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Parents have a fundamental right to guide the upbringing of their children protected under the Due Process Clause of the U.S. Constitution. This includes the choice of medical care for the child. They also have a First Amendment right to the free exercise of their religious beliefs, including the right to care for their children in accordance with the tenets of their religion. In a better world, these rights would be exercised in a manner that is consistent with a reasoned selection of medical care among choices supported by the best available scientific evidence. If, for example, deeply religious parents choose to forego a treatment that had only a minimal chance of extending their child’s life and terrible side effects in favor of palliative care because they believe that their child would be better off in heaven we could all agree that their choice is constitutionally protected.

Unfortunately, that is not the case. Religious believers and those whose “philosophy” favors pseudoscience in child medical care (surveys bloviating about the popularity of CAM to the contrary) are in fact a tiny minority of the American population who influence public policy in a manner that far exceeds their actual numbers. This influence allows these special interest groups to cause needless suffering and death among children and their families. As well, their actions siphon off medical and legal resources that could more properly be directed toward the common good when states and medical institutions are put in the position of having to go to court to protect children from their parents. And, by giving parents false choices between a belief in magic and standard medical care, unnecessary complications are introduced into what are already difficult and heart-wrenching decisions by parents who truly want to act in the best interests of their children.

U.S. Constitutional protection of parental choices

As with all constitutionally-protected rights, religious freedoms are not absolute. Nor is the parents’ fundamental right (considered a liberty interest under the Due Process clause) to guide his child’s upbringing. But there is no constitutionally protected right to harm a child via the denial of medical treatment. As the U.S. Supreme Court said in Prince v. Massachusetts, decided in 1944 (emphasis added):

The family itself is not beyond regulation in the public interest, as against a claim of religious liberty. And neither rights of religion nor rights of parenthood are beyond limitation. Acting to guard the general interest in youth’s well being, the state as parens patriae may restrict the parents’ control by requiring school attendance, regulating or prohibiting the child’s labor, and in many other ways. Its authority is not nullified merely because the parent grounds his claim to control the child’s course of conduct on religion or conscience. Thus, he cannot claim freedom from compulsory vaccination for the child more than for himself on religious grounds. The right to practice religion freely does not include liberty to expose the community or the child to communicable disease or the latter to ill health or death.

Why, then, do we fairly regularly see media reports about the “rights” of parents to choose faith healing or quack remedies for their children being litigated in the courts? Well, one reason is that these cases make for compelling news stories. There are plenty of run-of-the-mill child abuse and neglect cases circulating through the courts on a daily basis but these generally don’t have the David v. Goliath news value of the loving, God-fearing parents v. reductionist, Pharma-shill medical establishment/nosy, liberty-denying state authorities story. Nobody wants to defend the stereotypical drug-addled welfare mom who won’t take her sick child to the doctor. However, make that Christian Science parents whose child is wasting away from lack of effective medical treatment. Or, the parents who want to use “natural” remedies instead of chemotherapy for their child. Front page news! And plenty of people who’ll stand up for the “right” of these parents to harm their child.

In a better world, all three of these cases would be treated the same legally. The state could press charges of child abuse and neglect, seek to remove the child from the home and/or put him under a medical guardianship. The state attorney could criminally prosecute. And mitigating circumstances could be taken into account, as they are in all cases where issues such as intent to harm and possibility of future harmful conduct are an issue. The mom might agree to go into drug rehab and take parenting classes. The other parents might agree to rational medical treatment in the future and thereby avoid separation from the child and any criminal proceedings.

But that is not the case if a state attempts to intervene on behalf of a child whose parents refuse medical treatment on religious grounds. If the parents object to care on the basis that their First Amendment rights are being violated, their chance of succeeding depends on the extent of possible harm to the child with and without medical treatment as well as the likelihood of success with treatment and the treatment’s side effects. In other words, a religious barrier is erected between rational medical judgment and the child, although the deference to parental wishes is not insurmountable. One court ruled that state could not order treatment where the treatment was “risky, extremely invasive, toxic with many side effects, and/or offers a low chance of success.”

However, the court recognized that it is nevertheless

well-settled that the state may order medical treatment for a non-life threatening condition, notwithstanding the objection of the parents on religious grounds, if the treatment will, in all likelihood, temporarily or permanently solve a substantial medical problem.

Courts have refused to defer to the parents’ religious beliefs where the treatment is likely to succeed against an otherwise- fatal disease, even though the treatment can have terrible side effects. This was true of the highly publicized Daniel Hauser case, in which Daniel and his mother temporarily fled the court’s jurisdiction to avoid further chemotherapy. Daniel’s parents wanted to treat him with “natural healing” modalities instead as, they claimed, their religious beliefs dictated. (Although Minnesota, where Daniel lives, has certain statutory protections from state intervention, as discussed below, it is not clear to me they were applicable in this case. The parents did invoke, however, their constitutionally protected parental rights.)

