One of the most difficult issues that skeptical physicians face is dealing with children sick with cancer whose parents refuse standard therapy. These cases are always highly charged, because the stakes are extremely high. Obviously the stakes are highest for the child as their life is literally on the line. The stakes are also high for society, however, because they force a specific decision regarding the relative rights of parents vs the responsibility of the state to care for minors.

Two recent cases once again raise these issues. One comes from Western Australia where 10-year-old Tamara Stitt was diagnosed with liver cancer. Her oncologist recommended chemotherapy. Her parents were (understandably) concerned about the side effects of chemotherapy.

He said he and his wife decided against chemotherapy for their daughter because of its horrific side effects and because he felt threatened by doctors.

Mrs Stitt testified that she believed her daughter had a 100 per cent chance of being cured with natural therapies, and she had initially responded well to such treatment.

Her parents decided against chemotherapy and instead chose “alternative” therapies including clay wraps, herbal teas and a healthy diet. Tamara’s cancer predictably progressed until her parents finally relented. Tamara received chemotherapy in El Salvador, but it was too late, and unfortunately she died of her cancer.

The second story comes from Canada, involving an 11-year-old girl with leukemia. She is a member of the Six Nations, Canada’s largest aboriginal community. Her parents also are refusing chemotherapy because of its side effects and are opting for native and alternative treatments. Recently a judge argued that we should not impose our modern medicine on a member of this culture:

But Justice Gethin Edward of the Ontario Court of Justice suggested physicians essentially want to “impose our world view on First Nation culture.” The idea of a cancer treatment being judged on the basis of statistics that quantify patients’ five-year survival rate is “completely foreign” to aboriginal ways, he said.

“Even if we say there is not one child who has been cured of acute lymphoblastic leukemia by traditional methods, is that a reason to invoke child protection?” asked Justice Edward, noting that the girl’s mother believes she is doing what is best for her daughter.

“Are we to second guess her and say ‘You know what, we don’t care?’ … Maybe First Nations culture doesn’t require every child to be treated with chemotherapy and to survive for that culture to have value.”

First let me say that the point of this article is not to blame parents. They are in a horrific situation and are sincerely doing what they feel is right. The point of this article is to discuss whether or not desperate parents, regardless of their educational or cultural background, should have absolute authority over the treatment of their very sick children, or does the state have some authority and responsibility to defend the welfare of every sick child?

You can probably guess my position. Children deserve basic medical care and an opportunity to grow up to be adults who can then make their own decisions about their beliefs and the healthcare they choose. Parents should not have the right to condemn their own children to an early and unnecessary death simply because it suits their worldview.

In the case of the Six Nations girls, she has a 90% survival rate with chemotherapy, but she will almost certainly die a painful death if she is treated only with non-science-based treatment.

To establish some basic principles as a starting point, I think we can say there is broad consensus that parents do not have the right to murder their own children, for any reason. The rights of parents are not absolute. They do not own their children as property, and the state has a duty to provide minimal care and protection for children.

Parents also do not have the right to allow their children to die due to neglect. They cannot allow their children to starve, for example. Although this still varies by state and individual cases, I think most people would agree that parents do not have the right to allow their children to die through medical neglect. The only time this becomes an issue is in states that have laws defending parents’ religious freedoms, specifically the freedom to allow their children to come to harm through medical neglect if their faith tells them that is what they should do.

That is a fringe belief, however, and overall the courts have supported the duty of parents to provide basic medical care and the right of the state to intervene if parents are neglecting to do so.

What is most interesting is how differently the states and the courts respond depending on the reasons given for the parental neglect. If the parents have only their medical opinions as justification (meaning that they simply disagree with their child’s doctors), the state is often swift and decisive is taking care of neglected children. They will take children away from their parents, make them wards of the state, and give them the care their doctors say they need.

But then there is a spectrum of complicating factors that seems to sap the courts of their will to protect children. The first is a philosophical position, or essentially choosing alternative treatment to science-based treatment. Then there are religious objections, and finally cultural differences. The latter is especially sensitive when dealing with an historically oppressed people.

