Friday 14 November 2014

Criminal Negligence?: Have the Lives of Two Local Young Girls Been Compromised Because of "Cultural Sensitivity"?

I have been following the stories of two young girls from the area, one from New Credit, the other from Six Nations, whose parents have made atypical choices in the care of their 11 year old daughters who have acute lymphoblastic leukemia.  In almost all cases, with the assistance of oncologists, parents will obtain the awareness that there is only one single form of treatment as of today that has been scientifically validated to work with this pernicious and otherwise inevitably fatal disease.  This treatment is chemotherapy.

Over the last few months I have not spoken about this troubling situation, it is very very sensitive and one close to my own training and expertise.  Since I have no formal involvement in either case, it has been my decision to keep my opinions to myself.  That all changed with the release of new information about the treatment that these children have been subjected to.  My training is in specialized medicine from McMaster University, the hospital facility which has assessed both girls and has recommended what is today standard treatment.  I have also had a role in assessments for the Children's Aid Societies in Southwestern Ontario, and testifying in Court as an expert witness. 

Alas, the matter has become politicized and any disagreement with the decision of not only the parents of the girls, but large segments of the New Credit and Six Nations communities, inevitably leading to charges of "racism" and "cultural insensitivity".

The real clash here is between superstition and modern medicine, pure and simple - which has recently been clarified when we learn that "traditional healing" really means relying on the "expertise" of a quack.

In both cases the parents of the girls decided that they would withdraw consent to treatment, and opt for "traditional healing".  The age where a child is allowed to take control of their own care and treatment is 18, so an 11 year old child is under the legal care of the parents, and if the latter fail to place their children's needs first and foremost, the "state" in the form of the Children's Aid Society (CAS) must step in and, if necessary, apprehend the child to meet the litmus test of, "what is in the best interests of the child".

So, to complicate the matter, there is a clash between Western values and aboriginal viewpoints - right?  No, that is incorrect.  It involves a situation where the parents of both girls have been told that if their daughters continue with the, admittedly unpleasant, rounds of chemotherapy, then the girls would have a 90 to 95% chance of a total cure.  So it is almost a guarantee that with the guidance of expert oncologists, the children have a very high chance of full recovery.  What if the parents don't accept this wisdom built of years of medical practice standing on the foundation of modern science?  Unfortunately the course will be downward, with possible temporary remission, but eventual relapse and death.  The latter could come soon if the children are withdrawn from McMaster's treatment recommendations.

What is important to understand is the nature of "traditional healing".  What does it entail?  No one has given a clear outline of the programme that will bring about healing.  Does it involve aboriginal wisdom about the property of herbs and other plants?  How sure can anyone be that this regimen will work?  What is the probability of success?  Is it near the 90 to 95% chance that chemotherapy offers?

Apparently, as has been recently revealed, the so called "traditional" treatment is actually an "alternative" treatment.  It does not even come up to the standards of naturopathy where legitimate practitioners know their limitations - and acute lymphoblastic leukemia is one of them.  A Canadian Broadcasting Corporation (CBC) investigation found that a "doctor" from Florida had visited the Six Nations community twice (and to packed audiences if the video is in fact from those visits).  He convinced the audience that when the doctors in "Toronto" fail, then people come to him.  So what are his credentials?  In fact he is a doctor of nothing.  His "clinic" is a message establishment which also offers raw vegetable foods, intravenous vitamin C, cold laser light therapy - and that is about it.  The "qualifications" of the clinic's "doctor", and the treatment administered is shown in the video here.  What is crystal clear is that this "center", the "Hippocrates Health Institute" in Florida is "a centre that focuses on nutrition and naturopathic therapy" and as such, has nothing to do with "traditional healing" just quackery and snake oil sales where the bottom line is money - $18,000 to be specific.  Someone without any formal credentials makes phony claims of success and goes unpunished, and like the doomsday cults when the day passes and the world does not end, he and they will come up with some rationalization and keep going because the rational mind has been suspended in the service of false hope - the idea that some "organic" treatments are superior to what modern medicine has to offer.

The video reported that the little girl from New Credit went through the three week programme, returned to the home of her parents, and is now in critical condition.  This is positively criminal when a few months back, physicians could hold out an over 90% chance that there would be a full recovery.  Alas, the girls fate has been sealed due to ignorance and ineffective action.

