A few weeks ago, Steve Novella invited me on his podcast, The Skeptics’ Guide to the Universe, to discuss a cancer case that has been in the news for several months now. The case was about an 11-year-old girl with leukemia who is a member of Canada’s largest aboriginal community. Steve wrote about this case nearly a month ago. Basically, the girl’s parents have been fighting for the right to use “natural healing” on their daughter after they stopped her chemotherapy in August because of side effects. It is a profoundly disturbing case, just as all the other cases I’ve discussed in which children’s lives are sacrificed at the altar of belief in alternative medicine, but this one has a twist that I don’t recall having dealt with before: The girl’s status as part of the First Nations. Sadly, on Friday, Ontario Court Justice Gethin Edward has ruled that the parents can let their daughter die.
The First Nations consist of various Aboriginal peoples in Canada who are neither Inuit nor Métis. There are currently more than 630 recognized First Nations governments or bands in Canada, half of which are located in Ontario and British Columbia. This girl lives in Ontario, which is basically just next door to Detroit, just across the Detroit River. Unlike previous cases of minors who refuse chemotherapy or whose parents refuse chemotherapy for them that I’ve discussed, such as Sarah Hershberger, an Amish girl whose parents were taken to court by authorities in Medina County, Ohio at the behest of Akron General Hospital, where she had been treated because they stopped her chemotherapy for lymphoblastic lymphoma in favor of “Katie Wernecke, Abraham Cherrix, Daniel Hauser, Jeremy Fraser, Jacob Stieler, Sarah Hershberger, or others, follow a very similar script. It’s a script that on many an occasion has led me to quote Elton John sadly, “I’ve seen that movie, too.” Here’s the basic script:
- A child is diagnosed with a treatable, curable pediatric cancer. (Note that most pediatric cancers are among the most curable cancers there are. Pediatric leukemias and lymphomas, for example, have gone from a virtually-zero survival rate 50 years ago to survival rates that approach 90% or even more. Truly, if there is a triumph of science based medicine, it is in pediatric cancers.)
- The child begins chemotherapy, going through part of the recommended protocol, and suffers the expected side effects.
- The parents, who quite naturally have a hard time watching their child suffer, hear about some quackery or other that promises to treat their child without the side effects of chemotherapy. If they are prone to belief in “natural healing” or alternative medicine, there is a good chance that they will stop their child’s chemotherapy and opt for the promise of the “natural healing” that claims to be a cure without the pain.
- Doctors, alarmed at the likelihood that the child will die, report the child to the child protective service authorities, who intervene.
- There is a court case. If the court case goes against the parents, frequently they flee with the child, as Daniel Hauser’s mother did, as did the parents of Katie Wernecke, Abraham Cherrix, and Sarah Hershberger, among others.
- At this point, one of two things happens. Either the parents are persuaded or ordered to treat their child properly (as in the case of Daniel Hauser); they come to some sort of compromise that allows the child to get some treatment plus “alternative healing” (as in the case of Abraham Cherrix); or, a depressingly common outcome, they win the “right” to let their child die through medical neglect, as has just happened with this First Nations girl with lymphoma.
- Through it all, quacks leap on these stories as examples of “fascism,” and “gunpoint medicine” in order to promote their world view of “health freedom” (otherwise known to skeptics as the freedom from pesky laws and regulations outlawing fraud and quackery), as happened in virtually all these cases, but most notably recently for the case of Sarah Hershberger.
How do these stories end? Sometimes they end with the death of the child. Sometimes the child lives (I’ll explain why a little later). Ofttimes it’s very difficult to find out what happened to the child, as I’ve found out to my frustration over the years. For instance, I have not been able to find out much about Sarah Hershberger since March, when Tracy Oppenheimer of Reason.com defended her medical neglect in the name of health freedom. (What are the deaths of some children with cancer compared to health freedom, eh?)
This First Nations case adds a different spin on the subject, but the script remains more or less the same. This time around, the parents have won the right to let their daughter die a horrible death from cancer based on Aboriginal rights.
Aboriginal children now have the right to refuse life-saving medical treatment in favour of traditional healing.
The Friday ruling has nothing to do with whether aboriginal medicine works.
Family court heard unequivocally in the case of a First Nations girl refusing chemotherapy that no child has survived acute lymphoblastic leukemia without treatment.
