Respectful Insolence

It was just last week that I was made aware of the sad news that Katie Wernecke, the 14-year-old girl with Hodgkin’s lymphoma whose parents’ battle to reject radiation therapy and additional chemotherapy made national news in 2005 and who ultimately went for high dose vitamin C therapy at an altie clinic in Kansas, had relapsed. (Even now, altie vultures are advertising their wares in the comments of the post in which Katie’s father announced her relapse, and chastising a lone MD who posted a comment begging the family to try conventional medicine while there’s still a chance.) As regular readers of this blog know, there is another case of a youth who made the same sort of decision, albeit at an older age where it is less clear whether he is close enough to adulthood to make his own medical decisions, a case that is often mentioned in the same article (or even the same breath) when the case of Katie Wernecke is discussed. The name of the young man at the heart of that case is Starchild Abraham Cherrix, and I’ve blogged about him before.

Now, a mere week after it was announced that Katie Wernecke’s cancer had returned and spread, it turns out that Starchild Abraham Cherrix’s cancer has also spread:

Abraham Cherrix, the 16-year-old Chincoteague boy who fought in court for the right to seek alternative treatment for his Hodgkin’s disease, will require more radiation treatment to treat his condition.

Rose Cherrix, the teen’s mother, said Friday that Abraham’s most recent scans and blood tests show he has swollen lymph nodes in his armpit area, which his doctor advises more radiation to treat.

The swollen lymph nodes could indicate active cancer cells.

Rose Cherrix said the tumors in Abraham’s neck and near his windpipe, however, have not grown since he left Mississippi, where he received low-dose, targeted radiation treatment this fall from Dr. Arnold Smith, a radiation oncologist.

The tumors had shrunk from the time Abraham started treatment in Mississippi in September to when he left in October.

Rose Cherrix said Smith reviewed court-ordered scans this week that Abraham received in December at Sentara Careplex Hospital in Hampton.

He recommended he return to his Mississippi clinic for further assessment and more widespread radiation treatment.

Rose Cherrix said she plans to take him as soon as possible, perhaps within a week.

She expressed hope, however, that she might be able to find a radiation oncologist locally to continue treatment that Smith orders.

Sadly, this is not unexpected. Indeed, I predicted that the radiation would only be likely to be useful for palliation, shrinking the tumors around Abraham’s windpipe to prevent the need for a tracheostomy (not that it was a particularly difficult predictiion to make, although I am surprised that Abraham relapsed this fast after finishing his radiation three months ago). Worse, in pursuing quackery, the family appears to be bankrupting itself and tearing itself apart:

Sharon Smith, no relation to the doctor, is a Chesapeake woman who has been helping the Cherrix family make legal and medical arrangements.

She said the family doesn’t want Abraham to stay in Mississippi for treatment because the cost would be too great.

She also said the Cherrix parents have separated because of stress the family has endured throughout the past year, so a long stay in Mississippi would create a hardship for the family.

The Cherrixes have four younger children besides Abraham.

This makes me wonder if perhaps Abraham’s father has lost faith in Dr. Smith’s dubious immunotherapy or can’t stand exhausting the family resources pursuing treatments that are clearly not working. That’s pure speculation, of course, but Abraham appears to be remaining with his mother Rose, who remains a true believer:

“Even though it hurts to know he has enlarged lymph nodes, at the same time I feel confident in Dr. Smith,” Rose Cherrix said. “I feel confident that what Abraham is dealing with now can be taken care of.”

More radiation my shrink the tumors for a while, but without chemotherapy, Abraham’s long term prospects for survival are grim indeed. He had what I in my admittedly imperfect knowledge estimated to be a slightly better than 50-50 chance of being cured with conventional chemotherapy and radiation, and he threw it away in pursuit of the Hoxsey quackery and then of low dose radiation therapy (an appropriate treatment, just probably not at a high enough dose combined with an “immunotherapy” that has no convincing clinical evidence of efficacy. Even if he accepts chemotherapy again, he’s almost certainly decreased his odds of survival, and if he doesn’t accept chemotherapy again he will probably, like Katie, not see 2008.

