Boy, oh, boy, I had to control myself on this one. Yes, dear reader, while I was away this last week and a half, many were the times that I wanted to let loose about this. Fortunately (or unfortunately, depending on your point of view) lack of Internet access at some times and other vacation activities at other times interceded. Now that I’m back home (although not back to full blogging, as I’m still on vacation until Labor Day), it’s time to weigh in.
As you know, I’ve written extensively (some might say too extensively) about the Abraham Cherrix case, the case of a 16 year old boy who won the right to choose the quackery known as the Hoxsey therapy under the supervision of a radiation oncologist who uses an unproven (and to me rather dubious) flavor of “immunotherapy” in Alabama, rather than undergoing the one treatment with a reasonable shot of eliminating the tumor and giving him a chance of long term survival, namely chemotherapy.
Here’s the story:
How that 16-year-old Abraham Cherrix is free to pursue the medical treatment he prefers for his Hodgkin’s disease, a local legislator wants to ensure that others don’t go through the court ordeal that he faced.
Del. John Welch III, a Virginia Beach Republican, said he plans to introduce legislation Monday to strengthen patients’ rights when seeking medical treatment and limit health providers’ and government workers’ intervention in that process.
Welch said the bill, which he plans to call “Abraham’s law,” will apply to minors facing “terminal illness.” He didn’t provide many details about his proposal but said the Division of Legislative Services, a General Assembly team of attorneys and researchers who assist in drafting legislation, is working on the bill now.
He said that if the General Assembly doesn’t act on his bill during its current special session, he will introduce it again during the regular 2007 session.
Never mind that Abraham is not yet “terminally ill” and has a chance of survival if he were to agree to treatment for his relapsed Hodgkin’s lymphoma. This proposed law, had it existed a year ago, wouldn’t have even applied to the young man for whom it’s colloquially named! Even now, it still wouldn’t apply to Abraham, who managed to win the right to follow his heart’s content and let himself die with the quackery of known as the Hoxsey therapy almost to his heart’s content. His only hope is if this new doctor’s “immunotherapy” isn’t as dubious as it looks on his website. Certainly the Hoxsey therapy isn’t going to save him.
In reality, this is the agenda behind this law:
Welch said he has conferred with Abraham’s attorneys and also with health care providers to craft a law to keep families from going through what the Cherrixes experienced.
“The government should be there to assist you, not to hinder you at your time of need,” Welch said. “A parent’s rights are first and foremost.”
So innocuous sounding, isn’t it? Who could argue with such a sentiment? After all, we all believe that parents are responsible for their children and should be able to decide how best to raise them. Here’s the problem. Welch appears to be arguing for parental rights that are absolute, or, alternatively, watering down laws designed to protect children from medical neglect to the point that any form of treatment the parents choose, even the most obvious forms of quackery, is acceptable to the state. My retort to such a sentiment is that it is the child’s right to receive proper medical care that is first and foremost. That’s what must take precedence when parents screw up. The attitude that parental rights are absolute is a holdover from the days when children were viewed more or less as the property of the parents. Welch himself unwittingly pointed out the problem with such a law:
“No one should have any decision over that child but the parent again if there is no neglect no abuse, what makes us as a state be the ultimate parent,” said Republican John Welch from District 21 in Virginia Beach.
Again, unless the state changes the definition of what constitutes “abuse” or “neglect” to remove protections that allow the state to intervene when children’s health or lives are endangered by parents choosing quackery over evidence-based medicine, this law would be utterly meaningless and would have had no effect on the Cherrix case. In fact, even though this law has not yet been drafted yet, it begs more questions than it answers. For example:
She said there are cases in which children need protection from parents who make uninformed decisions that put their lives in danger. “You have to look at the age of the child and the competency of the child, as well as the parents. Are the child and the parents in sync? And what constitutes a terminal illness?”
