Thursday, January 15, 2015

Connecticut court rules against teen who didn’t want chemo

Excerpted from Girl says she knows she'll die without chemo,” The Associated Press. January 8, 2015 — A 17-year-old girl being forced by state officials to undergo chemotherapy for her cancer said Thursday she understands she'll die if she stops treatment but it should be her decision. The state Supreme Court ruled earlier in the day state officials aren’t violating the rights of the girl, Cassandra C., who has Hodgkin lymphoma.

Cassandra told The Associated Press in an exclusive interview from her hospital it disgusts her to have "such toxic harmful drugs" in her body and she'd like to explore alternative treatments. She said by text she understands "death is the outcome of refusing chemo" but believes in "the quality of my life, not the quantity." Cassandra will be free to make her own medical decisions when she turns 18 in September. She, with her mother, had fought against the six-month course of chemotherapy. The case centered on whether the girl is mature enough to determine how to treat her Hodgkin lymphoma, with which she was diagnosed in September. Several other states recognize the mature minor doctrine.

Cassandra is confined in a room at Connecticut Children's Medical Center in Hartford, where she's being forced to undergo chemotherapy, which doctors said would give her an 85 percent chance of survival. Without it, they said, there was a near certainty of death within two years.

The teen's mother, Jackie Fortin, of Windsor Locks, said after the arguments Thursday that as a single mom for the last 15 years she wouldn't allow her daughter to die. She said they just want to seek alternative treatments that don't include putting the "poison" of chemotherapy into her body. After Cassandra was diagnosed with high-risk Hodgkin lymphoma, she and her mother missed several appointments, prompting doctors to notify the state Department of Children and Families, court documents say. Child welfare agency officials defended their treatment of Cassandra, saying they have a responsibility to protect her.

Commentary

Dr. Nick YatesCMDA Member and former member and chair of the CMDA Ethics Committee Nick Yates, MD, MA (Bioethics): “Adolescent decision-making has troubled parents for eons, and there is – likely – no relief in sight. The American Academy of Pediatrics has much to say on this topic. Many experts in adolescents feel that teenage decision-making is informed by 1) a teen’s feeling that ‘rules’ don’t directly apply; 2) that peer relationships guide decision-making; and 3) that a teen’s reasoning often disregards germane information.

“Recognizing these potential limitations in forethought, a teenager attempting to engage in life or death decision-making must demonstrate decision-making capacity. Typically this is acknowledged through ‘informed consent’ – which is acknowledged when an individual has full medical information and decision-making capacity and can make a decision that is free from coercion. Decision-making capacity, while being more complicated (to acknowledge), does not necessarily require a legal determination, but it does require demonstration that the teen knows and understands the medical information, is able to weigh the ‘pros and cons’ and is willing to make a decision between medical options. Decision-making capacity is demonstrated when one is complicit with routine medical evaluations and demonstrates mature behavior. ‘Standard and routine’ life-saving medical therapies may be declined under the proper setting if informed consent is recognized.

“When attempting to obtain court approval for end-of-life decision making, the teen must demonstrate maturity, dignity and decorum. Age is not necessarily a disqualifying factor, but immature or improper behavior certainly might be. Decision-making capacity may not be granted if medical appointments are missed and if a patient is missing for a week.

“End-of-life decision making is difficult under the best of circumstances, and it certainly must not be a platform for pontification.”

Resources

CMDA’s Patient Refusal of Therapy Ethics Statement
American Academy of Pediatrics Statement on Informed Consent
Bioethics Series: Informed Consent

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