Shares

One of the more depressing topics that I regularly write about on this blog includes of analyses of news stories of children with cancer whose parents decided to stop science-based treatment (usually the chemotherapy) and use quackery instead. There are, of course, variations on this theme, but these stories take form that generally resembles this outline: A child is diagnosed with a highly treatable cancer with an excellent cure rate. Standard science-based treatment is begun, but the child suffers severe side effects from the chemotherapy. After an incomplete course of chemotherapy, the parents, alarmed at their child’s suffering, start balking at further chemotherapy, either because the child refuses further treatment or because they do. At some point in this process the parents become aware of the claims of practitioners of this or that alternative medicine, who tell them that their child’s cancer can be cured without toxic chemotherapy, and, wooed by the siren song of a promise of a cure without suffering, the parents choose that instead. At this point, physicians, alarmed at the parents’ choice, call in their state’s child protective services team, and a court battle ensues. Sometimes the court battle results in an order that the child complete conventional therapy, as it did with, for example, Daniel Hauser or Cassandra Callender. Sometimes it ends with a compromise in which the child and/or parents can choose an unconventional practitioner, as in the case of Abraham Cherrix. All too often the courts utterly fail to protect children with cancer, as the Canadian courts did in the cases of Makayla Sault and JJ. Not infrequently, if the court rules against the parents, the parents flee with their child to avoid treatment, as happened with Daniel Hauser, Abraham Cherrix, and Sarah Hershberger. Usually, they ultimately come back.

However they turn out, over the years of looking into them I’ve found that these stories tend to bear a depressing similarity and predictability. For example, if the child does well, it is always attributed to the alternative treatment, even when the child received a significant amount of conventional therapy. This attribution derives from a fundamental misunderstanding of how the treatment of cancer works in that the problem with incomplete cancer treatment is not that it can’t cure the cancer but that it has less of a chance of doing so. As I’ve explained many times, the reason that treatment regimens for many pediatric cancers involve two years’ worth of chemotherapy is that over time pediatric oncologists learned the hard way that, although the first cycle of chemotherapy (usually called induction chemotherapy) can lead to remission, without the additional cycles the chances of recurrence are very high—unacceptably so. Consequently, children who stop chemotherapy early can be in remission; they’ve just been put at a high risk of recurrence.



The medical neglect of an Amish girl from Ohio

This brings us to the case of Sarah Hershberger, mentioned above, who has been in the news again lately described as being “cancer-free.” Before I address this new development, a brief recap of her case is in order. Hershberger is a 10-year-old Amish girl living in Medina County, Ohio, who was diagnosed in 2013 with T-cell lymphoblastic lymphoma, an aggressive form of lymphoma. She underwent chemotherapy for a few weeks under the care of pediatric oncologists at Akron Children’s Hospital (ACH), but then decided she didn’t want it anymore because of the side effects. Her parents, convinced that the chemotherapy was killing Sarah, instead of insisting that she undergo potentially curative therapy, which her doctors estimated to have an 85% chance of eliminating her cancer, refused to let her undergo any further therapy. Their refusal led ACH to sue to obtain medical guardianship of the girl in order to make sure that she would undergo curative chemotherapy. The first ruling in the case in a Medina County court was for the parents. Then on appeal the 9th District Ohio Court of Appeals ordered Medina County Judge John Lohn to take another look at the case, ruling that he had failed to weigh adequately which course would best serve her interests — the decision of her parents to withhold treatment (at her request) or to appoint a limited guardian to make medical decisions, as proposed by Akron Children’s Hospital. Not surprisingly, Judge Lohn reiterated his previous ruling, finding that appointment of a guardian would interfere “with Sarah’s need and desire to be cared for by her loving parents” and stating that “the guardianship will not promote Sarah’s interests.” Ultimately, Judge Lohn’s decision was reversed on appeal to the 9th District Ohio Court of Appeals. Ultimately, a nurse named Maria Schimer was appointed Sarah’s medical guardian, who weathered an incredible amount of abuse for her willingness to step up and take this role.

