The Case of Cassandra C: Finding Clarity and Responsibility as a Mom and a Bioethicist

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.

[The contents of this post are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]


3 thoughts on “The Case of Cassandra C: Finding Clarity and Responsibility as a Mom and a Bioethicist

  1. I am disturbed by the case of “Cassandra C.” for many reasons, in part because she is near the age of medical majority. If treatment was forced upon an 18-year-old legal adult, this would clearly be an ethical AND legal problem. The fact that Cassandra’s mother’s wishes are also ignored is (combined with the cases of the late Chelsey Cruz, who died at Connecticut Children’s Hospital, and Hartford-region native Justina Pelletier, who was apparently first treated there) another potential demerit against CCH. I admit I do not live anywhere near Connecticut, but the only positive story I have ever read that originated from CCH and gained national attention was well over 10 years ago in the book “Choosing Naia: A Family’s Journey.”

    At what age are we considered mature enough not only to make our own medical decisions, but for them to be respected? 18? 21? 25? Never, if we disagree with any treatment plans (e.g. chemotherapy and/or radiation for cancer or maintenance dialysis for chronic renal failure) recommended by the medical establishment?

    Most adolescents Cassandra C.’s age have fairly good internet skills. Perhaps Cassandra and her mother found PubMed and read abstracts (or, at their local library, even full articles) such as the URL below about the potential sequelae of cancer treatment: for most people, undergoing difficult treatment regimens and having them eventually successfully end is probably endurable. To learn that treatment for serious illness is statistically likely to lead to chronic illness or even another episode of serious illness may be viewed as a “life sentence.” Everyone has a different definition of quality of life.

    There is another possibility in the case of Cassandra C.: undiagnosed existential anxiety and depression. Young adults, especially if they have followed the lives of elder siblings and friends in their 20s, know very well that, even with “good” educations, their prospects since the Great Recession may be limited to years of debt servitude (student loans and credit cards), unfulfilling, low-paying service-sector jobs with little hope of advancement, and perhaps even unrelenting tenancy in their parents’ homes. If I were a high school or college student (especially a “suburban” one) who wasn’t destined for a top university, entrepreneurship, or religious order, would I want to be treated for a serious illness? Perhaps not. In too many families and social circles, suicide is still considered selfish while death from serious illness (especially death that saves a family thousands of dollars in medical bills) may be considered martyrdom.

  2. I think the biggest reason to be concerned over the case of Cassandra C. is the utter disregard of her mother’s wishes. If I had a sick child who needed major treatment and I lived in Connecticut, I’d be afraid of losing custody if I said no to anything any doctor wanted to do to my child. I’d be particularly concerned about organ transplants and bariatric surgery, two procedures that require lifetime care and very strict behavioral rules. Surely the parent is the best judge of whether or not the child has the personality and wherewithal to follow those rules–not every twelve-year-old would be able to cope with the notion that he or she could never have a soda again, for example.

  3. Neither the child nor the mother has a clue. Cassandra’s mother stonewalled the diagnostic process from the beginning, skipping appointments, claiming to want a second opinion and then doing nothing to secure one. Meanwhile the cancer continued to grow and spread, as cancers do. The mother remained in denial, refusing a PET scan, interupting the fine needle biopsy. It is no wonder the child is confused. 35+ years ago, when I was treated for Hodgkins, both the radiation and chemotherapy were worse, with worse side effects that were less mitigated than they are now. And, yes, I’ve had my share of them. But they do not define my life. International work and travel, friendship and community, outdoor adventure, etc – none of them would have been possible without the treatment that saved my life. There are millions of cancer survivors like me who have gone on to lead active, productive lives. The woo-factories that promotes so-called alternative treatments (that have no proven efficacy) have duped people into thinking that life after conventional cancer treatment is not worth living. Horse hockey.

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