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The case of chemotherapy refusenik Daniel Hauser

I’ve written before about clinical trials as one place where “the rubber hits the road,” so to speak regarding the interface between science-based medicine and actual medical practice. Another critical place where an equal amount of rubber hits an equal amount of road is how the medical system and the law deal with the medical care of minors. In the vast majority of cases, parents take their children to physicians ostensibly practicing science-based medicine and, more or less, follow their advice. One of the more common areas where there is resistance to science-based medicine is, of course, the issue of vaccination, which I and other bloggers at SBM have written about extensively. Another issue, which has not yet been touched upon on this blog, is what to do about parents who refuse chemotherapy for their children with curable childhood cancers or children who refuse chemotherapy whose parents either agree with them or are unwilling to do the hard work of convincing their children that they must undergo therapy. Most often, the reason cited by such “chemotherapy refuseniks” is either religion or a desire to undergo “alternative” therapy rather than conventional therapy. One such case, a particularly high profile one, has been in the news over the last couple of weeks. In this post, I plan to discuss the case of Daniel Hauser, a 13-year-old boy from Minnesota with Hodgkin’s lymphoma who, after one round of chemotherapy, is currently refusing further therapy. This case ended up in court (as these cases often do) and led to a decision that is likely to satisfy no one (as these cases nearly always do).

Before I discuss Daniel’s case in more depth, however, let me make one thing clear. From my perspective, competent adults have the right to choose whatever treatment they wish–or to refuse treatment altogether–for virtually any condition. The sole exception that I can think of would be the case of a highly contagious infectious disease, where society has a right to prevent epidemics and, if necessary, quarantine someone who refuses treatment and refuses to avoid interaction with others. Note, however, that the right competent adults to choose whatever quackery they desire should in no way be construed to imply that quacks have any sort of “right” to provide them with quack treatments. The reason is that providing such treatments inherently involves making claims for them that are not supportable by science. In essence, selling such treatments involves fraud, even if the practitioner is a true believer and just as deluded about the efficacy of the woo he is selling as the person buying it is. Be that as it may, if a competent adult wants to refuse treatment and understands the consequences, then I will call him a fool if what he has is a potentially very curable disease like Hodgkin’s disease and chooses bogus (word choice intentional) alternative “cures” instead, but it’s his call.

However, from my perspective (and that of the law in most states) the key to such self-determination is that the person must be informed of and understand the consequences of his actions, and there are three components to this understanding. First, of course, is mental competence; i.e., no serious untreated mental illness that impairs a person’s ability to perceive reality can be present. Untreated schizophrenia, for example, can definitely interfere with a person’s ability to evaluate information. The second is the ability to understand the disease and what the consequences of treatment or doing nothing are. That is why adults with mental retardation severe enough to prevent them from understanding are in general not considered competent to make such decisions. Indeed, it is why parents are expected to act on the behalf of their normal children to make such decisions. Finally, there is informed consent. A person refusing treatment must be told the consequences of his refusal and acknowledge them. Whether he believes what he is told is another matter, but it is not up to physicians to force treatment on someone just because that person doesn’t believe what they tell him, as long as the first two conditions are met.

The conflict arises when a parent decides to pursue quackery for a life-threatening but potentially curable illness for a child or a child refuses therapy. It is on such occasions that society as represented by the state has a compelling interest in overriding the parent’s decision and making sure that the child gets the best science-based treatment available. It is also a situation when parental rights, rights of self-determination, and the legitimate interest of society in protecting children can all clash in a most chaotic and nasty manner. That is exactly what is at issue in the case of Daniel Hauser, as described in a news report of the testimony given in his case:

Daniel Hauser has what doctors consider one of the most curable types of cancer, Hodgkin’s lymphoma.

But the 13-year-old from Sleepy Eye, Minn. and his parents don’t want him to have chemotherapy and radiation, the standard treatments. For the past three months, they have ignored the advice of his cancer specialists and turned to natural therapies, such as herbs and vitamins, instead.

Daniel and his parents are justifying this decision using religion:

Daniel, one of eight children, has asserted that treatment would violate his religious beliefs. The teenager filed an affidavit saying that he is a medicine man and church elder in the Nemenhah, an American Indian religious organization that his parents joined 18 years ago (though they don’t claim to be Indians).

“I am opposed to chemotherapy because it is self-destructive and poisonous,” he told the court. “I want to live a virtuous life, in the eyes of my creator, not just a long life.” He also filed a “spiritual path declaration” that said: “I am a medicine man. Some times we teach, and some times we perform. Now, I am doing both. I will lead by example.”

Straight to the grave, I was afraid at the time I first read that report.

As mentioned in the news report, Daniel has Hodgkin’s disease, which is a form of lymphoma. In its early stages, it is highly treatable with chemotherapy and radiation. Whenever I see a case like his, I always try to figure out exactly what stage the child’s cancer is, so that I can get a better estimate of what his true chances of survival with treatment are. I found more information in a more detailed account of the beginning of the court hearing, which included an account of the testimony thus far. Specifically, Daniel has nodular sclerosing Hodgkin’s disease and a mass in the middle of his chest. He was diagnosed earlier this year after he suffered symptoms of fatigue and weight loss, the latter of which is important, because such symptoms are known as “B” symptoms and portend a poorer prognosis. In any case, according to this account, Daniel has stage 2B Hodgkin’s disease (more than one lymph node basin involved but on the same side of the diaphragm, plus B symptoms), which explains why chemotherapy is being recommended. Patients with stage 1 Hodgkin’s disease can be treated effectively with radiation therapy alone, but stages 2 and above generally require the addition of multimodality chemotherapy, usually a regimen abbreviated ABVD, which consists of Adriamycin, Bleomycin, Vincristine, and Dacarbazine. With such a regimen, a boy like Daniel could expect a chance of long term survival of around 85-90%, possibly higher. Without therapy, Hodgkin’s disease is almost always a death sentence.

In testimony, Daniel’s mother reported that this is how they are treating Daniel:

Olson asked how Daniel’s cancer was being treated. Colleen said they are treating it by “starving it, by not feeding it.” She said she found some information on the Internet and started giving Daniel high-PH water, many supplements and an organic diet that includes lots of greens and lightly-sauteed rice.

This brings up two observations. First, there is no doubt that dietary changes and “ionized water” (the latter of which is, by the way, the purest quackery and has no value against cancer whatsoever) will not make Daniel feel as sick as the chemotherapy did. Ditto the “high pH water,” which sounds very similar to Robert O. Young’s pH quackery. Of course, over time the lymphoma will do quite a good job of that until Daniel eventually dies. Chemotherapy is no walk in the park, but it’s nothing compared to death by untreated lymphoma, and at least the chemotherapy can save Daniel’s life. Many times, chemotherapy refuseniks, who feel good for the moment off of chemotherapy, labor under the delusion that, even if they die, at least they won’t be as sick as they would be if they took the chemotherapy. All too often, they learn to their dismay, just how much of a delusion that belief is, and then it’s too late.

One of the issues complicating this case is that it is being framed as a freedom of religion. Usually, such issues do not involve cancer. I’ve discussed such issues here before elsewhere, although rarely for cancer patients. For instance, there was the case of the child who relied on prayer instead of medicine for their daughter’s type I diabetes, leading her to die of untreated ketoacidosis. Christian Scientists believing in prayer over medicine and Jehovah’s Witnesses refusing blood transfusions on the basis of a highly tenuous intepretation of a single passage in Leviticus also come to mind as other examples. In this case, Daniel is claiming to be a medicine man and church elder in a cult of faux Native American wannabes called the Nemenhah, a group led by Philip “Cloudpiler” Landis (who really should be called “Woo-Piler”), a white man who claims to be a naturopath and Native American “healer” peddling “cures” for AIDS and cancer. Cloudpiler has also been involved in another case of a teen (Chad Jessop) who refused effective therapy for melanoma, opting instead for a caustic treatment known as black salve. Indeed, “Chief” Cloudpiler even commented on a blog criticizing the court hearing the case. In general, however, although the First Amendment guarantees freedom of religion, it is not an unlimited freedom, any more than parental rights over their children are unlimited. The state can and should step in to protect a child endangered by very clearly magical thinking. And, make no mistake, this is magical thinking, as this interview with Daniel’s mother shows:

“We believe in traditional methods. To strip that away would be stripping his soul right out of his body,” she said.

When Olson asked more questions, Colleen Hauser said she understands Bostrom’s point of view but does not agree that Daniel’s cancer will metastasize. She said she would give permission for chemotherapy treatments if it were a matter of life and death, but would not agree to routine treatments. She said the survival rate with traditional medicine is “one hundred percent.”

This is magical thinking that will kill Daniel if allowed to stand. Mrs. Hauser seems to think that right now Daniel’s life is not in danger. While it is true that his life is probably not in immediate danger at the moment, it is most definitely in a lot of danger, and the danger grows the longer treatment is delayed. For one thing, the reason that chemotherapy is “routine” right now for Daniel is because he is in a relatively early stage, and the tumor is not causing complications that are immediately life-threatening, such as superior vena cava syndrome or airway obstruction. In other words, chemotherapy is semi-urgent in that it shouldn’t be delayed weeks or months, but doesn’t have to be started tomorrow. There is some time to deliberate and formulate the best science-based treatment. However, waiting too long runs the risk of the tumor’s growing and further spreading. If it does that, then stage 2B Hodgkin’s lymphoma can turn into stage 3 and stage 4 disease, at which point the chances for remission and long term survival go way down. Either way, it is a matter of life and death that Daniel receive treatment expeditiously, especially because the best shot at curing lymphoma is the first shot. Failure to induce a complete remission or a relapse after a remission is a bad prognostic sign, and often a bone marrow transplant is required to salvage such patients.

Moreover, no medicine, not scientific medicine and certainly not “traditional” medicine can guarantee a “100% survival rate.” For any practitioner to make such a claim require lying. Indeed, if there’s any percentage survival rate that “traditional” medicine can guarantee for Hodgkin’s lymphoma, it’s much. much closer to 0% than it is to 100% (spontaneous remissions do rarely occur), while for conventional, science-based medicine the survival rate is much closer to 100% than it is to 0%. Yet, based on religious beliefs and faith in “alternative” and “natural” medicine, Daniel and his mother labor under the delusion that magic water (which, let’s face it, is what they’re offering) along with supplements will cure Daniel. Moreover, they have been given far more deference in court than that delusion warrants because they are based on religion, rather than just a belief in “alternative” cancer cures.

When there is no religious issue involved, cases like Daniel’s are often presented as issues of “health freedom,” parental rights, or the right of a minor to control his or her body. This brings to mind a case from three years ago, a youth by the name of Abraham Cherrix. Abraham was 15 years old when he, with the support of his parents, refused further chemotherapy after one round in favor of rank quackery known as the Hoxsey therapy. The initial decision of the judge in the case was similar to that in the Hauser case: That Abraham had to undergo chemotherapy. However, within a month, an agreement was struck in which Abraham could undergo therapy at a clinic in Mississippi where a radiation oncologist who provides a dubious “immunotherapy” in addition to standard radiation therapy, would treat him. Fortunately for Abraham, although his tumors were fairly advanced at the time, radiation therapy shrank the masses in his neck that might have obstructed his trachea, leading to the need for a tracheostomy, or his esophagus, and he did fairly well, puttering along with radiation therapy being used–Whac-A-Mole or “spot weld” style–to zap new tumors as they pop up. He may well be one of the lucky few for whom radiation therapy alone cures his non-localized Hodgkin’s disease. At least I hope he is, given that his case has stretched out to past his 18th birthday, and he now can legally do whatever he wishes. Cherrix was in an arguably gray area when it comes to having full adult rights with respect to choosing his treatment, and from his perspective he was fortunate enough that his tumor was indolent enough that it waited out the clock until he could do anything he wanted.

Although we can argue about where the line should be drawn as far as children being old enough to have sufficient judgment and understanding to decide matters of life and death for themselves, I would posit that 13 is too young and that Daniel Hauser clearly does not have the capacity to understand the consequences of his decision. Even so, does that mean that it would be right to use force to make him accept life-saving chemotherapy? This is where the particulars get very, very messy indeed:

Furthermore, Colleen Hauser said she won’t comply with a court order requiring chemotherapy, and Daniel is likely to physically resist the treatment.

“He said he would bite the doctor’s arm off,” she said. Daniel is one of eight children who lives on the family’s dairy farm outside Sleepy Eye.

Is there a judge who would order a child physically restrained in order to give him chemotherapy? Besides the horrible images it gives to opponents of science-based medicine who want the right to subject their children to their faith-based quackery without any government interference, there is a huge practical issue. While it may be possible to physically restrain a child like Daniel in order to place permanent intravenous access and then, every so often, to give him chemotherapy, it would be very difficult and traumatic. In addition, it would be potentially dangerous. There would be nothing to stop him from trying to rip the intravenous access out to prevent further doses, potentially hurting himself, unless he were kept under constant surveillance. In other words, Daniel would in essence need to be imprisoned in the hospital for the duration of his therapy.

Then there’s the issue of radiation. Radiation therapy, more than chemotherapy, requires the cooperation of the patient, who must lie still on the table and do so every weekday for 30-40 days, depending on the radiation therapy regimen.(I admit that I am not familiar with the common regimens used for Hodgkin’s disease.) If Daniel won’t cooperate for radiation, he will risk having the radiation beam hit structures that it’s not aimed at; i.e., miss the tumor and hit normal tissue. Yes, he could be sedated for each session, but there’s nothing good about sedating a child five days a week for however many weeks it takes to administer the full course of radiation. It wouldn’t be bad just for Daniel, either. Imagine the hit the morale at the hospital would take, with staff having to view such a spectacle day after day. In addition, you can bet that Colleen Hauser would make sure that the press knew every sordid detail and that the woo-o-sphere would spread it far and wide over the Internet, while even conventional news outlets would be likely to be far more sympathetic to Daniel than to the doctors carrying out the treatment and the judge who ordered it. Such an occurrence would be a disaster for Daniel, a disaster for the physicians and nurses treating him, and a disaster for science-based medicine.

Indeed, it might not even be ethical, and at the very least one of Daniel’s oncologists is very uncomfortable with the idea, as shown in this testimony:

Elbert asked if she would restrain Daniel. She answered that medication can be administered in different ways. She said she does see a need to restrain patients, but has never had to actually do it. She said she wouldn’t do something that would hurt a child.

She said the Mayo Clinic has teams of people who help patients with emotional issues and help children understand their treatments.

Elbert asked if Rodriguez had ever placed a patient under anesthesia and she replied she has never had to do it.

“I don’t know if you can ethically do that,” she said.

Rodriguez said children who are scared to be treated for cancer are common because of the treatment and because of changes in body image. She said it is normal for a 13 year-old to be scared of treatment. She said she has never had to sedate anyone for treatment.

Unfortunately, as he prepared to rule last Friday, the choices before the judge boiled down to:

  1. Try to make Daniel and his family see reason. (Not likely.)
  2. Force Daniel to undergo therapy. (Very ugly and problematic from an ethical standpoint, as I described above.)
  3. Let Daniel die from medical neglect. (Horrible and wasteful.)

Not a very palatable choice. I most definitely did not envy Judge Rodenberg.

There’s still another wrinkle. Following the case over time, I became convinced that religion is probably not the driving force behind Daniel’s reluctance to undergo chemotherapy but rather a convenient excuse for justifying what he wanted to do anyway. What made me think that is the fact that Daniel’s mother allowed him to undergo one round of chemotherapy right after his diagnosis. It was only after Daniel had a rough time with the first round of chemotherapy that suddenly he started refusing to accept any more. Add to that this bit of personal history, and the story becomes more complex, as one of Daniel’s doctors testified:

Joyce said during his testimony that Daniel’s diagnosis was not the same as Daniel’s aunt’s, who died after having chemotherapy.

Apparently this happened when Daniel was only 5. And then there’s the testimony of Shiree Oliver guardian ad litem:

Oliver said she thinks Daniel’s fear is caused by his aunt’s death and said she would recommend he see a counselor.

Oliver said she doesn’t fully understand the Nemenhah’s religious beliefs and doesn’t believe Daniel Hauser fully understands his religious beliefs or has the capacity to make decisions on his medical care by himself.

Again, I would argue that such is true for the vast majority of 13-year-olds.

As I alluded to earlier in this post, one commonality between Abraham Cherrix and Daniel Hauser is that they both agreed to conventional treatment initially and only balked when they experienced how difficult chemotherapy can be. Certainly, I don’t minimize how bad chemotherapy for lymphoma can be. Despite advances over the last 30 years that have produced both treatments that are less toxic and better supportive and anti-emetic therapies, it’s still no walk in the park, and it’s even harder for a child to understand why enduring it is necessary. All the child knows is that he feels lousy, that the drugs are causing it, and that he feels better during the breaks between therapy. The parents, loving their child, see him suffering and complaining about it, but are unable to relieve it. They can only watch, hurting as they see their child hurt.

Is it any wonder that a child would do anything to make the awful feelings stop? Is it any wonder that some parents would latch on to any excuse they can find to make their child feel better while at the same time convincing themselves that they’re still treating the child’s cancer? Is it really that surprising that what some parents latch onto is a delusion, be it “alternative medicine” or religion? Is any more surprising that they would gravitate to a religious set of beliefs that seems to validate their rejection of conventional medicine and at the same time tell them that everything will be OK?

I don’t know about you, but I don’t think it’s surprising at all. Using religion to justify irrational choices to oneself is not limited to just medicine.

There’s also another factor at play here. It’s one that’s always puzzled me. For some reason, chemotherapy holds a particular horror for many people. Many operations are arguably as painful and difficult to recover from as chemotherapy; yet patients rarely refuse surgery for cancer, at least in my experience. Comparatively speaking, they often refuse chemotherapy, again at least in my experience. (Perhaps for a followup post I will have to find out if there are any studies that address these questions.)

Indeed, remember one of my earliest posts for SBM, when I wrote about cancer cure testimonials? I pointed out how, in many cases, the people making these testimonials accepted surgery for their tumors but rejected chemotherapy in favor of their favorite woo. Naturally, thereafter they almost always attribute their survival to the woo instead of the surgery. The reason such “testimonials” are convincing is because, for most solid tumors that haven’t metastasized, surgical extirpation is the primary therapy (exceptions include anal cancer and testicular cancer). For solid tumors successfully resected surgically, chemotherapy is then given in order to decrease the risk of recurrence. What that means is that it’s quite possible to be “cured” by surgery alone, particularly for common tumors like breast or colon cancer. Refusing chemotherapy may make cure less likely, but chemotherapy isn’t absolutely essential to a cure. Surgery is. The same is true of radiation as for chemotherapy. It reduces the risk of a tumor recurring in the location where it had been excised, but rarely is it curative on its own. Most people don’t understand that; so the testimonials for “alternative cancer cures” sound convincing: “I refused chemo and I’m still alive.” Of course, those who are no longer alive don’t give testimonials.