So for, so good, right?

Well, no, as I mentioned before, the Hershbergers fled. It’s unclear where, because at the time it wasn’t clear whether they had gone to Mexico or were hiding out in the Amish community in Medina County, where law enforcement officials were not exactly enthusiastic about seriously searching for her. According to David Michael, she was in Central America receiving treatments that included high dose vitamin C and B17 (the latter a.k.a. as Laetrile), oxygen therapy, detoxification methods, and IV chelation therapy, as well as a special diet.

It didn’t take long for a Libertarian “health freedom”-advocating lawyer at the 1851 Center for Constitutional Law to latch on to the Hershbergers’ case, and, ultimately, Schimer ended up resigning as medical guardian because she couldn’t actually fulfill her role and monitor Sarah’s health once the family went into hiding. After this, ACH seemed to back off. When last I noted Hershberger’s case in February 2014, the libertarians at Reason.tv were, despicably, defending the medical neglect of this child as a valid exercise of parental rights and “health freedom” while revealing that they had also taken her to a local naturopath named Angela Lowther in Avon Lake, OH. After that point, even though I had Google Alerts set up for this case, I saw almost no news; that is, until now.

How is Sarah Hershberger doing now?

I was originally going to blog about this two weeks ago, when I first noted that Maurice Thompson, Executive Director of the 1851 Center for Constitutional Law, had posted an update, ‘Amish Daughter Healthy Despite Health Care “Experts.”‘ However, I wanted to be able to read the actual court documents, given that Thompson’s blog post was predictably and relentlessly one-sided, referring to Sarah Hershberger’s case as “medical kidnapping” and calling her illness a “mild form of cancer.” One notes that childhood T-cell lymphoblastic lymphoma is not a “mild” cancer, and the only reason it has such a high cure rate is because of modern chemotherapy, complete with induction chemotherapy (which Sarah underwent), consolidation, and maintenance. Before modern chemotherapy regimens, childhood non-Hodgkin’s lymphoma (which Sarah’s is a form of) had a virtually 100% mortality. Worse, a child’s best shot is her first shot at treatment. The prognosis for relapsed non-Hodgkin’s lymphoma like the one Sarah has is quite poor, and survival requires a bone marrow transplant.

So what can we tell about what is really going on? Unfortunately, the court documents have not yet been posted at the Medina County Court site. Because the story has, two weeks later, made its way into the national news in the form of a story entitled “Judge ends court-ordered guardianship of Amish girl in chemotherapy fight” and the international news in the form of a Daily Mail story based on the AP story entitled “Amish girl, 12, is ‘cancer free’ two years after her family was forced into hiding over court battle to force her to have chemotherapy, as judge drops case“, I feel I can no longer wait for the court documents to make it to the website. I have to try to parse what I can now from what’s in the news. For instance, quotes that Thompson included from the ruling in his blog post are clearly cherry-picked, including:

Two years later, having never undergone chemotherapy, Sarah couldn’t be healthier. Court records disclosed at yesterday’s hearing indicated the following: “[Sarah] exhibits no symptoms of lymphoma”

“There are no reports or indications that Sarah cannot keep up with her work or her siblings on a daily basis.”

“Medicine is not always right, as evidenced by Sarah’s survival in the face of ‘certainty’ she would die without treatment”

“There is no need for Sarah’s health to be on the Court’s radar”

Elsewhere, Thompson is a lot more circumspect, even acknowledging that, just because Sarah looks healthy now doesn’t mean she is cancer-free:

Maurice Thompson, the executive director for the libertarian nonprofit 1851 Center for Constitutional Law, said the girl, Sarah Hershberger, shows no signs of cancer and appears to be healthy. “She had MRIs and bloodwork, and the judge over the last year helped facilitate at least one trip to the Cleveland Clinic. The MRIs did not show any cancer,” Thompson told The Gazette on Friday. He said the family will continue to treat the girl with less-invasive, alternative medicine. “Once you have it, you’re never 100 percent out of the woods, whether or not you get chemotherapy,” he said. “I know how she looks isn’t really an indication of whether she has cancer, but she’s looking very healthy.”

