ARCHIVES:
CHN FACTS - BRIEF
ISSUE No. 8 FALL 1994

 E-MAIL: chn@intergate.ca  
In this issue ...
bulletDutch Physician - Dr. Karel Gunning, Warns Canadians To Oppose Euthanasia
bulletCHN - `Executive Summary' of Brief To The Senate Of Canada: `Physician Assisted Death: Is It Right For Canada?'
bulletPersonal testimony given by Cheryl Eckstein
bulletInfanticide In The Netherlands: The Killing Of Baby Maartje and Other Newborn Disabled
Baby Jane Doe: A Striking Parallel
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Canadian Medical Association
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The New York State Task Force

Also in this issue ...

~ The Kandice Knowles Story: Reprise
~"Doctor Sued Over Wrongful Birth"
~ Father Charged With First Degree Murder Of Disabled Daughter
"Mercy Killing Seen On Dutch Television"
bullet~ BOOK REVIEW: Uncommon Will the death and life of Sue Rodriguez, by Lisa Hobbs Birnie & Sue Rodriguez, Macmillon Canada 1994


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DUTCH PHYSICIAN - DR. KAREL GUNNING, WARNS CANADIANS TO OPPOSE EUTHANASIA

At a press conference held in Surrey, B.C., sponsored by CHN, Dr. Karel Gunning, president of the World Federation of Doctors Who Respect Human Life, said: "Once you accept killing under one condition, soon you have hundreds of conditions in which killing might be regarded as an answer."

One of the many concerns in the euthanasia debate is the privatizing of death decision-making by those who have paternalistic power over those who are "dying anyway". The following vignette reveals how some decisions to kill are cavalierly made:  

A middle-aged man requested euthanasia for his elderly, dying father so he could bury his dad before going on holiday. That kind of request is easily made, and granted, once a country opens the door to euthanasia, ... Dr. Karel Gunning ... said a colleague told him about receiving this request and trying to oblige the son by giving the father a huge dose of morphine. It failed to kill the sick man, who was found sitting up happily in bed that evening. Gunning said the episode "just shows you the mentality" in the Netherlands .... [Pitfalls of euthanasia cited, Ailing father death target, by Rebecca Wigod, Vancouver Sun, 4.10.94: B1.]

Dr. Gunning previously told the Special Senate Committee on Euthanasia and Assisted Suicide, that Canadians must not follow the practice of Dutch physicians, who "Instead of killing the pain, [are] killing the patient." [Globe & Mail, 30.9.94: A4]

While visiting Surrey, Dr. Gunning was also invited to speak at a Sunday morning worship service held at Bible Fellowship. After being introduced, the congregation gave him a overwhelming one minute standing ovation, to which he thanked them and said, "I wish the people in Holland could hear you." He told the congregation of his deep affection toward Canadians, saying, he was "especially grateful" because, this year we remember that 50 years ago our country was liberated by the Canadian soldiers .... As you know, during that war Hitler began his euthanasia program which killed over 100,000 German mental patients. 

The doctors in Holland, at the time were forced by the Germans to join that campaign, but they refused and 100 doctors were put in prison and were threatened with being shot if they didn't obey. So that was the victory that was won by the people during the occupation. I am tremendously ashamed to say now that though our colleagues have given a very good example during the war, that at the moment (Dutch) doctors are cooperating with the plan for euthanasia. What that means I would like to show by one example. A good friend of mine, a lady journalist in Germany, was born in 1938 with spina bifida. She was the only case of spina bifida of her generation in Germany who survived the war. Her parents knew it was very dangerous to have a doctor look after this patient, so they hid this girl for 7 years until after the war. Now again, she feels threatened, because in Holland, babies with handicaps like spina bifida, are being killed - so she is afraid that one day she might still be a victim because people are saying that "your quality of life is too low."

Dr. Gunning said that while the proponents of euthanasia talk about the right to die, it is not the right to die they are talking about, but rather "they are talking about the right to be killed", which he said is "quite different": 

 

I think that those who promote euthanasia, do it from the best motives. I think they really believe they are compassionate to their patients who suffer. ... They talk about death with dignity, but my brother died in a concentration camp during the war, in one of the worst concentration camps there was in the most undignified circumstances, but, he never lost his dignity. Dignity is something in our hearts and not in our circumstances....
Dr. Gunning talked about the slippery slope being similar to the "hole in the dyke", saying, that one hole in the dyke could flood the whole country. In closing he said: 

 

I think we must confess our sins, because you know our churches, like my own Dutch Reform Church, have supported the idea of legalising euthanasia. That is the most shameful thing ... My belief is that Canada may be a pioneer to give the real answer, because suffering is not necessary if doctors are trained in the right way ... I hope very much that Canada will say "no" to killing and say "yes" to real caring. I hope you lead the way, and I hope you will pray for us in Holland for the great sin that we are committing. Thank you very much. [Audiotape available from, Bible Fellowship Ministry Tapes].