Unfortunately for Daniel, the primary treatment for Hodgkin’s lymphoma is not surgery. Indeed, surgery has a very limited role in Hodgkin’s lymphoma these days, mainly for diagnosis in the form of biopsies. Rather, the primary treatment for Hodgkin’s lymphoma consists of chemotherapy and radiation. Rejecting them is to reject any reasonable chance at cure.

Another aspect of the fear of chemotherapy may well be how much it is associated with death from cancer in people’s minds. As cancer patients get sicker and chemotherapy begins to fail, the cancer starts to take its toll. Dying cancer patients frequently take on the cachectic look of a starving concentration camp survivor as the cancer does its evil work. To the average person, it may well appear more as though it’s the chemotherapy that’s making the patient sicker more than it is the tumor. Then the patient dies, and the linkage between chemotherapy and a horrible, painful death is sealed in the mind of the family. It is an linkage that the “alternative” medicine cancer industry tries very hard to reinforce, as it offers “natural” medicines that supposedly cure cancer with no risk and no suffering. Would it were true! If it were, I would be all for using these “natural” therapies. But, sadly, whenever one looks at such claims more critically, they virtually always turn out to be without foundation or justification in science and clinical trials.

It’s not as if I’m oblivious to the fear of chemotherapy, either. Let’s face it. Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.) Chemotherapy poisons cancer cells, and the reason it can treat cancer is because it poisons the cancer cells more than it poisons normal cells. And radiation therapy does “burn.” It’s just that, the way it’s given, it’s more toxic to cancer cells than it is to the surrounding tissue, and that differential toxicity can be increased by administering it in numerous small fractions over several weeks. Be that as it may, older chemotherapy regimens could be very toxic indeed, and death due to immunosuppression and infection is a possible complication of even some of today’s chemotherapy regimens. What has to be considered is the risk of the chemotherapy versus the risk of death from cancer. In the case of metastatic cancer, the risk-benefit ratio to be considered is the risk of complications from the chemotherapy versus the relief of disabling symptoms due to the cancer and/or the prolongation (but not saving) of life. Either way, it’s a tradeoff, with death looming in the background and some degree of suffering unavoidable. Worse, scientific medicine can’t promise what patients and parents want most: That everything will be OK. All it can give is percentages, which do not satisfy. And we all know that chemotherapy doesn’t always work; patients all too often die of their cancer anyway.

Many, if not most, “alternative” cancer cures doesn’t acknowledge that tradeoff. They promise the cure of deadly diseases with no risks and no suffering. I ask again: Is it any wonder that fearful parents or patients might seek solace in such irrational belief systems that tell them their child will be cured of a fatal disease with no suffering if they follow a “natural” therapy? Remember, Daniel’s mother testified that she believed that the “alternative” therapies Daniel was pursuing will result in a “100%” chance of Daniel’s surviving.

The more I think about this case, the more it seems to me that the specter of Daniel’s aunt is probably driving things and that religion is merely a convenient excuse for a decision that was far more the result of fear of a second round of chemotherapy in the wake of a rough course with the first round. After all, Daniel’s mother agreed to let him undergo chemotherapy at first. What probably happened is that they both freaked out when they saw the complications, echoes of Daniel’s aunt running through their minds, and that this led to their refusal to let Daniel undergo any further chemotherapy. Add to that being a member of a fake religion run by a highly dubious “healer,” and claiming that their religion forbids chemotherapy is a convenient justification to do what they wanted to do anyway regardless of religion. Indeed, apparently one of the lawyers assigned to Daniel says he will no longer acknowledge religion as a justification for Daniel’s decision:

Discussion about that testimony was forbidden by the judge, but an attorney assigned by the court to represent Danny’s best interests emerged from the session with a different perspective.

The lawyer, Thomas Sinas, said he’ll no longer acknowledge “the genuineness of Danny Hauser’s religious beliefs” based on his closed-door testimony. Sinas offered to explain the change, but Judge Rodenberg told him not to.

Perhaps that change explains why Judge Rodenberg ruled the way he did:

MINNEAPOLIS – Daniel Hauser doesn’t think he’s sick, and he thinks chemotherapy will kill him. The 13-year-old with Hodgkin’s lymphoma told a judge he got so ill he couldn’t walk the one time he got the treatment.

“I’d fight it if I had to take it again,” Daniel said, according to a transcript of his court testimony. “I’d punch them and I’d kick them.”

[...]

Rodenberg found Daniel, who likes to do field work on the family farm, play baseball with his siblings and go sledding, has been “medically neglected” by his parents, Colleen and Anthony Hauser.

The judge wrote that Daniel has only a “rudimentary understanding at best of the risks and benefits of chemotherapy. … he does not believe he is ill currently. The fact is that he is very ill currently.”

The judge allowed Daniel to stay with his parents, noting they love him and acted in good faith. But he gave them until Tuesday to get an updated chest X-ray and select an oncologist.

If the tumor has not grown and if Daniel’s prognosis remains optimistic, then chemotherapy and possible radiation appear to be in Daniel’s best interest, Rodenberg wrote. The judge said he would not order chemotherapy if doctors find the cancer is too advanced.

If chemotherapy is ordered and the family refuses, the judge said, Daniel will be placed in temporary custody. It was unclear how the medicine would be administered if the boy fights it.

Calvin Johnson, an attorney for Daniel’s parents, said the family is considering an appeal. For now, he said, Daniel is following the order and will have X-rays Monday.

Judge Rodenberg’s reasoning:

In this case, Rodenberg said, the state’s interest in protecting the child overrides the constitutional right to freedom of religious expression and a parent’s right to direct a child’s upbringing.

Medical neglect, Rodenberg said, clearly took place on April 29, when the Hausers did not follow one doctor’s advice to return to an oncologist, and on May 7, when they disregarded their family doctor’s recommendation to get the tumor X-rayed. Up until then, Rodenberg wrote, the family was seeking second opinions and alternatives.

That is undoubtedly true. The record shows that Daniel’s mother clearly went doctor-shopping, looking for a physician who would recommend something other than chemotherapy. She found none, because there is no other effective therapy for Hodgkin’s disease other than radiation and chemotherapy. Every doctor she saw told her that the child needed chemotherapy to have a good chance of survival, mainly because he does. Refusing the advice of multiple doctors regarding the treatment of a life-threatening disease clearly constitutes medical neglect and child endangerment.

Moreover, to me this appears to be a reasonable ruling that could, if adequately supported, avoid the ethical landmines involved in forcing Daniel to undergo therapy. Rather than taking Daniel from his parents’ custody immediately, Judge Rodenberg has made a strong point of placing the entire onus on Daniel’s parents to live up to their responsibilities as parents and get Daniel the medical care he needs to survive. The judge has even left an “out” if the tumor is too advanced. Although it’s unlikely that Daniel’s mother (or even the judge) realizes it, such a finding is highly unlikely. The reason is that even stage IV Hodgkin’s disease–particularly if it isn’t a relapse after a full course of standard treatment, still has a reasonable shot at being “cured” with standard therapy. Consequently, I have a hard time imagining any pediatric oncologist who would not recommend therapy in such a case. The only situation that I can imagine where an oncologist might recommend no chemotherapy would be if the child was already moribund and at death’s door, which Daniel clearly is not. Finally, the judge points out that Daniel’s testimony reveals that Daniel is severely learning disabled and can’t read. It is clear that he lacks anything close to the ability to give or refuse to give informed consent, the latter of which, as I mentioned above, is a hallmark of deciding whether a patient is competent to make his own medical decisions. Judge Rodenberg even allowed the parents to continue with their woo, as long as Daniel receives conventional chemotherapy:

Minnesota laws require parents to provide children with “medically necessary care,” he wrote. He said the Hausers may continue with their natural remedies, but added that providing “complementary and alternative health care is not sufficient.”

All of this still leaves open the question of what will happen after Daniel gets his next set of staging studies to determine the extent of his disease. Although such studies are clearly necessary before oncologists can decide upon a chemotherapy regimen, the decision still smells a bit of punting, of playing for time, because agreeing to undergo another round of X-rays (probably CT scans of the chest, abdomen, pelvis, and brain) is relatively easy. After all, it’s just a set of diagnostic tests. What happens if Daniel, having undergone the scans, decides that he will still resist any further chemotherapy? If he continues to refuse and–worse–actively resists treatment, medical personnel will be left with the problems I discussed above regarding the practicality and ethics of using force to administer treatment to a 13-year-old boy who is large enough to put up considerable resistance. Seeing this possibility, I think that the judge was wise to place the onus for treatment squarely on the parents’ shoulders and to leave Daniel in their custody. My hope is that, with family counseling and the judge telling the parents to have Daniel undergo therapy, presumably leaving them some choice as to where he will receive chemotherapy and who will administer it, Daniel and his mother will come around.

If there’s one thing I’ve learned, however, from cases like that of Abraham Cherrix is that the judge’s ruling is not likely to be the last word, nor is the story over by any means. There could be an appeal. Other developments could occur. There might be a “compromise” like that of the case of Abraham Cherrix. Whatever happens, I will monitor the story and report updates as events warrant. In the meantime, I hope that eventually Daniel and his parents will see the light and get him the best medical treatment available for his disease.

MORE ON THIS CASE FROM STEVE NOVELLA:

Medical Neglect

Posted in: Cancer, Faith Healing & Spirituality, Medical Ethics, Science and the Media

Leave a Comment (144) ↓

144 thoughts on “The case of chemotherapy refusenik Daniel Hauser

  1. NeoDevin says:

    One idea that might make the situation more manageable if he and his parents continue to refuse treatment:

    Remove him from their custody, they are clearly incapable of providing proper care to a child with his condition. Once he is in foster care of some sort, provide counselling to help him deal with the issues from his aunt’s experience, as well as education about the risks/benefits of the situation. Once away from the influence of his parents, it would likely be easier to convince him to cooperate with the treatments, and then there would be no problems with having to force treatment upon him.

  2. Jules says:

    I was wondering how long it would take for this to show up here.

    I’ve heard that the kid isn’t entirely “all there”, even for a 12-year-old. He apparently has learning disabilities, which probably hinder the explanations further.

    But I’ve got a bad feeling about this one. I predict that eventually the courts will allow the Hausers will let him die a miserable death (but of course you won’t see any of the gory details on the blogosphere), and if that happens then you open up whole realms of possibility for what essentially amounts to child abuse.

    It’s so ironic: America is now more pro-life than ever, and here there are people championing his right to die as he pleases. Although the Supreme Court did rule against it (I think?) so…?

  3. Harriet Hall says:

    To put this into perspective, imagine that he had a compound fracture of the leg or was having a life-threatening anaphylactic reaction. Would anyone argue for his right to refuse treatment in those situations?

  4. isles says:

    Recent reports reveal that the kid can’t even read. Either he is learning-disabled as Jules suggests, or his parents have completely failed in their responsibility to give him access to education. There is no way he understands the consequences of refusing treatment.

    I’m scared for the kids who will no doubt be left in the care of these “parents.”

  5. Scott says:

    The transcript of his testimony (linked in the post) indicates that he is indeed learning-disabled and that this is the cause of his illiteracy. Apparently something to do with something that happened during the pregnancy and/or delivery, though the details are (quite rightly) under seal and not publicly available.

    I find it interesting that he was home-schooled despite that. It’s hard enough for parents who aren’t trained educators to adequately school developmentally normal children. Ensuring that a child with such a disability reaches his full potential definitely seems like a job for professionals. Not terribly relevant to the matter at hand, IMO, but it is interesting.

  6. Karl Withakay says:

    If the parents refuse to comply with the court’s order, you take the child out of their custody- simple, if undesirable.

    The real complication to me is this: If the parents comply in good faith, (or if you take the child into protective custody) and the child still refuses to cooperate, then what do you do?

  7. Karl Withakay says:

    Followup to my last comment:

    If the child refuses to cooperate in protective custody, what’s the net point in taking the child from the parents?

    If the child’s parents act in good faith to get the child to undergo chemo, but the child still refuses, can you take the child into custody on the basis of their ineffectiveness in getting the child to obey them? What would be the point if the child won’t comply anyway?

    Possible scenarios:

    1 Parent convince the child to accept chemo.
    2 Child services takes custody of child and convinces child to accept chemo.
    3 Parents sincerely try, but are unable to convince child to accept chemo.
    4 Child services takes custody of child and are unable to convince child to accept chemo.

    Scenario 1 is strongly preferred over 2, but 3 & 4 are the big problems, even if you think 3 & 4 are the least likely outcomes.

  8. Harriet Hall says:

    If a child still refuses to cooperate, then what do you do?
    What would you do if a child refused to let you treat a life-threatening anaphylactic reaction or a compound fracture? What do you do when your child refuses to wear his seatbelt? What do you do if he tries to run out into traffic?

  9. David Gorski says:

    Harriet, I’m afraid that unfortunately it’s just not as simple as that, especially for a 13-year-old. I wish it were, but there are a number of issues in a prolonged course of therapy like chemotherapy and radiation that make such a case much harder to analogize to that of a broken bone or anaphylactic reaction. Let me reiterate a passage from my post:

    Is there a judge who would order a child physically restrained in order to give him chemotherapy? Besides the horrible images it gives to opponents of science-based medicine who want the right to subject their children to their faith-based quackery without any government interference, there is a huge practical issue. While it may be possible to physically restrain a child like Daniel in order to place permanent intravenous access and then, every so often, to give him chemotherapy, it would be very difficult and traumatic. In addition, it would be potentially dangerous. There would be nothing to stop him from trying to rip the intravenous access out to prevent further doses, potentially hurting himself, unless he were kept under constant surveillance. In other words, Daniel would in essence need to be imprisoned in the hospital for the duration of his therapy.

    Then there’s the issue of radiation. Radiation therapy, more than chemotherapy, requires the cooperation of the patient, who must lie still on the table and do so every weekday for 30-40 days, depending on the radiation therapy regimen.(I admit that I am not familiar with the common regimens used for Hodgkin’s disease.) If Daniel won’t cooperate for radiation, he will risk having the radiation beam hit structures that it’s not aimed at; i.e., miss the tumor and hit normal tissue. Yes, he could be sedated for each session, but there’s nothing good about sedating a child five days a week for however many weeks it takes to administer the full course of radiation. It wouldn’t be bad just for Daniel, either. Imagine the hit the morale at the hospital would take, with staff having to view such a spectacle day after day. In addition, you can bet that Colleen Hauser would make sure that the press knew every sordid detail and that the woo-o-sphere would spread it far and wide over the Internet, while even conventional news outlets would be likely to be far more sympathetic to Daniel than to the doctors carrying out the treatment and the judge who ordered it. Such an occurrence would be a disaster for Daniel, a disaster for the physicians and nurses treating him, and a disaster for science-based medicine.

    Indeed, it might not even be ethical, and at the very least one of Daniel’s oncologists is very uncomfortable with the idea…

    Cancer chemotherapy and radiation therapy are prolonged processes that are very, very hard to do safely without some minimal level of cooperation, and daily sedation is a potentially harmful option. Forcing chemotherapy on Daniel in the face of his actually physically resisting is the second worst option, the first worst option being letting him die from lack of effective treatment.

  10. Karl Withakay says:

    The learning disability is a bit of a curve ball, but I remember being 13, and I’d have to guess that in the end, most children would yield and cooperate with firm but gentle guidance from whoever they are in the custody of.

  11. Scott says:

    “If the child’s parents act in good faith to get the child to undergo chemo, but the child still refuses, can you take the child into custody on the basis of their ineffectiveness in getting the child to obey them? What would be the point if the child won’t comply anyway?”

    Unlikely, I believe. It seems that Daniel is completely guided by his mother in such things, so if she were genuinely on board I doubt he would continue to object.

    Far more likely is that she superficially complies with the court’s directives, but does not encourage Daniel to comply (perhaps even indirectly letting him know that she doesn’t approve of the court’s instructions).

    The end is much the same, but the path to get there is worse because the parents are more able to portray themselves as persecuted. Makes it even harder to justify removing him from their custody, AND less likely he can be convinced to comply even then.

  12. James Fox says:

    Hariett Hall: “… . Would anyone argue for his right to refuse treatment in those situations?”. Hell no.

    There are many other tactics that can be used in a situation like this including placing of the child in foster care and getting him therapy and counseling to help him understand the need for medical care. If the actions of the parents is maltreatment that could result in the death of the child then removing the child from the source of the maltreatment while he is undergoing that treatment is likely the most logical step. Courts make decisions all the time that include the physical restraint and medical treatment of mentally ill and incompetent children and adults. These situations hardly ever reach the front page of the news paper because we all accept these needed actions or live lives ignorant of the many people who are not, for what ever reason, able to make safe and appropriate decisions for them selves.

    And I could frankly care less what bother and distress the treating of a non compliant patient could put hospital staff through. Also Daniel’s oncologist should do some research or gain experience in treating non compliant geriatric, cognitively delayed, and mental health patients.

  13. David Gorski says:

    And I could frankly care less what bother and distress the treating of a non compliant patient could put hospital staff through. Also Daniel’s oncologist should do some research or gain experience in treating non compliant geriatric, cognitively delayed, and mental health patients.

    It’s way more than just “bother and distress” to the staff. It’s actively dangerous to Daniel if he actually does resist as he says he will. Moreover, courts don’t make rulings “all the time” involving forced chemotherapy and radiation therapy over the course of several months. If they did, it’s unlikely that the few such cases like these over the last four years (Daniel Hauser, Abraham Cherrix, and Katie Wernecke come to mind–Google the latter two with the word “lymphoma”) would be as newsworthy or receive as much coverage. Cancer chemotherapy and radiation therapy are a quantitatively, if not qualitatively, different beast than the vast majority of medical treatments applied to children because they involve frequent, repeated doses that make the child sick. Radiation therapy involves daily treatments stretched out over several weeks.

    And oncologists do treat cognitively delayed and mental health patients all the time. Few of them resist as much as Daniel threatens to do. In fact, it says something that Daniel’s oncologist said that he’s never had to sedate a child in order to get them to cooperate with chemotherapy.