Instead, it’s about Canada’s Constitution protecting aboriginal rights.
Ontario Court Justice Gethin Edward has now expanded those rights to include traditional healing, saying “there is no question it forms an integral part.”
“This is monumental for our people all across the country,” said Six Nations Chief Ava Hill. “This is precedent-setting for us.”
No doubt this ruling is monumental and precedent-setting, but in a very bad way. So, in other words, our neighbor to the south (at least to me in southeast Michigan, which is the only place where Canada is to the south) have declared that letting children die of cancer is an “integral” part of Aboriginal identity. I am not exaggerating. The court apparently didn’t even take into account whether the “natural healing” chosen by the girl’s family works. Meanwhile, Six Nations Chief Ava Hill is exulting over the ruling, apparently unconcerned that it will result in the death of an 11 year old girl. As I’ve said many times before, a competent adult should have the right to choose any form of medicine he likes or even to choose no treatment at all, but children are different. They are not capable of understanding the implications of their decision, and this girl, at 11 years old, isn’t even in the gray area of the later teen years where an argument can sometimes be made for self-determination even though the child is a minor. They need and deserve protection from such outrageously bad choices on the part of the parents.
This case is a complete failure on the part of the province of Ontario and of Canada itself to protect the lives of its most vulnerable members, children, particularly children of a minority group. Even worse, it is an indictment of the First Nations, which, rather than seeking to protect one of the most vulnerable members of its community, a girl with a treatable, potentially curable cancer, instead glommed onto this case as a vehicle to promote its rights vis-a-vis the Canadian government. I don’t think it was cynically done; no doubt the leaders of this particular First Nations community and Six Nations Chief Ava Hill believe in their Aboriginal natural healing. On the other hand, it’s hard not to think that there was some opportunism given that the parents appear not to have even chosen to use Aboriginal “natural healing” techniques.
Instead, they are using the rankest quackery, which has nothing to do with aboriginal natural medicine, administered by Brian Clement in a “massage establishment” in Florida:
A Florida health resort licensed as a “massage establishment” is treating a young Ontario First Nations girl with leukemia using cold laser therapy, Vitamin C injections and a strict raw food diet, among other therapies.
The mother of the 11-year-old girl, who can not be identified because of a publication ban, says the resort’s director, Brian Clement, who goes by the title “Dr.,” told her leukemia is “not difficult to treat.”
Another First Nations girl, Makayla Sault, was also treated at Hippocrates Health Institute in West Palm Beach and is now critically ill after a relapse of her leukemia.
Somehow, I doubt that the traditional healing methods used by First Nations people have ever included cold laser therapy or vitamin C injections. Looking at Makalaya Sault, you will see the future of this First Nations girl: Relapse. But what about Brian Clement? It turns out that I’ve written about him before.
In brief, Clement is, in my opinion, a quack. If you have any doubt, start by looking at what he is quoted as saying in this news story:
He’s been giving lectures in and around both girls’ communities in recent months, including one event attended by Makayla’s family this past May.
In a video obtained by CBC News, Clement says his institute teaches people to “heal themselves” from cancer by eating raw, organic vegetables and having a positive attitude.
“We’ve had more people reverse cancer than any institute in the history of health care,” he says.
“So when McGill fails or Toronto hospital fails, they come to us. Stage four (cancer), and they reverse it.”
The mother of the girl whose identity is protected says she knew as soon as her daughter was diagnosed that she wanted to seek treatment at Hippocrates, a clinic she was familiar with through a relative, but didn’t have the money to go.
After securing financial support from family, she called Clement from the hospital waiting room on the 10th day of her daughter’s chemotherapy.
The story goes on to describe how the mother called Clement while her child was receiving chemotherapy and found how “confident” he sounded. As soon as he said he could help, the mother quit the chemotherapy for her daughter.
It’s all depressingly similar to a story I encountered about a year ago. It was the story of a young mother in Ireland who had been diagnosed with stage IV breast cancer and chosen the “alternative route.” She, like the anonymous young First Nations girl and Makayla Sault, found her way to the Hippocrates Health Institute. The young woman, Stephanie O’Halloran, was only 23 years old, an age range at which breast cancer is rare, but not unheard of.