 
bulletCHN APPEARS BEFORE THE SENATE OF CANADA

On September 27, 1994 the Compassionate Healthcare Network, was invited to appear as witnesses before the Special Senate Committee on Euthanasia and Assisted Suicide, chaired by the Honourable Joan Neiman, which met in Vancouver, Canada. Representing CHN was Cheryl Eckstein, president; Dr. Robert Pankratz, vice president; and Dr. Michael Newton, director. (Proceedings of this meeting are recorded in the "Hansard", published by the Government of Canada, available from: Canada Comm. Group — Publishing, Ottawa, K1A 0S9).

CHN received over 360 letters written by Canadians who expressed their opposition to physician assisted death; requesting that CHN present them personally to the Senate. Mrs. Eckstein told the Senators why a yellow and white ribbon was tied to the large package of letters:

The colour yellow, represents our concern that patients will have the peace of mind that their doctor will do no harm; and our hope for the safety of patients when they are in the care of physicians. White, represents our hope that physicians will not stain their profession with the act of euthanasia.

The `Executive Summary' of our 65 page brief titled, Physician Assisted Death: Is it Right For Canada?, as read to the Senate by Mrs. Eckstein follows:

 `EXECUTIVE SUMMARY' INTRODUCTION: 

With the establishment of the Canadian Charter of Rights and Freedoms, which intended to guarantee equal rights for all Canadians, the Honourable Jean Chrétien stated "We have the occasion...to build...a Canada which will protect the weakest in society." This is the theme of this brief. It is our position that the present legislation prohibiting assistance in suicide or any form of intentional homicide is necessary to protect the vulnerable.... This brief discusses the tenuous position of some of the weaker members of our society: the aged, the mentally and physically handicapped or ill, the institutionalized, the incompetent, and those who are easily influenced by the opinions of others. Tied into this is an analysis of the failure of safeguards to protect those who are particularly at risk. Also included is some necessary discussion of definition and rhetoric that abounds in this debate. There is also a specific examination of legislation and court decisions in the Netherlands, Canada and the United States; as well as a look at the current practise of euthanasia in the Netherlands and medical opinion in a world wide sense. 

I. WHO ARE THE VULNERABLE?

The elderly/cancer patients

 Certain segments of our population are identified as beingparticularly at risk to a decay in their right to life should euthanasia become legalized. This includes the aged, who are in a position of diminished power, decreasing resources, and decreasing health. These are at the same time recipients of increasing abuse, and negative public stereotyping that leaves them to feel they are a burden on society. Suicide risk is already increased in the elderly. Overlapping with this group are the victims of cancer who in some cases have poor pain control. The prevalent problem of inadequate pain relief, which would be largely eradicated with good palliative care, also leads to an unbalanced pressure toward mercy killing. 

The suicidal 

Suicidal members of society would be particularly vulnerable if assisted suicide became readily available. Scientific evidence to date shows that at least 95% of suicides are a result of mental illness, not unbearable pain. In Canada suicide rates are escalating. Suicide is noted to be contagious. Suicide in a parent can particularly complicate the grief of the offspring, who often feel somehow responsible for the death. The recent acquittal of a Dutch psychiatrist for assisting in the suicide of a depressed and grieving 50 year old woman, highlights the fact that once euthanasia is condoned, it will include people who have readily reversible mental illnesses.

  The disabled 

Particularly pernicious is the medical killing of disabled newborns, which is increasingly occurring in the public eye. In the Netherlands, "Baby Maartje" was administered a lethal injection when physicians told the parents that the prognosis of her physical malformations was severely bleak. Her deformities bore a marked resemblance to the United States case of "Baby Jane Doe", whose parents won the legal right to allow her to die of her medical condition without treatment in 1983. After the two week court battle, the parents decided to have their child treated after all. Interestingly, the child's dreadful prognosis proved to be largely erroneous as this child developed. This highlights the fact that physician predictions are not only unreliable, but also tend to be exaggerated towards the negative.

Disabled adults form another large group, who have been characterized in the Rodriguez case as having lives that are not worth living simply due to their dependency upon others. It can be seen that disabled people who sustain a wish to die, often do so for psychological reasons, based upon their pre-morbid personalities rather than their circumstances per se. 