    I agree that the best outcome would be to convince the parents through counseling to cooperate in getting Daniel treated or, failing that, to get Daniel away from them and convince him to cooperate through counseling and cajoling. That being said, though, I find the attitude of some of the “just force him” contingent that I’ve encountered since I’ve started to follow this case to be at times disturbingly cavalier and to betray a lack of understanding of exactly what “just forcing” Daniel would be likely to entail, and that doesn’t even count the ethical issues involved.

    There are very good reasons why the oncologist who testified was very, very uncomfortable with the thought of forcing Daniel to undergo chemotherapy. Even if it does end up being necessary Daniel to undergo treatment, this is something that should never be done lightly and only as an absolute last resort.

  14. James Fox says:

    I fully agreed that force is certainly a last resort. However force either by sedation or other reasonable means may be what is necessary. The treatment issue with mental health patients, especially paranoid individuals, is that the court will order the patient to take their prescribed medication, which can be given by force, so that they are adequately medicated to receive the necessary medical treatment. Are disorganized and combative Alzheimer’s patients or profoundly delayed and non communicative children and adults treated for cancer which requires chemo and beam radiation? It would be hard to imagine that this is a terribly rare occurrence. Then again these patients may typically present at a latter stage given their inability to reliably report symptoms before they become obvious to care givers.

  15. DarwynJackson says:

    If (when) Daniel dies, will the parents be charged with manslaughter?

  16. SD says:

    Govorit’ Cde. Gorski:

    “Note, however, that the right competent adults to choose whatever quackery they desire should in no way be construed to imply that quacks have any sort of “right” to provide them with quack treatments.”

    Mmm. That’s actually rather slippery of you, Cde. Gorski.

    No, no such “right” to provide treatment exists, any more than you have a “right” to be a mechanic or a doctor. But you *do* have the right to *offer* such treatments; whether or not anybody takes you up on your offer is orthogonal to this point.

    “The reason is that providing such treatments inherently involves making claims for them that are not supportable by science.”

    No, it does not, insofar as that matters; a claim which is untestable by science is also untestable in court. (Ex: Can you prove that “subluxations” *don’t* exist, or that God *isn’t* the source of the remission?)

    I assure you, Cde., that you do *not* want to live in the world you claim to dream of so fondly.

    “In essence, selling such treatments involves fraud, even if the practitioner is a true believer and just as deluded about the efficacy of the woo he is selling as the person buying it is.”

    Fraud requires intent, Cde. Gorski, same as all other crimes. I imagine that you must know better than that by now, and so I suppose that you’re trying the old “repeat-the-lie-often-enough-and-it-becomes-true” trick. Best of luck with that, Cde. >;->

    “mens rea”
    -SD

  17. weing says:

    I don’t understand legal. Can you say that in English?

  18. Chris says:

    What is this SD character and what exactly is he/she saying?

  19. David Gorski says:

    Don’t worry too much about it. It’s just SD doing his usual pseudo-libertarian schtick and trying to get a rise out of me, as he is wont to do. Quite frankly, SD’s become too tiresome and predictable for me to bother with much any more, except when I’m in a particularly perverse mood (although I will admit that his whole “Comrade Gorski” schtick causes me to chuckle at times at the sheer childishness of it all). Sadly, these days, pec provides me with more intellectual stimulation in a debate than SD.

  20. SD says:

    Chris:

    “What is this SD character and what exactly is he/she saying?”

    What, English isn’t good enough for you?

    A finding of fraud requires a finding of intent to defraud, something of which Cde. Gorskij is well-aware. CAM is not, in se, fraudulent. It *becomes* fraudulent when it is advertised using statements that are demonstrably false (“Cures cancer!”); the trick is that, by any reasonable blanket standard, *SBM treatments are fraudulent in the same way*. (“Cures cancer!” People snuff it all the time using “Sure-bet” medical cures that for some reason “wow, just, uh, didn’t really work out for them, that’ll be $50,000 please”; do they have a case for being defrauded? Is an MD who proposes a long-shot treatment to a sick patient – a treatment from which he profits handsomely, generally speaking – a fraudster?) The best you can say about an SBM treatment: “Treatment T may work to treat problem P, and has an observed success rate to date of X%.” Curiously, this is also the only thing you can say about a CAM treatment too, with the X% for CAM typically being much smaller than for SBM.

    Comrade Gorski uses a specious claim to advance his argument, namely that because CAM claims are not supportable by science, they constitute fraud in se. This is an attempt to gloss over and muddle a lot of very important points, among them that science is not the definitive test against which fraud is measured, and that science and law (for very good reasons) do not have much to do with one another. The “scientific” management of human affairs is an enterprise fraught with failure and enormous human cost. Ask the Cambodians.

    Moral gedankenexperiment: Suppose that I decide to sell laetrile as a cancer treatment, with the caveat that “No studies done to date have shown that laetrile is effective for treating any disease, including cancer; laetrile is a toxic substance, and may be harmful; all reports to date of the success of laetrile in treating disease are anecdotal, and when analyzed, cannot be demonstrably linked to the use of laetrile.” I think that covers most of the problems with laetrile. Let us say that I am convinced that laetrile can work in some cases, but do not make any pretense of knowing which cases those are. Patient P, after carefully reading the above disclaimer, and after being patiently counseled by myself, a pharmacist, and an SBM practitioner, elects to purchase this treatment anyway.

    Question: Have I defrauded Patient P? If we strip qualifications from the above scenario – say that the SBM practitioner is cut out of the loop – at what stage does this become a fraudulent transaction? At what point is Patient P presumed to be possessed of sufficient knowledge for future consequences to be considered covered under the principle of “Caveat Emptor”?

    Cde. Gorski does not like to answer these questions, and elects to blow them off, because he is aware of the self-contradictory traps he is guaranteed to fall into if he attempts to do so. (Cde. Gorski is clever that way.) That’s okay, he’s lots of fun anyway, and always good for a laugh.

    “who are you going to believe, me or your own lying eyes?”
    -SD

  21. SD says:

    Govorit’ Cde. Gorski:

    “Don’t worry too much about it. It’s just SD doing his usual pseudo-libertarian schtick and trying to get a rise out of me, as he is wont to do.”

    ‘Pseudo’? Perhaps you can describe the portion of my analysis and commentary that is *not* libertarian, as you here imply.

    Also, don’t flatter yourself: you’re not the target, you’re the foil.

    “Quite frankly, SD’s become too tiresome and predictable for me to bother with much any more, except when I’m in a particularly perverse mood (although I will admit that his whole “Comrade Gorski” schtick causes me to chuckle at times at the sheer childishness of it all).”

    Tiresome? Predictable? Aw, Cde. Gorski. Since when has vigor and coherence in propounding one’s position and in pointing out folly been a vice?

    I should hope that I am tiresome, as I see no reason to deviate from a correct position. (All it takes to change *my* mind is a convincing argument that I’m wrong, Cde. Gorski.) And I hope that I am predictable, because in order to predict my next argument the thought-processes involved must therefore be embedded in *your* head too, which means that they stand some chance of someday taking root.

    “Sadly, these days, pec provides me with more intellectual stimulation in a debate than SD.”

    Naw, what pec provides you is an easier target. And, as we all know, the heady heights of intellectual virtue that you represent demand that one direct one’s attention to the *easy* questions, in the hopes that the hard ones will just go away. Remember, ladies’n'gents: in the comradely pursuit of science, intellectual sloppiness, laziness, and dogmatism are *virtues*. >;->

    “oh no he DIDN’T *snap*”
    -SD

  22. Eric Jackson says:

    SD’s post is more or less inflammatory trolling and without merit, and primarily seems to be based on a mixture of personal insults and attempting to change the definitions of terms used to a different context. In a legal setting, the crime of fraud requires intent to deceive. In a scientific context, fraud can be both intentional, and by negligence or ignorance. Likewise, the legal right to offer a quack treatment may exist, or be on unenforced and debatable legal grounds, but is unacceptable within medical ethics.

    On the subject of nonconsensual treatment – well that’s a whole mess. I won’t testify to the requirements of radiation, as I know damned little about it, but ABVD is not, as I recall absolutely dependent on being administered through a permanently fixed venous catheter – and it only needs to be administered twice per month. Neither is it a particularly nasty chemotherapy, no platinum agents in there. Twice monthly sedation with an agent like midazolam doesn’t strike me as a particularly risky path, given that benzodiazepine sedation in chemotherapy is fairly common. The above posters indicate that the radiation is more of the issue, and that it needs to be administered almost daily – which is going to make any strong sedative problematic, and at least for the benzodiazepines and barbiturates, prone to tolerance.

    To the doctors here, does ABVD require, absolutely, a fixed venous catheter?

    The comparison to other areas with noncompliant patients isn’t without merit, notably the elderly and patients with mental illness, particularly psychotic disorders. I would think, though I have no evidence to support this, that most schizophrenics where chemo was being considered would be otherwise medicated. There are probably sources in this area, though this does not seem to be an area of medicine or ethics that most of the community on this site has experience with.

    The implication that this child is developmentally abnormal is somewhat troubling. Personally, I couldn’t have made a good decision on what kind of socks to buy at age 13, though at that age I would have held a much different opinion. More importantly, that his mother is more or less vicarious acting out her ignorance and religion is incredibly disturbing – but it also transforms the issue from a child resisting and the parents being unable to manage, to simply atrocious parenting.

  23. SD says:

    Govorit’ Cde. Gorski:

    “And oncologists do treat cognitively delayed and mental health patients all the time. Few of them resist as much as Daniel threatens to do. In fact, it says something that Daniel’s oncologist said that he’s never had to sedate a child in order to get them to cooperate with chemotherapy.”

    This “says” *nothing* about the oncologist. (Does it “say something” about a child molester that he never had to get a victim drunk?) It says something about Daniel, though – it says that he really, really, for whatever reason, does not like the idea of this treatment. The kid is thirteen, and in most cultures (including our own) can be reasonably presumed capable of knowing most of the consequences of his actions. In some states, he could be tried as an adult, and even sentenced to death. (I am not implying any value judgment about this practice, merely noting its existence.) Why are his wishes being disregarded? Why is it “okay” to disregard these wishes if they appear to originate from “wrong” beliefs?

    “I agree that the best outcome would be to convince the parents through counseling to cooperate in getting Daniel treated or, failing that, to get Daniel away from them and convince him to cooperate through counseling and cajoling.”

    Hm. So, in short, you propose removing a kid (presumed, in this instance, to be incompetent to make value judgments) from his parents, and then making a concerted effort to brainwash him until he cooperates? *That’s* a moral victory, Cde. Gorski. I stand in awe of your ethical rectitude.

    “That being said, though, I find the attitude of some of the “just force him” contingent that I’ve encountered since I’ve started to follow this case to be at times disturbingly cavalier and to betray a lack of understanding of exactly what “just forcing” Daniel would be likely to entail, and that doesn’t even count the ethical issues involved.”

    What ethical issues? Doctor’s right, isn’t he? Doctor knows what he’s doing, doesn’t he? Kid can’t make any of his own decisions, can he? Kid’s not competent, right? Parents aren’t competent, right? Doctor’s operating in the best interests of the child, isn’t he? Parents’ rights end whenever they deviate from Accepted Best Practice, right?

    Might as well get the kid used to the idea that he doesn’t own his own body, and that his control over it can be overridden on a whim. I might suggest assigning him an officer of the court to Taser him if he becomes non-compliant during chemo treatments or lips off to the doctor; that’ll show him who’s *really* boss.

    Here’s a thorny ethical question for you: Since the parents are effectively being forced to subscribe to this treatment by order of the court, are they morally obligated to pay for it?

    “There are very good reasons why the oncologist who testified was very, very uncomfortable with the thought of forcing Daniel to undergo chemotherapy. Even if it does end up being necessary Daniel to undergo treatment, this is something that should never be done lightly and only as an absolute last resort.”

    Again: Why? Can the kid author a living will or a DNR? Then why is this an issue? Sedation and Tasering will get that treatment accomplished, which is clearly, according to your ethical compass, the “Greatest Good” in this situation. So what, precisely, is wrong with coercion in this instance? Can you describe what’s wrong with it in closed form?

    Here’s another thorny ethical question for you: If the kid complies with all the treatments and still dies, what should happen to the judges and medical practitioners involved? Should they suffer any sanction at all?

    “primum, non nocere”
    -SD

  24. SD says:

    Eric Jackson:

    “SD’s post is more or less inflammatory trolling and without merit,”

    Thank you. Your openness to opposition is a credit to science.

    “and primarily seems to be based on a mixture of personal insults and attempting to change the definitions of terms used to a different context.”

    ‘A different context’? What are you smoking? The judge ordered the treatment. The context *is* legal, not scientific. The point is not the relative efficacy of chemo for Hodgkins’ lymphoma, it is whether or not the parents’ or kid’s wishes may be disregarded at will when they differ from the decision rendered by an oncologist. It is, in short, a question of *who gets to make this choice*. Every answer to this question has consequences. Some of the consequences of the answers “Why, the State does, of course” or “The doctor, surely” – variants of both of which have been advanced here – are very unpleasant indeed.

    “In a legal setting, the crime of fraud requires intent to deceive. In a scientific context, fraud can be both intentional, and by negligence or ignorance.”

    Uh, this is not even coherent. Fraud *in any context* requires intent. Negligence or ignorance does not mean that you defrauded people, it means that you screwed up.

    Unless you’re reclassifying most of the history of science as “fraudulent”? Because there’s a whole long list of bad conclusions that were nevertheless advanced in good faith, and even used for many years before they were supplanted with something better.

    “Likewise, the legal right to offer a quack treatment may exist, or be on unenforced and debatable legal grounds, but is unacceptable within medical ethics.”

    Fine. I applaud your medical ethics. The problem is that your medical ethics are all tangled up in my law, something which I do not appreciate, for multiple reasons, chief of which is that such tangling is a *bad idea*.

    “On the subject of nonconsensual treatment – well that’s a whole mess. I won’t testify to the requirements of radiation, as I know damned little about it, but ABVD is not, as I recall absolutely dependent on being administered through a permanently fixed venous catheter – and it only needs to be administered twice per month. Neither is it a particularly nasty chemotherapy, no platinum agents in there.”

    http://en.wikipedia.org/wiki/ABVD

    ABVD == Adriamycin, Bleomycin, Vinblastine, Dacarbazine. These are not pleasant chemicals (particularly the alkylating agent). Platinum salts are not the only nasty chemo agents out there. Nitrogen mustard is not fun stuff.

    I’d almost rather have the radiation, assuming that it was from a linac or gamma-knife. At least that’s targetable, as opposed to the “Get rid of the Viet Cong by napalming EVERYTHING” theory of antineoplastic chemical warfare.

    “Twice monthly sedation with an agent like midazolam doesn’t strike me as a particularly risky path, given that benzodiazepine sedation in chemotherapy is fairly common. The above posters indicate that the radiation is more of the issue, and that it needs to be administered almost daily – which is going to make any strong sedative problematic, and at least for the benzodiazepines and barbiturates, prone to tolerance.”

    Well, that’s good. Because, as we all know, the important part of this situation is the question of whether knocking the kid out is gonna be “risky”.

    Hell, Tasering the kid is perfectly safe, if there’s a defibrillator nearby to shock him if he goes into cardiac arrest. (All together now: “There is no scientific evidence that Tasers are dangerous!”) It’s probably even safer than drugging him – as there is nearly no risk of developing dependency – and I guarantee that after about the second Tasering he’ll be as docile as a little learning-disabled lamb, since pain and humiliation are the great teachers to all men who are not comatose. Why not do that instead? It’s for his own good – right?

    “The comparison to other areas with noncompliant patients isn’t without merit, notably the elderly and patients with mental illness, particularly psychotic disorders. I would think, though I have no evidence to support this, that most schizophrenics where chemo was being considered would be otherwise medicated. There are probably sources in this area, though this does not seem to be an area of medicine or ethics that most of the community on this site has experience with.

    The implication that this child is developmentally abnormal is somewhat troubling. Personally, I couldn’t have made a good decision on what kind of socks to buy at age 13, though at that age I would have held a much different opinion. More importantly, that his mother is more or less vicarious acting out her ignorance and religion is incredibly disturbing – but it also transforms the issue from a child resisting and the parents being unable to manage, to simply atrocious parenting.”

    You know, it’s particularly interesting to see how situations like this are described here. The noble/selfless/dedicated/humble oncologist, who wanted to treat the poor/imbecile/misled/retarded kid, and who was stymied by the evil/paranoid/religious/intolerant/idiot/uninformed/bigoted/redneck/fool parents, went to the judge, who rendered a good/sound/fair/just ruling that the kid could be dragged bodily to the hospital and pumped full of a treatment nobody involved appears to be interested in. His refusal must be the result of developmental retardation (presumably brought about by homeschooling), as opposed to simply not wanting to be someone’s biology experiment, or having some belief or knowledge that this treatment will not work out as well for him as another.

    I note the disturbing similarity between this line of reasoning and the argument for “political” psychiatric treatment in the USSR: if you do not agree with certain facts which are obviously correct and universally agreed-upon, then you must be mentally ill, and therefore need treatment and strong direction. The idea that someone might have a right to be crazy or stupid so long as they’re not hurting anybody else is, of course, complete anathema.

    Here’s a moral absolute for you: if you have to screw a pistol into someone’s ear to treat them, then you’re doing something wrong.

    “and how are you today, number six?”
    -SD

  25. addiejd says:

    @ Darwyn Jackson:

    The real question is: If Daniel gets removed from his parents’ custody and still refuses treatment, and dies while in the custody of the state, how much money will his parents win in the wrongful death lawsuit that they file?

  26. pmoran says:

    SD, all I see is persons distressed that this child is at risk of having to endure a cruel and almost certainly fatal illness. Treatment can be admittedly unpleasant for the months that it lasts, but it can offer him the prospect of something approaching cure.

    Are some going too far in the legal solutions they countenance? Yes, probably, but we doctors are supposed to try to sustain life at nearly all costs. “Win some, lose some” does not come easy, especially when a child is involved.

  27. SD says:

    pmoran:

    “SD, all I see is persons distressed that this child is at risk of having to endure a cruel and almost certainly fatal illness. Treatment can be admittedly unpleasant for the months that it lasts, but it can offer him the prospect of something approaching cure.

    Are some going too far in the legal solutions they countenance? Yes, probably, but we doctors are supposed to try to sustain life at nearly all costs. “Win some, lose some” does not come easy, especially when a child is involved.”

