The Internet Can Be as Deadly as It Is Empowering
All child deaths due to illness are a tragedy, but some tragedies are more pronounced than others.
When a child’s death could have been properly prevented through medical intervention which was deliberately refused by the children’s parents, most of us are at least shocked, if not outraged.
This week David and Collet Stephan of Lethbridge, Alberta were convicted for failing to provide the “necessaries” (sic) of life under s. 215 of the Criminal Code. This section is used more commonly to address insufficient feeding for underweight babies, babies drowning in bathtubs, and even with the risk of physical abuse by parents and protective intervention.
The Stephans were charged for another reason, the failure to provide medical care to their 19-month-old son, Ezekiel. They’re not the first to be charged for this reason, and parents have recently been convicted under this section for a four-year-old boy who fell down the stairs and subsequently died due to his injuries, and another 19-month-old boy who died from full thickness burns after his mother refused to obtain medical treatment for him.
Unlike some of these other s. 215 cases around medical issues, the Stephans were motivated in part by ideology. They can be described as “anti-vaxxers,” who don’t believe in vaccinations for their children. You see, Ezekiel died from meningitis, a condition which is entirely preventable through the use of vaccines.
When their neighbour, a registered nurse in Alberta, told the Stephans that the child might actually be suffering from meningitis, the parents shrugged this off. They had their alternative remedies. Things like ginger root, maple syrup, olive-root extract, and horseradish smoothies.
Sounds delicious. Not sure I’d want to put my child’s life in the hands of a few smoothies though.
But the Stephans had a secret weapon. Their family firm manufactures a product called EMPowerplus. A closer look at the ingredients illustrates that this pill is not much more than a multivitamin, with some herbs and minerals for good measure.
The Stephans had essentially put their son’s life in the hands of a Flintstones vitamin. What’s scarier is that EMPowerplus may have been responsible for the death of another child in B.C. in 2012.
Medical quackery has always been around. Some would argue that prior to the scientific era, most medicine was all quackery, and there’s probably some truth to that. In the modern era, there’s far less room to risk the lives of minors due to unfounded fears and superstitions.
Some people are pushing back. After a primary school in Melbourne, Australia experienced a smallpox epidemic, with 25% of the children getting sick, Jeffrey Kluger of TIME stated,
Now and then, in just the right situations, there’s a lot to be said for intolerance—especially when it comes to the safety of kids. We don’t tolerate bullying in schools on the false belief that a few scuffles can build character. We don’t tolerate smoking on playgrounds because parents should have the right to determine the tobacco habits of their second-graders.
And we shouldn’t—but too often still do—tolerate parents who deny established science and refuse to vaccinate their school-age children, potentially endangering every other child in the school and the community beyond as well.
But the anti-vaxxers still won’t listen.
Studies demonstrate that no matter how much education or information parents opposed to vaccinations are provided, they do not change their minds. If anything, they become even more entrenched in their positions, the very definition of radicalization.
Tara Hills, one of the few anti-vaxxers who has publicly reneged on her position, explained her dilemma on The Scientific Parent,
I jumped on Google to type in “child cough.” My kids had all but one symptom of pertussis, none of them had the characteristic “whoop.” But they had everything else.
We had vaccinated our first three children on an alternative schedule and our youngest four weren’t vaccinated at all. We stopped because we were scared and didn’t know who to trust. Was the medical community just paid off puppets of a Big Pharma-Government-Media conspiracy? Were these vaccines even necessary in this day and age? Were we unwittingly doing greater harm than help to our beloved children? So much smoke must mean a fire so we defaulted to the ‘do nothing and hope nothing bad happens’ position.
For years relatives tried to persuade us to reconsider through emails and links, but this only irritated us and made us defensive. Secretly, I hoped I would find the proof I needed to hold the course, but deep down I was resigned to only find endless conflicting arguments that never resolved anything. No matter if we vaccinated or not, I thought, it would be nothing more than a coin toss with horrible risks either way.
