Ethical controversy erupts over minors’ autonomy
Ethical issues are “difficult and complicated”
Executive Summary
The Connecticut case of Cassandra C, a 17-year old girl ordered by the state Supreme Court to undergo chemotherapy against her will, spotlights conflict between respecting minors’ autonomy and obligations to promote their best interests.
• This case could set a precedent for requiring minors to prove sufficient maturity to make medical decisions.
• Previous court cases involving adolescents’ refusal of cancer treatment have had mixed results.
• Physicians have the legal right to question a patient’s capacity if he or she refuses potentially life-saving care, experts say.
In the controversial “Cassandra C” case, a 17-year old Connecticut girl diagnosed with Hodgkin’s lymphoma was ordered by the state Supreme Court to undergo chemotherapy against her will. The girl refused further treatment after undergoing surgery to remove a lymph node, but as of press time is being kept in a hospital room under court order.
“It’s a very difficult and complicated topic; in this case, especially so because of the age of the patient,” says Janet L. Dolgin, PhD, JD, co-director of the Hofstra University Bioethics Center in Hempstead, NY. Dolgin is also director of Hofstra University’s Gitenstein Institute for Health Law and Policy.
The court decided that the girl’s mother was in violation of her duty to the child by refusing potentially lifesaving care, and gave Connecticut’s Department of Children and Families authority to make all of the girl’s medical decisions. “If the patient was six months older, in theory, there would be no conflict at all,” says Dolgin. In reality, if an 18-year-old refused life-saving care with the likelihood of certain death, his or her capacity probably would be questioned, she says.
“It’s very compelling to save a child; who can let a child die who might live?” asks Dolgin. “On the other hand, it’s certainly a tough call when a child, almost an adult, and her mother are both refusing care.”
The case has put a national spotlight on the tension that can exist between the autonomy of minors and their right to make decisions about their care, and the obligations of both the law and medicine to promote the best interests of the child.
“It is worth noting that the pendulum has swung from an almost absolute insistence on autonomy, to recognition that autonomy must also be balanced with ethical principles such as nonmaleficence and beneficence,” says Matthew R. Kenney, PhD, vice president of mission and ethics at Saint Francis Hospital and Medical Center in Hartford, CT.
This is especially true in the case of minors. “This case will set a precedent by which the burden of proof could rest on the minor to prove sufficient maturity to make medical decisions,” says Kenney.
“Law and ethics do not always coincide — they are two different things,” says Dennis M. Sullivan, MD, director of Cedarville (OH) University’s Center for Bioethics.
The fact that the girl is so close to the legal age of maturity means that she may have more of an ability to understand the risks and benefits of intervention and non-intervention. “On the other hand, the medical stakes couldn’t be higher,” says Kenney.
With chemotherapeutic treatment, her current chances of survival are estimated by physicians at 80% to 85%; without treatment, the likelihood of surviving more than two years is poor. “Based on this, ethically speaking, this treatment is ordinary — medically beneficial — and ought to be provided,” says Kenney.
Kenney sees the primary ethical concern as the conflict between Cassandra’s autonomy and her best interest. “Ethically, there is precedent for violating a patient’s autonomy — particularly one who may not have full capacity for informed consent — in the short term, in order to maximize autonomy in the long term,” he says. For instance, in some circumstances it may be permissible to force a patient in an acute schizophrenic episode to take his or her psychiatric medication, since the medication would enable the patient to regain greater autonomy.
“Applied to this case, compelling Cassandra to receive chemotherapy now — which many contend violates her autonomy — preserves her future autonomy,” says Kenney. “One cannot have autonomy if one does not have life.”
“This situation cries out for an ethics consultation,” says Sullivan. “The majority of ethics consults are resolved by facilitating better communication between the healthcare team and the patient and family.” A medical ethics professional could explore Cassandra’s fears about the chemo, and could make sure she is not reacting to misinformation, for instance.
“If she is worrying about having a family someday, has anyone discussed the idea of cryopreserving her eggs before beginning the therapy?” asks Sullivan. “We may never know, since Family Services was called early on because of fears about neglect.”
Ideally, similar refusal-of-care cases would be addressed by hospital ethics committees; in this case, the patient was not hospitalized when the dispute arose. “It raises a fascinating question: Is there any institutional capacity for ethics consults outside the hospital setting?” asks Dolgin.
While the legal system results in one side prevailing, ethics consults are based on a collaborative approach. “Ethics consults are grounded in the notion that everyone should win, and reaching a resolution that will serve all of us,” says Dolgin. “Very often, it gets people to consider the situation in ways they haven’t previously.”
Physicians have the legal right to question a patient’s capacity if he or she refuses potentially life-saving care; often, psychiatry is called in, she says. “Clinicians are upset when competent adults refuse care that could save them,” says Dolgin. “Patients are often found not competent, even though those calls are exceedingly difficult to make, and there are no hard and fast rules about what they mean.”