    I kind of don’t buy this argument. If y’all are concerned about children dying untimely, then I’d expect you to be filling in malaria swamps in Gambia and handing out AIDS meds. Hell, I’d expect you to be cooking food and handing out vitamin pills, since malnutrition kills more children worldwide than all the “refuseniks” in history put together.

    No, the ruckus over this has nothing to do with the fact that a child is involved, although that’s a convenient and effective rhetorical flourish. (Cue histrionic-theatric voice: “Won’t! Somebody! Think! … OF THE CHILDREN?!?!?!”) The issue here is that it provides a nice case with which the evil ignorant CAM adherents, along with people who do not believe in limitless state power, can be vilified easily by proxy. That I think this kid is probably getting a raw deal from his parents, and that they’re all idiots, does not mean that I appreciate the ability of a random oncologist to dictate that the kid *will* undergo whatever treatment strikes his fancy, and for that fancy to be validated by a judge. Overturning the principle that the parents are the ultimate decision-makers for a child’s welfare, with all the responsibilities and rights that entails, is not something done lightly. You don’t get to have it both ways; they’re not the ultimate decision-makers if they’re only permitted to make the “right” decision. I encourage you to visualize the malevolently-bubbling sulfur pools and radioactive wasteland lurking behind the idea of ensuring that only “right” decisions are made. I encourage you to think of the fact this evening, as you kiss your children lying in their beds (should you be so blessed), that someone, somewhere, may decide that you are *not correct* in your approach to childbearing or your beliefs – *for any reason whatsoever* – and may object to that approach or those beliefs, and may, using such cases as this as iron-clad precedent establishing an “overriding State interest” in doing so, overrule your decision and do things *their* way instead, to which decision you will have absolutely no recourse *at all*. Here’s a mental movie to illustrate my point: Walter Freeman, reknowned neurologist, convincing a judge that your son’s behavioral problems are best cured with a spot of simple, safe surgery, which evidence shows leads to a remission of symptoms in essentially all cases and for which a pioneer of the field in fact won a Nobel Prize, all this over and above your objections that you don’t want your son’s brain carved up like a Christmas turkey.

    In other words, it’s a lot easier to cluck and tut when it’s not your kid they want to pin down and “treat”.

    Ruthless-bastard observation: a family that doesn’t believe in lifesaving measures of reasonable efficacy is probably one that needs to be culled anyway. There are no “do-overs” with deadly illnesses, nor any prize for second place.

    “motes and logs”
    -SD

  28. Luna-the-cat says:

    Eric Jackson:

    The boy involved is learning disabled, apparently because of being oxygen-deprived during birth (note, also, that the mother gave birth at home using a midwife, and there were complications). The court testimony regarding his exact mental status was sealed, so I don’t know any more detail than that, but he can’t read and his mother does ALL the speaking for him — and part of the ruling by the judge is that it became evident that the boy has no real understanding either of his condition, the preferred medical treatment, or the fake “religion” that his mother is using as an excuse.

    I think Orac @ Respectful Insolance has the right take on it: the mother is afraid of the effects of chemo, doesn’t like seeing her kid suffer from it, and used the “religion” as an excuse to pull her kid out of treatment.

    Of course, the fact that the kid has a 90-95% chance of survival WITH the treatment and about 0% without, no matter what nonsense the CAM advocates spout, legally means that what she is doing is negligence and child endangerment anyway. A child’s right to survive a treatable illness trumps the parent’s right of “ownership” any day, unless you take the view that children are not human, not citizens, and can be regarded purely as their parents’ property. The fact that the kid in question is actually incapable of informed consent on his own complicates this on one level and simplifies it on the other — it means his own wishes count for less, and ensures that someone MUST make some decisions for him — but on another level, it means that the judge certainly has a remit to protect his life in the face of the fact that the kid doesn’t understand what it is he was assenting to or refusing, nor does the boy actually understand that he *can* die.

    For all SD’s hot air and anti-state paranoia and CAM idiocy, the idea that the state has no right to protect a child’s life against poor parental decision making would immediately imply that the state had no right to step in to protect kids from being beaten to death as part of “discipline”, starved to death through neglect or any of the other strange justifications people can find (like the couple recently who starved their 2-year-old to death because he wouldn’t say “amen” with meals), or otherwise abused; most sane people, on the other hand, recognise that kids are human beings with certain basic rights, like survival, but without any power whatsoever to protect themselves or their own interests — and so external guardians of their interests, in a pragmatic sense, -need- to exist when the ones who should be acting in their interests, don’t.

    This particular instance is tragic because it is clear from court testimony and family background that the mother actually does love her son, but the fact remains that she didn’t just endanger his life, she put him in a position where he would pretty much certainly would have died. The judge actually took a “softly, softly” approach in a way by leaving the child with her and still under her control, merely mandating that the medical treatment which is proven effective be resumed.

  29. David Gorski says:

    SD’s post is more or less inflammatory trolling and without merit, and primarily seems to be based on a mixture of personal insults and attempting to change the definitions of terms used to a different context.

    Indeed. That is his MO. SD is a troll, as you can see from his reaction to my dismissal of him as someone worth taking seriously (a torrent of his usual nonsense plus insults) shows. Wise commenters try to avoid feeding trolls, which is why, unless he actually says something that doesn’t consist of his usual Ayn Randian B.S., this will probably be my last word for now.

    As for SD’s claim that ABVD is so mild, SD should read the court transcripts. Daniel got quite ill during his first course. Of course, we don’t know for sure if ABVD was the regimen chosen (there are others), but he clearly did not do well, from a side effects standpoint, his first go-around. SD is obviously also quite ignorant of how chemotherapy is usually administered to children. While it may be possible to give it without a port, in a child with cancer who is going to undergo prolonged therapy, a port is almost always used because it’s about about more than the chemotherapy. There are numerous blood draws, other medications, and often blood products that need to be given–and it’s all done through the port.

  30. SD says:

    Govorit’ Cde. Gorski:

    “It’s not as if I’m oblivious to the fear of chemotherapy, either. Let’s face it. Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.) Chemotherapy poisons cancer cells, and the reason it can treat cancer is because it poisons the cancer cells more than it poisons normal cells. And radiation therapy does “burn.” It’s just that, the way it’s given, it’s more toxic to cancer cells than it is to the surrounding tissue, and that differential toxicity can be increased by administering it in numerous small fractions over several weeks. Be that as it may, older chemotherapy regimens could be very toxic indeed, and death due to immunosuppression and infection is a possible complication of even some of today’s chemotherapy regimens.”

    I did, however, want to comment on this bit here.

    No, chemotherapy does not “poison cancer cells more than it poisons normal cells”. It poisons them the same amount. That poisoning seems to have a greater *effect* on cancer cells, because cancer cells divide more quickly than normal cells do, and the cell-killing effects of multiple DNA intercalations or alkylations kick in that much sooner. These effects do not preferentially target cancer cells; that’s why new technologies (liposome balls full of chemotherapy agents with targeted antibodies attached) are so eagerly sought after. We’re still burning down the forest to wipe out the Viet Cong.

    I can understand why people don’t like chemotherapy. After fifty years, surgeons have all kinds of whizbang toys and procedures that can pull a watermelon-sized tumor out of a hole the size of a pencil eraser, or damn-near as. After fifty years, radiation oncologists can contour-map a tumor using the latest imaging technology and nuke it with fifty pencil-sized beams of radiation that converge so nicely that a whole Hiroshima’s worth of nuclear death is delivered inside the tumor boundary, and barely more than a year’s exposure to cosmic rays is delivered to the rest of the tissue in the beam path. But after fifty years, chemotherapy patients are still attached to IV bags full of odd-colored fluids that still make them feel (and look) like they spent the afternoon at Chernobyl. There’s still a substantial risk of infertility, as well as cancers secondary to the treatment (screwing with DNA has a price).

    I’m surprised that there have been as few advances as there have, actually. I mean, yes, there are somewhat better agents available, and some new ones that work a bit better than the older ones do, but it’s still basically “take the patient, fill ‘er up, and hope that the tumor dies first”. It isn’t like there’s been a much better choice, of course – the human body is the epitome of a hostile working environment for pharmaceutical chemists – but I’d think there could be *some* way to make chemo a little less “global”. (Sometimes it has to be, of course – advanced metastases are impractical to target singly.)

    I’m actually interested in seeing what some of the photochemotherapy stuff does when it hits clinical trials; the possibility of using less dangerous radiation (e.g. X-rays) to selectively trigger the activation of a chemotherapeutic agent seems to me to be nearly the best of all possible worlds, if it can actually be made to work.

    “these are the days of miracle and wonder”
    -SD

  31. SD says:

    Govorit’ Cde. Gorski:

    “As for SD’s claim that ABVD is so mild, SD should read the court transcripts. Daniel got quite ill during his first course. Of course, we don’t know for sure if ABVD was the regimen chosen (there are others), but he clearly did not do well, from a side effects standpoint, his first go-around. SD is obviously also quite ignorant of how chemotherapy is usually administered to children. While it may be possible to give it without a port, in a child with cancer who is going to undergo prolonged therapy, a port is almost always used because it’s about about more than the chemotherapy. There are numerous blood draws, other medications, and often blood products that need to be given–and it’s all done through the port.”

    Um, Comrade, I do hate to interrupt your Two Minutes’ Hate…

    … but that was Eric Jackson who made that comment, not me. See here:

    http://www.sciencebasedmedicine.org/?p=496#comment-19486

    I didn’t comment much on ABVD, except to note that dacarbazine (an alkylator, related to nitrogen mustard) is not pleasant stuff, and that I personally would probably rather have the radiation instead, since at least that can be targeted. I also said nothing about ports, since I know little about chemotherapy delivery methods other than that extravasation is a REAL nasty side effect of some of them (daunorubicin? I forget) and that substantial care needs to be taken to prevent it.

    I apologize for speaking out of turn. If it is Current Truth that I said these things, regardless of that pesky ‘documentary evidence’ and other patent falsehoods sowed by the slavish tongue-bathing running-dog flunkies of CAM invading and sabotaging this garden of pure ideology, then I of course submit to the People’s Will, as interpreted by the infallible Comrade Gorski. Please file the actual commentary in the Memory Hole. I will now denounce myself and report to the Gorski Labor-Rehabilitation Center with my shovel.

    (Prediction: Cde. Gorski’s “last word” will, mirabile dictu, include a failure to acknowledge this error of attribution. One wonders if his science is plagued by the same, ahem, ‘oversight’.)

    “there is no truth but the current truth”
    -SD

  32. David Gorski says:

    No, chemotherapy does not “poison cancer cells more than it poisons normal cells”. It poisons them the same amount. That poisoning seems to have a greater *effect* on cancer cells, because cancer cells divide more quickly than normal cells do, and the cell-killing effects of multiple DNA intercalations or alkylations kick in that much sooner.

    Nothing more than your usual playing with semantics. If the same dose of a drug is more toxic to cancer cells than it is to regular cells, then the end result is that it does poison them more.

    As for the error in attribution, mea culpa (in fact, acknowledging the error in attribution is the only reason I am bothering to respond to you in this instance). It’s what I get for trying to whip off a quick response early in the AM.

    None of this means, however, that you shouldn’t still report to the Labor-Rehabilitation Center. The black helicopters are on their way to take you there. I’ve ordered them myself. No doubt you’ll whip off two or three more of your prolonged bouts of verbal diarrhea to stink up the joint before they arrive. You’re just that predictable.

    One other note–to Eric: Sorry I was harsh, but mistakenly thinking that the remark came from the troll SD colored my language. Again, mea culpa.

  33. SD says:

    “For all SD’s hot air and anti-state paranoia and CAM idiocy,”

    When have I ever promoted CAM? Find one time. Go ahead, I’ll wait.

    “the idea that the state has no right to protect a child’s life against poor parental decision making would immediately imply that the state had no right to step in to protect kids from being beaten to death as part of “discipline”, starved to death through neglect or any of the other strange justifications people can find (like the couple recently who starved their 2-year-old to death because he wouldn’t say “amen” with meals), or otherwise abused; most sane people, on the other hand, recognise that kids are human beings with certain basic rights, like survival, but without any power whatsoever to protect themselves or their own interests — and so external guardians of their interests, in a pragmatic sense, -need- to exist when the ones who should be acting in their interests, don’t.”

    Sure, okay. Do you see any moral difference between forcing a kid to have treatment that his parents object to and which is in any event not guaranteed to work, and preventing his parents from beating him to death?

    Never mind, I already know the answer to that question. That Kool-Aid must be tasty.

    Here’s an ugly question for you: This is one of eight children. Suppose that the parents made the decision to not treat this kid because it would be too expensive to treat him with the “accepted first-line treatment” without causing undue hardship to his siblings? Ethical, or not? Is it “child abuse” to treat one kid’s illness by depriving his seven siblings of resources? Cancer treatment isn’t cheap, boyo, and there are lots of ways to die that don’t involve cancer at all. One of those ways is “poverty”, and as we all know, the number-one cause of bankruptcy in the US is (wait for it) medical expenses!

    Let’s take that idea a little further: what story would those parents tell their children? What would they tell *themselves*? “Sorry, Number Six – you’re going on the ice floe because Kids 1, 2, 3, 4, 5, 7 and 8 can’t afford for us to spend $50k pumping exotic chemicals into your veins for you to beat the Reaper”? Or would they say “Hey, the Great Spirit commands us that He wll cure us if we believe enough; all you have to do is believe and you’ll be fine”?

    Suppose that was a decision reached in the dark of night some night after little Danny got his diagnosis: “Honey, we can’t afford it. I mean that we really… can’t afford it.” Not all of these stories have happy, “triumph-over-adversity” endings; most of them have sad, squalid, defeated endings. Doesn’t seem so cut-and-dried now, does it? Same facts, different story. Go watch “Rashomon” and understand the message therein, then you can make blanket statements about who gets to make this decision, and about how good an idea it is to have a Omnipotent Government-Issue Jesus out there, looking out for all the little childrens of the world.

    “This particular instance is tragic because it is clear from court testimony and family background that the mother actually does love her son, but the fact remains that she didn’t just endanger his life, she put him in a position where he would pretty much certainly would have died.”

    Interesting how certain you are of that. Also interesting: that you sure that he isn’t *now* going to die. What should happen to the oncologist and judge if the kid *does* die? After all, clearly they then made the wrong decision. What penalty is appropriate for the parents, if *their* decision was the one that prevailed and the kid died? Why does that differ from the penalty appropriate to the judge and the oncologist for taking on themselves the onus of this decision? Why do they all of the benefit, and none of the risk?

    “The judge actually took a “softly, softly” approach in a way by leaving the child with her and still under her control, merely mandating that the medical treatment which is proven effective be resumed.”

    Well, that’s nice. At least if he’d sent the police to take the kid away, the fig leaf would have been ripped off and the kid would have had adequately demonstrated that neither he nor his parents had any say in the matter. This way, his mother appears to be the jerk and/or hypocrite. I suppose that I can appreciate the dark cunning involved, although I do deplore it.

    “a cave, full of shadows”
    -SD

  34. SD says:

    “Nothing more than your usual playing with semantics. If the same dose of a drug is more toxic to cancer cells than it is to regular cells, then the end result is that it does poison them more.”

    Yes, uh, I find clarity of thought to be somewhat important. Your mileage may vary, of course.

    Describing chemotherapeutic agents as “poisoning cancer cells more” is subtly inaccurate. It is sort-of true, but gives a misleading impression. What can we expect from science or SBM if not the literal truth?

    “As for the error in attribution, mea culpa (in fact, acknowledging the error in attribution is the only reason I am bothering to respond to you in this instance). It’s what I get for trying to whip off a quick response early in the AM.”

    Well, that was unexpected. I figure you’d gloss over it and then come up with some other content-free response to the simple questions and observations contained in my commentary.

    “None of this means, however, that you shouldn’t still report to the Labor-Rehabilitation Center. The black helicopters are on their way to take you there. I’ve ordered them myself. No doubt you’ll whip off two or three more of your prolonged bouts of verbal diarrhea to stink up the joint before they arrive. You’re just that predictable.”

    Your fulsome praise swells me with pride, Comrade. My shovel is yours to command!

    “many shovels, one will!”
    -SD

  35. Jurjen S. says:

    Quoth Dr. Gorski:

    Forcing chemotherapy on Daniel in the face of his actually physically resisting is the second worst option, the first worst option being letting him die from lack of effective treatment.

    This sentence, to my mind, is sufficient evidence that medical personnel, for all the claims to the contrary by CAM proponents, are motivated primarily by humanitarian concerns. And somewhere, I have to admire you for that, because from my own quasi-utilitarian perspective, I’m much inclined to say that I think that if it’s going to be such a struggle to keep Daniel Hauser alive, I don’t see a whole of point in going to that effort.

    Which brings me to James Fox’s statement:

    And I could frankly care less what bother and distress the treating of a non compliant patient could put hospital staff through.

    For my part, I do care. Bluntly, I place more value on the well-being of a crew of highly trained and socially valuable medical professionals than I do on the life of a delusional and learning-disabled adolescent and the perceived spiritual well-being of his newage twinkie parents. I’d rather the hospital staff put their efforts toward treating patients who want to live.

  36. Jurjen S. says:

    Oh, by the way, SD, do us all a favor and quit the pretentious “govorit’ Cde. Gorski” routine, would you? If you’re going to go the quasi-Russian route, the term is “tovarishch,” not “comrade.” Moreover, by using “govorit’” you’re revealing that you don’t actually speak Russian; an actual Russian would say “skazal” (lit. “he told”) instead of “govorit’” (lit. “he speaks”).

  37. Jurjen S. says:

    In addition to my previous post, if you’re seeking to attribute Bolshevik modes of thought to Dr. Gorski on the basis of his family name, I suspect you’re going to come up disappointed; Gorski is a distinctively Polish name, also common among Polish (Ashkenazi) Jews. Poles, neither gentile nor Jew, were big supporters of Soviet communism.

  38. SD says:

    By the way, Jurjen S., do me a favor and listen to Radio Moscow sometime. “GOVORIT… MOSKVA.” Also, cultivate some literary appreciation in your soul. “Skazal Cde Gorskij”… not musical. “Govorit…”: more musical. Style matters.

    Ya izuchal russkij yazik davno, pravilno. No ya znayu ‘tovarishch’. Eto Anglijskij blog, durak, a ne Russkij. Bolshinstvo anglichanin i amerikantsi ne znayut slovo ‘tovarishch’. Ponyatno?