I couldn’t help but notice one thing in Thompson’s statement above. It might be nothing, or it might be indicative that all is not quite as well as he portrays. Notice how he points out that she had MRIs and bloodwork but only mentioned that the MRIs didn’t show any evidence of cancer. I found the omission of whether the bloodwork showed any evidence of cancer to be curious. As I said, it might just be my skeptical antennae being hypersensitive, but one wonders. On the other hand, presumably if Sarah’s bloodwork did show signs of cancer the judge likely would not have ruled the way he did.

It’s also interesting to note the contrast between what Thompson wrote on his blog and what he said to an AP reporter. For instance, on his blog he said, “Two years later, having never undergone chemotherapy, Sarah couldn’t be healthier,” and castigated experts who “have no skin in the game” and “arrogantly pontificate without fear of consequences” while being “in fact frequently wrong.” I don’t know about “frequently,” but, in the case of a child with a treatable cancer, if the oncologists are telling me that she has a high chance of dying without further treatment I tend to go with the oncologists. Indeed, there’s a pretty high probability now that Sarah’s cancer will not relapse, as most relapses for T-cell lymphoblastic lymphomas occur within two years of completion of treatment. Knowing that, as I’ve said many times before, it would be a great thing if Sarah Hershberger does ultimately survive despite grossly incomplete treatment, because I don’t want to see a child who might be saved die unnecessarily of cancer, ever. If the price of Hershberger’s survival is a cavalcade of quacks exulting about how the oncologists were wrong and natural therapies cured her, so be it.

The point is this. If Sarah survives without a relapse, I will rejoice. To me, it will be a fantastic thing because it will mean that she is one of the lucky ones who didn’t relapse after her induction therapy, even though she never underwent consolidation or maintenance therapy. If she survives without a relapse, it will have been due far more to the conventional induction chemotherapy she received (plus a lot of luck) than to any of the quackery to which her family subjected her. In essence, she will have survived in spite of her parents, in spite of the quackery, and in spite of the “health freedom” machinations of Maurice Thompson. Remember, the additional chemotherapy after induction chemotherapy decreases the chance of tumor recurrence, and as far as I’ve been able to glean Hershberger responded very well to her induction phase. I realize that this is a message I have to repeat time and time again when I encounter these cases, that it was the science-based treatment—not the quackery—that cured the patient, but it is nonetheless true. Unfortunately, it is a difficult concept to explain, while it is very easy for quacks to make such cases seem to be excellent examples validating their claims that it is better to treat cancer with “natural” therapies.

Fortunately, there is still some hope that the court will not completely wash its hands of the case, as the judge cautioned the parents:

However, Dunn cautioned her parents that she is not fully recovered and warned that they still have a duty to provide her care under Ohio law. ‘Her parents are not free to act entirely as they may choose,’ the judge said.

On the other hand, who’s going to report the Hershbergers if they endanger Sarah’s life again? Probably no one.

What the Hershberger story is really about

I started this post by listing the general form stories like that of Sarah Hershberger take, but there is one more aspect of these stories, perhaps the most important aspect of all, and that is what these conflicts are really about. At their heart, they are less about quackery versus science-based medicine, although that is an important aspect of them, than they are about two things. The first is so-called “health freedom,” which I like to define as the freedom of quacks to ply their quackery and patients to choose quackery. Of course, competent adults already have the freedom to choose quackery if they so desire—or no treatment at all—for a life-threatening disease. No government, at least not in the US, is going to force a competent adult to undergo chemotherapy for a treatable cancer. The government might require practitioners to be licensed, as state governments do, or that health care claims be backed by evidence, as the federal government through the FTC does, or that treatments used show evidence of efficacy and safety, as the FDA does, but it won’t require a competent adult to undergo unwanted treatment.

