After months of argument about whether Oregon should strengthen its requirement that all children be vaccinated, the debate about how far an Oregon parent’s right to refuse established medical advice is back on the national radar. This time it involves CBD, a flashpoint in medical research as cannabis is slowly legalized.
Kylee Dixon, 13, became an emblem of the debate when her mother, Christine, was accused of defying a court order to deliver Kylee to state care in order to prevent her from getting a surgery to remove a cancerous tumor from her liver.
Kylee, of Wilsonville, is back in state custody and living with a foster family. Earlier this month, she met with a naturopathic doctor and her oncologist at OHSU Hospital, according to an attorney for the Oregon Department of Justice. They will likely recommend a mixture of both styles of treatment going forward.
But Kylee and some of her family are still trying to avoid what doctors say is a life-saving operation.
The 13-year-old maintains that she does not want the surgery. Instead, she wants to resume the course of treatment her mom insists would work: CBD oil.
A Clackamas County judge this week ruled that she wouldn’t stand in the way of Kylee receiving surgery to remove the tumor — despite Kylee and her mother’s objections.
“I’m not a doctor,” said Judge Heather Karabeika. “I let medical professionals handle what they think is most appropriate given their experience and knowledge.”
Medical professionals almost universally agree that there are no proven cancer treatments that rely solely on natural medicine. Yet parents who question established — or Western — medical treatments have turned to CBD en masse.
Cannabidiol is one of the hundreds of compounds in hemp and has exploded into the national consciousness recently in a variety of products.
CBD is added to food, beauty products and lotions and is advertised as a cure-all.
Researchers say that CBD is promising in many of these uses. Oregon State University recently announced a university-wide move to become a leader in hemp studies. Companies have started to cash in on the CBD craze.
But many of the most attractive claims are still unproven.
The only federally approved CBD-based medication is for epilepsy. Epidiolex is taken orally to help control seizures.
The success of the treatment has given hope to researchers and advocates who think CBD holds the key to more natural remedies to common and severe diseases and conditions.
There are dozens of trials on animals that indicate there are potential uses for CBD in treating Parkinson’s, Alzheimer’s and cancer. But experts warn that there is nowhere near medical consensus to eschew proven treatments in favor of hypothetical ones.
Peter Grinspoon, a Harvard Medical School instructor and medical cannabis researcher, said that people who tend to reject vaccines or other modern medical science gravitate toward the untested possibilities of CBD.
“The science with CBD is very intriguing and suggestive,” Grinspoon said.
He expects CBD to play a major role in cancer treatment in the next 10 years. It already has shown it could possibly be used to manage pain. But he cautioned that no one has gone so far as to find a reason to trust it over surgery or chemotherapy.
“It’s just magical thinking to think that CBD is going to cure a large solid tumor,” Grinspoon said. “We can’t say for sure it won’t, but we have no evidence it will. And certainly it could put a child’s life in danger.”
That hasn’t stopped some families from trying anyway — often with results that end in child welfare court.
Months before the Dixon case, a Florida 3-year-old with leukemia was removed from chemotherapy by his parents and taken to Kentucky to avoid state intervention.
The parents wanted to treat the child exclusively with CBD oil, alkaline water and a special diet. Eventually, the child was found, sent back to Florida and placed with his grandparents.
In May, a Florida judge ordered the boy to be placed in chemotherapy again.
These cases have led advocates of complete parental rights to make medical decisions to rally around Kylee’s case as an example of what they call “medical kidnapping.” Kylee’s mother and relatives keep a Facebook page that chronicles what some see as
her persecution by Oregon child welfare authorities and doctors.
Kylee’s mother claims that the CBD oil she gave her reduced the cancerous tumor by 90 percent; however, that has not been publicly verified by doctors.
Christine Dixon did not participate in the Monday hearing because there is a warrant for her arrest on the charge of kidnapping, a felony. She also refuses to provide Kylee’s case manager at the Department for Human Services with a phone number to reach her, and won’t call directly to the case manager’s office because she fears it could be used to locate her.
She is allowed phone visitations with Kylee but has not been able to participate in them for several weeks because of that.
Christine Terwilliger, the lawyer for the state, said that a case manager must monitor the calls because officials fear Christine Dixon will again try to give Kylee instructions on how to escape foster care.
Christine Dixon still operates a Facebook page where she chronicles the case. She uses the platform to rally supporters from around the country who have begun to call the intervention of the state “medical kidnapping” and plead for Kylee to be allowed to refuse surgery.
In her mother’s absence, Kylee maintains that she would prefer not to undergo surgery.
“She really isn’t there. She wants the treatment that she believes in more efficacious and less disruptive,” said her attorney Rebecca Schaleger. “At this point if the state moves forward and decides to schedule surgery, it would be 100 percent against what she wants.”
While Oregon allows teenagers to start making significant decisions about their own health, including whether to get vaccines, Kylee is still too young to reach that threshold.
The Department of Human Services obtained recommendations from several doctors at hospitals in Oregon and Washington who all agreed that surgery is the best route for Kylee. Otherwise, her tumor could grow and spread to other organs.
According to the state, Kylee has at least a 70% chance of stopping the cancer’s spread with surgery.
“As a general rule, a minor should not be permitted to refuse life-saving decisions,” said state attorney Terwilliger. “DHS is following what we believe the route that a reasonably prudent parent would follow in making decisions that would extend the life we have become the guardian of.”
The question of where the state is allowed to intervene in medical decisions has risen to the front of many parents’ minds this year as a measles outbreak tore through the Clark County area — and into Oregon.
Some parents refused to vaccinate their children, despite the risk of a potentially fatal measles infection.
Then, the federal Centers for Disease Control and Prevention published the case study of an Oregon child whose parents declined to vaccinate him against tetanus after spending more than a month in a dark room without sound or stimulation because of a life-threatening tetanus infection.
He was released back to the farm he contracted the infection from without any protection against getting it again.
But the bar is high for the state to mandate medical care for a child. The state must prove the child is in real and imminent danger from a parent’s decision.
In this case, the line seems to be more clear cut for the court. Karabeika, the judge, listened to nearly an hour of testimony about whether Kylee should be required to be treated against her and her mother’s wishes but didn’t equivocate when she said she would let the state make the call.
“They want you to be well, everyone loves you and they want you to be healthy, and that’s the goal,” Karabeika said.
— Molly Harbarger
mharbarger@oregonian.com | 503-294-5923 | @MollyHarbarger
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