    (Ty ne vidil bolshee oshibku – kogda russkyi glagoly snyagany, myagkij znak net’. Poetomu, eto “govorit” a ne “govorit’”.)

    “viddy, my horoshi droogies”
    -SD

  39. SD says:

    Jurjy:

    “In addition to my previous post, if you’re seeking to attribute Bolshevik modes of thought to Dr. Gorski on the basis of his family name, I suspect you’re going to come up disappointed; Gorski is a distinctively Polish name, also common among Polish (Ashkenazi) Jews.”

    I don’t attribute the beliefs to him because he’s Polish, you ass; I attribute them to him because they visibly form the underpinnings of his worldview. A man who demands that the State crush his enemies for him is not precisely a Titan laboring for the cause of liberty. To his credit, he admits to some small moral pangs about the tableau of pinning a teenage kid to a table and pumping him full of poison, and correctly ascertains that this is a hugely bad PR move (imagine how bad it will be if the kid complies and snuffs it anyway!), but seems to weigh in on the wrong moral side of the issue of the position of the State in this fight. I reiterate: if you have to screw a pistol into someone’s ear to get them to cooperate, YOU’RE DOING SOMETHING WRONG. The idea of compulsion to participate in a treatment – *even one that you favor*, *even one that will probably work* – should not trigger a “reasoned debate”, it should fill you with horror. The idea of a parent being “overruled” for anything less than absolute iron-clad certainty, of the same order as the laws of gravitation or thermodynamics, should inspire the audience not to half-hearted admissions that this is probably for the best, but to a chorus of angry refusal.

    Cde. Gorski takes this position (the fundamental legitimacy and desirability of State intervention, the subordination of individual rights to group desires) in every issue I’ve seen him propose here. Cde. Gorski appears to envision a wise, gentle, loving State, naturally staffed only by caring and selfless professionals, whose caress brings us from the hinterlands of Folly and into the Glorious Future of Progress. Cde. Gorski is an idiot if he believes that this fantasy is a reality, on this or any other planet. Cde. Gorski apparently does not learn from experience, in that this has been tried several times before, and wound up being astonishingly lame – EVERY – SINGLE – TIME. Therefore, Cde. Gorski shall remain Cde. Gorski, at least until I see some evidence that his mind has changed, or until he manages to convince me of the legitimacy and/or desirability of this intervention.

    “Poles, neither gentile nor Jew, were big supporters of Soviet communism.”

    Yeah, well, this one seems to be the black sheep of the family, then, because he sure seems to like the idea.

    “arise, ye workers…”
    -SD

  40. SD says:

    Govorit Cde. Gorski:

    “One other note–to Eric: Sorry I was harsh, but mistakenly thinking that the remark came from the troll SD colored my language. Again, mea culpa.”

    And here, kids, we have the famous “Scientific Impartiality”. Remember, kids – what’s important is not what’s said, it’s *who said it*!

    “oooooooooooooooooooooooo”
    -SD

  41. Luna-the-cat says:

    SD: “Yes, uh, I find clarity of thought to be somewhat important.”

    [stares in astonishment] Dayumn. You’d never know it by the evidence!

    I mean: this from a man who says things like “a claim which is untestable by science is also untestable in court” and who makes assertions along the lines that because there is some inherent uncertainty in ANY treatment, that treatments which completely lack evidence of benefit are equal in status to treatments of proven benefit, and that a 0% chance of survival is legally equal to an excellent chance of survival?

    Oh, well, good for a laugh, anyway.

    Yes, SD *is* a troll, isn’t he. Ok, I’ll stop feeding.

  42. Versus says:

    SD: “fraud in se”? What is that?

    BTW, fraud is not just a crime, it is also a tort, as well as reason for voiding a contract and a means of breaching a contract, all of which have application to CAM. Also, belief in what one says does not automatically negate a finding of intent to defraud, as you imply in your response to Dr. Gorski.

  43. qetzal says:

    SD,

    You’re right – who said it does matter.

    For example, some of the things you say could probably advance the discussion here. But because you’re the one saying them, and because you apparently enjoy being annoying, it’s rarely worth wading through your schtick. Whatever valid points you make are entirely irrelevant, because your purpose is clearly to troll.

    If you want to engage in serious discussion, or get people like me to pay attention to what you say, please stop playing the troll. Or keep it up, if that’s truly your purpose, and I’ll resume ignoring you.

  44. SD says:

    Versus:

    “SD: “fraud in se”? What is that?”

    ‘Fraud in itself’; fraudulent just because it exists, not because of any explicit act of material misrepresentation made by the proponent. ‘Prima facie fraud’ is probably more appropriate.

    “BTW, fraud is not just a crime, it is also a tort, as well as reason for voiding a contract and a means of breaching a contract, all of which have application to CAM.”

    My point exactly. There are many better ways of dealing with CAM than seeking succor at the legislative trough, like encouraging victims to eat practitioners alive with civil suits for tortious conduct. That would quickly clean up all of the wild claims made by CAM practitioners.

    Free markets and free societies have their own ways of punishing bad conduct, and they are quite effective.

    “Also, belief in what one says does not automatically negate a finding of intent to defraud, as you imply in your response to Dr. Gorski.”

    For constructive fraud, it may not, that’s true; constructive fraud requires only that there be a certain inchoate “unfairness” present, not that all the elements of fraud be proven. (Mostly used for slick “If you don’t tell me, then I don’t know and I’m not lying when I’m saying I don’t know” kind of deals, as I recall.) But note that “intent” is in most other instances an intrinsic portion of the definition of fraud. Fraud, defined in its simplest form, is an *intentional* misrepresentation of material fact leading to damage. If there is no intent – i.e. if the person does not know that the representation they make is false, or believes it to be true – then there is no fraud. Now, there may be negligence, or simple error, but that is a different beast. Calling CAM “fraud” is good rhetoric, but bad practice, in that it is not actually true (the treatment cannot itself be fraudulent, and it can be presented non-fraudulently).

    “but on the other hand…”
    -SD

  45. SD says:

    qetzal:

    “You’re right – who said it does matter.

    For example, some of the things you say could probably advance the discussion here. But because you’re the one saying them, and because you apparently enjoy being annoying, it’s rarely worth wading through your schtick. Whatever valid points you make are entirely irrelevant, because your purpose is clearly to troll.

    If you want to engage in serious discussion, or get people like me to pay attention to what you say, please stop playing the troll. Or keep it up, if that’s truly your purpose, and I’ll resume ignoring you.”

    Lesson One: Seek substance, not form. If you are distracted by style, then you are not paying attention to the main argument, and the important points therein.

    Lesson Two: The opponent is not obligated to “be nice” to you, or to phrase things in ways that make you comfortable, or to feed you slow pitches over the plate. You are not entitled to an easy fight, or to have your flawed opinions ‘respected’ or ‘tolerated’. You are entitled to no more than the rhetorical equivalent of an ice-pick in the kidneys, until you either cry “Uncle”, or withdraw.

    Lesson Three: This *is* ‘serious discussion’. That you do not like the way it’s presented does not make it frivolous.

    Lesson Four: Even trolls have their uses.

    Lesson Five: The attention of “people like you” is not the purpose of this exercise.

    “here endeth the lesson”
    -SD

  46. Luna-the-cat says:

    Lesson Six, SD: you advance nothing and accomplish nothing when everyone simply ends up ignoring you because you bury your occasional intelligent comment under a heaving load of pompous fuckwittery.

    (Sorry, couldn’t resist.)

  47. Zetetic says:

    I wonder if SD has a job.

  48. qetzal says:

    SD,

    Lesson One: Offer substance, not form.

    Lesson Two: The opponent who deliberately chooses to obfuscate his points with an annoying style is demonstrably not interested in clear communication.

    Lesson Three: The seriousness of a discussion is not evidence for the seriousness of every participant.

    Lesson Four: Trolls are useful as foils and bad examples, but little else.

    Lesson Five: People who wish to engage in serious discussion value the considered attention of others. People who don’t, don’t.

    As it’s clear that trolling is more important to you than reasoned discussion, I’ll leave you to it. Have fun!

  49. SD says:

    qetzal:

    “As it’s clear that trolling is more important to you than reasoned discussion, I’ll leave you to it. Have fun!”

    What a convenient way to avoid having to answer any of the questions posed so far.

    “just a simple inquisitor”
    -SD

  50. Stu999 says:

    SD:

    http://tinyurl.com/pohgk2

    By the way, you’ve contradicted yourself on the substance-style-form priorities… which is it?

  51. vargkill says:

    SD,

    I seem to be having trouble finding anything wrong or hard
    to understand about what you post. For a blog full of educated
    people, there seems to be a serious lack of reader comprehension going on here…

    Its not hard to follow, i think SD is making very very good points
    and when its to no ones liking, they seem to go into some argumentative, defensive rhetoric!

    Amazing!

    English is my second language and i seem to understand
    where SD is coming from.

  52. vargkill says:

    PS

    I also noticed, whenever someone has anything to say
    that differs from the popular opinion on SBM they are automatically pegged as trolls, what gives? Is this not
    a freeish country?

  53. Stu999 says:

    Why does the room stink of sockpuppets all of a sudden?

  54. David Gorski says:

    I also noticed, whenever someone has anything to say that differs from the popular opinion on SBM they are automatically pegged as trolls, what gives

    No, whenever someone is obviously trolling, they are correctly pegged as trolls.

    There are several commenters who frequently challenge or disagree with what we SBM bloggers have written but are not “pegged as trolls” because they aren’t trolls.

  55. vargkill says:

    What constitutes a troll in your opinion?

    All SD simply does is provides a valid point of view then
    presents a challange that leads to question/questions that
    are then dodged and met with foolish rhetoric from you and
    other on here, who then call him a troll.

    Intresting indeed! Because no matter how you roll the dice
    on here theres always someone to find a reason to start a fight.

    Im just calling it like i see it.

  56. vargkill says:

    Dr. Gorski,

    “I am opposed to chemotherapy because it is self-destructive and poisonous,” he told the court. “I want to live a virtuous life, in the eyes of my creator, not just a long life.” He also filed a “spiritual path declaration” that said: “I am a medicine man. Some times we teach, and some times we perform. Now, I am doing both. I will lead by example.”

    Where i can understand the concern by everyone for this
    childs life, if he feels that strongly, then who are we to tell
    him any different? I think everyone including parents should
    have the right to choose treatment as they see fit. I feel deeply
    that it is a sad state of affairs when we have to resort to forcing
    someone to undergo Chemotherapy! Child or not! If they believe
    and have faith that he can be healed by “CAM” then let him!
    If he dies then thats on his parents, or maybe they will truly
    believe it is his time to go. But we should by no means force
    anyone to do anything. Who are we to judge? More so if that
    very thing is going hand and hand with a spiritual belief.

    This is a freeish country after all right????

  57. Calli Arcale says:

    Yes, this is a free country, vargkill, and I believe that should extend to children as well. That is, I think children should not be considered the property of their parents, with their fate entirely in their parents’ hands. When the parents are choosing a course of action which will rob their children of the rights to life, liberty, and the pursuit of happiness, I think the state has a duty to intervene to protect that child’s rights.

    Of course, if the child resists chemo directly, it becomes a more complicated situation. But it hasn’t even gotten that far.

    The kid got an x-ray yesterday, and guess what! The herbs aren’t working. The tumor has grown back to the size it was before his first chemo treatment. Not being a doctor, I have no idea what this means for his prognosis, but frankly I’m disgusted with his mother for continuing to live in denial even with the evidence right in front of her. How long will she stay in denial? Will she admit she was wrong when her son is dying? Probably not; indeed, it will become even harder for her to own up to it then, because that’s a terrible burden for a parent to bear. But the longer she waits, the more inevitable that outcome gets.

    The doctor involved in the x-ray gave her the names of three oncologists. She was supposed to pick one by today. She refused to take the list, and now she’s gone on the lam with her son, leaving her husband, their other seven children, and their dairy farm. Avoiding the fact that she was wrong is apparently more important to her than the rest of her family. More important to her than even her cancer-stricken son, who is likely going to die. And since they’ll be on the lam at the time, he probably won’t even have hospice care.

    That’s certainly freedom for the parent. But it’s not freedom for the child.

    BTW, regarding the “medicine man” thing, this kid is not an elder in a church or anything. That’s a title bestowed on anyone over 13 who is current on their dues in the Nemenhah organization. It’s an effective way of making the marks feel all proud and special while Cloudpiler relieves them of their money.

  58. Scott says:

    He feels strongly, but clearly has no conception of what his situation is, what the consequences of his choice are, or indeed what a “virtuous life” or being a “medicine man” mean. Essentially, he’s quoting his mother, nothing more.

    While individuals who are capable of making reasoned decisions make choices, we respect them. But when there is no such capability, it is the duty of the caregivers to decide for them. And when the decision of the caregiver is (effectively) to kill the child in question, the state has a duty to intervene.

    It’s fundamentally the same sort of situation as a three-year-old who hears a story about birds, decides it would be neat to fly, and wants to jump out a 20th-story window in order to do so. (And the parents are willing to let him do it.) I don’t think any reasonable person would argue that anyone is obliged to respect the three-year-old’s choice.

  59. David Gorski says:

    Apparently Daniel’s mother Colleen Hauser has fled with him:

    http://www.startribune.com/local/45427417.html

    The judge has issued a warrant. Judge Rodenberg has issued an arrest warrant for Colleen Hauser and ordered that Daniel be put into foster care and immediately evaluated by a pediatric oncologist when he is found.

    It doesn’t look good at all for Daniel. Precious time has been wasted, and his chances of survival decrease the more time passes and the larger his tumors grow. It’s quite possible that, if Colleen can avoid the law long enough, it won’t matter what treatments Daniel undergoes any more. His tumor will have grown too much. Not only will his chance at a complete remission decrease, but it could end up requiring a much harsher treatment, such as a bone marrow transplant, to achieve it.

    Of course, if Daniel dies, the alt-med enablers who facilitated his death will blame the initial course of chemotherapy and the stress of the court, rather than admit that their quackery doesn’t work and they led him to his death.

  60. lonelystudent says:

    This has been an interesting discussion.

    One question: what exactly constitutes a “troll”? I don’t understand why SD is “trolling”. Can someone explain?

  61. SD says:

    Govorit Cde. Gorski:

    “Of course, if Daniel dies, the alt-med enablers who facilitated his death will blame the initial course of chemotherapy and the stress of the court, rather than admit that their quackery doesn’t work and they led him to his death.”

    If the kid had submitted to the treatment and died anyway, would you say that the oncologist “led him to his death”? And what if he survives? Ah, yes; that was “just luck”.

    Very scientific, Comrade.

    I like how odds of 80-90% morph seamlessly into “100%” when castigating the skeptical for their superstitious bumpkin folkways, particularly those which (as in this case) are driven by personal experience (watching the aunt die). I also like how the mother is driven by anything from paranoid schizophrenia to stubborn pride – anything and everything except concern for her kid – but the oncologist is driven solely by selflessness and pure sweet light.

    Unfortunately for Cde. Gorski and crew, here’s the problem: she (and he) are statistically guaranteed to get caught, probably before the end of the day. People are generally not able to just “disappear”; they leave some trace that can be found. Based on the intelligence level exhibited so far, they probably used a credit card to rent a hotel room. At this point, there’s probably an Amber Alert out, too.

    Prediction #1: The kid will be captured, if not today, then certainly by the end of the week.

    Prediction #2: The kid will be treated strictly according to the oncologist’s plan, and will die anyway.

    Prediction #3: The oncologist will blame the mother, even though the delay was short.

    Prediction #4: While this will be a victory for CAM and parents’ rights advocacy groups (“see! they killed him!”), and a PR disaster for SBM, the crew here will also maintain that the mother *actually* killed him by delaying treatment (“every second counts! she *really-really* killed him! not us! nuh-uh!”)

    Prediction #5: Nobody else will believe them, as is right and proper.

    “bestin’ kreskin”
    -SD

  62. David Gorski says:

    One question: what exactly constitutes a “troll”? I don’t understand why SD is “trolling”. Can someone explain?

    Usenet or Internet discussion forum troll:

    http://www.flayme.com/troll/
    http://en.wikipedia.org/wiki/Internet_troll
    http://redwing.hutman.net/~mreed/warriorshtm/troller.htm

  63. SD says:

    [snip commentary by Luna-the-cat]

    … Did you bring any useful commentary, Luna? It looks mostly like you didn’t bother to read any of what I wrote, still less substantively respond. (I’m not offended, it happens often. I think it’s the big words.) It looks, in fact, like you’re doing a “drive-by”, flinging a content-free “me-too” comment out without participating in the discussion in any meaningful way. (That means making an assertion, refuting one of *my* assertions, expanding on a theme, &c.)

    Suggestion: there’s plenty of fertile ground in what I wrote, and I’ll engage anybody who doesn’t mind a fair, balanced discussion.

    “fair and balanced”
    -SD

  64. David Gorski says:

    Prediction #3: The oncologist will blame the mother, even though the delay was short.

    But the delay was not short. Daniel was diagnosed in January and underwent only one round of chemoradiation. He has not had any further treatment since then other than his herbs, vitamins, and “pH water,” and as a consequence, after shrinking initially, his tumor has regrown to where it was at the time of diagnosis, as shown on the court-ordered X-ray yesterday. If he had continued to undergo the recommended chemotherapy and radiation, by now very likely he would be well on his way to a complete remission. From the article:

    Daniel was diagnosed with Hodgkin’s lymphoma in January and received his only chemotherapy and radiation treatment that month. He did not return for a second treatment in February and the family began substituting alternative care, including herbs and vitamins.

    It is true that a few days don’t make much, if any difference, but three or four months most definitely can and do make a big difference, and the reason that there has been a three-plus month delay is because of Daniel’s mother. If Colleen and Daniel manage to evade the law a few weeks, Daniel’s tumor could grow considerably more, and Daniel’s chances would fall that much more.

    No, it is entirely appropriate to blame the mother if Daniel dies.

