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01/06/2015

Cassandra C: Right to refuse treatment or protecting a minor*

by Craig Klugman, Ph.D.

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 she is given chemotherapy that neither she nor her mother want. 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. For these reasons, Cassandra does not want chemotherapy. She is apparently aware that non-treatment will most likely lead to her death. Fortin supports her daughter’s decision claiming that–at some undisclosed time in the past–Cassandra had 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 those 30 years of living 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.

Now Cassandra has an attorney who 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 (and they are different things). 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 you cannot make your decision but 1 hour later when you are 18, you can? In most states there is a graduated gaining of rights and responsibilities. At 16 (in most states) one gains a license to operate a machine that can kill people (driver’s license) and in many states, 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 and in other states purchase a firearm. Only at age 26 does a person have to purchase her or his own health insurance instead of being on his/her parent’s policy. This graduated approach exists because people develop differently and reach maturity at different points. The approach also allows people to adapt to their new rights and responsibilities and to 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 over whether a person of 17 years of age should be able to make her own medical choices , rather than the accepted age of 18. Brain development is not necessarily at issue (otherwise we’d 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 rights 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’s horrible, but not supporting her daughter is even worse. In many ways, this mother is showing amazing courage. She is willing to stand up for her daughter, to support her daughter growing up and making her own decisions. I call this courageous because the end result could be the death of her daughter. It would be much easier for Fortin to go along with the doctors, consent for the chemotherapy, and have an 85% change of seeing her daughter live. How will she feel in 5 years if her daughter dies and by doing nothing or giving consent, she could have saved her daughter’s life? In some ways the court option allows Cassandra to be saved and for Fortin to have supported her daughter, rather than undermined her (as giving consent would require).

This case was a perfect 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 chemo (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 calls DCF which sought a court order to restrain Cassandra and to gain the power to consent. (Arguably, they may be required reporters and not have had a legal choice to report—yet another issue). 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, she may have very strong logical and rational reasons for her choice. Or she may not. But I think it’s important to try to educate her and to help her with her concerns and fears (if fertility is a concern, did anyone explore freezing her eggs?) before one gets a court order to strap her down to a table and force chemo on her. Even if her mother consented, at 17 years of age pediatric ethics would suggest giving strong weight to assent, especially for a teen who is able to give a logical, well-reasoned responses and demonstrates an understanding of risks and benefits and consequences of her choices.

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 the doctors’ recommendations. There is a disturbing trend of cases limiting or removing parental power because the parents disagree with medical recommendations. Two cases in Canada are about parent’s wanting to choose unusual therapies for children. 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 case. My response was that given all of the variables of maturity and understanding in a teenager that 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.


UPDATE: I received an email from sources close to this after they read this post. The writer suggested that the case is about both of the questions I pose at the end of the text. He also explained that if the court finds that no minor can make such decisions, then the case ends. But if the court decides that a mature minor can make some or any medical decisions, then court then needs to create a mechanism for instituting that decision–likely another hearing. Thus, the first hearing will address the broader question and if a 17-year-old can have the right to refuse treatment as a mature minor, a second hearing will deal with the question of whether Cassandra can make her own decisions.


 

UPDATE 2 (January 8, 2015 3pm CST): The Connecticut Supreme Court ruled that the previous two Superior court hearings allowed for sufficient examination of this case. The Court stated that no new information about Cassandra’s competency to make a decision was in evidence. Thus, the Court did not rule on the issue of a mature minor doctrine nor on Cassandra in general. She will remain in DCF’s custody and continue receiving treatment.


*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.

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