Bioethics Cancer Complementary and alternative medicine Medicine Quackery

Another young life claimed by a misguided faith in alternative medicine

A number of readers have mailed me links to this story, and, yes, it is right up my alley. In reading it, I fear that it’s a vision of the future for two young cancer patients who are very unlikely to survive their cancers because their parents eschewed evidence-based medicine in favor of woo, Starchild Abraham Cherrix and Katie Wernecke, both of whom had relapsed when last I discussed them. The case is one with which I had not been familiar, namely that of Noah Maxin, of Canton, OH:

CANTON No one in the courtroom nearly five years ago wanted this day to come. Not Noah Maxin’s parents. Not the doctors who said Greg and Theresa Maxin were gambling with their son’s life by stopping chemotherapy.

Eleven-year-old Noah Maxin’s funeral is today after losing his struggle with leukemia, a fight that included the court battle his parents won for the right to decide how to treat their son’s disease.

In 2002, doctors diagnosed Noah with acute lymphoblastic leukemia. Abnormal white blood cells were gathering in his bone marrow, crowding out red blood cells, platelets and healthy white cells and leaving him at risk of infection, anemia and bleeding.

Noah began a treatment plan that included a blood transfusion, drugs and other measures. The cancer went into remission.

Noah’s parents stopped the chemotherapy three months into a 3-1⁄2-year plan favored by doctors at Akron Children’s Hospital. The Maxins said they were concerned about the long-term effects of chemotherapy and wanted to treat Noah with a holistic approach that emphasized improved diet and strengthening the body’s immune system. Another doctor took over his care.

Why chemotherapy regimens need to continue after the tumor has apparently gone into remission is always one of the hardest things to explain to patients or parents. There is a reason why such regimens and treatment plans are so long; it’s because relapse is much more common with shorter plans. Some parents, however, don’t see or understand that. Seeing only that the tumor has apparently disappeared in response to the first round of chemotherapy and thinking only of the long-term affects of chemotherapy and radiation, they may be quite resistant to further therapy. It’s a phenomenon not unlike that of prematurely stopping antibiotics for an infection, just because there was clinical improvement. Not all the bacteria are gone, and the ones that remain tend to be more resistant. Similarly, in the case of a remission like Noah’s, not all the tumor cells are gone, and the ones that are left tend to be resistant. The prolonged chemotherapy and other treatments are designed to completely eradicate every last tumor cell and provide that maximal chance of survival, as was testified at the original trial in which the State of Ohio tried to intervene to save Noah’s life:

In the first case of its kind, attorneys with the Stark County Department of Job & Family Services took the Maxins to court, trying to force them to continue the chemotherapy.

A doctor from Akron Children’s testified that Noah would have a much harder time beating the disease if it returned, with the survival rate dropping from 85 percent to about 40 percent.

Yes, it can be argued that Noah might well have died anyway, even if he had continued with conventional therapy. That is certainly true. However, by taking him off that regimen and choosing ineffective woo instead, his parents dramatically decreased Noah’s chances. Sadly, the law could not protect him:

Stark County Family Court Judge David Stucki opted to throw out the complaint, saying the Maxins had the right to choose the treatment they thought best for their son.

The judge said his decision was based on the law and not the medical merits.

Of course, a judge can only decide based on the law, and apparently the law in Ohio allowed Noah’s parents to choose woo. It would have helped, however, if Stucki had understood exactly what the choice was:

In his seven-page opinion, Stucki wrote: “The court declines to venture a medical opinion on the efficacy of the chosen treatment. These are not parents who refused medical treatment or who elected to take Noah to a witch doctor or shaman or (chose) some other method of treatment which is not recognized by the medical community as legitimate.”

I don’t know exactly what sort of woo Noah’s parents chose for him, but I would argue that using naturopathy against cancer is not all that different in efficacy from the treatments that a shaman or witch doctor would provide. In any case, even though Noah was off his chemotherapy for only four months, his tumor returned. By the time his parents turned back to conventional medicine, it was apparently too late.