  65. svovi01 says:

    ok so chemo killed his aunt, and some other kid got out of chemo well enough to do radiation instead, which seems to have worked.

    anyone who is NOT questioning whether or not to do chemo is crazy. it’s poisonous. it could kill you, it could trash something long term. it’s barbaric.

    with all the meds and treatments that are highly promoted one week and you find out they kill you some other way next week, or maybe your arm just falls off… there are no “sure things” that’s for sure. it’s a revolving door on a lot of these treatments “it’s good, it’s bad, it’s good, it’s bad” it’s ridiculous. THEY JUST DON’T KNOW FOR SURE. SO,

    EVERY option should be explored and promoted with humility and open-mindedness. the whole of eastern medicine, far more ancient and natural to our systems, could challenge any approach that poisons you. your own common sense might say the same.

    but either way you go, it should occur to everyone who has an instinct or a thought that is not completely indoctrinated by whatever the system or science has told you you must believe, which of course is just another belief system, which will ultimately be replaced by some other belief system later, that it’s possible that this kid knows something about his body that you don’t.

    for every kid that didn’t argue, maybe the one that does argue knows something you don’t. did that occur to anybody? did you ever have a resistance to something that turned out to be a good reason for you? it’s possible.

    so if the chemo kills him, what will you say then?

    ultimately we are all going to die. that’s not a vote for death, it’s just that somethings this kid has said about the integrity of his life versus fearing death, are actually quite mature and perhaps evolved compared to all the folks that just follow the script because they are told to and feel so personally threatened by anyone with the courage to think outside that box.

    and all that said, i don’t know the right answer for him. neither do you.

  66. David Gorski says:

    THEY JUST DON’T KNOW FOR SURE. SO,

    Actually, in this case we do know for sure, or at least for about as sure as science will allow. In fact, we already know from Daniel’s own history that the herbs and vitamins he took aren’t curing his tumor. It grew back to the size it was at the time of his diagnosis, all while he took his herbs and vitamins and other woo.

  67. SD says:

    Govorit Cde. Gorski:

    http://en.wikipedia.org/wiki/Internet_troll

    “In Internet slang, a troll is someone who posts controversial, inflammatory, irrelevant or off-topic messages in an online community, such as an online discussion forum or chat room, with the primary intent of provoking other users into an emotional response or to generally disrupt normal on-topic discussion.”

    My posts to date:

    [-] Controversial
    [-] Inflammatory
    [ ] Irrelevant
    [ ] Off-topic

    ([-] = 1/2 true, or thereabouts)

    If you don’t want public comments, then disable public comments. If you don’t like *my* comments, then ban me. I note that you’ve hung this l’il consensus-cluster out on the big bad Intarwebs, so you can tolerate the occasional inconveniently-tough-to-answer comment. If you can’t handle that, perhaps this should be a private blog, where you can commiserate to one another in secrecy, a little medical-minority Remnant that can stroke each other until Science Jesus comes to whisk you away to the Promised Land of infinite funding and no competition?

    I note that there are plenty of others (e.g. pec) who apparently do not merit a designation of “troll”. It seems that you have little problem with easy meat coming here to get slapped around to provide you an ego-boost, but any opposition more competent than that and you scream “TROLL!”

    Grow up, Comrade. Learn to respond substantively. It would do your arguments, and your positions, a world of good.

    “mooooaaahhhhmmmmmmm, he’s trooollliinnngggg meeeee!!!”
    -SD

  68. David Gorski says:

    Grow up, Comrade. Learn to respond substantively. It would do your arguments, and your positions, a world of good.

    Gimme a break, Kid SD. I’ve been on various discussion boards beginning with Usenet back in the early 1990s (perhaps even earlier; that long ago gets a bit fuzzy), “responding substantively” if you want to put it that way. If there’s one thing I’ve learned, it’s that trolls are not worth wasting that much time on “responding substantively,” because they are not interested in “substantive” conversation. They tend to view things as nothing more than a “game” for their amusement, and that’s all they’re interested in (which you more or less have admitted). It is actually the trolls who need to grow up.

    And, actually, pec has been on occasion labeled a troll.

  69. SD says:

    Govorit Cde. Gorski:

    “But the delay was not short. Daniel was diagnosed in January and underwent only one round of chemoradiation. He has not had any further treatment since then other than his herbs, vitamins, and “pH water,” and as a consequence, after shrinking initially, his tumor has regrown to where it was at the time of diagnosis, as shown on the court-ordered X-ray yesterday. If he had continued to undergo the recommended chemotherapy and radiation, by now very likely he would be well on his way to a complete remission.”

    Okay, Doctor, so here’s the question:

    Although I understand that you cannot with complete certainty answer this question, you are presumably, by training and experience, able to hazard a guess. After one aborted round of chemo and radiation, with a three-month delay before resumption of treatment, how far are his odds of survival decreased (assuming no conflating factors)? What were they to begin with?

    Second question: How much does the nocebo effect alter these odds? Remember, this kid thinks that the treatment is *killing* him, not *helping* him, and the oncologist is not likely to convince him otherwise in any timeframe short enough to matter much.

    Third question: To what extent does the aborted treatment alter his odds? Does the lymphoma become refractory to this treatment? Has it had sufficient time and exposure to that treatment to become refractory, or is the kid just back to the status quo as of January?

    “SBM: we’ve got questions, you’ve got answers!”
    -SD

  70. Karl Withakay says:

    My prediction: In the next few days we will find out that just before she disappeared, the mother withdrew a large amount of cash from the family’s bank account…. w/o the knowledge of the father: wink-wink, nudge-nudge.

    “He said his wife told him she was going to leave and “That’s all you need to know.” He said he didn’t ask where she was going and hasn’t not called relatives or friends since to inquire where she and Daniel might be.”

    They may get caught right away, or they may not. The family may have spent all their time since the judge issued the original order arranging the flight with support of sympathetic parties, like the Nemenhah band.

  71. SD says:

    Govorit Cde. Gorski:

    “Gimme a break, Kid SD. I’ve been on various discussion boards beginning with Usenet back in the early 1990s (perhaps even earlier; that long ago gets a bit fuzzy), “responding substantively” if you want to put it that way.”

    Oh, well, wow, I am in awe of your intarwebs seniority. Oh, wait: Usenet, ’91. While you might be able to beat that, I doubt it. Most doctors or wannabes didn’t even know what the Internet *was* until well after the Eternal September (and if you don’t know what that was, then game-over-you-lose-thanks-for-playing).

    “If there’s one thing I’ve learned, it’s that trolls are not worth wasting that much time on “responding substantively,” because they are not interested in “substantive” conversation.”

    Oh, believe me, Comrade, I *am* interested in substantive conversation. What I am not interested in is playing pattycake and reaching “consensus”. My idea of “consensus” borrows heavily from Chinghiz Khan. If I’m not right, I strive to *get* that way very quickly. I am likewise not interested in being “nice”, because being “nice”, in this context, means indulging in euphemism, i.e. lying, which I’m not going to do *or* tolerate.

    “They tend to view things as nothing more than a “game” for their amusement, and that’s all they’re interested in (which you more or less have admitted).”

    No, I’ve admitted to being entertained (which I am), and in smiting folly (which I have). These are orthogonal to the state of being interested in substantive conversation. Don’t misunderstand me – you’re still wrong – but I do not see this as an impediment to fruitful discussion.

    Your plans and desires involve convincing people like me that they are a good idea. Might as well get started now producing answers to the objections I raise; you’ll be needing them.

    “It is actually the trolls who need to grow up.

    And, actually, pec has been on occasion labeled a troll.”

    Well, I’ve not seen it so far – pec looks like one of the chewtoys kept around for a good smacking every once in awhile, a practice which, while satisfying, does not lead to much long-term improvement in either smacker or chewtoy. You may take *my* word for that as a long-time Internet denizen.

    “get off my lawn”
    -SD

  72. vargkill says:

    Scott,

    “It’s fundamentally the same sort of situation as a three-year-old who hears a story about birds, decides it would be neat to fly, and wants to jump out a 20th-story window in order to do so. (And the parents are willing to let him do it.) I don’t think any reasonable person would argue that anyone is obliged to respect the three-year-old’s choice.”

    Fundamentally the same? A 13 year old compaired to a 3 year old… I would like to assume in all logic that a 13 year old has
    just maybe maybe a little more rash and commen sense then
    a 3 year old who does not know any better. Good point on
    your part indeed, but the anaolgy is not so good…

    The point is, shit happens. If the kid dies then how is that
    anymore tragic then every other 13 year old who dies and
    has no power of the authority to step in? Where this whole
    thing is a slippery slope, i still have to stand by the the whole
    freeish country thingy.

    Calli Arcale,

    “I think children should not be considered the property of their parents, with their fate entirely in their parents’ hands.”

    So then whos “property” are they considered? Why would
    you consider another human life as someones “property”?

    If adults have the freedom to have sex when they want and
    decide to have a child, then why do we see fit to step in should
    they decide to choose another treatment option? I understand
    the flip side of the argument, but if it is our responsibility to
    discipline our kids, and provide for them, then what if they feel
    as a parent that taking a “CAM” course of action is 100% appropriate regardless if it kills the child or not? It is the parents
    job to provide for their children as they see fit so long as the
    children are not abused or killed.

    So what if in all faith they
    truly believe that they can heal him on their own? What if
    they fail and he dies? What happens if the chemo kills him?

    1. So they take him to a church and do their thing and he dies.

    2. What happens if the issue goes away?

    No more or no less, could you blame the Chemo for his death
    then you could the “Medicine man”?

    Who wins in this situation?

    My only point is, regardless of the out come, i see no point
    in making this child get Chemo. I also see no point is us saying
    that they are wrong for believing their faith in their religion can
    save him. Let them try. If he dies then whatever!

    Im sure theres a painful tragedy as to why every kicks the bucket, but the fact is, im not going to say they where wrong for
    persuing an alternative form of treatment. After all, being able
    to do so is what this freeish country is all about right?

  73. vargkill says:

    Gorski,

    I know what a troll is, thank you very much. I wanted to know
    in your opinion what you considered a troll to be.

    I suppose im a troll for coming on here and expressing my
    opinion. Sorry im not an SBM nutt hugger!

  74. Chris says:

    vargkill:

    I think everyone including parents should
    have the right to choose treatment as they see fit.

    Does that include exorcism and forcing a child to drink enough water to cause death through water toxicity (Kim Canhoto) or beaten and starved as “attachment therapy (Lucas Ciambrone)?

    I just want to know if you consider a child a possession or a real human being that deserves as healthy a life as possible.

    More cases here: http://whatstheharm.net/children.html

  75. vargkill says:

    Chris,

    I never meant that children are Possessions! Please show
    me where i said that they where?

    Maybe in the sense of belonging to and being the responsibility
    of the parents, but not in the sense you are trying to make
    it sound.

    What if you did something a certain way when your kids
    got sick and then all the sudden someone came along and
    told you that you could not do it? More so if it walked all
    over your religious beliefs?

    “Does that include exorcism and forcing a child to drink enough water to cause death through water toxicity (Kim Canhoto) or beaten and starved as “attachment therapy (Lucas Ciambrone)?”

    Natural healing beliefs and practice is a lot different then
    beating and starving a child.

    To quote myself…

    “It is the parents
    job to provide for their children as they see fit so long as the
    children are not abused or killed.”

  76. vargkill says:

    Let me state that this is the 3rd country i have lived in.

    I was born in Norway and spent a good amount of time living
    in Canada.

    I can honestly say that the American health system is the
    most appalling i have ever seen.

  77. Chris says:

    vargkill:

    I never meant that children are Possessions! Please show
    me where i said that they where?

    I admit you did not, but that is the implication I get whenever someone says “only we can say how we take care of our children!”.

    I think you need to be more careful of what is thought of as being done for “religious” belief. Many of the children who were harmed and even killed in the list I posted were done so in the name of religion.

    And I have deliberately left out the children who have died from Christian Science prayer healing, because they are to obvious a target. Many Christian Scientists have had their beliefs walked all over because no one likes to see a child die a painful death from something that could be treated.

    Where does religious freedom end and the welfare of the child begin? Before or after the child slips into a coma from untreated diabetes or the tumor is the size of a volleyball.

    I sincerely apologize for missing your statement ““It is the parents job to provide for their children as they see fit so long as the children are not abused or killed.”

    How well do think Mrs. Hauser is providing for her son? She has disappeared with her son after it was revealed that his tumor is back and that he actually going to die without conventional treatment (which was working even though it made him feel terrible).

  78. Versus says:

    @SD: No, belief in what one says does not negate a finding of intent in a case of ACTUAL fraud. If one has reckless disregard for the truth one can be held liable for the tort of fraud. So, much of CAM is fraud because no matter how much a CAM pratitioner believes what he says, he cannot ignore the facts. If you wish to argue that “science-based” and “facts” are not the same, or that there is no such thing as “facts,” you may do so, but that is not how the law sees it.

  79. Calli Arcale says:

    For the record, it was not vargkill who first brought up the notion of children as property of their parents. It was me. My contention was that children should *not* be property of their parents, which I think most people would agree with, and that allowing parents to choose whatever they want for their children amounts to considering them the property of their parents.

    Obviously, there are limits to what a parent can be permitted to choose for their child. Even in Norway, where you are from, vargkill, I think this would not be tolerated — consciously choosing to neglect a fatal medical condition which has a high rate of successful treatment if dealt with early.

    “I can honestly say that the American health system is the
    most appalling i have ever seen.”

    I agree with you, but this is not an indictment of chemotherapy. In Norway, you’d get chemo if you had Hodgkin’s lymphoma, and it would be paid for fully by the state. In America, if you have money or insurance coverage to see a doctor, you will be advised to get chemo, and hopefully you can find a way of funding it. America has some of the very best medical care in the world. People come from *everywhere* to get it. But it’s only rich people who are benefiting from it, and that’s the essential problem. If you don’t have health insurance and you get sick in America, you are screwed. Dr Gorski has spoken at length on the subject; I think he nailed it when he said that our system has all the disadvantages of socialized medicine (e.g. bureaucratically determined reimbursements for treatments) with none of the advantages (mainly, universal coverage). The result is that it’s rapidly pricing itself out of the reach of most American citizens, which is a depressing irony. But I digress. This is not relevant to the sad case of Daniel Hauser.

    The latest article at the Strib says that he’s in considerable pain — the tumor is actually *worse* than it was when chemo was begun, and it is now impinging upon the port that was installed last January. On a scale of 1 to 10, he rated his pain at 10. The poor kid. He needs pain relief desperately, but without an actual doctor being involved, the best he can get (legally) is acetominophen and ibuprofen. My heart aches for him. I think the chance to get him to understand the reality of the situation may be gone, and he will likely die because his mother wouldn’t face reality.

    Meanwhile, a friend of the family, who had been acting as a spokesman and who also belongs to the Nemenhah “religion”, has become fed up with them. He’s disgusted that the mother vanished with the boy, and disgusted that she’s not seeking treatment now that it’s clear the herbs aren’t cutting it. Obviously, even the Nemenhah bunch aren’t as anti-chemo as the mother claims, which makes it even more likely that the religious choice argument is total baloney. The boy got scared, the mom decided to humor him, and now it’s a case of denial. Very sad.

  80. vargkill says:

    Calli Arcale,

    I think you are not fully understanding what im saying, so first
    i will address my last post about health care. That was all
    that was intended for was to point out that the american
    health care system is shit!

    “I admit you did not, but that is the implication I get whenever someone says “only we can say how we take care of our children!”.”

    Where do we draw the line? As i stated before, its one thing
    if the kids are being abused or put in a situation where they
    are being killed due to house hold violence. But there is a fine
    line and all i am doing is trying to protect our freedoms by pushing the issue.

    It does not matter if the kid dies as a result of faith based
    healing, or if the kid dies in Chemo. What matters is that no
    amount of medicine or science can put a value on someone elses
    faith or belief. I would be personally pissed beyond belief if
    i believe faith could heal my kid. And if it did not then how is
    that anymore tragic then if he dies in a hospital from taking
    Chemo. Bottom line, the parents and the kid do not wish to
    have the Chemo done so then why should we force him?

    This whole thing seems so much more sensitive because there
    is a child involved, but its not my child and its not yours! Some
    people beat ther kids, some are great parents, others feel they
    have some kinda inharent right to be parents and should be
    the last ones to have kids. But the point is that it is their right
    to choose or deny treatment regardless if it kills the kid or not.

    This is about the fine line between having freedom or letting
    big daddy and big mommy control every little thing we do.

    Guess what? The Westboro Baptist Church is allowed to go
    to the funerals of fallen soilders and protest and say they
    deserved to die. Does that make it right? Never the less, if the
    kid should pass on then at least they parents believed their
    faith would heal him. Just as the doctors have faith in Chemo,
    but he still could die right? So where would be place the blame?
    Its not about placing blame, its about having the freedom to
    choose!

    There child, there situation, Theres to deal with, not my
    problem and not yours, and should not be an issue for anyone
    else who does not believe the same thing they believe in.
    Hes not being beaten, Hes not being starved to death, His
    family believes faith can heal him, So let them believe!

    This is almost as bad as the Terri Schiavo case!

    Many kids in the world die a much more awful death then this.
    Im sorry but dont ask me to cry for this kid when someplace
    else in the world kids are getting shot for believing in a different
    religion.

  81. yeahsurewhatever says:

    “The conflict arises when a parent decides to pursue quackery for a life-threatening but potentially curable illness for a child or a child refuses therapy. It is on such occasions that society as represented by the state has a compelling interest in overriding the parent’s decision and making sure that the child gets the best science-based treatment available.”

    What ‘compelling interest’ might that be, pray tell? It sounds to me like you’re suggesting that ‘society’ has a physical ownership stake in a child.

    What prerogative does ‘society’ have to make sure that anyone gets anything, best or not? It sounds to me like you’re lapsing into Marxism here.

  82. David Gorski says:

    What prerogative does ’society’ have to make sure that anyone gets anything, best or not? It sounds to me like you’re lapsing into Marxism here.

    I’d turn that one right back at you: Are you saying that society doesn’t have an interest in protecting its most vulnerable groups? In other words, are you saying that the state shouldn’t care when parents endanger their children’s lives? If not, why not?

    As someone elsewhere said, it’s a human rights issue. Colleen’s mother is in essence sentencing Daniel to a slow and painful death if she doesn’t get him treated. You clearly appear to be fine with that–or at least unconcerned, thinking that parental rights trump the child’s rights. In other words, you seem to be taking the opposite tact, namely that the parents have physical ownership of their children rather than function as the child’s guardians. There are laws against child abuse, and what Colleen is doing to her child is child abuse. He is clearly not functioning at a high enough level to make this decision himself; the court transcripts and news reports clearly show that. The arguments that he can “decide for himself” have been correctly rejected. Moreover, according to recent news reports, it appears likely that his mother is trying to take him to Tijuana for more quackery. Given that the Border Patrol will be alerted that they might be trying to cross the border, that would leave trying to cross elsewhere, which is dangerous, especially if she is taking a sick child with her. Meanwhile, she’s left her other seven children and her husband.

