Should young children make medical decisions?                              

Often many children and adults for that matter balk at taking medicine or accepting medical treatment. What follows is an interesting but sad tale about a young girl who didn’t want to receive chemo therapy for the Leukemia that was ravaging her body.

Leukemia can be a fatal disease and for many years, there was no cure. Back in 1947, I lost a friend to that disease because there was no cure available to him.

                   

Leukemia usually starts in the bone marrow, where white blood cells are produced.  In that disease, there is an overproduction of white blood cells that are abnormal in an early stage of the maturation process. These leukemia cells are non functional and are unable to do the job of healthy, mature blood cells. In addition, their presence in the bone marrow crowds and prevents the ability of other normal blood forming cells to do their jobs. This leads to the signs and symptoms of leukemia. 

When acute leukemia is diagnosed, there are usually already a large and rapidly growing number of leukemia cells in the victim’s bone marrow. Signs and symptoms may have been present for less than three months or even as little as a few days. On the other hand, chronic leukemia develops much more slowly and produces cells that are more functional than acute leukemia.  As such, the signs and symptoms of chronic leukemia may arise over a very long period of time, or not at all. In fact, many cases of chronic leukemia are found by chance during routine check ups.                                      

The most common symptoms of leukemia are vague and non-specific. As a result, they are often explained away by the patient as “coming down with something” or getting “run down.” In most cases, this is caused by a decreased number of red blood cells in a person’s bloodstream, or anemia. This prevents adequate oxygen being transported to one’s tissues and muscles, leaving that person’s body feeling fatigued and weak.                                                    

Leukemia cells are not only abnormal or too underdeveloped to help a victim’s body fight off infection; they also inhibit the ability of the bone marrow to produce healthy white blood cells. As a result, people affected by leukemia are very prone to developing infections. Common sites of infection include the mouth and throat, skin, lungs, urinary tract or bladder, or the area around the anus.        In some cases, leukemia cells can cause a victim’s body to release chemicals that stimulate his or her brain to raise the body temperature of the victim. Fevers can also be caused by an infection. The abnormal production of leukemia cells prevents the bone marrow from making adequate numbers of healthy blood cells, such as platelets (fragments of cells that clump together and stop or slow bleeding when an injury occurs to a blood vessel). When there are insufficient platelets,  bleeding may occur in the form of nosebleeds, heavy menstrual bleeding, bleeding gums, bruises and tiny red spots under the skin. Bone and joint pain is most common in areas where there is a large amount of bone marrow, such as the pelvis (hips) or breastbone (sternum). This is caused by the crowding of the marrow with excessive numbers of abnormal white blood cells in those areas.  

Chemotherapy is used to fight of the disease. Traditional chemotherapeutic agents are cytotoxic, that is to say they act by killing cells that divide rapidly. Unfortunately, chemotherapy has nasty side effects. Hair loss usually begins a week or so after the start of chemotherapy but the will begin to grow back in 6 to 8 weeks after completing the therapy. Loss of appetite is common.  Most people can live with these two side effects.

Unfortunately, nausea is one of the most dreaded side effects of chemotherapy, but there are ways of managing this symptom which have come a long way in recent years. The patient’s doctor may prescribe anti-nausea medications at the time of the treatment in an effort to prevent nausea from occuring altogether. The use of medical marijuana has proven to be effective but it is not prescribed in every country. Diarrhea can be a dangerous symptom, which often prompts a change in the dose of chemotherapy or discontinuing treatment altogether. Dehydration is also a concern if diarrhea is present.

The girl I am writing about whose first name is Makayla, was a member of the New Credit First Nation in Ontario and she was suffering from a unique form of Acute Lymphoblastic Leukemia, the most common form of childhood cancer. Under proper treatment, doctors estimate it has a survivability rate as high as 80% for children. The hospital said that in Makayla’s case, the chances of survival foe her was 90% to 95% if she continued with the chemo treatment a bit longer. That form of treatment is the only cure for that form of Leukemia.

After 11 weeks of chemotherapy at McMaster Children’s Hospital, Makayla opted to refuse further treatment in favour of indigenous remedies and a stay at the West Palm Beach Hippocrates Health Institute in Florida. That alternative health spa in Florida claims to successfully treat serious illnesses with the use of lasers, colon hydrotherapy and a strict diet of raw food and wheat grass. That is hardly the way to cure Leukemia. Only a quack would abandon the recognized treatment for that disease. The costs of her being treated at that spa was $18,000. I don’t know who paid those costs.