How could any rational clear thinking individuals be led down the garden path by such charlatans?   Unfortunately at Six Nations there seems to be a susceptibility to proposals of this kind.  Some recent examples include the acceptance of the unproven technology of an entrepreneur from Nova Scotia to "disintegrate" not just incinerate the mounting piles of garbage at Six Nations.  The billowing clouds of noxious fumes have led to a moratorium on this unproven technology, but it is apparently being revived in the hope that some miracle will emerge.  Then there is the hoaxer who convinced a substantial part of the community that children were murdered at the Mohawk Institute (a residential school that closed in 1970) and their bodies stuffed in mass graves.  The hoaxer even found bone (later proven to be animal), and members of the community used ground penetrating radar to explore the area for the "bone pits".  There were never any such murders - common sense would tell you that there would have been no way to keep that sort of thing a secret.  The school is on the doorstep of Brantford, and is situated on Reserve land.  I found the burial records from the Mohawk Chapel which is across the street from the school, and there were entries for children who died while at the Mohawk Institute and the burial entries gave names, ages, Reserves, and the fact that the children were from the Mohawk Institute.  Finally, most people by this point have seen the light and the hoaxer is no longer welcome on the Reserve.  So for whatever reason, there is a large segment of the Reserve community willing to believe in quackery, which would never fly in surrounding communities where reliance is placed on individuals who have a proven track record and the expertise to provide solid verifiable information.  Thus people in say Caledonia are less likely to be "taken in" by false beliefs and to be time and again disappointed when the scammers show their true colours.

In the present case the community has rallied around the families of the two girls and fund raisers have provided money to fly the families to Florida for what was supposed to be "traditional healing" but was in fact just another fly by night scheme that will result in the death of two young girls who had put their trust in the adults of the community including their parents - ignoring the concerns of the medical establishment in Ontario.

When I was trained and certified it was made clear to me that above all else a practitioner must take into account "the best interests of the child".  This is also in the standards of practice and in the law which governs the actions of the Children's Aid Society (CAS).  The Brant County CAS has been told that they are not welcome at Six Nations, and that due to complaints (what CAS does not get complaints since they apprehend children from unfit parents) Six Nations would be forming their own child protective services.  This plan is totally without any coherence, and puts the CAS in the position of having to do their job (and they are mercilessly criticized if they don't act promptly), and are expected to be able to do this work from Brantford rather than Ohsweken on the Reserve.  So the Brant County CAS is in a tenuous position.  Perhaps this is why they have backed away from the whole situation and will not apprehend these two girls in need of protection.  They know that the community would come together to ensure that the apprehension never occurs, so the CAS has washed its hands of the matter, forcing McMaster to take them to Court to ensure that they do their job.  By the time that it all wends its way through the Court process nature will likely have taken its grim course here and the "problem will have been resolved". 

The question will always remain.  What would the outcome have been in the CAS had apprehended both girls while there was still a window of opportunity for the chemotherapy to work?  You can't wait months then intervene.  The child needs to be in treatment immediately upon diagnosis - there is no other rational interpretation of the facts.  Thus the parents decided what is best for their children, despite the fact that is obvious to all of us in the medical field, that the parents decisions are bad and that the children will pay the ultimate penalty for their failing to carry out parental obligations.  The Reserve communities will not lay the blame at the doorstep of the parents - the community is clearly playing the role of enablers where they have put up barriers such that everyone except the professionals at McMaster is afraid of offending, and appearing to be "culturally insensitive".  This is not about culture, it is about physiology.  The only way to reestablish a homeostatic balance in the bodies of these girls would be to follow the only reliable plan that has a reasonable chance of success - chemotherapy. 

Since the parents opted to go their own way and find "alternative methods", the death of their children will likely weigh heavily on their shoulders for the rest of their lives.  How can one live with the knowledge that their poor decisions played the key role in the demise of their own children.  The community saw fit to rally around these parents and so must also accept the responsibility for the decisions.  It is all so painful, so sad.  Vulnerable children who must of necessity rely on the best judgment of their parents and other adults, and being profoundly let down by them - even if well intentioned.

In addition to the parents and the Six Nations and New Credit communities as seen here and here, also "blame" can be directed at the Courts as seen here, and particularly here with the Courts decision to dismiss McMaster's case and permit the parents to continue with whatever form of treatment they deem appropriate.  Furthermore the role of the Brant County Children's Aid Society, as seen here and here needs to be carefully considered.

To this day I still stand by my training and would consistently act "in the best interests of the child".  Since in this case it is a simple matter of following the treatment with a proven track record, we do not even enter any sort of gray area.  It is cut and dried and there is no need to be "culturally sensitive" about the primary regimen, although it would be entirely appropriate to encourage the parents and community to combine true "traditional healing" with what world wide modern medicine has to offer, which is precisely what the eminent much respected Six Nations scholar - physician Dr. Oronhyatekha (Peter Martin, 1841-1907), recommended in such matters.  See here and here for his life story. 