The author of the vaccination education study stated in subsequent interviews that education may not be the solution to the problem, “Other policy measures might be more effective.”
That’s where the law comes in.
Michelle Hauser discusses the Stephan’s case with her own personal narrative in, “It can be dangerous when Dr. Google’s on call.” She thinks the court should apply leniency in sentencing, because “They’ve already paid the ultimate price for their foolishness and hopefully the country has heard the wake-up call.”
There’s reason to think that the country has not. There are already 3 other cases underway in Alberta, all for failing to seek medical care.
It’s also questionable whether the Stephans have learned from their foolishness. On April 27, 2016, David Stephan published a public Facebook post, which appears to express no remorse or understanding about why his actions were wrong.
He refers to the actions of the Crown as “deception, drama and trickery,” and describes the decision as “a dangerous precedent being set in Canada,” where people will be forced to conduct “parenting as seen fit by the government.” His post re-posts, or quotes the post of another individual, with a link to a review of Death by Medicine.
The modern medical system is far from perfect, with much too much emphasis on pharmaceutical intervention rather than preventative care. Adverse drug reactions and medical errors do occur.
But relying on “Dr. Google” is infinitely worse. Death, in reaction to an ineffective horseradish smoothie, is probably the greatest adverse medical error you can experience.
The Crown relied heavily in their submissions that sometimes love just isn’t enough. “Parents still have to follow the standard of care that is set by the criminal law,” said Lisa Weich, Crown prosecutor.
The principles of sentencing under s. 718 of the Code contains, among other provisions, the need for denunciation, deterrence, and promoting a sense of responsibility. David Stephan has already indicated a very low likelihood of rehabilitation, as do anti-vaxxers generally.
This is the type of case which demands the maximum sentence of 5 years in imprisonment. There are children out there, somewhere in Canada, who are counting on it.
Terrific post Omar. My own perspective on this comes from having a child with an intellectual disability and an associated autism diagnosis. It makes me feel very sorry for these parents, for all their stupidity and negligence. Because my own experience has been that on the one hand mainstream medicine can be fundamentally disinterested in the situation in which you’ve found yourself. I have asked doctors if they can tell me why this happened some will say (and I quote), “does it matter?”. Which of course in a way it doesn’t (he’s the same boy, no matter what) but in other ways it absolutely does – for acceptance and understanding not least of all. Plus of course historically medicine had helpful responses to autism such as the “refrigerator mother” theory that it all arose from an unloving parent. While my son’s various physical needs have been dealt with by the medical community well and effectively, I would count the help with his intellectual disability as slim at best and none at worst.
On the other hand, the bullshit, quackery dr. google nonsense peddled to parents of children with an autism diagnosis is horrifying. I could cure my son with anything from the right diet to the right therapy such as “chelation” etc. etc. None of that is likely to do a damn thing, and some might be actively harmful, but if you read the internet or even talked to a lot of parents you’d be lead to believe it was the silver bullet. I have felt quite a bit of guilt over the years for my refusal to try any of it. Is the cure out there and I’m just missing it because of my lack of faith or imagination?
So you end up with parents burdened by the grief of their child’s diagnosis, with mainstream medicine ranging from disinterested to unhelpful to malevolent, and alternative therapies promising the world.
What do we think parents are going to do?
I know this isn’t the situation of these parents, whose child was not disabled and whose condition modern medicine in fact knows how to fix, but I think they operate within that broader paradigm, and I can’t judge them that harshly.
I agree that the law needs to respond. I think the criminal law is the bluntest of blunt instruments, and I doubt its utility to effectively address this situation. But I think regulation and rules governing alternative medicine providers is essential.
Again – great post Omar.
Alice,
I agree that the legal system is a very blunt instrument, and only to be used in the worst of cases. I think this is what we might have here, given the circumstances.
