Some questions for those who decry the decision in the Abraham Cherrix case

Not surprisingly, since the court decided that Abraham Cherrix, a Virginia teen who was diagnosed with Hodgkin’s disease at age 15, underwent chemotherapy, relapsed, and then refused to undergo any further chemotherapy, opting instead for an “alternative medicine” treatment known as the Hoxsey treatment, to be administered at the Biomedical Center in Tijuana, the blogosphere has been abuzz with chatter about the decision. Not surprisingly, I find myself in the minority in approving of the decision, even if I do so reluctantly. Indeed, not only do I find myself in the minority, but I find myself in a seemingly very tiny minority in the blogosphere. Some of those who have responded have accused me of “partying” over the decision, even though anyone with any reading comprehension whatsoever could see that my reaction, reluctantly and marginally approving as it was, could not be appropriate characterized as “partying.” Other reactions to the decision in the blogosphere have been unrelentingly hostile, ranging from characterizing it as “forced poisoning“; the “nanny state” run amok; part of the “arrogance” of the U.S. medical profession because in our belief in evidence-based medicine we consider many of the alternative medicine clinics in Tijuana to be pushing quackery; another example of “Big Brother” (of course); and, as part of some really egregious rhetoric by a hardcore altie, “death by lethal injection.” There were even some truly Hitler Zombie-worthy analogies, with over-the-top references to the Nuremberg Code and “children concentration camps.” Perhaps the least inflammatory rhetoric simply suggested that Abraham should apply for emancipation, but even that suggestion was couched in language suggesting that this ruling was an atrocity that needs to be fought at all costs, provoking calls to “call the judge” and overblown concerns that judges might start locking parents up for not taking their child to a doctor when they get the flu.

Indeed, the situation was so bad that at the time of this search, I could only find one other blogger who agreed with me, and he is a doctor too. I was tempted to address some of the more hysterical rhetoric, but decided that it’s not worth it. When hysterical twits like Mike Adams (a.k.a. the Health Ranger) start claiming that alternative medicines do better than conventional medicines, confidently and ignorantly asserting that most diseases can be cured without drugs or surgery, ranting in essence that the “guv’mint’s comin’ for yer children” (and you), and routinely portraying conventional doctors as slavering, greedy monsters and tools of big pharma, who are just waiting for the chance to force their patients to submit to their wills and let them inject poison into their veins, his hyperbole speaks for itself, at least to reasonable people. In any case, I’m not likely to change the mind of anyone who actually believes such X-Files-worthy conspiracy theories, anyway.

Nonetheless, I thought I’d add a little more before I give this case a rest and move on to other topics (barring additional developments that pique my interest, of course).

I want to emphasize one more time that, although reasonable people can disagree on where parental rights end and the obligation of the state to step in when parents undertake courses of treatment that will lead to the harm or death of their children begins or whether Abraham, now 16 years old, is old enough to make such a decision, there should be no doubt about the scientific and medical issues involved in this case. For one thing, this is clearly not a case of Abraham “giving up” and opting for quality of life over quantity of life. All you have to do is to listen to him in his interviews to realize that Abraham really thinks that the Hoxsey therapy has a high probability of curing his cancer and clings to that belief, even though his tumors have clearly grown while he’s been on the treatment. The Hoxsey treatment is quackery, period. Credulous bloggers who seem to believe that it’s a medically valid alternative to chemotherapy need to understand that it is most definitely is not. I realize that I’m not likely to change the mind of hardcore alties on this, but for those who are unsure, thanks to Peter Moran, a retired general surgeon from Australia and also regular on the Usenet newsgroup, we have some evidence showing how worthless the Hoxsey treatment is:

The results at the Biomedical Centre were broadly similar to those of the L-W clinic. Only 17 (11%) out of an initial 149 patients could be established to be alive five years later. 68 were known to be dead, but a colossal 64 were lost to follow-up and therefore had unknown outcomes.

There was also a poorer level of patient documentation at this clinic. Only 85 out of the initial 149 could be evaluated for stage and the researchers rightly did not bother with any full analysis of the results. The types of cancers were similar to those at the L-W clinic except that there were more brain tumours and skin cancers. Four skin lesions described as basal cell carcinoma or squamous cell carcinoma, normally excellent prognosis conditions were included, the numbers of locally (27.3% vs 9%) and regionally confined (26.6% vs 17.9%) cancers were higher, and the number of metastatic cancers lower (38.5% vs 68.3%) than with the L-W group, indicating that this was a much better prognosis group of patients. A similar number had “no evidence of disease”.

Very likely reasons for loss of contact with patients are death, or obvious cancer progression despite the treatment. It can thus be argued that the lost patients are likely to be heavily weighted with poor outcomes. However, even if they survived at the same rate as the others, they would contribute about 13 more survivors (multiply 64 by 17 and divide by 85) creating a 20% overall 5 YSR. Not very impressive in such a patient population .

75% of patients presented to the biomedical centre within one year of diagnosis/ staging.