    Nice bit with the Marxism, though. I always know someone’s out of rational arguments when they start throwing around charges of “Marxist” or “Nazi” inappropriately. I wonder if there’s a version of Godwin’s law that applies to charges of “Marxism,” “Stalinism,” or “Communism.” If not, there should be.

  83. SD says:

    Govorit Cde. Gorski:

    “I’d turn that one right back at you: Are you saying that society doesn’t have an interest in protecting its most vulnerable groups?”

    No, ‘Society’ doesn’t have interests *at all*. ‘Society’ does not think. ‘Society’ does not act. Individuals do all of these things. The belief that ‘society’ has attributes that the individuals ostensibly comprising it do not is the first intellectual and moral error leading to a whole host of others. This road has, at its end, a sort of ethical Armageddon where individual liberty and humanity is limited to the moments one can steal from the State’s surveillance apparatus, and the meaning of ‘freedom’ becomes ‘not formally incarcerated’. That may sound like a great life to you. Forgive me if I do not share your enthusiasm for it.

    I do not care what *your* interest is in ‘protecting’ people. I do not care if it makes you feel good, makes you money, or whatever. You are entitled to feel this way. You are entitled to *try* to protect people. You are not entitled to dragoon me or anybody else into assisting you in your quest to ‘protect’ people, nor to confiscate my wealth to do so, nor to establish large agencies to do either of the above by proxy. Most importantly, you are not entitled to ‘protect’ people that do not wish to be helped.

    “In other words, are you saying that the state shouldn’t care when parents endanger their children’s lives? If not, why not?”

    … Because it’s a bad idea? Because the concept that the state has a dog in this fight implies, as an ineluctable consequence, the assumption by the state of privileges and power structures that are traditionally foreign to it in America, and which tend in the long term to morph into gargantuan, inefficient, destructive monstrosities, and which already have? Because under the guise of ‘protecting the children’, a shocking number of colossal evils can take root and flourish, and in fact already have? Because the child abuse that takes place *within* such a system and abetted by it is much greater than the incidents of abuse taking place *outside* it?

    “As someone elsewhere said, it’s a human rights issue.”

    Yes, it is. The parents have the ‘human right’ to do what they think is best for their child. It’s their child. They made him, they did all the work of raising him to this point (which work neither you nor the State assisted to any meaningful extent); one would think that they are motivated to do as they think best to ensure that that work is not flushed down the tubes. They *appear* to believe that they are acting in his best interests. That this doesn’t jive with your belief about what is best for this child is a fact which I remain unconvinced grants you superior standing to the parents to determine the appropriate course of action.

    When you start offering guarantees of treatment success, then you have the moral authority to condemn other modes of treatment. That is the *minimum* level of effort on your part at which you can begin to even *think* about suggesting a mandatory course of action. That you offer only the imprecation of “It’s just better, trust me” puts you in the same class as all the other con artists, a treatment which you object to, but fail to give anybody any reason to believe that they should not subject you to. (Remember: the people you’re selling your treatment to have as much capacity to evaluate *your* claims that they have to evaluate CAM’s claims about treatment success, generally speaking.) Obviously, Ms. Hauser doesn’t believe you’re going to do her kid any favors. What are you going to do to convince her of that fact, other than cheer on the sheriff’s department as they haul her into jail and her kid off to the hospital to be tied down to a chair and medicated?

    The *real* reason you like the idea of overriding parents’ decisions about children’s welfare for good, good-sounding, or photogenic reasons: because it paves the way to do it for *bad* reasons, such as preventing your political enemies from ‘indoctrinating’ their children. (Or, from their perspective, ‘preventing you from indoctrinating their children’, sort of the way one man’s ‘terrorist’ is another man’s ‘freedom-fighter’.) Come on, Comrade Gorski, admit it: the idea of a “harmonized” child-care rubric satisfies you, doesn’t it, as long as you’re in control of it? As long as we’re teaching and doing only ‘good’ things with the kids, and all the ‘bad’ things and subjects are illegal, then things will be all for the best, right? And where appropriate, we can have maybe some ‘menus’ for the good things, where parents can enjoy a choice between two or three alternatives. And we could even handle deviations, by having them approved by ad-hoc or maybe even permanently-appointed committees, right, consisting of a team of experts to evaluate the ‘goodness’ of the proposed activity or curricular item? These will be things that will make you nod your head, of course, uh-huh, yeah, that sounds right, that’s pretty good; I don’t mind this one over here, this one looks okay, sure, sounds like we’ve got that pesky problem of child-rearing all sewed up, thank God, what’d we ever do before the Uniform Childcare Act…

    “Colleen’s mother is in essence sentencing Daniel to a slow and painful death if she doesn’t get him treated.”

    No, she isn’t, ‘in essence’. She *might* be. There’s a difference. It is the difference, in the words of Samuel Clemens, between lightning and a lightning bug.

    “You clearly appear to be fine with that–or at least unconcerned, thinking that parental rights trump the child’s rights. In other words, you seem to be taking the opposite tact,”

    That would be ‘tack’, Comrade. Taking the opposite ‘tack’.

    “namely that the parents have physical ownership of their children rather than function as the child’s guardians.

    Clearly, they’re neither owners nor guardians.

    I reiterate: you are not making the decisions if you are only permitted to make the ‘right’ decision.

    I note that – as usual – you did not answer the question about whether they are now morally obligated to pay for the treatment they will be forced to consume. Is it ethical for the oncologist to bill them now, or to accept payment, in this instance?

    Why not just seize the child entirely, pull him out of the home and ‘issue’ him to another set of parents that will presumably do a better job of keeping him?

    “There are laws against child abuse, and what Colleen is doing to her child is child abuse.”

    That you say this does not make it so, although it certainly is an effective trope to whip out. (“She’s abusing her son! Won’t! Somebody! Think! … OF THE CHILDREN?!”)

    She’s scared and feels like a hunted animal. So does the kid. This is not a good way to convince them that you’re right, and that you have his best interests at heart. Why not leave a standing offer for them to come back, leaving it at that, and start idly puzzling over what you *can* do for the kid if he comes back?

    “He is clearly not functioning at a high enough level to make this decision himself; the court transcripts and news reports clearly show that. The arguments that he can “decide for himself” have been correctly rejected.”

    … If he’d been all for the treatment, would you still say that? Since he can’t make this decision for himself, would you demand that he receive the support and counsel of a guardian ad litem before beginning his next round of chemo, to ensure that he was certainly doing the right thing?

    What if he was leaving for an experimental treatment?

    Even a fool can decide that he doesn’t want to be sickened now in exchange for the possibility of health later, even though the other choice is to be sort-of healthy now and probably sick (and shortly thereafter, dead) later. That is a tradeoff that can be explained to even the dullest 13-year-old. That the oncologist failed in this task doesn’t say much for him, frankly.

    “Moreover, according to recent news reports, it appears likely that his mother is trying to take him to Tijuana for more quackery. Given that the Border Patrol will be alerted that they might be trying to cross the border, that would leave trying to cross elsewhere, which is dangerous, especially if she is taking a sick child with her.”

    I doubt this. They’re probably still in the vicinity.

    “Meanwhile, she’s left her other seven children and her husband.”

    Oh, that’s cute, Comrade Gorski. So what? I thought she was in the running for the ‘Mommie Dearest’ award for most abusive mother since Joan Crawford. Isn’t that a net benefit for her husband and other kids, then, that she isn’t around to abuse them anymore?

    “Nice bit with the Marxism, though. I always know someone’s out of rational arguments when they start throwing around charges of “Marxist” or “Nazi” inappropriately. I wonder if there’s a version of Godwin’s law that applies to charges of “Marxism,” “Stalinism,” or “Communism.” If not, there should be.”

    So what the hell do *you* call it? That you give the practice a different name does not change its underlying reality, or consequences.

    “the nickelodeon of liberty”
    -SD

  84. Karl Withakay says:

    Just to clarify, does anybody not agree that there is a limit to parents’ rights to choose what happens to their child?

    Surely not even SD is so big a libertarian anarchist that he believes parents have the right to slit their child’s throat and bleed him to death if they believe that is the only way to save his soul, or withhold all food in the belief that if he is righteous and worthy of living, the almighty will provide sustenance, right?

  85. Karl Withakay says:

    vargkill,
    “It does not matter if the kid dies as a result of faith based
    healing, or if the kid dies in Chemo.”

    “And if it did not then how is
    that anymore tragic then if he dies in a hospital from taking
    Chemo. ”

    These statements imply a false dichotomy where death is the likely outcome regardless of action taken. Your statements ignore the high probability of survival with chemo.

    “Bottom line, the parents and the kid do not wish to
    have the Chemo done so then why should we force him?”

    “But the point is that it is their right
    to choose or deny treatment regardless if it kills the kid or not.”

    Are those statements specific to this situation or generalizations about parent’s rights regarding medical decisions for children? Surely there are sme limits to parent’s rights to choose for their children?

    “at least they parents believed their
    faith would heal him. Just as the doctors have faith in Chemo,
    but he still could die right?”

    The doctors have facts and science that support the claim of a high probability of survival with chemo, if treated in time. The parents have only their faith to support their belief.

    “Hes not being starved to death, His
    family believes faith can heal him, So let them believe!”

    He is being deprived, ‘starved’ if you will, of treatment that would give him a high probability of survival, without which, he has a very low (nearly non-existent) probability of survival.

    “Many kids in the world die a much more awful death then this.
    Im sorry but dont ask me to cry for this kid when someplace
    else in the world kids are getting shot for believing in a different
    religion.”

    OK, by that reasoning, I don’t expect you to cry for him or his parents if he is forced to undergo chemo against his and his parents wishes, as there are people in this world suffering far harsher treatment from their governments than being forced to accept medial treatment intended to save their lives.

  86. SD says:

    Karl:

    “Just to clarify, does anybody not agree that there is a limit to parents’ rights to choose what happens to their child?”

    Yes, everybody does not agree, particularly in this case. It is not as cut-and-dried as you like to pretend it is.

    “Surely not even SD is so big a libertarian anarchist that he believes parents have the right to slit their child’s throat and bleed him to death if they believe that is the only way to save his soul, or withhold all food in the belief that if he is righteous and worthy of living, the almighty will provide sustenance, right?”

    I am not hysterical enough to believe that there is a moral equivalence between declining one form of medical treatment on behalf of one’s child and sacrificing him to appease Tlaloc the Rain God, no. As I said: when the oncologist can offer a guarantee of a cure, that’s the point at which we can begin thinking about dictating a particular treatment. Until then, the parents get to choose.

    Again I ask the question: What if she declined treatment because they can’t afford it, or because it would be an unfair drain of resources on the other seven (healthy) kids? I note that there seems to be a standard, lockstep, death-march presumption of infinite guilt on her part without mitigating circumstance, and without any information whatsoever as to her actual motivations or those of her son. Thorny ethical question: Does her motive matter?

    (I keep asking these ethical questions – vainly, it seems – in the hopes that some of the fine ethical minds here can provide some insight as to their worldview. I would especially like hear Cde. David “Kidnap and brainwash him” Gorski’s take on the ethical dimensions of this situation, which he tantalizingly alludes to in the post itself but declines to expound further upon.)

    “waiting for godot”
    -SD

  87. SD says:

    Here’s another case of ‘medical neglect’ where the mother disappeared with the kid after a court order to take him into custody:

    http://www.wyff4.com/cnn-news/19526636/detail.html

    Long story short: the kid is 14 and weighs 555 pounds, a quarter-ton. While I submit that this woman is probably not a candidate for Mother of the Year – exactly how you get a kid that fat is beyond me – it raises yet another of those pesky thorny ethical questions: Where is this line drawn? At what level of health risk? Is there such a line? Can it be defined, so that we all get to know what it is before we sign off on it? Or, is it just any time the doctor doesn’t like what he sees, or doesn’t like the answer he gets from the parent?

    “filioque – yes or no, my son?”
    -SD

  88. David Gorski says:

    Yes, everybody does not agree, particularly in this case. It is not as cut-and-dried as you like to pretend it is.

    Actually it is, at least from a scientific standpoint.

    I am not hysterical enough to believe that there is a moral equivalence between declining one form of medical treatment on behalf of one’s child and sacrificing him to appease Tlaloc the Rain God, no. As I said: when the oncologist can offer a guarantee of a cure, that’s the point at which we can begin thinking about dictating a particular treatment. Until then, the parents get to choose.

    So you’re saying that a 90% chance of a cure isn’t good enough a “guarantee” to tell parents that their child’s right to life trumps their right to sacrifice their child by pursuing a treatment that has about as close to a 0% chance of success as there is? There is virtually no treatment that is 100% effective in medicine. So what “guaranteed” do you require? What percent effectiveness is “effective enough”? 90%? Obviously not enough for you. 95%? 99%? Give us a number here.

    Clearly, you do think that there are virtually no limits, that parents can choose virtually anything to their child, no matter how harmful, your obfuscations and anarchist justifications notwithstanding. It’s all a smokescreen for your apparent real argument that parents can do virtually anything with their child that they please, harm be damned, medical neglect be damned.

    As for the cost, there’s the federal SCHIP program and Medicaid, and most states have various forms of insurance that cover the cost of cancer care for most uninsured children. If the child is insured, care is covered. If the child is made a ward of the state, as Daniel will be if he is found, the state pays for his medical care.

  89. David Gorski says:

    No, ‘Society’ doesn’t have interests *at all*. ‘Society’ does not think. ‘Society’ does not act. Individuals do all of these things. The belief that ’society’ has attributes that the individuals ostensibly comprising it do not is the first intellectual and moral error leading to a whole host of others. This road has, at its end, a sort of ethical Armageddon where individual liberty and humanity is limited to the moments one can steal from the State’s surveillance apparatus, and the meaning of ‘freedom’ becomes ‘not formally incarcerated’.

    What a load of pseudointellectual libertarian BS, coupled with the slippery slope fallacy! (And, yes, the slippery slope argument is almost always a logical fallacy; it takes a lot of data and justification to make it not so.) Now I know you’re full of it (as if I didn’t before).

    But, hey, we’ve tried your sort of “every person a king” society before. It’s called anarchy, and the results aren’t pretty. Perhaps you’d like to go and live in Somalia and experience it for yourself.

  90. SD says:

    “No, belief in what one says does not negate a finding of intent in a case of ACTUAL fraud. If one has reckless disregard for the truth one can be held liable for the tort of fraud. So, much of CAM is fraud because no matter how much a CAM pratitioner believes what he says, he cannot ignore the facts. If you wish to argue that “science-based” and “facts” are not the same, or that there is no such thing as “facts,” you may do so, but that is not how the law sees it.”

    ‘The truth’ is a slippery thing, particularly in a courtroom. So are ‘facts’. I’ll tell you the same thing I told the other guy: Go watch ‘Rashomon’.

    ‘As the law sees it’, at the present time, naturopathy, chiropracty, and all sorts of other woo are quite legal and non-fraudulent. This is because of political fiat; there are enough practitioners and believers for each to be quite well-protected, thank you. Strictly speaking, we are talking more of “The Law” here – the theoretical, unattainable Perfect Natural Law – than “the law”, which at the present time is a mess, and seen murkily through imperfect human eyes.

    In ‘The Law’, intent matters. If you did not *intend* harm, then you are typically not guilty of anything at all. (This is getting less and less true in civil courts these days, in our age of litigiousness; the idea that “shit happens” is dwindling to a fondly remembered quaint anachronism, sort of like daguerrotype and specie currency.) You *may* be guilty of negligence, if it was reasonably foreseeable that your actions could have led to the damaging result. For an analogy to fraud, if it helps, see libel, specifically the tests for libel and the ‘absence of malice’ doctrine.

    You’re right, a CAM practitioner cannot ignore the facts. Then again, they don’t have to. “In order to attempt to cure your cancer, I will manipulate your chakras. Chakras have never been demonstrated to exist in any anatomical or imaging study. Chakra manipulation has not been demonstrated in any trial to be an effective treatment for cancer or any other disease, although some patients have experienced remission of various cancers while undergoing chakra-manipulation treatment [cite cases]. You may not recover from your cancer while having your chakras manipulated; no treatment can be guaranteed. Have chakras manipulated (yes/no)?”

    Is the above a fraudulent statement? I contend that it is not, because (a) it informs the patient that the treatment may not work, and (b) does not make any claims about the treatment that are not true (“not demonstrated”). These are “the facts” of this treatment, with a bright neon arrow pointed to a sign saying “SUBJECT TO THE RASHOMON EFFECT”. If a CAM practitioner tells the patient this, I contend that he has made all of the statements necessary to avoid a finding of fraudulent conduct. Cde. Gorski and several others here disagree, in that they maintain that CAM is fraudulent in se, because it is not as effective as SBM. I contend that the difference in effectiveness *does not matter*, since most SBM treatments do not reach the level of certainty necessary to declare all other treatments superfluous. Case in point: Broken bones. Nobody argues that a broken bone needs to be in a cast. Treating a broken bone with fresh basil tea and and a prescription to swallow a stick of chalk every eight hours is a bad idea. Why? Because basically every time a bone is set by a competent MD and put in a cast, it will heal without further sequelae. EVERY. TIME. A parent who treated their kid’s broken bone like this could, reasonably, be considered guilty of medical neglect – letting your kid thrash around in pain and potentially cripple himself when there is a *guaranteeable* cure for his particular ailment is something that offends the sense of justice. Making a hard choice between a treatment that “probably” will work and a treatment that “probably” won’t, on the other hand, is a different beast. Either way, you roll the dice. Traditionally, the parent has the right to do the rolling for anything less than a dead certainty.

    To see this, contrast with this statement:

    “In order to attempt to cure your cancer, I will start you on a regimen of ABVD chemotherapy and targeted radiation. In several studies [cite studies], ABVD + radiation has proven superior to placebo and to other treatments in the treatment of this particular cancer. Most patients who complete this treatment have experienced remission of their cancer, with very favorable five-year and ten-year survival rates. However, you may not recover from your cancer while on this treatment; no treatment can be guaranteed. Get nuked and gassed (yes/no)?”

