Yesterday, I wrote about Daniel Hauser, a 13-year-old boy with Hodgkin’s lymphoma who, with the support of his parents, has refused conventional therapy for his cancer, which would normally consist of chemotherapy and radiation. Given his stage and type of tumor, he could normally expect at least an 85% chance of surviving and perhaps even greater than 90%, wherea without therapy he is certain to die of his disease, barring a rare spontaneous remission. The reason given by his Daniel and his mother Colleen is that they belong to a highly dubious-sounding American Indian religion called Nemenhah, which is led by Philip “Cloudpiler” Landis, a white man who claims to be a naturopath and Native American “healer” peddling “cures” for AIDS and cancer. I originally described this as yet another case of irrational religious beliefs that reject science deluding another unfortunate child. Indeed, recently I learned that Chief Cloudpiler was also involved in the case of Chad Jessop, a 17-year-old who refused conventional treatment for melanoma. Indeed, he even commented on a blog I referenced about the case.
However, readers referred me to a story that makes me wonder if religion played such a huge role in Daniel Hauser’s refusal of chemotherapy after all. Actually, as I wrote yesterday’s post, I had contemplated that this might be the case as well. 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 chemotherapy that suddenly he started refusing to undergo any more chemotherapy. 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.
I would argue that such is true for the vast majority of 13-year-olds.
Then consider this. I have discussed now three children who have rejected chemotherapy or whose parents rejected chemotherapy for cancer. Daniel Hauser is only the most recent of them. Two of them may be familiar, and I alluded to them before: Katie Wernecke and Abraham Cherrix, the latter of whom was a frequent topic of this blog. Both of them had lymphoma. But not just any lymphoma. Hodgkin’s lymphoma. While Katie Wernecke’s parents refused radiation after a course of chemotherapy, Abraham Cherrix is much more like Daniel in that he refused further chemotherapy after having a rough time with his initial course. What all of these children (and parents) have in common is that they agreed to conventional treatment initially and then balked when they saw how difficult it was. And, make no mistake, 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 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 most people. Many operations are arguably as painful and difficult to recover from as chemotherapy; yet patients rarely refuse surgery. Comparatively speaking, they often refuse chemotherapy, at least in my experience. Indeed, remember 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, they 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), and chemotherapy is given in order to decrease the risk of recurrence. Let me repeat that: 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 occurring. The same is true of radiation. Most people don’t understand that; so the testimonials for the woo 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 rejecting 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 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 totally on board 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. 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 symptoms due to the cancer and the prolongation 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.
Religious quackery–or even non-religious quackery–doesn’t acknowledge that tradeoff. It promises 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.
It’s all very easy to rail against religious ignorance as the cause of this tragic story, as many skeptics are doing (sometimes very heartlessly indeed) and certainly that was my first inclination. Often it’s justified, as in the case of Madeline Neuman, the 11-year-old girl whose parents allowed her to die from diabetic ketoacidosis rather than take her to a doctor because they believed that prayer would cure her. However, in this case, I’ve come to conclude that it’s all very knee-jerk and simplistic. Rather than being the driving cause of an irrational decision to reject curative chemotherapy in favor of quackery, in the case of Danny Hauser, religion appears to be more of an excuse to justify and provide a legal defense for a fear-driven decision in parents predisposed to “alternative” medicine. I’m again left wondering whether, if there had been better support mechanisms for families such as the Hauser family, this whole kerfuffle might have been avoided and Danny would be on his third course of curative chemotherapy right now. I realize that not everyone is reachable, but, given that Daniel’s refusal of chemotherapy appears to be far less driven by religion than I had first thought, perhaps he and his mother would have been more reachable than I had thought.
The legal decision is coming any day now (maybe even later today), and I fear the legal strategy to paint this issue as one of religious freedom rather than of child neglect and endangerment may work.
- Another child sacrificing himself on the altar of irrational belief
- Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?
- Judge John Rodenberg gives chemotherapy refusenik Daniel Hauser a chance to live
- Mike Adams brings home the crazy over the Daniel Hauser case
- The case of chemotherapy refusenik Daniel Hauser: I was afraid of this
- Chemotherapy versus death from cancer
- Chemotherapy refusenik Daniel Hauser: On the way to Mexico with his mother?
- An astoundingly inaccurate headline about the Daniel Hauser case
- Good news for Daniel Hauser!
- Daniel Hauser, fundraising, and “health freedom”