The spouse of one former patient had this to say about this specific spa;

“I had to rescue my better half from this place after a 3-week stay and over $20, 000 spent. She lay wound up with excruciating stomach pain and an infection due to this ‘health institute’. The place is one of the biggest rip-offs I have ever seen and I can tell you so much more horrendous things about this place. She wound up in a real clinic to deal with the illness that she acquired from Hippocrates’s phony doctors and their treatments. This place needs to be exposed. I heard of a woman, who because of them, needs an enema just to go to the bathroom 3 years after being there. The place is absolutely disgusting considering how much money goes into it.  You would think it would at least look nicer.”

Another complainant about the West Palm Beach Hippocrates Health Institute in Florida said;   

“It is a waste of money and another health 'mill' that makes big promises and delivers nothing more than what you would get from purchasing a book on Amazon, watching one episode of Dr. Oz on television, and/or visiting your local health food store. The formula works for them but not for those suffering life threatening diseases. A massive disappointment and one to best avoid. Take the time to read the negative reviews that are all true. I would never recommend it to my friends.”

Former employees of the West Palm Beach Hippocrates Health Institute have issued a claim against that outfit. They claim that that the Institute is a scam.

Another person complained by saying; 

“The one in West Palm Beach was huge disappointment. Way overpriced, paying $6,000 for 2 weeks for private room, you don't even have a private bathroom. And if you try to save money ($5,500) by sharing a room, you can end up with four people in the room. Open house reminded me of a presentation of Time share. My friend who had a health issue and was told that with all those doctors on staff to answer her questions if she participated in the program, she would have to make 30 min phone appointment with one of the doctors and pay $150 for the information she was seeking. I'm not joking. Pay$150 to them for telling you it's OK for you to come! What a rip off! Don't waste your money.”

That is the so-called healing spa that Makayla’s parents wanted to send her to and where she was sent. As to be expected, that spas’s treatment didn’t work. The poor girl died. Had she continued to receive the chemo treatment, there was an 80 to 95 percent chance that she would have survived.

I can appreciate Makayla’s desire to end the chemo treatment since it was making her nauseous all the time however, her decision to stop that treatment is what killed her while suffering from a stroke. Makayla’s specific cancer is not consistent with a fatal stroke unless the cancer had spread to her brain.

The parents had the audacity to blame McMaster Hospital for her death, claiming that it was the chemo treatment that killed her. Give me a break. Their daughter would still be alive today if her parents hadn’t stubbornly insisted that the West Palm Beach Hippocrates Health Institute was the only place where she would be cured.  The cancer having spread to her brain caused her death. It is possible that had she continued to receive chemo therapy, the cancer may not have spread to her brain.  

There is another person who made it possible for the young girl to die from Leukemia. It was Mr. Justice Gethin B. Edward, an Ontario judge who granted Makayla’s parents permission to remove their daughter from the McMaster Hospital and send her into the money grubbing hands of a quack doctor in Florida. 

When Makayla’s parents told the hospital that they wanted to take her out of the hospital so that she could get treatment in the spa in Florida, the hospital brought in a motion to the Superior Court in Brantford, Ontario for an order that the girl remain in the hospital and continue receiving the chemo treatment until the disease is cured. I couldn’t find her particular  case however there was an identical case brought before that same court for the same reasons. The girl’s name referred to in that case is eleven-year-old  JJ. She too was from New Credit First Nation also.

The transcript of the JJ’s court hearing tells of the same issues that would apply to that of Makayla also. For this reason, I will tell you what was going on in 11-year-old  JJ’s case.

At that hearing, Dr. Marjerrison reminded the court she was treating the 11-year-old child with a disease, which, if left untreated, would cause her death. As it turned out, she was absolutely right. The lack of the chemo treatment for Makayla caused her death.

An issue raised in the court was involving the rights of Aboriginals (Native Indians).  In Canada’s Supreme Court, the chief justice of the court said in part with respect to the rights of aboriginals;

“Where an aboriginal community can demonstrate that a particular practice, custom or tradition is integral to its distinctive culture today, and that this practice, custom or tradition has continuity with the practices, customs and traditions of pre-contact times, that community will have demonstrated that the practice, custom or tradition is an aboriginal right for the purposes of section 35(1) of the Constitution Act of Canada.”

That particular section states that the existing aboriginal and treaty rights of the aboriginal peoples of Canada are recognized and affirmed.

  

Now of course this doesn’t mean that aboriginals can break the law or kill babies as some sort of rite but it does give them the right to adhere to their customs and beliefs.  Now one of their customs involves healing procedures etc. First Nations healing is a holistic approach to health that integrates traditional healing practices such as special ceremonies, rituals and herbal medicines. However, alternative therapies have not been scientifically proven to be safe or effective in the treatment of cancer.

Makayla’s and JJ’s parents preferred to use the holistic approach as the means to curing their daughters. But as we all know, it didn’t work for Makayla since she died however, so far JJ hasn’t passed away.