An ethics consult, had one occurred, could have helped clarify issues around decision-making for minors including autonomy, beneficence and nonmaleficence, and provided insight into existing state law on the issue as well as hospital policy. “Perhaps most importantly, an ethics consultation would have opened up an avenue of communication which might not have be present before,” says Kenney.
Provider response to a family’s refusal of treatment depends in part on the probability of success of the treatment. “However, cases such as this, which include a complex treatment plan, a highly emotional situation, and a sick adolescent making decisions, should be determined on an individual basis,” says Mary A. Ott, MD, associate professor of pediatrics/adjunct associate professor of philosophy and bioethics at Indiana University School of Medicine in Indianapolis.
A small number of cases involving adolescents’ refusal of cancer treatment have gone to court. “Two high-profile cases resulted in a long bioethics dialogue,” says Ott. One was the 2007 case of a 14-year-old Jehovah’s Witness with leukemia who refused blood transfusions and died as a result, after being determined to be competent to make the decision by bioethicists and the court, Ott says. Another case involved a 15-year old with Hodgkin’s lymphoma who refused conventional therapy in favor of prayer and herbal treatment. He was not judged competent to make the decision, and the family compromised on a combination of therapy and herbal treatments, she says.
“All children’s hospitals with large cancer programs periodically have a case where an adolescent refuses treatment,” notes Ott. Usually, the oncologist, the adolescent, the family and the ethicist are able to agree on an acceptable plan of care. “We try and anticipate conflicts; when they occur, we use a mediation-based approach and identify common goals of care,” says Ott.
Seventeen states have a “mature minor” doctrine.1 This allows minors to present evidence of their maturity to a court so that they are legally allowed to make decisions, including medical decisions, as an adult. “Ethics will often follow the law on this issue, and in cases like this, is required to,” says Kenney. “Ethically, in the case of minors there is a recognition that autonomy must be balanced with the best interest of the child.”
The mature minor doctrine requires that the adolescent understand the nature and consequence of the medical treatment. “It is not clear that these criteria had been met in this case,” says Ott. “It is my hope that this will not be viewed as a failure of the mature minor doctrine.”
The mature minor doctrine, says Ott, “is a powerful tool that can support an adolescent’s emerging autonomy and capacity to make their own straightforward medical decisions.” Examples include adolescents seeking urgent care for a minor injury or seeking contraception. “Both are examples where the minor demonstrates good judgment and responsibility in seeking care,” says Ott.
If parents or other surrogate decision-makers are refusing beneficial or life-saving treatment on behalf of a minor, hospitals sometimes ask the court to appoint a guardian to make decisions in the child’s best interest. “Of course, this is more easily applied to the case of a 3-year-old or 7-year-old. It is much less clear when the case involves a 17-year-old,” says Kenney. Often, medical professionals seek assent to treatments from minors who are approaching the age of maturity but not yet able to legally give consent.
“One could contend that refusing to provide life-saving medical treatment to a minor is tantamount to assisting them with suicide,” says Kenney. “Indeed, there may be a legal and ethical requirement to provide life-sustaining treatment to patients who are incapacitated.”
Minors should not be given a false sense of autonomy, he says. “If Cassandra did not actually have the freedom and power to make decisions about her care, it should not have been presented to her that she did have this power,” says Kenney.
When having informed consent conversations, providers should be clear on the difference between assent and consent. “We want to preserve as much autonomy as possible,” says Kenney. “But the medical community and the law also have an obligation to preserve life and protect patients from harm.”
Reference
- Coleman DL, Rosoff PM. The legal authority of mature minors to consent to general medical treatment. Pediatrics 2013; 131(4):786-793.
SOURCES
• Janet L. Dolgin, PhD, JD, Co-director, Hofstra Bioethics Center; Director, Gitenstein Institute for Health Law and Policy, Hofstra University, Hempstead, NY. Phone: (516) 463-5873. Fax: (516) 463-4800. Email: [email protected].
• Matthew R. Kenney, PhD, Vice President, Mission and Ethics, Saint Francis Hospital and Medical Center, Hartford, CT. Phone: (860) 714-4880. Email: [email protected].
• Mary A. Ott, MD, Associate Professor of Pediatrics/Adjunct Associate Professor of Philosophy & Bioethics, Indiana University School of Medicine, Indianapolis. Phone: (317) 274-8812. Fax: (317) 274-0013. Email: [email protected].
• Dennis M. Sullivan, MD, Director, Center for Bioethics, Professor of Pharmacy Practice, Cedarville (OH) University. Phone: (937) 766-7573. Email: [email protected].
In the controversial “Cassandra C” case, a 17-year old Connecticut girl diagnosed with Hodgkin’s lymphoma was ordered by the state Supreme Court to undergo chemotherapy against her will. The girl refused further treatment after undergoing surgery to remove a lymph node, but as of press time is being kept in a hospital room under court order.
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