I’d much rather see a greater emphasis on education, in our schools and all levels of society, hopefully before people adopt these unsubstantiated ideologies. Scientific literacy can go a very long way.
I also agree that regulation of these alternatives is needed, but this is already happening. The flip side is that some people critique their inclusion under the RHPA as giving some of these alternatives more credibility in some circumstances than they deserve.
Generally I say consumers should have the freedom to make choices about healthcare, including choices about remedies that don’t work and potentially are a waste of money, as long as they aren’t being harmed by it. In this case we have a minor who is being harmed by the decisions of others, and that’s an entirely different situation.
As a non-lawyer, I’m interested to learn the actual legal framework behind these charges and what else they’re used for. But in terms of the analysis, I think you’ve incorrectly conflated various categories of parenting decisions, and I think there is a great deal more dimension to this situation.
The anti-vax discussion is never complete without one important piece of information. It is that vaccine-damage suits have succeeded and payouts have been made. So, let’s not lean too heavily on the “vaccines are safe and anti-vaxxers are dumb” narrative.
Now, why are vaccines as safe as they are? Because (a) some people vaccinated their kids and there was damage, and (b) some people didn’t vaccinate their kids. The pharmaceutical industry consists of organizations designed to learn, change, and adapt, and they have done so, and the courts have facilitated that process. Vaccines have evolved: http://www.immunize.ca/en/publications-resources/questions/additives.aspx and http://www.historyofvaccines.org/content/articles/vaccine-injury-compensation-programs, but obviously you can do your own searching.
And by (mostly) not vaccinating my kids when they were babies, I contributed to that pressure. Change requires risk. There is a parallel to the story of circumcision, the debate and research over which is of course also ongoing, with people randomly assigning their sons to the study or the control group. As I see it, life is always an experiment.
While I too have massive problems with what these parents did, the father is correct insofar as what we are looking at here is a choice between state care and parental care. And if parental care is unsatisfactory, state care has been proven over and over again to be infinitely worse. Living as we do in the wake of residential schools, this cannot be forgotten. There is actually a debate raging with some heat at the moment in Norway, which has stepped up child apprehensions dramatically, often of Romanian immigrant parents, and such increases are occurring in other nordic nations. And Scotland, a few years ago, passed a “Children and Young People Scotland Bill” (don’t quote me on that name) that assigned a “supervisor” of sorts to each child, a social worker or nurse for example, who shares decision-making authority with the parents.
When we look at Ezekiel’s death, we reflexively compare it with a narrative in which Ezekiel remains healthy. But the true alternative picture might be all four siblings removed from their parents and placed in foster or institutional care. In which case, history tells us the risk of death or other adverse outcomes is far higher than in parental care, on the whole.
The National Post carried a column in which someone made a comparison between the native children recently permitted by the courts to choose “native” over “modern” medical therapies for their leukaemia, and this case in which the parents made the same choice, and are looking at jail time. That, I think, poses another interesting question.
The aspect of the parents having a natural remedies company is another tempting rabbit hole. I’d liken it to having a parent who sold Pintos and therefore drove the family around in one. What are you going to do? Everyone can reproduce, and has a right to live their lives. It is freedom itself, not just the internet, that is a double-edged sword.
Karin,
Do you have specific examples of anti-vaccination lawsuits which have been successful in demonstrating causation of autism?
I make no conflation with the two different set of decisions the parents here made, but the second and fatal step was made because of the first, and would have been unnecessary if the child was vaccinated.
Hauser refers to Collet Stephan’s interview, describing her own independent research into the area prior to Ezekiel’s death:
This is a heavily misguided approach. Do-it-yourself medicine might be fine for preventative health or health promotion, but not for emergency situations.
You might even say it’s criminal.
Full agreement with Omar Ha-Redeye.
I was a registered nurse for over 30 years, and in retirement have developed a keen interest in Canadian law, both Civil and Criminal.