Fortunately, where the parents claim only a liberty interest protected by the Due Process clause, the parents’ choices are typically given less deference, as was true in the Sarah Hershberger case, although a lot of good that did her. And quackery occasionally scores a total win. In the Matter of Joseph Hofbauer pitted the parents’ fundamental right to select their child’s medical care against science-based medicine. Joseph, age 7, was diagnosed in 1974 with Hodgkin’s disease, which is almost always fatal if left untreated. Joseph’s physician recommended sending him to an oncologist or hematologist for further treatment, which would include radiation and possibly chemotherapy. His parents’ preferred treatment by a physician who instituted a course of nutritional therapy and injections of laetrile.

This “duly licensed” physician treating Joseph, Dr. Michael Schachter, testified at the subsequent neglect proceedings instituted by the county. Naturally, Joseph’s condition had worsened, as testified to by two physicians conducting independent examinations. Dr. Schachter, on the other hand, thought that Joseph was progressing nicely under his treatment regimen, one that he considered effective and beneficial in cancer cases such as Joseph’s, although he did not rule out conventional therapy “if the boy’s condition appeared to be deteriorating beyond control.” A biologist also testified that a study showed “significant regression” in cancerous tumors in mice treated with laetrile, vitamin A, and proteolytic enzymes. The New York Court of Appeals agreed with the lower courts that it could not be said that the parents failed to give Joseph legally adequate medical care, although regular consultations with another physician were part of that decision.

Joseph died two years later (of Hodgkin’s disease). I don’t know if it’s the same person, but a Dr. Michael Schachter, who has been practicing since 1974, practices pseudoscientific “integrative” medicine in New York, not far from where Joseph was treated.

This is not an ideal situation, of course, but reliance solely on the First Amendment or Due Process Clause means that the child’s best interest must be weighed against the parents’ constitutional rights, and though it may require an extended court battle, ill-informed treatment choices that endanger a child rarely win out. Importantly, the Constitution provides no immunity from prosecution for neglect, abuse or the child’s death no matter how fervent the parents’ religious or philosophical belief.

Statutory medical and philosophical exemptions: immunity from criminal responsibility and more

However, if the parents live in one of the many states where the legislature has enacted the numerous medical exemption laws shielding parents’ harmful medical choices for their children, the results can be dramatically different. (Harriet Hall recently discussed how these laws negatively impact children’s health and efforts to repeal them.) These exemption laws have no basis in the constitution and go far beyond what would be allowed if denial of medical testing, preventive measures and treatment for children were simply based on constitutionally-protected parental rights.

CHILD (Children’s Healthcare is a Legal Duty) is a terrific non-profit organization that opposes medical mistreatment of children on religious grounds as well as parents’ use of quackery on their children. CHILD tracks the numerous cases where children are injured or killed by these practices as well as promotes the end of religious exemptions and other laws that might deny children access to proper medical care. (They do a lot more too and you should familiarize yourself with their work. It is a testament to what one small, dedicated organization can do to prevent health care based on prescientific thinking.)

Their website lists the many ways states protect parents who harm their children. While many people are aware of the vaccine exemption laws and their connection to the contraction of vaccine-preventable disease, the problem actually extends far beyond vaccination. A brief summary of religious and philosophical exemptions from medical testing and preventive care for children include:

Prophylactic eye drops (to prevent blindness), Vitamin K, metabolic testing, and hearing tests for newborns

Testing children for lead

Testing and treatment for TB (includes testing teachers)

Vaccination, school physicals, and wearing bicycle helmets

Medical examination, testing, treatment, and vaccination during public health emergencies (applies to everyone)

Learning about disease in public school

In addition, many states provide an exemption from civil and criminal liability for failure to provide medical care. Again, from CHILD:

From non-criminal action, such as child neglect sufficient to allow protective custody, in 38 states

From felony prosecution in 17 states, including, in some instances, manslaughter and murder

From misdemeanor prosecution in 15 states

As pointed out by both law professor Shirley Darby Howell and CHILD, the enactment of religious exemption laws in a lot of instances was due to a 1974 federal law providing states with funding to establish programs aimed at reducing the incidence of child abuse and neglect. (A pdf of Prof. Howell’s article can be located by searching for her name in Google Scholar.) Unfortunately, the law ensured that child abuse for religious reasons was exempted by stating that parents could not be considered negligent if they did not provide medical treatment due to religious beliefs. That did not, however, preclude the state from stepping in and ordering medical services. Based on the belief that these funds would not be available unless they enacted religion-based medical exemptions, the states complied. In 1983 the law was amended to allow states to abolish their religious exemptions without penalty to their funding. Unfortunately, few states have done so.

Pediatrician Seth Asser, M.D., and Rita Swan, who founded CHILD, assessed the impact of religiously-motivated child medical mistreatment and reported their findings in a 1998 article published in Pediatrics . Of 172 deaths of children when medical care was withheld on religious grounds, they concluded that 140 of the children would have had at least a 90% likelihood of survival with medical care. Eighteen more had expected survival rates of >50% and all but 3 of the remainder would likely have had some benefit from clinical help. In short, religious exemptions from medical care are deadly.

