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Letters in response to the March 21, 1999 program:
"Who should decide what is the best medical treatment for children?"
(The Tyrell Dueck case)

Rex,

A very thought provoking program. Thank you. I had a couple of thoughts to add to the discussion as it was going along, but it didn't seem to come up when I was listening.

Where does the intrusion end? What if my daughter or I choose to have a abortion? Right now it is legal, IF I can find a doctor who will perform it, and IF I am willing to endure the judgmental hordes outside the clinics. If we argue that the people most closely involved, i.e. the individual and the family, do have the right to make that decision (not a great deal different than Tyrell's case, as it is still resulting in the death of a child)...then the powers that be should shut down the "right to lifers" summarily. It is none of their business. Just an aside, neither myself nor my daughters have yet had that decision to make. Secondly....what if medical intervention has already prolonged the life of a child, the child continues to be in severe pain, will never recover, requires much more intervention in order to continue a dubious existence...what then? Of course I am thinking of the family a few years back of the severely disabled girl with cerebral palsy whose father killed her to put her at peace. If that original intervention had never taken place, the girl would, in all likelihood, have died very young, not have suffered, and the family would not have been torn apart. Who should be charged with the responsibility? The medics who kept her going in spite of the certain future she would live? Or the parent who decided not to pursue any further medical intervention and to deal with the child's need to be relieved of her suffering. Another case, my uncle, someone you might care to contact if you wish to pursue this issue at some later time, has been struck with ALS ( Lou Gherig's I know the spelling is wrong). He is existing on a ventilator, tubular feedings, 24 hour a day in home nursing care, the only parts that work are his eyes and his brain, which continues to be as lively as it ever was, and is currently working on his computer, on a paper about his decision to go on the ventilator. I'm not sure how I feel about his decision, or where it will take the family over the rest of his lifetime, but I am sure that it was his decision to make. His family has the financial resources to provide the support, but what happens to a family who hasn't? What about a family where it is a senior who has lost the ability to make decisions for him/herself? Will the state "protect" the patient from the decision of the guardians/children to either continue or discontinue treatments? Do we trust them? Do we trust the children? What about extremely premature babies? They have a record of not doing well in later life. Should they be kept going by heroic measures? Just because we CAN prolong a life does not always mean we SHOULD.

Thanks again for a great program.
The Murphy's


Dear Rex,

I was listening to Cross Country Checkup today and something struck me. Many listeners kept saying that it was the best interests of the child that were at stake. You suggested that if the child had chosen a more conventional path that this in itself might have been taken as evidence that he was a mature minor. I suspect you hit the nail on the head. It seems to me passing strange that no one has mentioned Terry Fox in all of this. I don't remember anyone saying to Terry "gosh kid we can't support what you are doing because its likely to shorten your life". No, most of us stood by the side of the road literally or figuratively and cheered him on. He was doing something heroic something noble. Why is it, that this young man is not seen as acting with equal courage? Because Rex, as you so aptly put it, he did not make a conventional choice. Now I realise that the young man in question is very young but I suspect that the issue is really far more rooted in our notion of what is legitimate and conventional than it is in whether or not it is "in the boy's best interest" after all Terry most likely would have die anyway as so sadly this child may as well. We all will die but most of so mange to live without this awareness present in our daily existence. When it becomes part of that daily awareness none of our choices become clearer more rooted in our values. What Terry did was heroic, but I do not see this boys choice as any less heroic. I know that I speak from an unconventional place when I say this but dying is not the worst thing that can happen to you. Thank you for asking the hard questions and for looking past the obvious for the complexity of the situation.

Laura Greggain
LaSalle, Quebec


Hi, Rex & company

Today's show explored an issue which has long interested me. Indeed, one of my /Idea Tree/ projects, /Anatomy of an Economy/, has looked at a number of aspects of arbitrarily-imposed institutional authority as it affects economic life in Canada. It was clear from some of your more vehement callers that when the state steps into environments where basic authority rests with familial culture rather than government, hackles are raised. The issue then is not the good or bad of a specific institutional intervention, but instead the very idea that one's natural space can be invaded summarily in ways that deprive human beings of fundamental rights. In this sense, the surface intentions of well-meaning institutional folk mean nothing in the face of overt invasion of elemental privacy and right.