[Source: Richardson MA, Russell NC, Sanders T, Barrett R, Salveson C. Assessment of outcomes at alternative medicine cancer clinics: a feasibility study. J Altern Complement Med. 2001 Feb;7(1):1-3.]

I now actually recall having seen this study and should have mentioned it. Given the mix of patients, the results were pretty bad. True, one could say that this study doesn’t necessarily rule out a small positive effect. However, it should be remembered that the Biomedical Center is not making a claim for a small positive effect. The adherents of the Hoxsey treatment are claiming an 80% efficacy in curing cancer. If indeed the Hoxsey treatment were anywhere near that efficacious, a review of its records would have shown evidence of its efficacy easily, and I’d be all for investigating it further as a promising new therapy. However, there was precious little in these results to provide even weak justification for further clinical investigation in randomized trials. As Dr. Moran put it:

Such studies cannot exclude the possibility of small effects on cancer survival (actually for either good or ill). What they do demonstrate beyond reasonable doubt is that any beneficial effects of these popular methods are so small or infrequent as to be unlikely to have ever been reliably detected by the clinically inexperienced inventors of the methods, or by later well-meaning supporters, from casual clinical observations.

So, make no mistake about it. By choosing the Hoxsey treatment over conventional medicine, Abraham is choosing death based on a false belief, and his parents are complicit in his choice. With these facts as the background, let me ask all those who are so adamant that Abraham should be allowed to “choose” a few quick questions. They should be very easy to answer–if you’re a zealot. If you’re not, they should be a a whole lot tougher and require a bit of thought and soul-searching:

1. If Abraham and his parents chose crystal therapy or, like Christian Scientists, decided that they would use prayer alone to “cure” Abraham’s lymphoma, would you be as adamant in your belief that the state should not intervene. If not, why not? (Remember, contrary to what many of you seem to believe, there is no difference in efficacy between the Hoxsey therapy and crystal therapy or prayer alone; all are equally worthless. If you’re going to try to claim otherwise, then go to question #4 instead.)

2. If Abraham were 14 years old would you still think that the state has no business intervening in his care? (Consider the case of Katie Wernecke, which is often mentioned in the same discussions as Abraham’s.) What about if Abraham were 12 years old? 10 years old? 8 years old? In other words, is the right of parents to decide medical care for their children absolute, and, if it is not, what are the specific situations in which the state is justified in intervening to overrule the decision of the parents?

3. Are there any circumstances you can envision in which the state should intervene to direct the medical care of a child against the parents’ will? Please give a specific hypothetical example of such a case and explain how that is different from that of Abraham Cherrix. If there is no circumstance you can vision in which the state should intervene to protect a child from a medical choice as bad as Abraham’s, please state so explicitly and justify.

4. For those who think that the Hoxsey treatment is a valid medical option for the treatment of relapsed Hodgkin’s lymphoma, please provide valid scientific and/or clinical evidence that it is any better than doing nothing. Testimonials do not count.

5. This one is for those of you who give Abraham breathtakingly bad advice, such as to “to be as non-compliant as possible with their orders. Make the government charge in with guns blazing to take him to the hospital. Refuse to comply with any hospital officials, thus putting the government in the position of having to point yet more guns at doctors and 16-year olds so as to get their way. Also, make sure the tape is rolling at all times in the camcorder to show the world exactly what is going on.” Do you really think that this advice is in Abraham’s best interests? Or, through this advice, are you instead simply hoping that by resisting so vigorously Abraham will become a sacrificial lamb, a martyr for your political beliefs? Do you just want bad P.R. for “conventional medicine” and the child protective services system of the State of Virginia, the cost to Abraham be damned? Inquiring minds want to know!

The bottom line is that the questions raised by this case are not medical questions. We know the medicine behind the case. We know that Abraham has no chance of survival with the Hoxsey therapy and a decent chance of living a long life if he undergoes conventional medicine. No, the questions raised by this case are primarily political and a balancing of competing rights, such as (1) the rights of parents to raise their children without interference versus the duty of the state to intervene when parents endanger the lives of their children and (2) at what age a teen should be considered an adult, with all the rights to decide his own fate, even if that decision leads to his death. Neither of these questions have easy answers, but those who are so viciously castigating the judge, the State of Virginia, and the health care professional (whoever it was) who reported Abraham to the state are generating a lot of heat, but little light. I’m guessing that we’ll see a lot more of the same beginning today, given that the decision was released right before the weekend.

ADDENDUM: Amazing, I’ve found one other blogger who agrees with me, and she isn’t a doctor.

I would quibble with her reference to abortion, however.

ADDENDUM #2: Bioethicist Arthur Caplan weighs in.

Previous posts on this topic:

Two young victims of alternative medicine

Update on Abraham Cherrix
A “defense” of Abraham Cherrix and his parents?
Magical thinking versus lymphoma
Choosing quackery over evidence-based medicine: When is a patient old enough?
The decision is in: Starchild Abraham Cherrix must have chemotherapy

Technorati tags: , , , , , , ,