McCarthy). I also believe that I have a moral responsibility to take care of my community, and that includes my child. Sometimes that will require me to do things that are uncomfortable, against my nature, and that may even cause my daughter pain, but it is still the right thing to do. Not for me, but for her.
So, in this case, I come back to a single question: Why? If I could understand why Cassandra chose to forego chemotherapy, and if I could believe that her mother was thinking “in the best interest” of her child, then I would be more comfortable with the decision to refuse care. Until then, I hope that Cassandra lives a long and healthy life. I also hope that Cassandra, her mother, the medical establishment, and the bioethics community continue to have this conversation because our work here is certainly far from complete.