In Connecticut, a 17-year-old girl is being kept in a hospital room under court order. She is restrained to her treatment bed when given chemotherapy that neither she nor her mother wants.
Cassandra C. is a young woman who was diagnosed with Hodgkin’s lymphoma in September, 2014. She underwent surgery to remove a lymph node and then chose not to receive further treatment. She left the hospital with her mother, Jackie Fortin, to allegedly seek a second opinion, out-of-state.
According to Fortin and her attorney, Cassandra believes that chemotherapy is toxic to the body and has long-term negative effects. She believes it destroys fertility, damages organs and causes great harm. She may not be totally wrong. Studies of 30 year-survivors show that their deaths were caused by unintended effects of their chemotherapy. She is apparently aware that non-treatment will most likely lead to her death. Fortin supports her daughter’s decision; she claims that Cassandra has said if she ever had cancer, that she would not want chemotherapy. According to doctors, the treatment has an 80 to 95 percent rate of success, and perhaps she might have decades of living ahead of her before dying of an unintended effect.
Connecticut Children’s Medical Center contacted the state Department of Children and Families (DCF). In November, DCF went to state Superior Court where doctors testified that Cassandra needed treatment. DCF was granted temporary custody of Cassandra, and the Court ordered Fortin to cooperate with the agency. After two court-ordered chemotherapy treatments, Cassandra ran away from home and refused to return for treatment. Another court hearing led to DCF removing her from home. The court also gave DCF authority to make all of Cassandra’s medical decisions.
Cassandra’s attorney has filed an appeal to the Connecticut Supreme Court asking that the state recognize her as a “mature minor” who can refuse therapy. The family also claims that being forced into treatment is a violation of Cassandra’s rights.
This case has two distinct issues: one of law and one of ethics. Connecticut has no law on this issue—no mature minor doctrine—but also no case law. Neither has the U.S. Supreme Court ruled on this issue. Thus, the case could change medical decision-making power for many teens in that state. After all, 18 is an arbitrary cut-off point. At 17 years and 356 days old, a teen cannot make a medical decision. However, one hour later when the teen is 18, he or she can.
In most states, there is a graduated process to gaining rights and responsibilities. At 16, (in most states) one gains a license to operate a machine that can kill others (driver’s license); and many states, a teen gains ability to consent to sexual activity. At 17, one can watch R-rated movies and join the military (with parental consent). At 18, one can vote, enter into contracts, make medical decisions, serve on a jury, buy tobacco products and in some states, purchase a firearm. At age 21, a person can legally purchase alcohol. Only at age 26 must a person purchase her or his own health insurance instead of being on a parent’s policy. This graduated approach exists because people develop differently and reach maturity at different ages. The approach also allows people to adapt to new rights and responsibilities and master them (theoretically) before being given others. But there is nothing magical that happens upon reaching these ages that imbues a person with magical powers of rationality.
In the attorney’s filing, there is a legal issue regarding whether a person 17 years of age should be able to make her own medical choices. Brain development is not necessarily at issue (otherwise we would move the age of majority into the mid-20s). Remember that Cassandra has parental support—she is not acting against her mother’s wishes.
I think there is also the issue of a mother losing her right to choose for her child, simply because she disagreed with her doctor. In a video, Ms. Fortin says that she understands her daughter may die without treatment and that it is horrible, but not supporting her daughter is even worse. In many ways, this mother shows amazing courage in the willingness to stand up for her daughter and support her decisions. It would be much easier for Ms. Fortin to go along with doctors, consent to chemotherapy and have an 85% chance of seeing her daughter live. How will she feel in five years if her daughter dies and by giving consent, she could have saved her daughter’s life? In some ways, the court option allows Cassandra to be saved and for Ms. Fortin to have supported her, rather than undermined her (as giving consent would require).
This case was an ideal situation for an ethics consultation. In a facilitated discussion, there could be a meaningful and useful conversation. What does Cassandra know of her condition? What does she understand about the treatments? What is her understanding of the risks and benefits? Of what is she afraid? Why does she so dislike chemotherapy and are there steps that can be taken to alleviate her concerns? What does she know about death? What is important to her?
It is unfortunate that this conversation did not take place. Instead, the hospital called DCF; the agency then sought a court order to restrain Cassandra and to gain power to consent. I think that there was a real loss of opportunity for a good conversation that could have educated everyone and made sure that there was understanding. At 17, Cassandra may have a strong understanding of what is going on, she may understand the implications of her desires and she may have very strong logical, rational reasons for her choice. Or she may not. But I think it is important to educate her and help her with concerns and fears (if fertility is a concern, did anyone explore freezing her eggs?) before one gets a court order to strap her to a table and force chemotherapy upon her. Even if her mother consented, pediatric ethics would suggest giving strong weight to assent, especially for a teen able to give logical, well-reasoned responses and demonstrating an understanding of risks and benefits.
On the other hand, the state does have an interest in the life of children and their welfare. The state has the power to remove children from abusive or dangerous situations. The reason given in this case was “medical neglect”—defined as not following doctors’ recommendations. There is a disturbing trend of cases limiting or removing parental power because parents disagree with medical recommendations. Fourteen months ago I wrote about Parker Jensen, a similar case in Utah.
A reporter I spoke to about this case asked me whether there should be a change in rules or law as a result of this situation. Given all the variables of maturity and understanding in a teenager, such a global approach would not be helpful to anyone. Instead, I recommended a case-by-case approach. The question the family attorney has asked is whether, in general, a mature 17-year-old ought to be legally permitted to make her own decisions. The question that we ought to ask is whether this particular 17-year-old ought to have her decisions respected.
*Many of the points in this article were developed during a conversation I had with my class, HLTH 229 Ethical Issues in Health Sciences on January 5, 2015.