These are the sorts of things Clement offers through HHI’s “Life Transformation Program“:
- Superior nutrition through a diet of organically-grown, enzyme-rich, raw, life-giving foods
- Wheatgrass therapies, green juice, juice fasting
- Colonics, enemas, implants
- Exercise, including cardio, strength training and stretching
- Far infrared saunas, steam room
- Ozone pools, including: dead sea salt, swimming, jacuzzi and cold plunge
- Weekly massages
- Bio-energy treatments
- Med-spa & therapy services
That’s not all. Read my old post for more details. Basically, almost every form of cancer quackery known to humans is available at the HHI.
This is the “alternative healing” that the First Nations girl’s mother has chosen instead of effective chemotherapy. In essence, the parents and First Nations petitioned Ontario courts and Justice Gethin Edward acquiesced to letting First Nations parents have the right to let their children die through medical neglect. It might well be that Justice Edward’s ruling was legally correct and he had no real choice, but the end result will be the same: The death of a girl who otherwise would have a very good chance of living a long and productive life. Worse, his reasoning included this:
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.”
Every parent who chooses quackery over effective medicine believes she is doing what’s best for her child. Every single one of them. The same is true of parents who thought that prayer could cure pneumonia or diabetes. That’s not a reason to deny such children protection. More disturbing, however, is Justice Edward’s last sentence, in which he seems to be shrugging his shoulders and saying, “So what if a few aboriginal children die anyway? It’s just their culture.” Or, as Steve aptly put it, using human sacrifice as a reductio ad absurdum of the judge’s argument: “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.”
It’s understandable, given Canada’s history of riding roughshod over the wishes of First Nations families, such as the case of residential schools pointed out by Arthur Schafer, that the court would want to bend over backwards to respect the wishes of the parents. However, in doing so, Justice Edward utterly failed to take the best interests of the child into proper account.
How does this sort of thing happen?
Steve also correctly noted that the outcome of such legal battles often hinge on the reasons given by the parents for refusing chemotherapy. If, for example, they simply use medical opinions as a justification (i.e., they disagree with their doctors), the state is usually pretty quick and decisive in taking action. This is the sort of situation that ruled Daniel Hauser’s case, and ultimately Hauser underwent effective chemotherapy and lived. If, on the other hand, religion or culture is used as justification for choosing quackery over effective treatment, courts seem to be much less willing to step in and see that the child receive effective treatment. For instance, in 2009 Catherine and Herbert Schaible in the Philadelphia area to choose prayer over antibiotics for pneumonia for their first child. The child died. The Schaibles received ten years’ probation and had to promise, in essence, that their other children, who were not removed from their care, would receive modern medical care. In 2013, a second child, who was 8 months old at the time, died the same way. It took the second death of a child before the state actually took their children away and put them in jail. The same dynamic came into play in the case of Sarah Hershberger, where Medina County authorities were reluctant to be too harsh because they were Amish, and their culture valued “natural healing.” Clearly, the same dynamic has led to Justice Edward’s tragic decision with respect to this First Nations girl.
Also at play is an attitude that ascribes absolute rights to parents over their children. It’s a toxic attitude that is often mixed with a general distrust of government and medical authority that fails to acknowledge that children are separate beings with their own rights separate from the rights of the parents. Those rights include the right to not to suffer from medical neglect. As has been pointed out, parents don’t have the right to kill their children; they shouldn’t have the right to let them die through medical neglect, as the parents of this First Nations child are doing.
For all my railing against the medical system, what’s really critical here is understanding why parents make these choices. Having a child with cancer is a horrible, terrifying thing to go through. Having to watch a child suffer the complications of chemotherapy with the child not understanding why it’s necessary is even harder. It’s very understandable that parents with a tendency toward believing in natural medicine or with just a distrust of medical authorities in general would be tempted by the siren song of quacks claiming that they can cure the child without all the toxic side effects of chemotherapy. In particular, it’s often hard for parents to understand why, after tumors frequently shrink away to nothing after the first couple of courses of chemotherapy, more chemotherapy is needed.