And, of course, certain legislators can’t resist using the Cherrix case for political advantage to make bad law:

Abraham’s case led a local legislator, Del. John Welch III, R-Virginia Beach, to sponsor a bill called “Abraham’s law.”

The bill, which Welch plans to introduce Tuesday, proposes that a decision by parents to refuse a particular treatment for a child with a life-threatening condition should not be considered medical neglect so long as the decision is made jointly by the parents and a mature child.

The family also has to have considered the treatment options available, and believe in good faith that the decision is in the child’s best interest.

I’ve already explained why this proposed law is nothing more than cynical political grandstanding of the most vile sort that, at best will have a pernicious effect and at best no effect at all; so I won’t repeat myself. I’m more interested in considering the question: Will you hear about this turn of events from alties who previously gloated when Cherrix won his court case? Probably not, or if you do they will predictably blame the delay of the court case that prevented Abraham from pursuing his desired woo. Perhaps what infuriates me the most are pontifications like this:

My position from the summer is also unchanged. Abraham and his family have the right to decide how to deal with this horrible card that they’ve been dealt, and the state has no business getting involved. Have they paid a price for their decision? Perhaps, but, quite honestly, there is no guarantee that things would have been any different if Abraham had undergone traditional chemotherapy.

Even though I’m sympathetic to the view that the state should not interfere with family medical decisions except under extreme circumstances and indeed was very conflicted when discussing whether the government should try to compel Abraham to accept chemotherapy, the above statement has to be one of the more idiotic things I’ve yet seen written about the Cherrix case. Perhaps the Cherrixes have paid a price for their decision? There’s no perhaps about it! Abraham and his family threw away Abraham’s best chance at survival when they decided to pursue quackery rather than evidence-based medicine. In the process they sank who knows how much money into ineffective therapies, destroying the family finances and probably Jay and Rose Cherrix’s marriage in the process. Even though Abraham will now accept radiation therapy, every day he refuses to accept chemotherapy decreases his odds of ultimately surviving his cancer even further. No “guarantee” that things would have been any different? That’s like saying there’s no “guarantee” you’d get across Virginia faster if you chose to drive a car rather than a horse and buggy. True, the car might break down, fail, and thus strand you, in which case the horse and buggy would probably get you there faster, but it is far, far more likely that it will arrive at its destination many hours before the horse and buggy do. (I admit that the flaw in this analogy is that a horse and buggy will ultimately get you where you want to go; there was no chance that the Hoxsey therapy was ever going to cure Abraham. Maybe a better comparison would be a car versus hoping that a tornado will pick you up and deposit you where you want to go.) Dismissing the consequences of a seriously bad choice with an “Oh, well, it might have turned out this bad even if they had made a much better choice” is nothing more than an obvious (and pathetic) means of excusing that bad choice by someone who, I’m guessing, doesn’t want to admit that it was a bad choice. The bottom line is that Abraham’s odds would have been much, much better if he had undergone conventional therapy. Using the Hoxsey therapy, his odds of survival were in essence the same as his odds of undergoing a spontaneous remission: infinitesimally small. Adding radiation therapy, although it is good palliation, probably has only slightly improved those small odds without chemotherapy, given that other lymph node basins are now apparently involved with lymphoma.

I fear that 2007 will be the year that two unfortunate young teens will be sacrificed on the altar of alternative medicine. When Katie and Abraham ultimately die from their cancers, just don’t look for any acknowledgment that it was quackery that led to their deaths from all those who used their cases as a convenient excuse for demagoguery devoid of any consideration for the complexities of the question of when the state has a duty to step in to save children from medical neglect or what constitutes medical neglect (yes, I’m talking about you, Sean Hannity). Too, don’t expect any admission that the parents bear some responsibility for pursuing quackery over evidence-based medicine (or, in Abraham’s case, in acquiescing to his magical thinking). And especially don’t expect any acknowledgment that the alternative medicine practitioners who administered unproven and ineffective remedies like the Hoxsey therapy or high dose vitamin C to Abraham and Katie, respectively, bear a large measure of responsibility for their deaths. If it’s acknowledged at all, rather than swept under the rug, expect nothing more than a lot of blaming of “conventional” medicine and the doctors, social workers, and governments that tried to save the lives of these two doomed young people.