Indeed, defining what constitutes a terminal illness is a huge problem. For example, even if we take the most pessimistic estimate of Abraham’s chances of being cured with chemotherapy at 25%, I doubt many people would consider that a “terminal” illness because he still has a shot at being cured. If we take the more optimistic upper estimate of a 60% chance, then virtually no one would consider Abraham to be “terminally ill.” In fact, Abraham himself doesn’t consider himself to be terminally ill, as he has said on many occasions that he believes that the Hoxsey therapy can cure him! What about if a child has a 10% chance of survival? A 5% chance? Would those constitute “terminal illnesses”? For adults, we generally don’t permit hospice placement unless the person is estimated to have less than six months to live and virtually no chance of long term survival. Would such a definition be used in this proposed new law? Finally, I have to ask: Why only “terminally ill” children? After all, if the fascistic state dictating to parents how their children should receive medical care is such a big problem, why confine such protections to terminally ill children, a relatively small number of cases? Oddly enough, I’m sort of in agreement with Spunky on this one. My perspective is that, by limiting his law to “terminally ill” children, Welch seems to be wanting it both ways and almost implicitly admitting that the path Abraham has chosen will lead to his death. I would also turn around Spunky’s take on this iissue and ask: Why should terminally ill children be singled out to have their protections against medical abuse weakened in the name of absolute parental rights? Isn’t that in essence “giving up” on them and consigning them to whatever quackery their parents might choose? Remember, not all quackery is benign; some of it can cause a fair amount of suffering in its own right.
As I’ve said before, the Cherrix case has caused me a bit of internal angst, because it pits the right to self-determination (which I value highly) versus my dislike of quackery and seeing a young man seduced by it, even making excuses for it when it clearly isn’t stopping his tumors from growing. If Abraham had been 12 instead of 16, there would have been no such internal conflict, however, as my reticence at coming down reluctantly on the side of the state was influenced by the fact that Abraham is nearly an adult legally. In any case, the bottom line regarding Welch’s ill-advised law is this: To make any real change in how the state deals with cases of medical neglect in terminally ill children, his proposed law would have to significantly water down the protections the state grants to minors when it comes to medical neglect, in essence defining any treatment, no matter how obviously quackery it is, as being acceptable. (In such cases, it is likely that only not providing any care at all would constitute neglect.) After all, if such obvious quackery as the Hoxsey therapy was ultimately deemed acceptable by the State of Virginia, I take that as pretty strong evidence that the present laws are fairly lax already and already give wide leeway to parental rights and wishes. The case of Katie Wernecke is another another example of just how much deference is already given to parental rights in the U.S. in such cases, even the right of the parents to refuse conventional therapy with a fairly high probability of cure in favor of dubious “alternative” medicine. Yes, Katie Wernecke’s and Abraham Cherrix’s parents had to go to court, but once in court in both cases the judge gave wide latitude to parental rights, even letting Katie go to another state for high dose vitamin C, a dubious therapy with no real evidence of efficacy in clinical trials. What advocates of Abraham’s law appear to really want is to render it impossible for the state even to take parents to court in the case of suspected medical neglect, thus neutering the already relatively weak protections that are in place in some states, couching it in terms of “parental rights.” In reality, they believe, as Spunky apparently does, that parental rights are near absolute and that the state should have essentially no right at all to intervene in the case of suspected medical neglect.
In fact, I can’t resist pointing out that, if the proposed “Abraham’s Law” doesn’t significantly change the definition of what constitutes abuse or medical neglect, then it will have no effect at all in such cases! It will be nothing more than a political, feel-good, meaningless response to the Cherrix case designed to garner Welch some votes from the misguided “libertarians” who seem to view the State of Virginia’s attempts to save Abraham from himself and his parents as somehow “fascistic.” In practice, in such a case, it wouldn’t make a dime’s worth of difference in how the state actually handles such cases. It would be nothing more than political opportunism at its most crass.
Come to think of it, that would probably be the “least bad” outcome if this misbegotten law is ever passed. After all, an “Abraham’s Law” with teeth would essentially eliminate any defense children in Virginia have against quackery if they are unfortunate enough to have been born to parents lacking critical thinking skills.