    This is, in a nutshell, an accurate description of the standard treatment for Hodgkin’s lymphoma. The estimates published for this kid’s case put his odds of dying at between 1 in 5 and 1 in 20, with the recommended treatment. At the lower end of that range, that’s equivalent to loading a single cartridge in a five-shot revolver, spinning the cylinder, pointing it at his head, and pulling the trigger. At the upper end of that range, that’s equivalent to loading a single cartridge in one of four five-shot revolvers numbered “1″ through “4″, then rolling a four-sided dice, picking up the revolver whose number is indicated by the dice, and doing the same thing. (I will receive hatred and discontent for likening the Pure Sweet Holiness of Science-Based Medicine to a game of Russian roulette. I will weep tonight on the inside.) Sure, this might be the kid’s best chance to see his 18th birthday, but who gets to say “yes” or “no” to this game? Some random oncologist? Some random judge? Or the parent? What are “okay” reasons for the parent to decline playing this game?

    “roll the dice one more time”
    -SD

  91. Scott says:

    “The estimates published for this kid’s case put his odds of dying at between 1 in 5 and 1 in 20, with the recommended treatment. At the lower end of that range, that’s equivalent to loading a single cartridge in a five-shot revolver, spinning the cylinder, pointing it at his head, and pulling the trigger. At the upper end of that range, that’s equivalent to loading a single cartridge in one of four five-shot revolvers numbered “1″ through “4″, then rolling a four-sided dice, picking up the revolver whose number is indicated by the dice, and doing the same thing.”

    Good grief. That’s the biggest load of BS I’ve seen in quite a long time. What your analogy completely ignores is that his odds of death are very close to 100% without treatment. So if you really want to use a Russian Roulette analogy, the recommended treatment is removing four of the bullets before spinning/pointing/pulling. Declining the recommended treatment is spinning/pointing/pulling with a FULLY LOADED revolver.

    In all honesty, I think you’ve just proven beyond a shadow of a doubt that you’re a troll, as no vaguely rational person could possibly believe such a load of codswallop. And if not, you’re so lost to anything resembling rational thought that it comes out the same.

  92. Karl Withakay says:

    “Because basically every time a bone is set by a competent MD and put in a cast, it will heal without further sequelae. EVERY. TIME.”

    WRONG: NEARLY. EVERY. TIME. Bones set by a competent MD and put in a cast do not heal without further sequelae 100% of the time.

    “The estimates published for this kid’s case put his odds of dying at between 1 in 5 and 1 in 20, with the recommended treatment. At the lower end of that range, that’s equivalent to loading a single cartridge in a five-shot revolver, spinning the cylinder, pointing it at his head, and pulling the trigger.”

    But you can choose to not play Russian Roulette. Daniel’s mother doesn’t have that choice. The options in Daniel’s case are (using your worst case numbers for the sake of argument) either the single cartridge in a 5 shot revolver OR to load 19 five shot revolvers fully, loading a 20th with four cartridges and pick one revolver at random point it at his head and pull the trigger. He’s already in your game, not playing is not a option.

  93. Karl Withakay says:

    Scott’s scenario is probably statistically closer to reality as mine was only 99% certain to result in death.

    Scott’s scenario is nearly guaranteed to result in a bullet in the head, the certainty being less than 100% due to the remote chance of a dud or squib fire.

  94. David Gorski says:
    “Because basically every time a bone is set by a competent MD and put in a cast, it will heal without further sequelae. EVERY. TIME.

    WRONG: NEARLY. EVERY. TIME. Bones set by a competent MD and put in a cast do not heal without further sequelae 100% of the time.

    Actually, for some fractures it’s not even close to “nearly every time.” That claim by SD, above almost all of his others, shows his utter ignorance of medicine and medical science. In fact, bones failing to heal without further sequelae are common enough that there’s even a term for them: Nonunion. Indeed, for some types of common fractures, nonunion rates can be as high as 10% or even more.

    Hey, wait a minute. 10%. That’s getting close to the failure rate of ABVD and radiation for Hodgkin’s disease of the stage Daniel has. So using SD’s own “logic” may I assume that it would be perfectly acceptable to him if a parent were to treat a child’s fracture with ” fresh basil tea and and a prescription to swallow a stick of chalk every eight hours” if the published nonunion rate were around 10% for that type of fracture? I don’t see why not based on his own example. After all, it’s just “rolling the dice.” Thanks for the example, SD!

  95. David Gorski says:

    Making a hard choice between a treatment that “probably” will work and a treatment that “probably” won’t, on the other hand, is a different beast. Either way, you roll the dice. Traditionally, the parent has the right to do the rolling for anything less than a dead certainty.

    That is a misrepresentation of the situation. A more closer representation would be between a treatment that is very likely to work and a treatment that is so incredibly unlikely to work that its chances of success can reasonably be approximated by simply saying it won’t work.

  96. Prometheus says:

    This appears to be another time when SD is going to castigate everyone for their poor ethical reasoning without telling us what he thinks the “ethical” choice is.

    In the case of Daniel Hauser, he has apparently already received one or more doses of chemotherapy for his Hodgkins lymphoma and had the tumor shrink. From what I’ve read about Hodgkins lymphoma, this is a good sign, suggesting that his lymphoma will be curable.

    SD, on the other hand, seems to be saying that unless and until the cure rate is 100%, there is no possible justification for forcing a minor to have this treatment.

    Here’s a tip, SD – nothing in real life has a 100% guarantee.

    So, although the cure rate for Hodgkins lymphoma (in all children) is hovering around the 90% mark, SD thinks this isn’t enough to justify saying that it’s the proper choice.

    SD also thinks that parents have an absolute right to decide what will happen to their children, excepting human sacrifice (Isaac would be so relieved).

    Here’s my ethical “read” on this – one that SD is sure to say is “flawed” in some way.

    [1] Children (variously defined as younger than 14 – 18 years, depending on the state and situation, but clearly encompassing 13 years of age) are pretty universally held – by almost every government on the planet – to be incapable of giving legal consent for anything, including medical procedures. This is because they are not felt to have the maturity, wisdom, experience, whatever to make those decisions.

    [2] Parents are generally felt to hold their children’s best interests as dear or dearer than their own and are expected to make decisions that are in their child’s best interest.

    As a result, almost every government has given parents dominion over their children, vesting in them the right (and responsibility) to make decisions for their children – unless the parent (or parents) have demonstrated that they are not making decisions in the best interest of the child.

    As with everything, the decision of what is in the best interest of the child are subject to the norms and traditions of the overall society. These norms and traditions may be at odds with the norms and traditions of some of the members of society, which is why we in the US have conflicts with people who want to treat their children’s illnesses with prayer when there are effective medical treatments.

    [3] The government, as the active agent for society, sets limits on the decisions parents can make for their children as a means to ensure that the child’s welfare is not jeopardized. These limits change with the norms of society – some societies feel that it is acceptable for a father to kill his daughter for dating someone he disapproves of. Other societies don’t accept that.

    In most Western nations, it is currently acceptable to allow a child to become dangerously obese, but it is not acceptable to substitute prayer or herbal remedies for antibiotics, insulin or – in Daniel Hauser’s case – chemotherapy with a very high success rate.

    It appears that the current societal norm is that parents can endanger their child’s life only if the risk of death is not imminent or absolute. Thus, we have laws about child seats, bicycle helmets and medical care, but not about diet or video games.

    The ethical basis for this “interference” in parental “rights” is that of advocating for the child. It is not ethical to leave a child to fend for themselves, so society – through its agents in government – is responsible for ensuring that somebody is looking after the best interests of each child. If the parents are not properly advocating for their child(ren) – “properly” being subject to debate and definition – the government gives the job to someone else.

    To be sure, “government” doesn’t always do a good job – sometimes they leave children with parents who abuse or kill them and sometimes they take children out of loving homes and put them in abusive (or homicidal) foster care. These failures of implementation do not invalidate the ethical precept that children need to have an adult looking after their best interests.

    By virtue of being at neither extreme – neither absolute parental rights ala Abraham and Isaac nor state-run child rearing – the dividing line between what are acceptable choices for parents to make and what are unacceptable is inherently arbitrary.

    Some people (SD, perhaps) may feel that childhood obesity is a valid reason to revoke parental rights; society currently does not. Other people may think that parents have the right to choose medical options that offer far less chance of survival than the standard of care; society currently does not.

    These are – as I mentioned above – inherently arbitrary divisions. As a result, the ultimate decision often has to be made by a judge. The fact that judges sometimes make unpopular decisions (or decisions that , in retrospect, were incorrect) is, again, not a flaw in the ethical precepts but in the implementation of those precepts.

    I also see that there is an ethical reason to err in favor of treatment rather than non-treatment (or established, well-supported treatment rather than unsupported fanciful “alternative” treatments) when deciding what to do with a child. There are exceptions and I find it reassuring that courts have frequently decided that children do not have to undergo treatments that are painful or uncomfortable if they have a low probability of success. This shows that the system works.

    SD reminds me a lot of the student “anarchists” we have on campus. They are forever going on about “freedom” without giving much thought to responsibility. They want to be allowed to do what they want, but expect everybody else to behave in a “proper” and “legal” manner.

    Unfortunately for SD and others of his ilk, life is rarely black and white. We do not tolerate either total parental authority over the lives of their children or total state control of child rearing. When SD (or others) claim that we have (or should have) either one, they are showing their lack of comprehension.

    SD seems very concerned about the “rights” of parents. As a parent, I’ve found that I have far more responsibilities than rights. One of these responsibilities is to make the best possible decisions for my children. I don’t always reach that perfect goal, but I do try my best. Ultimately, society has a responsibility to make sure that children are properly cared for because they are incapable to taking care of themselves.

    I don’t doubt that Daniel Hauser’s parents think they are doing their best and have his best interests at heart, but they have either been fooled by this pseudo-Native American shaman or are dealing with their own personal demons. Their decisions may feel right to them, but they don’t wash with the rest of society.

    Again, if it were a question of letting Daniel get fat or have a tattoo, “society” might not agree but has elected to not interfere with parental “rights” at this point.

    At any rate, their decision to refuse chemotherapy for Daniel’s Hodgkins lymphoma was wrong by current scientific and ethical standards. It’s the wrong choice for medical therapy and letting a child face an 90+% chance of death (mortality of untreated Hodgkins lymphoma) rather than a 10% chance of death (mortality of treated Hodgkins lymphoma) is the wrong ethical decision, as well.

    As a result, the government stepped in and corrected their decision. I note that his parents haven’t had their parental “rights” completely revoked (which can be done) – just that one decision. However, if they continue to make bad decisions, further steps can – and should – be taken.

    I would hope that if I ever reach the point where my decisions for my children are that bad, somebody steps in to protect them from my bad judgment.

    Prometheus

  97. SD says:

    Govorit Cde. Gorski:

    “So you’re saying that a 90% chance of a cure isn’t good enough a “guarantee” to tell parents that their child’s right to life trumps their right to sacrifice their child by pursuing a treatment that has about as close to a 0% chance of success as there is?”

    Okay, I’m tired of hearing this 90% number and this 0% number.

    The cited number in the article for his initial evaluation of five-year remission is 80-95%, had he followed through with the treatment. Prudence and common decency dictate that his chances be offered to him at the lower number, 80%. I don’t know where you get 90% from (probably a very dark and smelly cavern with which your head is intimately acquainted). Therefore, I’m going to demand *actual* numbers. What are the latest five-year remission statistics for male children in his age group with Stage 2B Hodgkin’s lymphoma treated with ABVD and radiation? Since you’re spouting off about how this is basically murder, I demand proof. This is something we do in science, called “calling for the numbers to back up the assertions”. Bonus points if you can cough up ten-year remission statistics for the same cohort. (Let’s find out what his real chances are of being old enough to drink.)

    Then, I’m going to ask for the most modern five-year mortality rate for untreated Stage 2B Hodgkin’s lymphoma in his age group, and – if this number exists – the five-year mortality rate for a cohort which undergoes a single round of chemo and then refuses further treatment. Since he’s basically planning on treating himself with placebo (per you), then the control group for other studies (assuming they weren’t cut short and given treatment) will suffice for the first number. Now, being an expert in this field and a scientist and all, I expect you *have* these numbers, or know where to readily get them, and are not simply blowing bullshit to galvanize your consensus-cluster with the tragic case of L’il Danny. Bonus points for statistics which have been gathered in the last ten years.

    Produce numbers and cites, please. If the cites are not freely available, produce excerpts (N and p will suffice for the moment), because I’m not paying to see the support for your position. Since you’re all a-twitter over the numbers, then let’s get some *real* numbers to bandy about. If you cannot produce these numbers, or a really good reason why they don’t exist (ethical considerations may preclude the statistics for the untreated, but I’d be amazed if there weren’t *something* available), then I declare that you are blowing bullshit; that this is your *personal* and *anecdotal* opinion, which is of no scientific validity; and that you are using your resume to bolster a fundamentally political claim. These are all acceptable, of course, but I will demand forthrightness about them.

    “There is virtually no treatment that is 100% effective in medicine. So what “guaranteed” do you require? What percent effectiveness is “effective enough”? 90%? Obviously not enough for you. 95%? 99%? Give us a number here.”

    I dunno, what’s the incidence of murder in the population? A treatment with a failure rate of the same order of magnitude as one’s probability of being murdered sounds about right for the level of probability at which it becomes reasonable to invoke the irresistible power of the State to compel obedience.

    Here’s an alternate criterion: At what level of probability would you, personally, be comfortable guaranteeing the outcome of the treatment, assuming that the diagnosis were correct?

    “Clearly, you do think that there are virtually no limits, that parents can choose virtually anything to their child, no matter how harmful, your obfuscations and anarchist justifications notwithstanding. It’s all a smokescreen for your apparent real argument that parents can do virtually anything with their child that they please, harm be damned, medical neglect be damned.”

    Yes, as a matter of fact, parents *can* do whatever they please with their child, up to serious “real” crimes (assault, rape, murder, &c) which are ancient in origin and easily-understandable. The alternative is that the State can do whatever *it* pleases with the children. Pick one. I’d rather suffer the occasional fool to snuff his own spawn than to encourage the formation of an apparatus to do it en masse. At least it’s generally easier to stop a fool than it is to stop a government agency, and the fool has a much smaller scope of action.

    You seem to operate under this ‘zero tolerance’ delusion that is, frankly, appalling. I don’t know how you think you *get* to a state of ‘zero tolerance’, boyo, but let me tell you, it ain’t pretty. Making that omelette requires the breaking of quite a few eggs, Comrade Gorski, and it’s *not* worth it in the long run, not even for the sake of a cancer-stricken child.

    “As for the cost, there’s the federal SCHIP program and Medicaid, and most states have various forms of insurance that cover the cost of cancer care for most uninsured children. If the child is insured, care is covered. If the child is made a ward of the state, as Daniel will be if he is found, the state pays for his medical care.”

    A clue about that ‘ward-of-the-state’ bit: the state will pay for his medical care, and then turn around and nail the family for it if they can collect *anything* from them. Now, I don’t know about you, but it’s bad enough that the kid is being treated against his will; forcing his family to pay for an unwanted treatment (nearly guaranteed in this instance, if they have anything at all) simply adds insult to injury.

    “oh, it’s on!”
    -SD

  98. SD says:

    Govorit Cde. Gorski:

    “What a load of pseudointellectual libertarian BS, coupled with the slippery slope fallacy! (And, yes, the slippery slope argument is almost always a logical fallacy; it takes a lot of data and justification to make it not so.)”

    Yes, those pesky “historical facts” are all so unconvincing. Not to mention that there’s too many of them.

    Go count skulls in Cambodia, Comrade. When you hit a million, if you can come back and tell me with a straight face that there is no such thing as a “slippery slope”, I’ll do my best to believe you.

    “But, hey, we’ve tried your sort of “every person a king” society before. It’s called anarchy, and the results aren’t pretty. Perhaps you’d like to go and live in Somalia and experience it for yourself.”

    When precisely have ‘we’ tried ‘anarchy’, as you envision it?

    Somalia’s a pretty decent place if you pay attention to the Xeer and don’t piss anybody off by doing something stupid like trying to invade them, or so I’m told. That piracy problem is a response to the fact that foreign trawlers are wiping out the fish stocks along the coast; in Somalia, when life hands you lemons (depleted fish stocks, lots of foreign boats in the coastal waters and ostensible EEZ, and a large number of AK-47s and RPGs), you make lemonade (ransom demands). Pretty straightforward, really, and looked at baldly, nothing different than any *other* country does in its coastal waters when people are breaking the law.

    “barbie sez: anarchy is skeery!”
    -SD

  99. SD says:

    Govorit Cde. Gorski:

    “Actually, for some fractures it’s not even close to “nearly every time.””

    ‘some fractures’

    Which ones?

    “That claim by SD, above almost all of his others, shows his utter ignorance of medicine and medical science. In fact, bones failing to heal without further sequelae are common enough that there’s even a term for them: Nonunion. Indeed, for some types of common fractures, nonunion rates can be as high as 10% or even more.”

    ‘some types’

    Which ones? I always love to learn things.

    Uncontrollable Urge To Be An Asshole: Well, damn. And here I was trying to compliment you guys on getting one thing right. But if you can’t even set a bone correctly more than nine times out of ten – something people have been doing since the Pyramids were still on the drawing board – what the hell makes you think anybody’s going to trust you with anything more complicated, like chemotherapy?

    Serious: I suspect the success rates for the more common types of fracture are real close to 100%, Comrade, particularly for kids, the age group under discussion. I can’t remember the last time I heard of a kid with a broken bone failing to heal it, unless there was something substantially nastier wrong too, like osteosarcoma. Perhaps you’d be good enough to provide some statistics from GosMed, Comrade. If the numbers differ substantially from unity, I’d like to know for what, just because I never ran across a fact I didn’t like. (I know, I know, ‘numbers’ are beneath you. Do try anyway.)

    “Hey, wait a minute. 10%. That’s getting close to the failure rate of ABVD and radiation for Hodgkin’s disease of the stage Daniel has. So using SD’s own “logic” may I assume that it would be perfectly acceptable to him if a parent were to treat a child’s fracture with ” fresh basil tea and and a prescription to swallow a stick of chalk every eight hours” if the published nonunion rate were around 10% for that type of fracture? I don’t see why not based on his own example. After all, it’s just “rolling the dice.” Thanks for the example, SD!”

    Shit, if 90% is the best y’all can do, they might as *well* try to set the bone at home; it’d be cheaper. It isn’t like you can’t buy plaster of paris and rolled gauze at the local supermarket, after all. Much below 90%, and that basil-tea-and-chalk idea is starting to look pretty good.

    “break a leg!”
    -SD

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