Comments

  1. #1 anonimouse
    January 8, 2007

    I think the younger Cherrix made a dumb, ill-advised decision that will sadly cost him his life. I think his parents made an equally dumb decision to not insist that he receive standard medical treatment.

    However, as sad as this case is, I still stand by my original thoughts – unless the state can illustrate that Starchild Abraham Cherrix is incapable of making this decision, either due to his age or mental capacity, then the state cannot interfere. This is different from the Wernecke case in that regard, and does not excuse cases of parental neglect for children that are clearly incapable of making medical decisions on their own.

  2. #2 Orac
    January 8, 2007

    Anonimouse,

    I only partially disagree and then mainly by noting thatat the time of his diagnosis and then rejection of conventional therapy Abraham was 15, not 16, as he is now. I would also argue that 15 is about the youngest point in the “gray area” in older adolescents at which I would even start to consider whether they are competent to make their own medical decisions.

    When kids in this “gray zone” make dumb decisions, it is up to the parents to try to set them straight. The Cherrixes have not done that and instead reinforced and defended his bad decision. In my posts in the past, I’ve admitted that it was with great trepidation and uncertaint that I had reluctantly concluded that the first court decision (the one that required Abraham to undergo chemotherapy) was probably correct. And, of course, the Wernecke case is quite different, given that she was 13 when diagnosed.

    My main point in posting this is how all of those who so ranted against the overreaching power of the state or implied that choosing quackery was not the bad choice that it in fact was will fall silent when these two unfortunate kids succumb to their diseases.

  3. #3 anonimouse
    January 8, 2007

    My main point in posting this is how all of those who so ranted against the overreaching power of the state or implied that choosing quackery was not the bad choice that it in fact was will fall silent when these two unfortunate kids succumb to their diseases.

    And I’ve echoed that point before in the Wernecke thread – the history of alties and anti-vaxers is that their martyrs are disposable. Heck, remember Alan “I beat my kid to death but blamed it on a vaccine” Yurko? He was the hero of the anti-vaxers for a while, but once we pleaded out to manslaughter, got released from jail and then (shockingly) got put back in jail, we haven’t heard boo from the folks who were supposedly ready to help him.

    It is clear that Cherrix, Wernecke, et al. are being used by the alties to advance their own agenda and put $$$ in the pockets of the woo-meister doctors. I don’t think they really give a rip what happens to them, and I bet you money they won’t acknowledge it in the least when the inevitable tragic outcome takes place.

  4. #4 TheProbe
    January 8, 2007

    Let’s see if my post makes it to being public over on the father’s site.

  5. #5 The Angry Medic
    January 8, 2007

    I think the whole thing’s very sad. Especially the part where the sick bastards of commercialism are plugging their wares in the comments. Reminds me of ambulance-chasing lawyers.

    I wish I had a gun.

  6. #6 Jud
    January 8, 2007

    Orac said: “In my posts in the past, I’ve admitted that it was with great trepidation and uncertaint that I had reluctantly concluded that the first court decision (the one that required Abraham to undergo chemotherapy) was probably correct.”

    Tough argument either way, aptly illustrating the old legal maxim that bad cases make bad law. Does a decision not to require chemotherapy uphold the right to be let alone, free from government interference, or is it the Solomonic equivalent of slicing the baby in half, i.e., does it elevate principles at the expense of individual needs? Did the original decision requiring chemotherapy impinge too far on principles of freedom, or was it the product of a judge allowing sufficient flexibility in those principles to do justice in an individual case?

