Have you been following the “Starchild” chemo-refusal court battle? It’s one of the most vexing ethical, political and philosophical controversies you can imagine. One that involves ambiguities and gray areas galore.
And one that brings back to me a memorably strange moment in Tijuana, in one of the questionable “cancer cure” clinics clustered below the border beyond the (U.S.) law. A moment when I took a swig of the mysterious “Hoxsey tonic,” the elusive “cancer cure” elixir that is at the heart of the “Starchild” controversy.
The case involves a 16-year-old Virginia boy with the legal name Starchild Abraham Cherrix. (He now goes by the name Abraham.)
Diagnosed with Hodgkin’s disease at 15, he went through a three-month round of chemotherapy that left him ravaged and, alas, did not prevent an apparent reappearance of the cancer less than a year later.
Thus began the conflict: His doctors ordered another round of chemo, but with the support of his parents, young Abraham has asserted the right to refuse the ravages of a treatment modality that had failed before—and to pursue his own course, which has been described as a combination of a no-sugar diet and trips to Tijuana to be treated at the Hoxsey clinic down there. The place where I once tasted (as a reporter, not a patient) the banned-in-the-U.S.A. tonic.
In any case, a social worker reported the chemo-refusal situation to the authorities, and a Virginia judge initially ruled that Abraham must be forced to follow his doctors’ orders and undergo a second round of chemo whether he wanted to or not—and the parents must give up a share of custody of their child to the social-services department. Which raised all sorts of moral, ethical and civil-libertarian issues. Especially because his age, 16, put him in a legally ambiguous borderline temporal realm.
Opponents of the juvenile death penalty, for instance, argue that 16-year-olds should be considered “juveniles,” not adults—as persons not fully responsible enough to be executed for a murder committed at that age because they’re not capable of making a fully responsible “adult choice” to kill. On the other hand, pro-choice opponents of “parental notification” abortion laws argue that 16-year-olds should be considered adults, at least enough to be given the right to make abortion-related decisions without parental interference.
The Cherrix family appealed the first court decision, which might have meant Abraham would have to be strapped down and injected with drugs against his will. Then a second judge stayed that order until a trial, now scheduled to begin Aug. 16. Young Cherrix has expressed his feelings this way to the Associated Press: “I’ll fight until I do die. I’m not going to let it go. I would rather die healthy and strong and in my house than die in a hospital bed, bedridden and unable to even open my eyes.”
It’s a moving and heartfelt plea, but a problematic one as well. My instinct to support young Cherrix on libertarian grounds is undermined by the not quite fully developed thought process this statement suggests.
Is the choice he faces really the one he poses? Does one die from cancer (or any illness) when one is “healthy and strong”? Or is the fact that he feels good now deceiving him? Is he thinking like an “adult” or like a “juvenile” who needs advice and protection? Of course, the thought processes of many adults are not necessarily “fully developed,” but that’s not because of their age.
Is Abraham capable of making a rational choice? Does the state have the responsibility or the right to step in and make what it thinks is the rational choice? (Especially when states are not notable for their record of “rational choice.”)
Complicating things further is the debate over the efficacy of chemo in such a case. Some cite an 80 percent five-year survival rate with Hodgkin’s when treated with chemotherapy, but it’s not clear if those optimistic stats hold up if the first round of chemo fails, as it did with young Cherrix.
And what if it were 80 percent? At what point, at what percent should a family, should a 16-year-old, have the right to make a decision about the odds, the risks and the consequences of an “alternative” medical course of action on their own? Does he have the right to decide the quality of his life, even if it means hastening his death? And what should we think about the alternatives, as practiced by the “cancer cure” clinics of Tijuana, that the Cherrixes have chosen?
An Excursion to the Clinics of Tijuana
The clinic that left the most lasting, creepy impression on me was the deluxe clinic near Ensenada, down the Pacific coast from Tijuana on a cliff overlooking the Pacific surf, a cliff that had once been the site, so we were told, of an Aztec human-sacrifice ritual. With its mysterioso sinister vibe, this clinic couldn’t help but recall to me the sleazy rich “rehab” clinic in The Long Goodbye, Raymond Chandler’s most brilliant L.A. noir.