(I, too, had a go-round with dictatorial medical authority. I rejected radical invasive treatment over 25 years ago which, they said then, would have prolonged my life a few months to a couple of years. The rejection was under threat of withdrawal of all military retirement benefits. I am convinced that I have lived to my 62+ years *because* I didn't accept the ordered therapy.)

Peripheral issues surround the basic invasion of natural privacy:
1. Is medical science always right? Some callers mentioned the obvious fact that medical folk make mistakes. In the case of Tyrell, was the diagnosis correct? Was the course of treatment they'd prescribed the exact right one he would have needed?
2. Have Tyrell's conventional medical practitioners, oncologists in this case, bothered to actually try to find complementary alternatives to conventional cancer therapies? Were complementary therapies simply ruled out because they didn't fit the conventional therapeutic model?
3. Has anyone calculated the effect of all the stress induced in Tyrell by social and medical services maintaining themselves as *adversaries* to exploring all possibilities? There are good studies which implicate stress in the exacerbation of cancers: who will be held responsible for perhaps hastening the progress of Tyrell's cancer?
4. There is, in fact, evidence that prayer can help cure many "hopeless" cases (studies, again, are available). Are any amongst us willing to pray for Tyrell? (I am doing so. It certainly can't hurt in the same way that
5. How much of the hassle imposed on Tyrell's family was because our civil institutions simply need us to be dependent on them for services? If Tyrell should pass on, will folks pushing those services say "I told you so"?

Perhaps Tyrell's family has done us a tremendous favour by exposing the fangs our medical and social services agencies normally keep hidden. I may not be alone in being cynical about their motivation in cases such as Tyrell's.

Keep hitting the issues, Rex. We really *really* need to talk about these things and more.

Thanks.
Cheers!
Ben Kutz
The Idea Tree
Edmonton, Alberta, Canada


My complements for a great show. keep it up and I may become a CBC advocate.

Rex, you missed and important point though. Why did this thing ever hit the courts in the first place? I thought Doctors and Patients should have an attitude of mutual respect. Apparently the Doctors coped out when they thought their opinion was not highly regarded. Perhaps the doctors should learn to contain their ego.

Again my compliments I will not miss next Sunday.
Bruce Robertson


Rex Murphy,
Cross Country Checkup

Your programme of Sunday last, concerning the issue of Tyrell Dueck, the 13 year old boy in Saskatoon, proved to be most frustrating: First, as we were driving the Trans-Canada Highway westward between Revelstoke and Kamloops and could not acquire a telephone link and, Second, because no one whom we heard raised these points which are fundamental to the discussion.

Having spent the previous week in Regina, we were following the case of the Dueck Family with close interest. As we see it, the problem here falls into four categories.

The Double Standard in the Justice System

You made the point that, had the family been of a native or minority ethnic background and wanted to shun traditional Western medical practice, most likely their wishes would be accepted. Most probably true!

Another issue is that of teenaged competency. Had Tyrell insisted on following the medical advice, contrary to his parents desires, it is unlikely the courts or the Social Services would have questioned his competency. Yet, because he and his family agree in not accepting the current wisdom of their doctor, a legal case was launched.

The judgement of the Saskatchewan Court is illogical and reprehensible on three levels:

Illogical because it claimed that the boy was under "too strong an influence from his father to make an impractical and informed decision." Was the father's influence "too strong" when it kept his son from vandalism? Off street drugs? Away from gang crimes? Quite the opposite. The present Bill in the House of Commons to replace the Young Offenders Act states that parents who fail to control a delinquent child placed in their care will suffer up to two years of prison time upon conviction. This tell us that society expects parent to influence their children toward good behaviour.

Reprehensible because in forcing the child to undergo a treatment neither he nor the parents want, the court further traumatizes the child by dening him contact with his prime support system, his family, in the midst of the assault. Why inflict even greater hardship upon the boy by such a malicious action?

All across this country, the ability of teens to manage their own health issues is accepted. Teens can seek and undergo medical consultation and receive treatment, particularly with regards to contraception and abortion, without parental involvement. Indeed, in British Columbia, children of 12 can sign their own consent forms for public health procedures, such as hepatitis vaccines, and the law FORBIDS the nurse or doctor from revealing this consent to the parents. So why was this particular child's decision evidence of incompetency?