    At least you’ve discussed the issue in a way that’s acknowledged the complexities.

  7. #7 Flex
    January 8, 2007

    One of the complexities has to be the availability of (mis)information about ineffectual treatment options.

    Personally, I stand on the side of adults being allowed to choose the therapies they desire, even if they are ineffectual.

    However, part of the problem with these cases is not that good advice was unavailable, but that poor advice (presented in glowing terms) appeared far superior to the good advice.

    Part of that may be due to the wishful thinking of believers. After all, I can sympathize with someone grasping at the last, untested, chance to eliminate a cancer.

    Part of the reason may be that the practitioners of these types of treatments are believers as well. Sure, there may be a large proportion of scam artists among them, but there are clearly some stong believers.

    So there will be poor advice available, and poor choices will be made by some.

    Could the number of poor choices made be reduced by, in some way, regulating the type of claims made by these practitioners of ineffective therapy? To be sure, we do regulate medical claims in many ways. But is there a need, or reason, to go further? Also, would any organization, whether created by government, industry, or independant groups, be trusted enough to watchdog the claims of ineffective therapies?

    In short, do we as a society have a responsibility to help those people who would choose an ineffective therapy learn the details about the therapy in question, especially the quantity and quality of the evidence of it’s effectiveness?

    Or are we so used to dealing with people who are not going to alter their opinion regardless of how much evidence is presented to them that it’s not worth the time to show them, even politely, why they are mistaken? Caveat emptor.

  8. #8 Justin Moretti
    January 8, 2007

    Or are we so used to dealing with people who are not going to alter their opinion regardless of how much evidence is presented to them that it’s not worth the time to show them, even politely, why they are mistaken?

    Sometimes I just wish that their prostates and Skene’s glands (select as appropriate) would sprout row upon row of razor-sharp teeth and eat them alive. A bizarre image, I know; but one which, for some reason, I cannot get out of my head.

    What’s the alternative? To walk into Katie Wernecke’s hospital room and tell her that her parents are incompetent jerks who are doing their utmost to kill her and have just about succeeded? Or to demonstrate to her just how badly they’ve all been taken for a ride?

    This is not dumb thinking or magical thinking; it is pretty near being a delusional psychosis with elements of paranoia.

  9. #9 Familydoc
    January 9, 2007

    As I have said before – this is child abuse becoming culpable homicide.

  10. #10 Andrew Dodds
    January 9, 2007

    Flex -

    I agree that there should be some sort of legal responsabiliy to anyone selling a treatment for a disease to be able to shoe that it is both safe and effective. Unfortunately, those in first-world countries tend to be extremely vague (At least in writing) about what their snake oil will do. The ones that are not vague tend to be based in countries like Mexico where you can claim any damm thing you like…

    (It’s actually gotten worse here in the UK, since now we have the bizzare concept that homeopathic wooo can be labelled as treating a specific condition. AArrgh..)

    Certainly in these cases, as a condition of refusing state treatment in favour of woo, the patients and parents must sign a statement saying that they understand that they are refusing effective treatment in favour of ineffective treatment that will result in their death. It might at least cause them to question their actions..

  11. #11 Flex
    January 9, 2007

    Justin Moretti wrote, “What’s the alternative?”

    Well, that’s one of the complexities to deal with. It’s not an easy decision to seperate a minor from a parent. Even with the best of intentions. The primary issue may be the health of the minor; yet, side-issues abound. With the increase of fear of government, there appears to be a growing population of people who think any government interferance is wrong. (To be perfectly clear, I don’t have any evidence that the fear of government is increasing. This is just an anecdotal personal observation.)

    But which other social organization should have authority to seperate a minor from a parent? A religious organization? That may appeal to some people, but not only are there non-religious people out there, handing authority of that nature to approved religous organizations may tend to increase their ties to state sponsership.

