Feb 14 2007

Suffer the Little Children

Isabelle Prichard is a 13 year old girl, and recently her doctors found a mass in her brain that they believe is cancer. They recommend immediate surgical removal. Her parents, however, do not believe their daughter’s doctors. Rather they have placed their trust in Russian self-proclaimed psychic healer Nicholai Levashov who believes the mass represents new brain tissue growth. So the mass will remain untreated.

This story raises many issues, and strong emotions on all sides. But first let me give the back story that led Isabelle ‘s parents to their extraordinary conclusion. Isabelle (according to press reports) was born with a severe form of brain cancer called glioblastoma multiforme (GBM). She had four surgeries to remove the tumor; the first three times it grew back, the fourth time she had a sustained remission (until now, apparently). This outcome is on the good end of the spectrum for GBM but not unheard of.

Faulty thinking has led Isabelle’s parents to some tragically flawed conclusions. After the first surgery, they also gave Isabelle an illegal treatment called chondriana (Note: a PubMed search on this term yielded 0 results and I could find no skeptical resources on this treatment) they smuggled over from Canada. Although the tumor grew back, they still credit this concoction of cells with slowing down its return. To them this was evidence that it was working.

Eventually they brought Isabelle to Levashov. He worked on her “psychically” for ten days and then continued giving her “treatments” over the phone. He claimed that he cured her. Isabelle required a fourth surgery to remove this recurrent tumor, and, after the last surgery, there was no evidence of tumor recurrence. Isabelle ‘s parents believed she was cured, not by the surgeries, but by Leveshov.

Now a CT scan shows a new growth that is very suspicious for another recurrence of the tumor. Isabelle’s doctors are appropriately concerned that this is a return of the GBM. Leveshov, however, has declared that the growth is healthy brain tissue, another miracle result of his ministrations. The parents are choosing to believe Leveshov.

Now I have two daughters, aged 7 and 4, so I understand the emotional connection between parent and child. I can imagine how devastating it must be to have a child with a serious illness and how desperately one would cling to any hope. So I have some sympathy for the parents. Although I admit I am angry and frustrated at their decision, I do not blame them as much as the psychic who is victimizing them, the culture that accepts and in some corners even celebrates magical thinking, the lack of outrage on the part of many health care professionals, and the utter fecklessness of child protective services. The decision lies ultimately with the parents, and they should be doing a better job for the child that is in their care, but they are also victims. They are guilty of over interpreting anecdotal evidence through a haze of false hope and desperation.

In my opinion, Leveshov is guilty of depraved indifference, and, if Isabelle pays the ultimate price for his interventions, I would consider that negligent homicide. (I’m not a lawyer, this is just my Law and Order understanding. So there may be more accurate legal terms for the precise nature of his guilt – but you get the idea.)

But there is another issue looming large in this sad case. Do the parents have the right to make such a tragic decision for their child. Not treating Isabelle may represent child abuse and neglect. (This case is complex, because I do not know what the medical risk vs. benefit for Isabelle is of another surgery. But let’s assume for the sake of further discussion that having surgery to remove the tumor is the correct medical decision.)

In the United States there are laws protecting children from abuse and neglect, and the states have the right and duty to take over for the care of children who are being abused or neglected by their parents. However, most states (41) also have religious exemption laws that basically state that parents cannot be prosecuted for abuse or neglect if their decisions were based upon their religious beliefs. The exact wording of such laws varies from state to state, and the details matter—many of the laws use language that gives the state wiggle room to prosecute some cases. In Oregon, where Isabelle lives, the exemption law is one of the strongest and includes language that protects parents from prosecution for murder.

Patricia Feeney, a spokesperson for the Oregon Department of Human Services, is quoted as saying, “Ultimately the care of a child is up to the parents. It’s the same laws that apply to immunization. If people have religious reasons for not doing it, they don’t have to.” So it is obvious what position Oregon DHS is going to take in this case.

In this case I wonder, however, if psychic healing qualifies as a “religious” exemption. Isabelle’s mother, Megan, speaks of thinking in a new “paradigm” and that this is a “form of healing.” I have not seen her reference her religious beliefs to justify her decision, and I cannot think of a religion that includes as a core belief the use of alleged Russian psychics in healing.

The bigger issue, however, is the entire question of religious exemption for child abuse and neglect. Adults certainly have the right to refuse any medical intervention for whatever reason they choose. But children do not – they are wards of their parents until and unless the state deems that the parents are unfit. The state must then intervene if the child is to get the minimal care and safety they deserve. This seems to be a reasonable policy. Children should not be abused, starved, enslaved, tortured, or grossly neglected because of their bad luck in parents.

It is also reasonable for a free society to respect and protect religious freedoms. In such cases, however, these two reasonable ethical principles come into direct conflict. There is no way to resolve the conflict without sacrificing one principle, at least to some degree. It is disconcerting to me, however, that religious interests have largely and quietly won this debate to the great detriment of their children. Children should not die or be permanently injured due to the beliefs (religious or otherwise) of their parents.

The issue needs further public scrutiny and debate, and a more equitable compromise between religious freedom and caring for children should be met. Until then Isabelle and children like her will suffer for the ideology of their parents.

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