During my 15 years working ER, I had hundreds of patients I cared for. Over time a health professional learns to “filter” tragic cases from their memory. There is one particular case that I cannot erase from my mind, and it is pertinent to this topic. What is important to keep in mind is that this event occurred in 1994, in the very early internet years.
A young girl was brought in by her parents, and she was obviously extremely ill with a high fever. In a very short time our ER physician made a diagnosis of Meningitis. What followed was a frantic effort to prevent the infection from progressing. This young girl rapidly went from an alert state and a pale complexion to unconsciousness and the deathly black spots and cyanotic extremities that are hallmarks of a well progressed Meningitis. Our efforts to save her were in vain, and she died within 3 hours of arriving. Her blackened face and body is etched in my memory.
What was disturbing (to me at the time) was that the parents had not vaccinated this girl, and also had tried to treat her deadly infection with home remedies and advice from a homeopathic book. People that chose not to vaccinate were relatively rare, or at least were publically unknown, at the time.
Even if this little girl had been vaccinated for other preventable diseases (which she was not), there was no meningitis vaccine for children in 1994. This is somewhat beside the point. The parents chose to not have their child treated by a physician, or even have someone (like a nurse) look at her. Had she been seen and treated earlier, she would have survived. The parents chose their daughter’s fate for her.
To this day, I will never understand how people trade their inherent human “common sense” in favor of unproven, useless and potentially dangerous treatments and practices. Even in the face of imminent death, some people prefer the anecdotal evidence of testimonies and pseudo practitioners instead of established science.
Sometimes I wish I didn’t have knowledge about medicine that I do. I wouldn’t be so aggravated by people who tell me with conviction on how their aunt Mary was cured of cancer with coffee enemas and ginger root.
The necessaries of life were not provided by the parents in the Alberta case. The parents are wholly responsible under the law, and every other “law”, for the death of their child. The lack of remorse by the father is just mind boggling.
Omar, the decision not to vaccinate and the decision not to seek care were two separate decisions, as the subsequent response by Randall makes clear. As for vaccine damage lawsuits, I refrained from posting too many links, but it was an easy google search. There is a special court in the US, and I’ve read about payouts in other nations. Autism is not the only issue (nor necessarily an issue at all), but other damage happens. https://en.wikipedia.org/wiki/Vaccine_court
The beauty of the law is its ability not only to break issues down into its component parts, but also to shed the emotion. That doesn’t mean having no emotion – far from it, I imagine you can use it to find a way to empathize with both sides of an issue, depending on which one walks into your office first. It is not a crime to not seek medical care for oneself. And children ARE vulnerable to harm at the hands of their parents. Sometimes it’s criminal, sometimes it’s not. Once you do seek medical care, diagnosis is separate from treatment. Treatment is by consent. And so on.
Which of those things are you going to make compulsory to the point of removing kids? Before you make your decision, consider the issue of medical error: http://www.bmj.com/content/353/bmj.i2139#pq=NN25U9
Again, the alternative to a child dying is not always a happily-ever-after story for that child or for those who come after.
As for the father’s lack of apparent remorse, he just seems to me to be able to see past the emotion to the legal infrastructure of the situation, which includes the best interests of his three surviving children who do NOT have meningitis. He’s also probably in a bad spot legally; if he expresses regret he may prejudice his legal prospects.
Randall, your comment about knowledge is interesting. I used to be a dietitian, and my practice days were in the heyday of the pearl-clutching about saturated fat, and a few other views that are now being punted unceremoniously to the curb. I have reason to blush for some of the knowledge I thought I had. And the most embarrassing thing is that the better information was already circulating at the time and I was part of discounting it. I can sleep at night because I was fairly quick off the line on some topics, at least. But I’ve never lost sight of the degree to which expert insiders are buffered from new ideas by what they think they know. I’m not talking about urine treatments for cancer, but the very foundations of the “expert” knowledge base: the complacency we had about sugar, for example.