That’s where the second issue comes in, and that issue is a child’s right to proper medical care. Traditionally, parents, as guardians of their children, are granted great latitude in how they choose medical care for their children. Indeed, there is a widespread attitude that the parents’ power to determine what is best for their children is pretty close to absolute, which is why stories like Sarah Hershberger’s rile up not just the pro-quackery community but large swaths of people who seem to conflate their own right to choose whatever medical care they want for themselves with an absolute right to decide medical care for their children. We see this conflict when children die because parents choose prayer over medicine, as happened with Madeline Neumann, an 11-year-old girl whose parents let her die of diabetic ketoacidosis. Neumann’s case was unusual in that the parents were actually convicted.

To get an idea of how much deference courts grant to parental “rights,” consider the case of Catherine and Herbert Schaible. This is a couple who belong to a church that rejects modern medicine in favor of prayer. In 2009, they were convicted of involuntary manslaughter in the death of their two-year-old son Kent, who developed an upper respiratory infection that later worsened to become severe pneumonia. The Schaibles never took him to a doctor as he got sicker and sicker. The court sentenced the Schaibles to ten years’ probation with a promise that they would take their other children to a doctor when they became ill. To say that this did not work out well is the understatement of the decade. In 2013, their seven-month-old son Brandon died under nearly exactly the same circumstances. He developed an upper respiratory infection that was complicated with pneumonia and ultimately died of bacterial pneumonia and dehydration. Yes, because of deference to parental rights, a second child died unnecessarily in the very same family.

Similarly, in Sarah Hershberger’s case, “parental rights” ended up trumping the child’s right to effective medical care. Indeed, Maurice Thompson is quite explicit in his desire to strip the courts of pretty much all power to intervene to prevent medical neglect, as he stated in his blog post two weeks ago, referring to the court’s action as “medical kidnapping”:

The Ohio General Assembly – – members of which laud health care freedom, family values, and parental choice while campaigning for office – – cannot justify maintenance of Ohio’s wide-open and highly subjective “best interests of the child” test. This test allows county judges to overrule health care, educational, and other important decisions of suitable Ohio parents. Once overruled, children can be immediately seized from their homes. In the wake of Sarah’s case, this concept came to be known as “medical kidnapping.” The Hershberger’s case is a lesson for all of us: we’re not as smart as we think we are. Knowledge is decentralized, and when in doubt, those closest to the situation, families (and not government experts with special designations next to their names) must make life-altering decisions. Further, Sarah’s good health bolsters the case against forced health care that we supposedly cannot live without (literally, in this case). It is now time for Ohio legislators to protect Ohio families from wayward judges. This can be done by reforming Ohio’s unconstitutional “best interests of the child” test.

Note that what Thompson really appears to mean when he refers to “reforming” Ohio’s “best interests of the child” test is its elimination, given his extreme hostility towards it as an unacceptable infringement on the parents’ freedom. This is the sort of rhetoric frequently used by antivaccinationists as well. For instance, Rand Paul made no bones about it in February. Irritated by questions about his opposition to school vaccine mandates in the wake of the Disneyland measles outbreak in January, Paul said bluntly and rather petulantly, “The state doesn’t own the children. Parents own the children, and it is an issue of freedom.” We hear the same rhetoric from “Dr. Bob” Sears, who has frequently equated freedom from vaccines with just plain “freedom,” period. He even went so far as to liken school vaccine mandates to fascism, complete with comparisons to the Holocaust.

At its heart, the Hershberger case is yet another example of how society seems to approve of a view that children are, in essence, their parents’ property more than they are autonomous beings who have their own rights beyond those of their parents. Whenever society tries to intervene to prevent parents, who are nearly always well-meaning and think they are doing what is best for their children, from harming their children through medical neglect, as parents who refuse effective cancer treatment for their children do, there is always strong opposition. I realize that it’s a complicated question to determine when and under what circumstances it is appropriate for the state to intervene to protect a child from the bad medical decisions by her parents, but until this attitude that children are their parents’ property changes, there will be more Sarah Hershbergers and Brandon Schaibles.