Another child sacrificing himself on the altar of irrational belief

Regular readers here know that I really hate to see stories like the one I’m about to discuss, specifically that of 13-year-old Daniel Hauser, a boy with Hodgkin’s lymphoma who is refusing chemotherapy based on religion and his preference for “alternative” therapy, whose parents are also supporting his decision.

Since I’m a bit behind on this story, its having percolated through the blogosphere for the last three or four days, let me start with a bit of context. If there is one theme that I’ve emphasized time and time again here, it’s science- and evidence-based medicine. That means treatments that have been scientifically shown to be efficacious and to have an acceptable risk-benefit ratio. If there’s one other point that I’ve made time and time again, it’s that competent adults have the right to choose whatever treatment they wish–or to refuse treatment altogether. That is not to say that quacks have any sort of “right” to provide them with quack treatments, especially since providing such treatments inherently involves making claims for them that are not supportable by science, but, if a competent adult wants to refuse treatment and is aware of the consequences, then I will call him a fool if what he has is a potentially very curable disease like Hodgkin’s disease, but it’s his call.

The same is not true for children, and Daniel Hauser is a child, and he is choosing to let himself die, although that’s not how he would characterize his choice:

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.

Now they are going to court to defend their decision.

He and his parents are justifying this decision by–what else?–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’m afraid.

As mentioned before, 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 his tumor is at, 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 need 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 a death sentence.

Now, no one’s claiming that chemotherapy is a walk in the park, and it wasn’t for Daniel, either. He did one round, and this was result:

But after one round of chemotherapy, Daniel became so sick that his parents refused to send him for a second treatment. They switched him to an alternative regime of complementary medicine, including dietary changes and “ionized water,” Johnson said.

In testimony, Daniel’s mother reported:

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 on my part. First, I guarantee Daniel that dietary changes and “ionized water” (which is, by the way, the purest quackery and has no value against cancer whatsoever) will not make him feel as sick as the chemotherapy did. Ditto the “high pH water,” which sounds very similar to Robert O. Young’s quackery. Of course, over time the lymphoma will do quite a good job of that until Daniel eventually dies. As I’ve pointed out before when another young teen who chose “natural” therapy over effective chemotherapy pointed out (Abraham Cherrix), death from lymphoma is no picnic. Cherrix claimed that, by rejecting chemotherapy, if he died he would at least “die healthy.” Refusing chemotherapy and radiation only forestalls the suffering, the main difference being that at least the chemotherapy has a high chance of eliminating the cancer. Once a refusenik becomes ill from advanced cancer, there is no turning back and it is highly unlikely that his life will be saved even if he changes his mind. Indeed, the frustrating part about cases like this is that time is survival. While this drags out for weeks and months, the lymphoma keeps growing, which is apparently what it has done since Daniel ceased his chemotherapy.

Cases like Daniel’s are usually presented as issues of “health freedom,” parental rights, or the right of a minor to control his or her body. In Abraham Cherrix’s case, it became all three, mainly because he was 15 years old when he and his parents refused further chemotherapy and the case stretched out to past his 18th birthday, when he could do anything he wished. In the interim, he and his parents had come to a compromise with the judge in the case and had agreed to have him treated by a radiation oncologist named Dr. R. Arnold Smith, who combines radiation therapy (which took care of localized tumor deposits in a Whac-A-Mole fashion) with woo. 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. Another case I’ve discussed, namely Katie Wernecke, was 13 when she was diagnosed, and clearly 13 is too young. The last I heard about her, she was 15 and had relapsed widely, having written a very sad story. (I do not know if she is still alive and would be very grateful for any updates if anyone is aware of them.) Katie’s case was primarily couched as a battle against parents by overweening state child protective services and a suppression of “alternative” therapies like the high dose vitamin C her parents subjected her to.

