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Teen's fight for medical autonomy leads to new law
Law says refusal of care does not always equal neglect
Virginia has enacted a new law that will allow mature teenagers, their physicians, and parents to more freely consider alternative — even risky and controversial — therapies and reject traditional treatment without fear that doing so will trigger neglect and abuse charges.
"Abraham's law" is named after a 16-year-old Chincoteague, VA, boy, Abraham Cherrix, who won a court battle in 2006 to seek alternative therapy for a recurrence of Hodgkin's lymphoma, but only after the state Department of Social Services had charged his parents with neglect, threatened them with jail, and attempted to remove Cherrix from their custody.
While months of legal wrangling resulted in a compromise that permits Cherrix to pursue alternative treatments for his cancer (he also has since opted to add radiation treatments), it left his family in shambles. His parents have separated and lost their home and business.
"I believe that this law being passed has opened the door for physicians and patients to discuss more," says Rose Cherrix, Abraham's mother, who lives with her six children in Floyd, VA. "I believe that if parents are afraid of being dragged into court because they disagree with a physician, then more parents will stop taking their children to a doctor and one time it will be too late for the child."
Abraham's law is not so much an endorsement of young people's right to seek out alternative therapies as it is a relaxing of laws that made it difficult — if not illegal — for parents to refuse medical treatment for their children.
Under the new law, parents would be allowed to refuse a medical treatment for their child and not face charges of neglect if four conditions are met:
Cherrix was diagnosed in 2005 with Hodgkin's lymphoma after he found a suspicious lump in his neck. He underwent three months of chemotherapy at Children's Hospital of the King's Daughters in Norfolk, VA, and says the treatment made him deathly ill.
"It poisoned me," he told Medical Ethics Advisor. So when follow-up tests in early 2006 showed cancer was still present and doctors at Children's recommended another round of chemotherapy, Cherrix said "no."
He and his father, who had been helping his son research alternative, diet-based therapies, traveled to Mexico to explore a treatment called the Hoxsley method, offered by a clinic in Tijuana. Based on an organic diet and herbal supplements, some of which are ingested and some of which are applied topically, the Hoxsley method is illegal in the United States under FDA safety rules.
At that point, someone reported his case to child abuse investigators in the county where he lives, and the Department of Social Services asked a court to order Cherrix to continue conventional treatment and obtained a temporary order saying the Cherrixes had neglected or refused to provide necessary treatment for their son. Cherrix was placed in joint custody of his parents and social services, an action the family said was devastating to them. Cherrix refused the chemotherapy, and went to court to argue his right to choose or reject therapy options.
At the time, Michael Gillette, MD, an associate professor of family medicine at the University of Virginia and president of Bioethical Services of Virginia Inc., said Cherrix was charting new territory in Virginia health law.
Virginia did not — and still does not — have a mature minor statute, which in some states recognizes older minors' right to consent to or refuse medical treatment, so Cherrix had no precedent to back him up. But in late 2006, a judge, impressed by Abraham's maturity and grasp of the issues and risks and convinced that his parents were acting in what they believed to be his best interest, brokered a compromise that permits Cherrix to be treated by a physician in Mississippi — a board-certified oncologist who specializes in blending traditional and alternative treatments for cancer.
Rose Cherrix says her son currently is in remission and being monitored by his local doctor in Virginia.
Law doesn't change health law
Abraham's law — an amendment to the state law on abuse and neglect, not a change to any health care law — "is an interesting law, in part because I don't think it really changes anything," says Gillette.
"This is not a law that creates a presumption of capacity on the part of a mature minor. It's a revision to the abuse and neglect statute that removes an assumption that refusal of health care is, by itself, abuse and neglect."
Virginia Gov. Timothy Kaine, at the bill's signing, said the statute strikes a balance between the rights of the parents and mature children to make health care decisions and the responsibility of the state to protect children.
In exchange for relieving the burden of concern about care choices being deemed neglectful, Gillette suggests, the law brings with it new questions that will probably land families in court anyway.
"The statute says you have to be 14 and capable of giving informed consent, but it doesn't spell out what that means," he points out. "So there could still be any number of situations where an individual can question a child's maturity, or whether or not other means of treatment have been investigated.
"But what it will change is that if [the Department of Social Services] believes that those [conditions] are met, they won't have to act on the refusal of treatment as if it were neglect."
Rose Cherrix says that even though Abraham's law doesn't create a mature minor provision or even change existing health care law, she believes it will serve an important purpose by opening lines of communication by removing the barrier of abuse and neglect charges.
"When his doctor from Virginia Beach called me [in 2006, when Abraham's cancer reoccurred] to ask when I was going to schedule him to start preparing for the chemo, I told her that we had decided to try something else and asked her to monitor him while we did it to make sure he wasn't getting worse. She refused," Abraham's mother explains. "When I asked her why, she said that she did not agree with us. She never asked me what we were thinking about doing or if we were getting a second opinion. She just called social services and called it medical neglect."
She says that she wonders what might have happened had his original doctor not accused her and her son's father with neglect, but opted instead to monitor his condition while helping the family explore alternatives to the chemotherapy that Cherrix refused.
"Those answers we will never know, but her decision to not communicate or help keep an eye on him affected our whole life," Rose Cherrix insists. "The power she held in her hands was incredible. Now, with Abraham's law, maybe a physician who otherwise would not discuss other options ... will continue with them instead of [assuming that the child's welfare is being neglected]."
Gillette says that while the law has some vague points, he doesn't believe it's a bad law.
"I don't think it creates any problems, and it may eliminate some," he says. "It won't radically change the questions a physician has to ask before granting alternative care, but it simply puts on paper the questions physicians have to ask before calling social services, and gives social services more leeway in determining whether a patient's and family's decision is neglect."
Douglas Diekema, MD, MPH, director of education for the Treuman Katz Center for Pediatric Bioethics at Seattle's Children's Hospital and Regional Medical Center, says laws such as Abraham's law reflect how medicine's attitude toward patient autonomy in children is evolving.
"If you're faced with a 16- or 17-year-old who really doesn't want to [undergo chemotherapy], if it's a second relapse and they're looking at, say, a second bone marrow transplant, we'd let an adult make that decision [to forego treatment], and not necessarily think they were making a terrible choice," says Diekema. "So there can be strong cases to make for accepting an adolescent's choice."
(Abraham Cherrix has created a web site to document his treatment and pursuit of medical autonomy for minors — www.abrahamsjourney.com/Abraham.)
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