Proxy Decisions:

The question of incompetency would raise the issue of a proxy. If it were true that this child is deemed as being incompetent to make such a serious medical decision, who then is the next logical proxy. Again, history and Common Law devolve that selection to the next of kin. If the case were of a young child, brain damaged in a car accident, the medical authorities would have immediately consulted the parents on a course of treatment. So why not in this case?? Is it because the parents refused to accept the recommended, drastic procedures?

As to the question of success and failure: the medical community is far from perfect and in this case, as with many others, it offers no 100% warranty of success. There is a probability that the drugs and surgery could extend the boy's life by some period, but how long is unknown. Yet at what costs?? Not just the dollar costs for the medical equipment and drugs, but also the emotional and physical cost to the boy and the family. Will this procedure improve his "quality of life"?

The course desired by the parents and their son also can not offer a 100% warranty of success, yet it too has a probability of success. And it offers something else, it will improve the "quality of life" simply because the family has a sense of peace about their decision.

This case is not about a simple medical disagreement. It hinges on one of the foundational issues of modern Canadian society. Who is responsible for the care, nurture, growth, development and ultimate well being of society and its sole resource, people. Parents and families have always been the ones who shouldered the cost, pain, joy and obligation for raising children. And children are the future of our nation and of this world. The decisions we parents make in raising our children, and the way we train them to become competent in making their own decisions will have a basic effect on how our nation moves down the road of world history.

We realize that in the last half of this Century, many moves have been made by government to usurp the role of the parent as prime care-giver to our children. Day Care, Social Services and Onerous tax Laws have all combined to project the false image that the government, and not the people, are far better equipped to manage the young people of Canada. That is simply wrong.

Wrong because in countries which have adopted that falsehood, social and economic disaster has come with it. Look at the dictators of the past who insisted in "expropriating" their nations' children. Nazi Germany, Communist--st Romania, pre 1990 China. All eventually failed in their desires. So too will Canada.

Keep up you efforts to expose the fallacies of poor governmental and irrational justice system tyrants!

Robert Quicke
Catherine Quicke
Vancouver, BC


Rex-

Except for 20 minutes when I was interrupted by an important phone call, I listened with interest to your program last week on the Tyrell Dueck case.

There is a very important aspect of the Dueck case that was not covered by any of the callers that I did hear. That was the seeming unquestioning belief of listeners that parents have the right to impose any and all manifestations of their religious beliefs on their children, no matter how strange, irrational, or dangerous those beliefs.

The closest that most people came to touching on this vital question was to wonder if Tyrell was mature enough to make his own decisions. But to a strongly non-believing person like myself, all religions are an invention of man, 'theological philosophies'. Their individual concepts of a 'god' vary with the psychological and sociological world views of their founders. People can invent any belief that they want, and they do. The views of their 'god' are so different from one another that they cannot possibly all be true. To me, the logical conclusion is that all religions are a fantasy, and therefore we should not make any important decisions based on the notion of what their 'god' would want.

The Jesuits are credited with the saying, 'give me a child until he is six (or ten?) and you can have the rest of his life'. A child has no points of reference outside what his parents and religion tell him, especially if their message includes terrible images of hell and eternal torment for unbelief. There is no way that a child will be able to think objectively. Furthermore, a child will usually be instructed by the parents not to listen to any viewpoint other than their own.

Tyrell, and any other child in his situation, has no way to look at a situation rationally, to decide what is best for him on the basis of reason and logic. Religious belief, by its very nature, is irrational, and not the basis for sensible decisions. Thus, it is also not a reliable basis for parents to decide the course of the lives of their families, or of themselves, for that matter. They should not have the power to override experts with objective knowledge. Yes, doctors do make mistakes. But I would prefer to put myself in the hands of a person who has studied for years and who has access to the best available scientific and rational knowledge, not in someone with his own peculiar interpretation of texts written many centuries ago.

This topic is too big to cover in full in the time available for a letter on your program. But, in brief, if our civilization is ever to achieve maturity, we must remove the power and dominance of religious notions over our own minds and those of the legislators who control our society.