How anyone of a sound mind can presume that Holistic treatment is the best means to cure Leukemia  beggars the mind.

One of the issues was whether or not JJ was capable of making a life and death decision.  One of the doctor’s testifying said;

“In the days that followed, she was not able to describe her symptoms and did not address questions directly asked by the medical team, but [instead] looked to [her] mom for her responses.  I have found that she lacks the ability to understand her diagnosis and its therapy, nor could she possibly fully appreciate the consequences of the decision to stop chemotherapy.”

This meant that any decision the judge made was at the specific request of the girl’s parents since the girl’s position in this matter was not really considered. All she wanted was the chemotherapy to stop. I doubt she had any idea of what treatment she would get if she left the hospital.

The evidence in the hearing was also clear that on the 27^th of August, that during a meeting with the hospital staff, the girl’s mother had expressed her strong faith in her native culture and was discontinuing her daughter’s chemotherapy treatment to pursue traditional medicine which she and her husband believed would help to heal her daughter.

I can’t fathom how that silly woman could believe that special ceremonies, rituals and herbal medicines would cure her daughter of Leukemia. If the child was suffering from Ebola, would the parents still deny the drugs that have cured sufferers of that fatal disease and instead rely entirely on holistic medicine? If they did, their child would definitely die. The proof of this statement is that the holistic treatment of the West Palm Beach Hippocrates Health Institute in Florida didn’t cure Makayla of Leukemia either and as predicted by her doctor—she died. 

The applicant (the hospital) argued that the decision of JJ’s parents to discontinue chemotherapy treatment for their child was a child protection issue and its proper adjudication was properly before this court under the Child and Family Services Act.

This kind of case persuasiveness exhibits the need for one forum (such as a court) to determine whether a child is in need of protection for the purposes of medical treatment.  Often these cases are emergencies.  As in this case, it may well be a matter of life and death, with very short time frames.  One forum should be determining all of the issues relevant to the inquiry with the benefit of the entire context and hearing all of the evidence.  Apart from the costly and often confusing procedures for the parties if a bifurcated proceeding was adopted, there are significant adverse cost consequences for the health system, the justice system, the Board and the welfare of the child involved. Nevertheless, this particular case had to be dealt in court to its fullest.

Chief Justice Lamer of the Supreme Court said;

“To satisfy the integral to a distinctive culture test, the aboriginal claimant must do more than demonstrate that a practice, custom or tradition was an aspect of, or took place in, the aboriginal society of which he or she is a part.  The claimant must demonstrate that the practice, custom or tradition was a central and significant part of the society's distinctive culture.  He or she must demonstrate, in other words, that the practice, custom or tradition was one of the things which made the culture of the society distinctive—that it was one of the things that truly made the society what it was.”

That is all fine and good but should it deny a child the right to live by advocating her refusal to receive medical treatment that will save the child’s life?  I think not.

I strongly believe that native treatment can be effective to some degree when dealing with certain psychological and social  problems but I have no doubt that holistic treatment should not be used when surgical procedures have to be undertaken and when treating diseases. To think otherwise is to court disaster.

Based on my comments and observations of the JJ hearing stated in this article, it is my respectful opinion that Mr. Justice Gethin B. Edward failed to protect Makayla. He should have made a decision that holistic treatment was not enough to cure Makayla of her disease and therefore grant the order requested by The Director of Child and Family Services who in turn would return the child to the hospital.

As far as I am concerned, Judge Edwards misinterpreted the law with respect to the rights of Aboriginals. The Supreme Court said in R. v Van der Peet, a 1996 case;

“Any right, aboriginal or other by its very nature carries with it the obligation to use it responsibly. It cannot be used, for example, in a way which harms people, aboriginal of non-aboriginal.”

 

In my opinion, Judge Edwards decision harmed Makayla to the point that she died as a result of his decision.

 

I see a similarity in an aboriginal child’s case heard in 2009 and that of JJ’s and Makayla’s cases that was heard in the Supreme Court of Canada in 2009. It was A.C. v. Manitoba (Director of Child and Family Services.  C was admitted to a hospital when she was 14 years, 10 months old, suffering from lower gastrointestinal bleeding caused by Crohn’s disease. She is a devout Jehovah’s Witness and earlier in 2009, she signed an advance medical directive containing her written instructions not to be given blood under any circumstances. 

It is the religion of the Jehovah Witness that they do not ingest blood in any manner or for any reason whatsoever.

Her doctor believed that internal bleeding created an imminent, serious risk to her health and perhaps her life.  She refused to consent to the receipt of blood. The Director of Child and Family Services apprehended her as a child in need of protection. They sought a treatment order from the court under s. 25(8) of the Manitoba Child and Family Services Act, by which the court may authorize treatment that it considers to be in the child’s best interests. 