One aspect of this story that is rather characteristic and instructive is the number of comments after it castigating the newspaper for even publishing this story, where they argue that it only serves to cause the parents pain to remind them of this and the standard rants that parents have the “right” to choose “unconventional therapies” (i.e., quackery) even for a six year old (which is how old Noah was at the time of his diagnosis). Many of them went like this idiotic comment by Bette Iden:

No one has the right to judge these parents except the God they believe in. It was their right as his parents to deceide what, how and when he would be treated. How dare anyone second guess these parents! Nor should the courts be involved. BTW, kids do die of leukemia even with chemo! My belief is when God calls, you die, no matter what is done by man.

By such “logic,” I could ask: Why bother trying to treat a child with cancer at all? After all, God obviously wanted that child to die, or else He wouldn’t have given him cancer. Using chemotherapy is thus thwarting His will, isn’t it? Such sentiments drive me crazy.

Another common sentiment in the comments thread is heard from Pat Taylor:

SHAME on Shane Hoover for writing the article and SHAME on The Canton Repository for allowing this story to be reported at this time. Where is your hearts????? How could anyone call Theresa and Greg’s home on the day of their son’s funeral and ask for a comment. I have lost so much respect for your paper. My heart goes out to this family. Until you have walked in the path of ones life you do not know how you would handle a situation. Maybe we should go back to the wisdom of the Mother of Bambi – IF YOU DON’T HAVE ANYTHING NICE TO SAY ABOUT SOMEONE -DON’T SAY SAYTHING AT ALL!!!!! JIM QUINN -Who are you to make judgement on this grieving family- YOU ARE NOT GOD- you have no right to say they made a terrible decision. SHAME ON YOU TOO!! I know Noah Maxin is in a better place now and I pray his family find some peace in their hearts knowing their precious child is not suffering anymore. May God bless his family and friends.

Although I feel great sympathy for any parents who have to bury a child lost to cancer, I find the religious posturings and justifications for the parents’ decision and all the “Noah is in a better place” tripe highly offensive. Also, although it does make me queasy that the reporter tried apparently tried to talk to the parents on the day of the funeral, I understand that journalism requires that all parties in a story be contacted for interviews. I also have to disagree strenuously with the sentiment that publishing this story serves no purpose. In actuality, publishing this story serves a very important purpose. It shows that there are consequences for choosing woo over evidence-based medicine. In this case, very likely the consequence was the death of an eminently savable child. If the message sinks in to the brains of only one set of woo-loving parents, the article will have done a great service. Sadly, only one commenter, John Quinn (the commenter so castigated by Pat Taylor above), seems to understand this, and this was his comment that provoked such a violent reaction:

Reading the comments on this story shows that we need to stress an important fact. Without conventional medical care, leukemia is always fatal. Always. When Judge Stucki allowed the parents to skip chemotherapy, he was sentencing this child to death. Nobody wants the parents to suffer more than they already have, but it’s important to point out that their decision to decline medical care in favor of quackery led to the death of a totally innocent child. This boy deserved better from the courts and the family services. Hopefully, this tragedy will prevent the officials involved from making the same mistake again.

Indeed. There was a small chance that Noah would have survived after only brief treatment (which is all he got before his parents turned to quackery), but it was far more likely that he would relapse, and, sadly, that’s what happened.

By Orac

Orac is the nom de blog of a humble surgeon/scientist who has an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his copious verbal meanderings, but just barely small enough to admit to himself that few probably will. That surgeon is otherwise known as David Gorski.

That this particular surgeon has chosen his nom de blog based on a rather cranky and arrogant computer shaped like a clear box of blinking lights that he originally encountered when he became a fan of a 35 year old British SF television show whose special effects were renowned for their BBC/Doctor Who-style low budget look, but whose stories nonetheless resulted in some of the best, most innovative science fiction ever televised, should tell you nearly all that you need to know about Orac. (That, and the length of the preceding sentence.)

DISCLAIMER:: The various written meanderings here are the opinions of Orac and Orac alone, written on his own time. They should never be construed as representing the opinions of any other person or entity, especially Orac's cancer center, department of surgery, medical school, or university. Also note that Orac is nonpartisan; he is more than willing to criticize the statements of anyone, regardless of of political leanings, if that anyone advocates pseudoscience or quackery. Finally, medical commentary is not to be construed in any way as medical advice.

To contact Orac: [email protected]

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