One of the ironies of religious exemptions is that the substitution of religiously-dictated practices for medical care is so rare in American religious belief. (In all world religions, actually.) Some religions and their various denominations consider faith an important part of healing but they don’t consider it a substitute for medical care. As best I can tell, Jews and Muslims do not hold the belief that medical care for children should be foregone in favor of faith healing. And among Christians the denominations supporting rejection of medical care are small and widely considered outside the fold by both mainstream and evangelical Christians, such as Christian Scientists and Jehovah’s Witnesses.

Further efforts to further medical neglect of children

Yet Christians Scientists have had an outsized effect on public policy through their vigorous lobbying, which continues to this day. Again, this is ironic because their votes – unlike, for example, the religious right in certain jurisdictions – are not essential to electing a candidate because there are so few of them. There are presently before the U.S. Congress two bills, HR 1814 and S 862, heavily lobbied by the Christian Science church, the deceptively named Equitable Access to Care and Health (EACH), which exempt everyone with “sincerely held religious beliefs” from the Affordable Health Care Act’s mandate to buy health insurance. Of course, this fits nicely with the intense hatred of Obamacare by Congressional Republicans, who will do anything, no matter who sponsors it, to undermine the law. This bill would obviously interfere with one of the central purposes of Obamacare – ensuring that children get a defined set of preventative services without cost and adequate medical care. Hypocritically, Christian Scientists have successfully lobbied for, and gotten, insurance coverage for their faith healing practitioners.

The Christian Science church sponsored a “call-in” day on Tuesday, asking members to contact their Representatives and Senators to support the bills. They were successful in the House, although that may have had more to do with procedural shenanigans than the call in. S 862 is still before the Senate.

There is also a movement afoot among conservative groups ostensibly directed at preventing the adoption by the United States of the U.N. Convention on the Rights of the Child and Convention on the Rights of Persons with Disabilities, which they view as undermining, among other things, parental rights. The group behind this, ParentalRights.org, vehemently opposes restriction or elimination of religious and philosophical exemptions to vaccination and the “right” of parents to choose quackery as a substitute for responsible medical care for their children, and they want those rights enshrined in the constitution with an amendment. (Orac blogged about this over on Respectful Insolence). An amendment, in their view, would make it much harder for the state to intervene in cases where parents are guided by their own religion and philosophical whims instead of rational, evidence-based information, no matter how much these beliefs trespass on the child’s health and welfare.

Coincidentally, Justina Pelletier has emerged as the perfect poster child for their cause. Justina’s case is a rare instance where the parents’ choice between two seemingly-conventional medical diagnoses and recommended treatment regimens has landed them in the courts. As is often the case, the facts are more complicated than parentsrights.org’s loving parents v. the evil state presentation. (The story is covered by the Boston Globe here and here.) Nevertheless, Justina’s story deflects attention from the fact that the choices in the more typical parents’ rights cases are between totally ineffective methods and conventional medical care.

The organization firmly denies that it is anti-vaccination, using the sort of weasely language often found in the anti-vaccination crowd.

We at ParentalRights.org neither endorse nor condemn vaccines. We simply hold that informed parents are in the best position to make medical decisions for their child.

Of course, misinformed parents, such as those who believe in propaganda from the National Vaccine (Mis)information Center, are not in the “best position” to make that decision. (The NVIC is listed as an “Allied Organization” and is a source specifically cited by ParentalRights.org in a plea for support sent to another organization.) But if you want to ditch science as the standard for medical care, I suppose all information a parent considers, no matter how misguided or flat-out wrong, is a sufficient excuse to deny children protection against illness and death caused by vaccine-preventable diseases.

The pro-quackery position is not in evidence at all (that I could find) on their website, yet the organization has issued a call for support (reprinted on another organization’s website) of Colorado Senate Bill 14-032 which would eliminate the restrictions on naturopaths and “alternative medicine” providers (basically anyone who declares, sua sponte, that he or she is an alternative medicine provider, including felons convicted of sex crimes).

Conclusion

All children deserve rational, science-based medical care. The U.S. Constitution does protect, to a limited extent, the parents’ choices in the child’s medical care. Preferably those choices would never be dictated solely by religion (to the extent it is not in the child’s best interest) or pseudoscience. Fortunately, the well-being of the child is paramount when the two conflict. Most of the harm to children from denial of medical care is done because state laws allow parents to make religious and philosophical decisions endangering the child’s well being. Yet these laws are contrary to the moral sensibilities of the vast majority of Americans, who do provide preventive care for their children, including vaccinations, and adequate medical care when they are sick. Children are being held hostage by a small minority of politically active zealots. All religious and philosophical exemption laws should be repealed. It would be especially useful to this cause if religious leaders who reject religion as a pretext for denial of medical care spoke out against this tyranny of the minority, as the American Academy of Pediatrics has done.