Section 25(9) of the Act presumes that the best interests of a child 16 or over will be most effectively promoted by allowing the child’s views to be determinative, unless it can be shown that the child does not understand the decision or appreciate its consequences.  Where the child is under 16, (as C was) however, no such presumption exists. The applications judge ordered that C receive blood transfusions, concluding that when a child is under 16, there are no legislated restrictions of authority on the court’s ability to order medical treatment in the child’s “best interests”.  C and her parents appealed the order arguing that the legislative scheme was unconstitutional because it unjustifiably infringed C’s rights under ss. 2(a), (freedom of religion) 7 (Everyone has the right to life, liberty and security of the person and the right not to be deprived thereof except in accordance with the principles of fundamental justice.) and 15 (Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law)  of the Canadian Charter of Rights and Freedoms. The Court of Appeal upheld the constitutional validity of the impugned provisions and the treatment order.

  

The matter ended up in the Supreme Court. The majority of the court’s position was as follows:

“When the young person’s best interests are interpreted in a way that sufficiently respects his or her capacity for mature, independent judgment in a particular medical decision‑making context, the constitutionality of the legislation is preserved. Properly construed to take an adolescent’s maturity into account, the statutory scheme strikes a constitutional balance between what the law has consistently seen as an individual’s fundamental right to autonomous decision making in connection with his or her body, and the law’s equally persistent attempts to protect vulnerable children from harm. The “best interests” standard in s. 25(8) operates as a sliding scale of scrutiny, with the child’s views becoming increasingly determinative depending on his or her maturity.  The more serious the nature of the decision and the more severe its potential impact on life or health, the greater the degree of scrutiny required. The result of this interpretation of s. 25(8) is that young people under 16 will have the right to demonstrate mature medical decisional capacity.  This protects both the integrity of the statute and of the adolescent.” unquote

Section 25(9) states that the court shall not make an order under subsection (8) with respect to a child who is 16 years of age or older without the child's consent unless the court is satisfied that the child is unable

(a) to understand the information that is relevant to making a decision to consent or not consent to the medical examination or the medical or dental treatment; or

(b) to appreciate the reasonably foreseeable consequences of making a decision to consent or not consent to the medical examination or the medical or dental treatment.

There is no doubt in my mind that mature adolescents have strong claims to autonomy, but these claims exist in rigidity with a protective duty on the part of the state that is justified by the difficulty of defining and identifying maturity in some children.

The court said that the more a court is satisfied that a child is capable of making a truly mature and independent decision on his or her own behalf, the greater the weight that must be given to his or her views when a court is exercising its discretion under s. 25(8). If, after a careful analysis of the young person’s ability to exercise mature and independent judgment, the court is persuaded that the necessary level of maturity exists, the young person’s views ought to be respected.  

Section 57.(1) and (2)  of Ontario’s Child and Family Services Act states that where the court finds that a child is in need of protection and is satisfied that intervention through a court order is necessary to protect the child in the future, the court shall make one of the following orders or an order under section 57.1, in the child’s best interests that the child be placed in the care and custody of a parent or another person, subject to the supervision of the society, for a specified period of at least three months and not more than 12 months.

I interpret the word “protection” in that Act to mean anyone such as parents) who intend to keep their child from receiving medical treatment. I interpret the words ‘other person’ to mean someone from Family Services or the medical doctor who will treat her in a hospital.  

Ontario’s Health Care Consent Act allows children to determine their own medical treatment so long as their capacity for judgment is sufficient enough to see any foreseeable consequences that may come about if they choose not to accept medical advice and/or treatment.

Admittedly, the Supreme Court concluded that if a child can make a mature decision about what treatment she will be given, the hospital and the courts should abide by her decision. That was what the judge in Makayla’s hearing decided to do. He would abide by the child’s wishes.

The problem as I see it was that Makayla might not have been able to make a mature decision as to her treatment for two reasons. The first being that anyone who chooses to refuse proper medical treatment for cancer because she or he is sick of it, and at the same time is told by the doctors that death will follow soon thereafter without that treatment; is not really mature enough to make that kind of decision. Second, she was probably suffering from the damage to her brain because of her illness which would also lessen her ability to make a decision like that. Now I realized that the judge may have not known what the condition of her brain was when he made that decision but the first reason should have been paramount in his decision.

As I said earlier in this article, I blame the parents and the judge for this fiasco. I also blame that quack in Florida by giving the girl and her parents false hope that his methods would cure Makayla of her disease. I certainly don’t blame the girl at all. Her choice to refuse the chemotherapy which was understandable to some degree turned out to be fatal. I think she really believed that she would be cured if she received only holistic treatment. If she wasn’t sure and instead hoped that the holistic treatment would do the trick, her hope was for naught.