Unfortunately, for most pediatric tumors it takes a lot more than just a round or two of chemotherapy, a lesson painfully learned by pioneering pediatric oncologists back in the 1960s and 1970s. For the type of tumor that, for example, Sarah Hershberger has, lymphoblastic lymphoma, the duration of one standard treatment is two years. For chemotherapy for lymphoma, there are at least three phases. The induction phase is designed to put the patient into remission. Consolidation chemotherapy is given to patients who have gone into remission and is designed to kill off any residual cancer cells that might be present, thus increasing the chance of complete cure. Maintenance chemotherapy is the ongoing, longer term use of chemotherapy to lower the risk of recurrence after a cancer has gone into remission. It’s basically lower-dose chemotherapy given for two to three years to help keep the cancer from returning. In Sarah Hershberger’s case, her oncologist recommended chemotherapy consisting of five phases: induction (5 weeks), consolidation (seven weeks), interim maintenance (eight weeks), delayed intensification (six weeks), and maintenance (90 weeks), for a total duration of two years, three months. In the case of this First Nations girl, who has lymphoblastic leukemia, the treatment would have involved at least three phases: remission induction, consolidation/intensification, and maintenance lasting a similar amount of time.
It’s thus understandable how parents, after seeing the tumor melt away during induction chemotherapy, wonder why all this additional chemotherapy is needed. It’s quite possible that after induction chemotherapy the First Nations girl had no detectable cancer. If that’s the case, it’s the chemotherapy that she’s received thus far that almost certainly caused that result, not any quackery to which Clement has been subjecting her. If the girl is apparently tumor-free, it also means that failing to consolidation and maintenance chemotherapy greatly increases the chance that her leukemia will relapse. Worse, relapsed cancer is always harder to treat. The first shot at treating cancer is always the best shot, with the best odds of eradicating the cancer. Letting cancer relapse through incomplete treatment breeds resistant tumor cells the same way that not finishing a complete course of antibiotics contributes to the development of resistant bacteria. It’s evolution in action.
Some children will be fortunate enough to have had their cancer eliminated completely after induction and will survive to become testimonials used in support of such parents’ actions, but they are the minority. Depending on when the chemotherapy is stopped relative to the complete recommended course, most will not be so lucky. Parents also often have a view that it is the chemotherapy that is the cause of the child’s suffering, believing that if they stopped the chemotherapy the suffering would stop, and even if the child dies it would not be as bad for her as the chemotherapy. Unfortunately, death from cancer is not pretty. It’s worse than chemotherapy. Stopping chemotherapy early might relieve suffering for a while, but only at the price of an ugly death later.
Somehow, there has to be a way to get such parents to see this, to teach them the very basics of cancer biology, why chemotherapy regimens for pediatric malignancies are as long as they are, and what the consequences of not finishing chemotherapy are. Remember, the parents are almost always only interested in what they believe to be best for their child, and they are suffering in a different way as they watch their child suffer the side effects of chemotherapy. When their child is crying that she can’t take it any more, when she’s vomiting and feeling very sick due to the chemotherapy, it’s very hard for parents to see that it’s worth this pain if the tumor is already gone. They need support systems to help them deal with this. Most pediatric cancer centers provide such support, but it isn’t always enough. Again, although my memory is by no means comprehensive, since I started paying attention to these cases ten years ago, I can’t recall a single case of parents who refused chemotherapy for their child until after the child had undergone at least a couple of cycles and suffered the expected side effects. I’m sure such parents probably exist, but they must be rare, because I’ve paid a lot of attention to these sorts of cases over the years, and I can’t recall one.
Finally, when faced with parents wanting to stop chemotherapy, oncologists have to be very careful not to come across as bullying, something I suspect that they sometimes do without realizing it when hearing a parent tell them she is going to stop chemotherapy. It’s understandable that physicians and nurses would react that way. Pediatric oncologists become pediatric oncologists because they want to save the lives of children with cancer, and nurses working on pediatric oncology wards work there for the same reason. It’s understandable that they react with alarm to such pronouncements by parents and might become angry or strident. After all, the child is their patient, not the parents, and the parents have just become an obstacle to saving the child’s life. When parents threaten to stop chemotherapy, it is often a cry for help; they’re telling doctors that they can’t handle seeing their child undergo chemotherapy any more. Sensitivity is required in working with them.
None of this, however, means that, if push comes to shove and the parents can’t be moved with all the understanding and empathy in the world, the interests of the child shouldn’t come first. The interests of the child must come first, and if parents can’t be persuaded to continue treatment of a highly curable tumor, then the state has a duty to step in. It’s a duty at which Ontario and Canada have failed in the case of this First Nations girl. It’s also a duty that First Nations authorities who supported the parents in filing suit have utterly failed to uphold.