A Connecticut teen's fight to refuse chemotherapy for Hodgkin's lymphoma -- and a court's decision to force it on her anyway -- is not arousing many concerns on the part of medical ethicists.
"Part of my reason [for supporting the court's decision] is that the intervention is so successful -- specifically for early intervention with a young person, it really works very, very well," Art Caplan, PhD, director of the medical ethics division at the NYU Langone Medical Center in New York City, told MedPage Today in a phone interview. "And the alternative of nontreatment is certain death. If it was more experimental, I might give her a little more leeway."
Hodgkin's Diagnosis
The teenager, a 17-year-old identified only as "Cassandra C.," was diagnosed with Hodgkin's lymphoma last September, according to media reports. She and her mother decided to seek a second opinion, and Cassandra missed several appointments over the next few months. Cassandra's mother also refused to let her daughter get a PET scan and interrupted a needle biopsy.
Eventually Cassandra was placed in a foster home and agreed to undergo chemotherapy in exchange for going home, but ran away after two appointments. She later ended up back in the hospital, and has been strapped to her bed and sedated for her chemotherapy sessions.
On Jan. 8th, the Connecticut Supreme Court ruled that the state had a right to make Cassandra undergo the therapy. Some states have a "mature minor exception" that gives some minors the ability to make their own medical decisions; Connecticut does not have such a provision, and the court noted that Cassandra's lawyer also had had ample opportunity to prove Cassandra's maturity in the lower courts.
The 'Rule of Sevens'
Rosamond Rhodes, PhD, director of bioethics education at Mount Sinai School of Medicine in New York City, agreed with Caplan that the court's ruling was justified. "When a treatment offers an 80% to 85% chance of a cure, while the consequence of refusing treatment is certain death from a terrible disease, the great chance of a very significant benefit from treatment far outweighs any other consideration," she wrote in an email.
"A few weeks of imprisonment in a hospital with forced treatment is a small price to pay for a life with a long future. Cassandra's mother's belief in alternative medicine is irrational and does not deserve any respect in such circumstances."
Rhodes noted that in cases like these, some pediatricians and psychologists turn to the "rule of sevens."
"As they see it, no child under 7 has decisional capacity, almost all children over 14 have decisional capacity, and for those 7 to 14 decisions have to be made on an individual basis," she explained. "They base their views on psychological tests that show that adolescents are as good at reasoning through difficult hypothetical questions as adults."
However, "those who oppose the rule of sevens approach maintain that reasoning is only one factor in decisional capacity, and that immature thinking is very different from mature thinking," Rhodes continued. "I side with those who oppose the use of the rule of sevens and who recognize that adolescents are not fully mature ... Based on this general approach, as well as what the [media] reports about Cassandra, I would say that Cassandra does not have decisional capacity."
Distrust of Authority
Laurie Zoloth, PhD, professor of medical humanities and bioethics at Northwestern University in Evanston, Ill., noted that, in general, "bioethicists ... like people to be free to make the rules about their bodies and lives," and teach doctors to respect that principle carefully.
"This means that as much as doctors want desperately to cure and heal, they cannot force treatment on free, competent, rational adults," she wrote MedPage Today in an email. However, she added, "bioethicists want to be sure that consent or refusal is well informed, thoughtful, and rational."
Zoloth noted that "We now live in a time in which there is a terrible and deep distrust of authority, of science, and even of pediatricians. There are many tragic and irrational beliefs that some hold -- such as the refusal to vaccinate, or thinking that chemotherapy is more dangerous than deadly cancer -- which truly endanger their children. And we as members of a decent society do have an obligation to the children who are the subject of irrational fear, especially if a parent with such a view would allow them to die rather than allow them to have treatment."
She pointed out that Cassandra's running away "is not the core issue -- it is her belief that treatment is 'poison.' That does not seem mature; it seems irrational," especially for a treatment of very short duration with a very high success rate.
Zoloth also presented the controversy to students in her "Religion and Bioethics" class. Most of them agreed that Cassandra did not meet the criteria for a "mature minor exception" even if Connecticut did have one.
"By saying her life span may be 17 years, she is acknowledging that her disease is certainly fatal, which is exactly what the doctors are trying to tell her. But her main reason for refusing the treatment ... is that she thinks it may do more harm. But if she knows her disease may soon kill her, how could the treatment be more harmful?" wrote one of the students. "Based off of Cassandra's contradictory statements, her refusal to accept the unequivocal opinions of multiple doctors, and the immaturity and haste demonstrated in running away from home, I do not believe she meets the level of maturity."
Another student disagreed. "Looking at Cassandra's case, I would argue that she does fall under the category of a 'mature minor' because she fully understands the alternative of not receiving chemotherapy," she wrote. "In a recent statement, Cassandra says, 'I entirely understand that death will be the outcome without the chemo' but says that she does not want to subject her body to these drugs and places greater value on the quality, not the quantity, of life. The fact that she ran away for a week should not negate the possibility of her falling under this exemption rule."
One student suggested that the case showed "the importance of having clear communication where the patient is shown the science behind current, alternative, and new medical treatments. ... If her medical experience was enhanced with friendly personnel that showed her quality life is possible at the end of the experience, then perhaps she would be more willing to receive treatment. For example, if [Cassandra] were presented with a chemotherapy support group or narratives of peers that have gone through similar treatments and are now successfully living a happy life, perhaps [she] would see hope in her treatment."
Caplan agreed. "What I'd hope is that someone -- a doctor, a nurse, a chaplain, a social worker -- could build an alliance with her; maybe they could bring in kids her age that have been through it [successfully] and try to negate the frequency of treatment to make it maybe less efficacious but a little more tolerable."