II. THE ROLE OF THE PHYSICIAN:

Since euthanasia is being "medicalised" and given an air of respectability when cloaked in the garb of the medical profession, it is important to look at the historical role of the physician in medical care. Doctors have been seen as having a duty to protect the lives of their patients and this has engendered a high degree of trust in the profession. This trust is being highjacked and will be lost if physicians include in their clinical judgment the acceptability of a person's suffering or their worthiness to remain alive. This is particularly important with respect to the final group of the vulnerable not mentioned above, which is the incompetent or comatose. Since large numbers of patients are being given lethal injections in the Netherlands for "tiredness of life" or "loss of dignity" and this includes decisions taken on behalf of the incompetent, it can be seen that physicians are using subjective criteria of dependence or even scarce resources to decide who should live or die. Not only has euthanasia never been restricted to the competent person requesting it, there appears to be the overt inclusion of the incompetent in the agenda of the euthanasia proponents.

Since a significant percentage of terminal diagnoses turn out to be wrong at autopsy, and a significant number of people improve who are thought to be terminal when treatment is removed, it should be seen that non-treatment decisions are vastly different from active mercy killing. The medical profession can show a profound respect for the boundaries of life by allowing death to occur naturally when treatments are no longer beneficial. To actively intervene by accelerating death will result in the deaths of some people who were not actually terminal, and the removal of opportunity for some people to complete the dying process and finish the important social and spiritual business, including the closure of their relationships. The importance of this final stage of life cannot be over emphasized, as will readily be verified by anyone who practices palliative care.

 

III. RHETORIC SURROUNDING THE ISSUE:

Definitions are discussed in this brief because the term euthanasia is used only in a very restricted sense in the Netherlands (to connote active voluntary mercy killing). However, in Canada the term as been used by some to include standard medical practices, such as the administration of adequate narcotic to relieve pain, and the withdrawal of disproportionate or unwanted treatment which may allow death to occur.

The concept of autonomy is also discussed since euthanasia proponents have argued that to preserve personal control, this so-called "right" must be legalized. It is argued in this brief that euthanasia on demand for the competent terminally ill would result in a loss of rights to life and liberty of the above named groups, and increase the paternalistic power of the medical profession over even the competent.

Finally, the protection of the inviolability of human life is explained to be contingent upon the attitude of society. To accept the shortening of even one life in society is to dismiss the inviolability (and dignity) of all human life. This is discussed further under safeguards. 

IV. "SAFEGUARDS":

The legal situation in both the Netherlands and Canada are outlined in this paper. Simplistically speaking, the only difference between Dutch law and Canadian law is court precedent in the Netherlands that allows the physicians to kill patients under selected circumstances. The Royal Dutch Medical Association has outlined what they consider to be safeguards in this regard, but these differ from what is allowed by the Supreme Court of that nation. The safeguards are discussed individually in this paper and comparisons are drawn between that of the Dutch and the so-called restrictions that would have been applied in the Rodriguez case in Canada if her petition had been granted. The safeguards are argued to be imprecise and largely ignored by the medical profession. Briefly, the following seven safeguards are discussed:

1. There must be an un-coerced voluntary choice of the patient. This is fraught with difficulty as suicidal and terminally ill people are rarely fully competent and have considerable pressures influencing their decision.

2. The patient must be incurable or terminal. This guideline is certainly disregarded by many physicians in the Netherlands, and so will not likely be complied with in Canada either. As well, it is improbable that this restriction would hold up under Constitutional challenge in Canada. In addition, there is no generally accepted medical definition of "terminal condition".

3. A patient's request must be persistent and well considered. In the Netherlands 59% of requests are granted on the day of that request.

4. The patient must have intolerable suffering. Although many people in the Netherlands do have pain, the majority of reasons for euthanasia are largely social, including "loss of dignity". Since suffering need not be physical, criteria are entirely subjective (which means you have to believe what the patient says), and in many cases is judged solely by outsiders such as the family and physician. The presence of unrelieved pain as a criteria is disturbing since much of unrelieved pain in terminal cancer today is due to inadequate palliative care.

5. Euthanasia must be a last resort. This really means that other options are simply discussed. In reality, if the patient does not wish to try alternate treatments such as medication for their depression as in the aforementioned psychiatric case, euthanasia is still considered a viable option.

6. The person assisting in a death would need to be a physician. (In the case of Sue Rodriguez the recommended restriction was that she herself perform the active intervention that leads to her death). In the Netherlands nurses have been implicated in administering euthanasia even without consultation with physicians. In the case of Sue Rodriguez, an alleged third party supposedly administered a lethal substance on her request. Importantly, this came at a time when she was still able to swallow solid food, thereby negating her contention that she needed assistance legalized because she would not be able to swallow the necessary pills.