When people don’t turn to the experts as readily as you think they should, that is usually a sign that the experts are failing (as my field did). I actually do agree that not taking the child in for a proper diagnosis is highly problematic, and I credit the parents with the belief that had they done so, they would have given the child useful drugs. But why do you suppose people are reluctant to go in for diagnosis to begin with? Consider the experience that zillions of parents have had where they go for diagnosis and are then tossed a prescription that they are pressured/fearmongered into administering – the issue of consent to treatment, separate from diagnosis, or a choice of treatment options, having been all but erased by the “experts.” So welcome to our antibiotic-resistant world – and thanks, doctors.
That is what created people like these parents. So if you didn’t speak up from your position of expert when information surfaced about the wild rates of overprescription of antibiotics for common colds and earaches, then I’d say the blame is being somewhat wrongly placed on the parents today.
Karin,
I’m glad that you bring up the Office of Special Masters of the U.S. Court of Federal Claims, as it is frequently referred to as some sort of neutral arbiter substantiating anti-vaccination claims.
The National Childhood Vaccine Injury Act did not recognize, as many people wrongly assume, that vaccines are inherently dangerous. It created a no-fault regime for petitions for compensation around vaccines. Even then, over 2/3 of all petitions were denied. There has not in fact been any proof of causation through these mechanisms, which was the question I originally posed to you.
The Act also required the creation of a program of study and mandatory report to Congress over whether vaccines were dangerous. None of these studies concluded there was a causation of autism.
In fact recent cases such as Cedillo v. Secretary of Health and Human Services have illustrated that the lack of proof for compensation under the Act meant that compensation has been provided even when the scientific evidence runs contrary to the petitioner’s position. Special Master Hastings in that case applied the Daubert standard to the expert witnesses brought forth by the petitioners, and specifically looked at the relevant and reliable evidence advanced by them. Hastings stated,
Hastings also had some choice words to say for the physicians relied upon by the petitioners,
The United States Court of Appeals for the Federal Circuit has upheld this decision.
What all this means is that the consensus of the scientific, medical and legal communities is that the bulk of the arguments advanced in these types of claims are not based on solid principles.
The Internet is full of strange and fanciful positions, and people are entitled to believe them. When they rely on these beliefs to withhold life-saving treatment for a child, we have an entirely different situation. The Court in A.C. v. Manitoba (Director of Child and Family Services) has already upheld the constitutionality of this principle, and it’s not much different when applied in this context.
Omar, again with appreciation for a better understanding of the legal framework, I feel as if you are patronizing me, and in doing so, deliberately missing most of the points I’ve made and attributing to me points that I did not make. I did not mention autism, nor did I make any pronouncements about “causation.” There are things in both science and law that cannot be proven. One must live with uncertainty, on both causation and safety.
As Randall’s contribution made clear, this is not about the internet. This has always happened, from time to time. It is also not an anti-vaccination case. But as it seems that you did not read most of my previous comments and that you aren’t interested in finessing your original analysis, there is little to be gained by me commenting further.
Just keep in mind that for every parent who causes their children’s death, there is another who saves theirs with heroic, self-sacrificing acts. Parenting is complicated, and when it comes before a court, there are no easy answers.
Karin,
The point of this post was not about some of the commentary you have tried to introduce. I don’t disagree that science evolves and understands things better over time. But that one “important piece of information” that “vaccine-damage suits have succeeded and payouts have been made” is actually not true from a legal causation perspective.
The point of this post was in fact about the dangers of the Internet, in particular in the context of the anti-vaccination movement, whose members in this case engaged in actions that resulted in the death of a child.
It was also about how those within the movement are enormously resistant to evidence, either from medicine, law or science, about how their views are significantly flawed.
To combat this, the Ontario government has just introduced legislation with Bill 198 for a mandatory evidence-based science class on vaccinations for all parents who want to have their children exempt from immunization.
Based on the research above this is a good move, but these parents are still likely to resist this information and perhaps become even more entrenched in their views.