    A secular medical organization like a hospital may have the knowledge and experiance to determine if a minor is in danger of being harmed by the actions of a parent. But not all minors with medical problems are taken to hospitals. Some parents have been known to rely an non-traditional (and ineffective) medical practices to the detriment of their children.

    My own personal opinion is that the only body which should have the authority to seperate a minor from a parent is the state, and in our state that means the court system. I don’t think the decision should be made lightly, but the purpose of a court is to listen to, and evaluate, the arguments both for and against the proposed seperation and make a judgement. It’s not perfect, human beings being what we are, but this seems like a good place for this decision to rest.

    One of the many problems with this is that in order to get to the courts, someone has to report a problem. The Katie Wernecke case may be in the public eye, but there are likely to be other cases where a parent has, with the best intentions, doomed their children to pain, disfigurement and possible death without ever getting advice from an experianced medical practitioner.

    Yet, even with the problems, I think that the courts are probably the best solution to balance the individual rights of the parents against the rights of the minors (in light of the fact that they are assumed to acquire the same rights as other adults in the future).

    If the state does not have the authority to evaluate each parent and child for proper upbringing (and it shouldn’t because we don’t even know what ‘proper upbringing’ means), then the problem of ensuring that parents are educated enough to avoid harming their children has to be addressed from another angle.

  12. #12 Marcia
    January 9, 2007

    He should have done this
    http://patient.cancerconsultants.com/news.aspx?id=37959
    but, as Flex indicates, was most likely unaware of it. Fear makes people vulnerable and myopic. Information overcomes fear.

    I have known alties (I was one myself) who are ripe for changing and who have changed. Create a little doubt in them, throw a little logic their way, and, in time, they may well awaken.

  13. #13 Flex
    January 9, 2007

    Andrew Dodds wrote, “I agree that there should be some sort of legal responsabiliy to anyone selling a treatment for a disease to be able to shoe that it is both safe and effective. Unfortunately, those in first-world countries tend to be extremely vague (At least in writing) about what their snake oil will do.”

    I disagree with your assessment that the snake-oil salemen are extremely vague in first-world countries. (Or maybe the U.S.A. isn’t first world.) I had an altercation a couple years ago with our HR department which was advertising reflexology. The claims were fairly specific, not just promoting better health in general, but diagnosing specific medical problems. This was in an e-mail distributed to the entire division from HR. I wrote the director of HR and asked if it was appropriate for an automotive supplier’s HR department to be giving medical advice, and the medical claims part of the advertisements stopped. (Although the advertisements continue to this day.)

    This is one example, but there are others. Like the co-worker who started dating a Rikti-healer and asked me some advice about the claims on her web-page. I made it clear to him that I am not qualified to provide medical advice, but I did provide my opinion and point him in the direction of quackwatch and the skeptic’s dictionary for more information about Rikti-healing.

    As far as I can tell, there are laws already on the books which are supposed to prevent people with no medical background from making medical claims. These laws are there to help prevent people who don’t have the time to educate themselves about medical claims avoid ineffective or dubioius medical procedures. They are not there to protect an uneducated sub-class or stupid people. We are all uneducated about some topics and we are all occasionally idiots. The laws are for our own benefit.

    The AMA has established a code of ethics which if a physician violates may result in the removal from the professional organization. (As I understand it, at least.)

    Insurance companies (at one time) would refuse to compensate for medical procedures which have no evidence of benefits.

    Yet, even with the laws, professional codes, and to some degree financial restrictions on ineffective medical practices, they continue. To the extent that to attract customers, insurance companies and a few doctors are advertising and even promoting untested or ineffective treatments. And the laws are not enforced, even if there are complaints.

    Such is the power of belief over evidence.

  14. #14 george hawryluk
    March 15, 2007

    Has anyone read the paper that Dr. Patricia Ward Spain submitted to the Office of Technological Assessment at the request of Congress in late 80´s, in which a brief evaluation of the Hoxsey method is carried out?

    Does anyone even know what the treatment is about?

    Thank you