It was the clinic where the actor Steve McQueen spent his last days in the futile hope for a cure for his mesothelioma, one of the most incurable cancers. And the trip took place shortly after the death of Abraham’s forerunner, a child named Chad. Chad was about 3 then, and it was his parents’ decision to go the Tijuana route, choosing a clinic known for its then-faddish “laetrile” treatments for Chad’s leukemia.
The episode first raised the still-unresolved question of whether the state or the family has the right to make medical choices for children, and the whole issue was clouded by disputes over the cause of Chad’s death that arose not long after he died in Tijuana. Death seemed to be stalking these clinics and their “alternative cures.”
And yet, earlier in the day, the carful of cancer patients I was traveling with—I was doing a story which can be found reprinted in The Secret Parts of Fortune—had a different experience in Tijuana itself. In shabby clinics cheek-by-jowl with auto theft/repair junkyards and in grand, deluxe, ocean-side playas, we had fascinating talks with some of the patients. We hit the historic Tijuana clinic hotspots, among them the Hoxsey clinic, a kind of relic of a charismatic “healer,” Harry Hoxsey, who in the first half of the last century peddled a mysterious “tonic” in clinics in 17 states before he was driven by the law beneath the border.
At the time I visited the clinic, it was being run by Hoxsey’s original nurse, a kindly-seeming woman who gave one particularly impoverished member of the carful of cancer patients I was traveling with a bottle of the tonic gratis. When I ventured that I’d like a taste, she poured out a little from a large brown bottle into a paper cup. It tasted like gnarly cough syrup. The problem with the Hoxsey tonic is that there has been a running dispute over its actual composition and thus, to my knowledge, there have been no clinical trials of its value. Indeed, in one of the paradoxes I found in the below-the-border realm, “value” is something these remedies are endowed with by the patients rather than vice versa.
Later, we went to the Gerson clinic, run by the daughter of a German Jewish doctor, Max
Gerson, a key character in the John Gunther memoir of his son’s cancer, Death Be Not Proud. Gerson believed in a strict regimen of liver juice and coffee enemas (brand extension for Starbucks?). And we went to the prosperous laetrile clinic where Abraham’s forerunner Chad and his parents futilely sought “alternative” treatment.
What was fascinating was that at each clinic, we found patients who testified to being “cured.” It was anecdotal (although some provided before-and-after X-rays). For all we know, they could have been ringers paid by the clinics to sit in waiting rooms and offer false hope. But it didn’t seem that way. There were enough people in the clinics whose stories about being given up by orthodox doctors and finding new life below the border rang true to give one pause.
I’ve evolved a theory of the below-the-border “cancer cure” clinics, which is that the science, almost without exception, is bogus—but that the cancer patient’s decision to make the break with orthodoxy, to cross the border (a border that is not just geographic but psychological), to take control of one’s destiny and place one’s faith in a cure (however baseless its science), in the psychogenic power of hope (even false hope), might have had some hyped-up placebo effect in making a difference in the lives of those who went that route.
A “false-hope cure”? Well, as I’d put it, “false hope springs eternal,” and there’s growing evidence for the power of the placebo effect.
One can have disdain for the pseudo-scientific, holistic nonsense peddled by the false-hope clinics, but if someone gets to live a little longer by virtue of the false hope/placebo dynamic, should one deny them that chance? Especially in cases of cancers where round after round of ravaging chemotherapy hasn’t offered any hope at all?
So where does that leave Starchild Abraham Cherrix, his parents, the courts, the social workers, his doctors? I just don’t feel I know enough to know. Libertarian instincts and scientific rationalism are generally on the same side, except here strict libertarianism requires a defense of the right to hold false, even self-destructive beliefs. Here libertarianism and scientific rationalism, empathy and efficacy, seem to be in conflict.
You make the call.
Follow Ron Rosenbaum via RSS.