When minors choose risky, alternative therapies
Virginia teen foregoes chemo for herbal remedy
Abraham Cherrix is a 15-year-old boy with Hodgkin's disease. He's also an Internet-savvy free thinker who doesn't want to do another round of chemotherapy and radiation; what he wants to do is go to Mexico for a controversial herbal treatment he hopes will cure him.
He has the support of his parents, but to his doctors, hospital, and the Commonwealth of Virginia, he is risking his life and his parents are helping; this case of a patient seeking alternative therapy has ended up in court, with not only Cherrix's health but also his parents' continued custody in question.
For cases of minors or their parents resisting standard care in favor of alternative remedies, ending up in court should be a very last resort, says Douglas Diekema, MD, MPH, interim director of the Treuman Katz Center for Pediatric Bioethics at Children's Hospital in Seattle.
When he is called to consult with a doctor whose patient or patient's family is making a treatment decision the doctor feels is not in the patient's best interest, Diekema tries to help find ways for the discourse to continue, so that both sides don't end up digging their heels in and wind up in court. The key, he says, is in both sides maintaining respect for each other.
"And going to the state is inherently disrespectful," he says. "Talking about each option is the respectful approach, and that builds trust, and trust is frequently the most important part of the relationship between doctor and patient."
Who should decide care, and when?
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 (CHKD) in Norfolk, VA, treatment that he says made him deathly sick.
"It poisoned me," he says. "It was the worst I ever felt in my life."
When follow-up tests in early 2006 showed cancer was still present, doctors at Children's recommended another round of chemotherapy. Cherrix, who had begun researching alternative therapies when he was first diagnosed, said no.
He and his father, who helped his son do research, had settled on a treatment called the Hoxsley method, offered by a clinic in Tijuana that is based on an organic diet and herbal supplements, some of which are ingested and some of which are applied topically. Someone — Cherrix and his family are not certain who — 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.
A judge ordered tests to see if the cancer had progressed, filed a temporary order saying the Cherrixes had neglected or refused to provide necessary treatment for their son, and placed Cherrix in joint custody of his parents and social services. Cherrix is permitted to continue living at home. He went to the hospital as ordered in May, but refused to have the diagnostic work done.
According to an expert on medical ethics in Virginia, Cherrix may be charting new territory.
"Virginia does not have a mature minor statute [which in some states recognizes older minors' right to consent to or refuse medical treatment], so there is no staged ability for adolescents to gain more and more authority over their own health care," says Michael Gillette, MD, a professor at the University of Virginia School of Medicine and president of Bioethical Services of Virginia, a bioethics consulting firm.
Minors in Virginia cannot give consent to or refuse medical care unless they are emancipated — either by being in the military, being married or being declared emancipated by a court.
Diekema says he believes patients are better served if treatment decisions can be made jointly by the patients (or their surrogates) and their physicians.
"The standard we usually use with parents in deciding when to consider state intervention is if their decision places the child at significant risk of substantial harm, above and beyond what [harm] they'd face if they pursued the path the physician chose," says Diekema. In Cherrix's case, regardless of what his physicians think, he firmly believes that chemotherapy is worse for his body than the herbal remedy he began taking in the spring during a visit to the clinic in Mexico.
Cancer patients are perhaps the most likely patients to seek alternative cures, particularly after an unsuccessful experience with traditional therapy. That's because the disease is so serious and the side effects of conventional treatment are so uncomfortable.
"In oncology, the point at which the parents start looking for alternative therapies is when standard therapy is not successful the first time around," according to Diekema. "And I don't think it's unreasonable for a parent to pursue [alternative therapy], so long as it doesn't put the child at risk anymore than, say, a Phase 1 clinical trial."
Consent to an X-ray — but just one
Back in court in June for a hearing to determine his competence to make his own health care decisions, Cherrix and his parents received no decision on custody and no decision on competence. But they did win one of their battles — the judge agreed to let Cherrix's parents take him back to Mexico later in the month, provided he let the hospital in Norfolk take an X-ray of the tumors in his neck and chest.
"The judge said that if I would get a CAT scan from CHKD, that he would allow me to go to Mexico for my medicine and to see my doctor," Cherrix told Medical Ethics Advisor after the hearing. "I agreed to one snapshot [X-ray], and one snapshot only. I really just want to get to my other doctor in Mexico; so it seemed fair enough."
He says he does not want the multiple radiation exposures that a CAT scan would entail.
The judge also said he would welcome medical evaluations from the Mexican clinic to take into account as he decides whether Cherrix should determine his own care.
After two months on the Hoxsley program, Cherrix believes he is getting better.
"I feel more alive, and can tell an incredible difference," he says. "I feel better than I did before I was told I had cancer."
Difficult decisions involving children
Cherrix's case is unusual in many ways, including his desire to entirely exclude conventional medicine. Doctors say that usually patients want to incorporate an alternative therapy in a way that complements — or, in the case of cancer patients, eases — the effects of standard treatments, such as using aromatherapy and herbs or roots like ginger to help calm the nausea that accompanies chemotherapy.