A very recent article, which echoes exactly what I have maintained in the present posting was penned by a reporter for the CBC and can be found here.  The obvious need to focus on "the best interests of the child" is clearly stated in this article.  So many people seem to have lost sight of this very basic premise in the fields of child welfare and medicine.

Alas superstition reared its ugly head and reason and rationality goes out the window - even in 2014 - and two precious children will be adversely impacted by this predilection.  Also just as apparent, there is a double standard in dealing with "aboriginal" and non - aboriginal children.  The parents of the former get a free pass to do anything or nothing as they see fit to provide life saving therapy to their children.  However the latter group would come under the CAS rules, the child would be apprehended, and the parental rights suspended until the child has finished the treatment required to save their lives.  A 90 plus percent chance versus a zero percent chance.  This should be a no brainer to everyone involved who has the vaguest understanding of statistics and probability.  Sad, sad, sad.

Edited: 15 November 2014.

Update:  11 December 2014.  Recent information on the controversy relating to the scam artists posing as healers has come to light.  The parents of the Six Nations and New Credit girls, and communities, have turned their backs on proven science and modern medicine in the unwarranted expectation of obtaining a "cure" for the two girls with leukemia from a quack who is exposed as a total fraud here.

DeYo.

13 comments:

  1. There is a slightly higher than zero chance of the cancer being cured by the first round of chemo. It's not a good chance, but it's enough that the quacks take credit for it while always blaming real medicine for patient deaths. (Just enough to make a few miracle cure testimonials and keep the suckers parted from their money.) More than likely, though, there will be news of two children dying, which makes me very sad. Best of luck, DeYo, to you and to the children and their families.

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  2. Jerry A., unfortunately it is necessary to have the full round of chemo after initial diagnosis - delay reduces the chances in proportion to the time until the chemo is begun. You can't start and stop this form of treatment. Removing a child after the first round as you say does not raise the chances much more than zero. A patient has to stay with the plan to open the door to the 90 plus chance of survival.

    Indeed there are remissions that will be held out as anecdotal evidence of the efficacy of the quack treatment. I fear that the die has been cast - it is only my training and experience in this field which keeps me from tearing my hair out. In the past I have always had the CAS on the same page. Not so this time.

    These girls have been sacrificed to meet the needs and wishes of the adults of their community. Most of us would turn cartwheels to see that our children obtained the best chance to survive and thrive. They had one chance and one alone. The option was outright rejected and superstition has put the lives of innocents in dire peril. Who would knowingly do that ......................................... DeYo.

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  3. Can we talk? I'm a producer with Global's national current affairs show 16x9 . . . claude.adams@globalnews.ca

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  4. Hello Claude. Will be in touch. DeYo.

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  5. Would a biopsy, the accepted diagnostic tool used by oncologist affect your perspective?

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  6. Additionally, what are your credentials? Are you an oncologist or a medical doctor?
    What Mohawk territory were you born and raised in to have such a "factual" opinion?What is your expert opinion on how nutrition affects health?

    You have also published an article regarding the children that died while in care at the Mohawk Institute. No one will dispute the names that are in the Anglican files because that is now a matter of record. My concern is where are they buried or where is the Mohawk Burying Grounds located. You write that children had the opportunity to just walk away or hitch a ride out of the "mushhole". Absolutely not true. You have no idea what it was like in this institution. You have no knowledge of what was going on especially during the 40's & 50's. Sure some people say they were not harmed and that is wonderful, that is the way it should have been for all the children but it is not the reality of what was going on in this institution and many others across this country. You need to do more thorough research on this subject. Talk to more than the few survivors that say all was okay. The Mohawk Institute did not take children from this community only. Many children from various "reservations" in Ontario, Quebec, NWT were brought to the school. How where they to hitch a ride out of there? You lack so much knowledge about residential schools. As a scientist you are sorely lacking in facts.

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  7. My Orenda, circumstances have keep me out of the loop of late. I have not even read any local newspapers nor have I been in touch with friends or kin in the Grand River Territory. This is the first time in months that I have looked at my blog - the number of viewers on this posting is off the charts. Will return to the fray in short order, and hopefully pick up where I left off. D.

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  8. Wahsontiio Hill. This posting is about the two little girls with leukemia. Your comments are about the Residential School. Please keep the focus on the subject under discussion. Thank you. DeYo.

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  12. I deleted the above three comments because they spoke of matters in Africa and Georgia respectively and were entirely irrelevant to the posting. In essence the first two were repeat postings, and all three were spam.

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