Ian L. McQueen
Saint John, NB


Dear Producer

I object to forcing treatment on 13 year old Tyrell Dueck because doing so violates the principle of Separation of Church and State. (SCS) More people are turning to religions that heal through prayer and to holistic medical treatment. If Tyrell's Christian 'fundamentalist' father has taught his son reliance on prayer, what is the state's compelling interest in interfering?

SCS should protect people's right to live their religions. When Peter and John were condemned for unpopular teaching, Gamaliel advised: 'let them alone...for if this work...be of men, it will come to naught: But if it be of God, ye cannot overthrow it...(lest) ye be found even to fight against God.' Acts 5:38-9

I condemn religious leaders who prohibit contraceptives, sterilization, and abortion, in effect encouraging population growth. This growth reduces the chance that humanity will stop global climate change and it encourages the present massive extinction of other species and the increase of human sickness due to environmental degradation. If religious leaders are allowed to threaten human survival by promoting population growth, why should some lowly, powerless person, be stopped from doing his best for his son? The State and the media refuse to condemn teaching which leads to population growth, so should not be intervening in Tyrell's case.

Ken McLean, Lower Mainland Sustainable Population Society,


Regarding the following letters:
The next two letters were written in response to one caller to the program - Bill O'Neill of the Canadian Cancer Research Group. If you have realaudio, return to the archives page and click on the button for this program. That call can be found approximately 40 minutes into the program. We have also provided a hotlink to the Ottawa Citizen article (October 29, 1998) about the Canadian Cancer Research Group and the hyperbaric oxygen therapy that is referred to in the following letters. And there's a hotlink to the Canadian Cancer Research group.
The letters follow:

An early caller in today's programme was Bill O'Neill, who described himself as a professional associate of the "Canadian Cancer Research Group." This organization has a website in Ottawa (http://www.ccrg.com/default.htm) which makes a number of things plain:

-- O'Neill has no medical or other professional credentials in science. (He formerly worked in computers.)
-- O'Neill founded the CCRG after a child was diagnosed with cancer and he was dissatisfied with medical treatment. The child appears to have been cured.
-- He is (or was, when the Ottawa Citizen last covered the matter) suing the Children's Hospital of Eastern Ontario in connection with his son's therapy.
-- The CCRG is a fee-charging organization ($750 minimum) and not a public charity. It appears to be promoting vaccine therapies that orthodox medicine says are unproven.

Listeners to Mr. O'Neill on CBC Radio may have got the impression he was medically qualified and had no personal interest in either supporting or attacking orthodox medicine. It appears such an impression would be unfactual.

Donald Phillipson


Dear Rex,

Your last Cross Country Checkup show about Tyrell Dueck has prompted me to write in a few comments.

You afforded Mr. Bill O'Neill of Ottawa a considerable amount of air-time. He described himself several times as a 'professional' with an international organization, the Canadian Cancer Research Group. He went on about being able to provide the Dueck family with alternative cancer therapy information because of his international contacts. I suspect, Mr. Murphy, that you have been had. What I know about him is from the local newspaper. He has been featured in the Ottawa Citizen newspaper twice (see below). I believe he runs a for-profit business that sells useless therapy to desperate people. Specifically, he sells time in a hyperbaric chamber for the treatment of brain cancer and other diseases for which there is no proven benefit. He charges people $750 for a package of cancer information that is available on the net, at the local Cancer Centre library, and from the Canadian Cancer Society. I was disappointed you were unable to pin him down as to his credentials and how and why he was in contact with the Dueck family.

For your information, a recent newspaper article on him can be found at: http://www.ottawacitizen.com/city/981029/1973957.html

I am a basic cancer researcher at a provincially funded cancer treatment centre. The most disturbing aspect of your program was the degree of attention and credibility given to so-called alternative therapies. Cancer is a very frequently occurring disease and I too have been touched by it, in the form of the recent loss of a close family member. I know the anguish and feeling of helplessness. It saddens me deeply to hear the distrust of so many callers of evidence-based medicine, in favor of unproven 'miracle cures'. Like democracy, medicine is far from perfect but there is nothing better.

Chaim Birnboim

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