Diekema says that in some cases, such as a child newly diagnosed with leukemia who has perhaps a 90% chance of recovery with treatment, the decision to pursue conventional treatment is fairly obvious.
"But maybe you have a child with a much poorer outcome for survival, then that's different," he says. "If the odds are less in favor of the child and treatment has a fair amount of toxicity — when you add that into the equation, and if the child agrees with the parents — it makes the case stronger for not pursuing state interventions."
Gillette says that while there are situations that demand forcibly overruling parents' or minors' decisions to veer from conventional therapy, as well as times to agree to those decisions or to part company, such decisions often don't come easily.
"The most difficult cases are when patients force us to within a hair's-breadth of the standards of care," he says. "It's easy when they go way beyond the boundaries or when their request is well within the boundaries of the standards of care."
In a few states, the doctrine of the "mature minor" exists in statute, allowing courts and physicians to take into account the age and situation of the minor, in context with the decisions being made, to determine if he or she is capable of making those decisions alone. Typical wording of the statute states that any unemancipated minor of sufficient intelligence to understand and appreciate the consequences of proposed surgical or medical treatment or procedures may offer consent on his or her own behalf.
The mature minor doctrine has been consistently applied in cases in which the minor is 16 years or older and understands the medical procedure he or she faces or requests — but primarily only when the procedure is not serious. Application of the doctrine in more serious circumstances has seen mixed outcomes
Try to understand motivation for decision
Diekema says that even when there is little chance the physician will agree with the decision to reject traditional care, he or she should make an effort, repeatedly if necessary, to understand why the patient or the patient's parents want to make that decision.
"We should try to understand what's driving their desire to pursue something else," Diekema says. "Perhaps, if they suffered greatly during a previous round of treatment, a decision could be made for better symptom control. Maybe the drug that caused the symptoms in the first cycle won't be used the second time."
The doctor's No. 1 obligation, Diekema says, should be to work with the patient, respect his or her concerns, address them honestly, and try every way possible to strike a compromise that satisfies the medical, ethical, and autonomy questions that swirl around these situations. (See See table for other suggestions.)
If the patient or the parents are laboring under misconceptions about conventional treatment or the alternative therapies they are considering, Diekema says the physician is obligated to try to provide clarity. In the case of alternative therapies, the Internet provides endless sources of information, some of which are not particularly balanced, he points out.
"Maybe you can provide the patient some alternative sites to look at, but overwhelmingly, the most ethical approach is to take the time and try to work with the family," he says. "Many families will come around, and that's one of the advantages to taking a respectful approach, is that it builds trust."
Even if the physician is doubtful that the alternative therapy will help, if it is something that does not interfere with or complicate the conventional treatment, he or she should suggest an "in addition to" rather than an "instead of" course.
"I have taken care of a patient who was taking St. John's Wort, which was interacting with her chemo, resulting in arrhythmia, and the end result was the child spent a week in the hospital being monitored," related Diekema. "But if the family asks for something that doesn't interact in a negative way, then we should do that even if it doesn't fit exactly into standard medical therapy."
Cherrix, however, is insistent that the chemotherapy regimen did him more harm than good, and that a second go-round would be even worse.
"I am capable of making decisions for myself," he says.
Diekema says there are times that the physician is faced with a mature adolescent who perhaps should be allowed to chart his or her own course.
"Another variable is how strongly does the adolescent feel about it? If you're faced with a 16- or 17-year-old who really doesn't want to do this, 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."
Echoing Gillette's comments, Diekema says that if the odds are less clear cut, the decision becomes more difficult.
"If it's not a relapse and you have an 80% chance for a cure, you really want to make that treatment happen, but how far are you going to go to do that? I have asked doctors who are in this position, 'Are you going use physical force to hold a 17-year-old down to administer chemo?''' he says. "The answer is universally 'no,' so there is a line they won't cross. How can you treat cancer if you don't have a somewhat compliant patient?
"That is just another argument for using the dialogue approach, and showing some respect. Sometimes with adolescents there is a desire for some control, especially when they are facing a disease like cancer, and they are pushing their limits to see how much control they can have. The best way to resolve that is to let the adolescent know that ultimately, it is their choice."
(In future issues, Medical Ethics Advisor will update readers on the outcome of Abraham Cherrix's treatment.)
Sources
- Douglas Diekema, MD, MPH, interim director, Treuman Katz Center for Pediatric Bioethics, Children's Hospital & Regional Medical Center, Seattle, WA. E-mail: [email protected].
- Michael A. Gillette, MD, associate professor of family medicine, University of Virginia, Charlottesville; president, Bioethical Services of Virginia Inc., Lynchburg. Phone: (434) 384-5322. E-mail: [email protected]. On the Web: www.bsvinc.com.
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