However, even in these cases I do not think there is a valid ethical argument that children do not deserve basic rights of their own simply because they were born to parents with particular religious beliefs or who are members of a certain group or culture. (I am not going to get into any issues of legal authority here, just ethics.)

For example, I don’t think the state would allow human sacrifice. Imagine if a native culture still practiced occasional infant sacrifice. Could you imagine a judge defending this practice by saying: “Are we to second guess her and say ‘You know what, we don’t care?’ … Maybe First Nations culture doesn’t require every child to survive infancy without being sacrificed for that culture to have value.”

In essence, the 11-year-old girl with leukemia is going to be sacrificed at the altar of Six Nations culture.  I don’t think it will matter much to her if her throat is slit or if she is allowed to die from a curable cancer, she will still be deprived of reaching adulthood.

I understand there is an emotional difference between being the active agent of someone’s death and allowing someone to die through inaction, but the ethical difference is much more subtle. As the trolley experiments reveal, we are bothered more by active rather than passive killing, even when there is no ethical distinction.

I also think this situation has been complicated by alternative medicine culture. In fact, I place a significant portion of the blame for the unnecessary death of children from treatable diseases at the feet of every guru promoting alternative medicine. They have contributed to a culture in which science and doctors are not trusted, and where everyone feels empowered to be their own expert and do whatever feels right. They have promoted “health care freedom” and “right to try” laws that sacrifice standards of care and ethical practice so that the gurus can make any claims they wish and practice any nonsense that suits them.

Alternative medicine practitioners tell an alluring narrative of “natural” treatments free of side effects, which is like a siren song to desperate parents with sick children. They also infamously overstate and hype their claims. As a result you have the mother of Tamara Stitt who was convinced there was a “100 percent chance” that her daughter would be cured by herbs and diet.

The article on the Six Nations girls quotes fellow member Laurie Hill:

“There’s a fear of [aboriginal remedies] or denial of it. If things can’t be quantified or qualified, to them it’s irrelevant,” said Ms. Hill, as she shopped at Ancestral Voices Healing Centre Thursday. “Who are they [doctors] to say she will make it with their treatments. Just because they have a degree, that makes them more knowledgeable?”

Actually, a degree is a certificate that is earned by demonstrating specific knowledge – so, yes, it does make them more knowledgeable. (That doesn’t mean they are always right, but it does literally mean they are more knowledgeable.) In the quote above you can also see standard alternative medicine propaganda. We are seeing a mixture of this new age culture with more traditional culture and also religious beliefs. They are all blurring into one, with the same justifications for abandoning standards and scientific evidence.

Who are the doctors to say that the girl will “make it with their treatments?” There is a large body of published evidence supporting the safety and efficacy of chemotherapy for leukemia, demonstrating a 90% survival rate. Who are you, Ms Hill, to dismiss this large body of scientific evidence?

Conclusion

To me these cases are crystal clear. Adults can treat themselves anyway they wish. However, parents do not have the right to harm or neglect their children for any reason. One of the primary duties of the state is to protect the vulnerable, those who cannot protect themselves. There is a broad consensus that children are a vulnerable population and need at least a basic level of protection.

This can be done while remaining sensitive to parental feelings and rights. I don’t think draconian measures should be imposed on a hair trigger. But there is a certain threshold that should not be violated. Parents, in my opinion, should not be allowed to refuse life-saving medical treatment for their terminally-ill children.

Despite the fact that there is a general consensus that the state has the right and duty to protect children, even from their parents, I feel that specific authorities lose their will to defend children when sticky religious or cultural issues are involved. This is cowardice, in my opinion. Justice Gethin Edward is allowing a young girl to die unnecessarily, failing to perform one of the state’s most basic duties, because it is politically touchy.

Further it is important to recognize that such deaths are part of the harm that is imposed by a culture of anti-science and conspiracy-mongering that is represented by the alternative medicine movement. Even the more benign-seeming aspects of alternative medicine contribute to this harm.