But what to do when a case is presented as a freedom of religion issue? I’ve discussed such issues here before, although rarely for cancer patients. For instance, I’ve discussed the issue of the child who relied on prayer instead of medicine for their daughter’s type I diabetes, leading her to die of untreated ketoacidosis. In this case, Daniel is claiming to be a medicine man and church elder in the Nemenhah, an American Indian religious organization that his parents joined 18 years ago. In general, 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 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 metasticize. 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.”

No medicine, not scientific medicine and certainly not “traditional” medicine can guarantee a “100% survival rate.” Indeed, if there’s any percentage survival rate that traditional medicine can guarantee for Hodgkin’s lymphoma, it’s much closer to 0% than it is to 100%. Yet, based on religion, this family labors under the delusion that magic water (which, let’s face it, is what they’re offering) along with supplements will cure Daniel. And they are going to be given far more deference in court than that delusion warrants. It’s really no different than various Christian religious sects claiming that prayer will cure their child, but, because of the undue deference we as a society give to irrational claims made by religion, deference we would never give if the reasons for the claims weren’t based in religion, religious “alternative” medicine such as what Daniel is choosing is taken seriously, as though it weren’t totally irrational and not based in science.

Unfortunately, as was the case with both Katie Wernecke and Abraham Cherrix, even if the court rules to save Daniel’s life, the particulars get very, very messy. Here’s why:

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 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 woo 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 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, he would in essence need to be imprisoned for therapy. Then there’s the issue of radiation. Radiation therapy requires the cooperation of the patient, who must lie still on the table and do so every day for 30-40 days, depending on the radiation therapy regimen. If Daniel won’t cooperate for radiation, he will risk having the radiation beam hit places that it’s not aimed at; i.e., miss the tumor and hit normal tissue. Sure, he could be sedated for each session, but there’s nothing good about sedating a child five days a week for six weeks or so. It’s not just bad for the child, either. Imagine the hit the moral at the hospital would take, with staff having to view such a spectacle day after day. And you can bet that Colleen Hauser would make sure that the press knew every sordid detail. It 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, the choices before the judge boil down to:

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

I hope for #1, but if push came to shove, I might reluctantly accept option #2 if it would save the life of a child. Thirteen-year-olds are not generally competent to make such a decision for themselves, and parents do not have the right to let their children die in the name of their religious beliefs. But let no one be under any illusion just how horrible option #2 would be. Let those who blithely and ignorantly pontificate that the court should force Daniel to undergo treatment understand just what that involves. It’s not at all pretty and it may harm Daniel. I say I would probably reluctantly accept such an unpleasant option in order to save Daniel’s life as the lesser of evils, but I understand what that choice entails, and most likely the oncologists treating Daniel have made the judge aware of what that choice entails.

The real culprit, of course, is a religion that rejects science and its fruits in favor of faith-based quackery, as is the indoctrination into that religion that has this boy so completely convinced that quackery will save him. Let me be very clear about this. However, scientific medicine is not blameless, either. I can only wonder what might have happened if there had been better support mechanisms to prepare Daniel and his parents for the unpleasant side effects of chemotherapy, to explain to them better just why he needed to put up with feeling so sick now in order to live to adulthood and hopefully old age, and to see them through the process. True, it may have made no difference at all. After all, Daniel’s mother was clearly doctor shopping, going for multiple medical opinions, and becoming obviously unhappy when all of the opinions were exactly same. Still, though. I wonder.

Orac’s commentary

  1. Another child sacrificing himself on the altar of irrational belief
  2. Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?
  3. Judge John Rodenberg gives chemotherapy refusenik Daniel Hauser a chance to live
  4. Mike Adams brings home the crazy over the Daniel Hauser case
  5. The case of chemotherapy refusenik Daniel Hauser: I was afraid of this
  6. Chemotherapy versus death from cancer
  7. Chemotherapy refusenik Daniel Hauser: On the way to Mexico with his mother?
  8. An astoundingly inaccurate headline about the Daniel Hauser case
  9. Good news for Daniel Hauser!
  10. Daniel Hauser, fundraising, and “health freedom”