7. Consultation with another physician is mandatory in the Netherlands. This is clearly not followed in many cases, with court sanction. 

r v. THE RODRIGUEZ CASE:

Since Sue Rodriguez is credited with bringing this issue to the forefront of Canadian thought, some closing comments are made regarding the circumstances and personality of this prominent woman. It is seen that there was a foundation of anger, abandonment, rejection, and fear of the unknown, rather than unremitting physical torment, that led her to seek a premature end to her life. The recently published book on Sue Rodriguez, "Uncommon Will" by Lisa Hobbs Birnie is recommended reading.  

CONCLUSION:

There is seen by some to be a pressing need for the competent, terminally ill, suffering individuals to have a constitutional right to assisted death. However, this would remove the protection of the law for a large vulnerable segment of our society. This includes the incompetent, the elderly, the disabled, the mentally ill, the easily influenced, the institutionalized, the frail and dependent, and those vulnerable to murder masquerading as euthanasia in disguise. The Netherlands experience reveals that restrictions (no matter how carefully thought out) are ineffective in the less than ideal private world of the physician/patient encounter. In fact, it can be said that the current state of case law in the Netherlands works more to protect the physician than the patient.

Physician accountability is lacking in our society, and abuse of patients in other ways are currently coming under close scrutiny. To empower physicians to act on what is essentially an untrained moral judgement of someone's quality of life is to open up the potential for enormously increasing abuse. Surely the legalization of euthanasia would be the worst indictment possible of the Canadian medical system. We must retain this incentive to advance palliative care or risk the advent of the easy way out, with increasingly substandard pain relief, and even fiscal restraint complicating the picture. There is no doubt that a $3.00 lethal injection can save medical costs but we ask you to look at the moral costs to society of removing the aged, the infirm, the disabled, and the terminally ill. We also risk removing the fortitude of our young people to face even the minor sufferings we all experience on a day to day basis. We cannot as a society lose our will to face suffering boldly, to advance medicine, and to accept the natural dying process without also losing our will to live in support of every member of the larger community.

(Mrs. Eckstein continued with the following, personal testimony)

Ladies and Gentlemen of the Senate, and guests, allow me to remove my hat and speak from personal experience. George Berkley once said, "We raise the dust, and then complain we cannot see." That is what is happening today. So much dust has been raised about patient's rights, that much of our civilized society is wandering around confused in a catastrophic dust storm. The first dust storm covered a basic tenet about a person's right to life. That dust bowl began when a movement of some in society raised their heels against people who were born with defects, and disabilities. That group of people were professionals, called doctors. Soon they convinced their colleagues that there were certain unfortunates who should be humanely put out of their misery. They proclaimed it would be cruel to allow such life to continue (however long it took), in such a crippled and defective body.

By the late 1940's, the Universal Declaration of Human Rights was written. Article 3, of this declaration says: "Everyone has the right to life, liberty and security of person". By the way, Canada is co-signer of this declaration. No where in this declaration does it even hint at having the right to assisted death, or to be murdered. This declaration was struck, because society had just come out of an era, when life was at a wholesale price, where millions of human beings were stripped of their freedom and homes; from a time when countless numbers were tortured and slaughtered.

Later, parts of the world seemed to leave the age when `medicine had gone mad'; but only just long enough to catch a breath of fresh air. As soon as the dust settled, people forgot what it was like to live in a dust bowl. Society was approaching the age of so-called `enlightenment'. Soon women began to claim they had a "right" to protect their own life, if carrying a child to full term would threaten the life of the mother. Very soon, a woman could destroy a life that was unwanted, and unplanned, especially if the mother had been raped or had conceived a child because of incest. I feel the personal weight of that discrimination every single day of my own life; because I am a child conceived by rape. I felt stigmatized by the label "illegitimate", and was told over and over again, "You should never have been born —-the day you were born, you should have been thrown into the garbage can." I grew up enduring the pain of knowing I was unwanted, and a burden to the grandparents who raised me. I personally commiserate with those who feel they are a burden to their family and to society. It is not easy to live in a world where you are not wanted.

At one time, attempting suicide was a crime. But in 1972, Canada repealed that law. Attempted suicide was decriminalized for three very good reasons; (1) Suicide is a symptom of mental illness and the solution to this problem was seen to be found in areas outside the law; (2) incarceration was shown to increase rather than decrease suicide risk, and (3) if the suicide was completed, there was no one to punish. Therefore, the law was found to be counterproductive in this area and so was repealed. I understand from a very personal experience why it was decriminalized. Indeed, I wish it had been struck down a year or so earlier because in 1972 I was probably one of the last persons in Canada to be incarcerated for attempting suicide.

It was during that year, I suffered from severe depression and sought professional help. I thought I found a doctor who I could trust and confide in. Not long after going to him he violated his ethics, and took advantage of me - sexually. I came to him during a most vulnerable period in my life. After leaving his office, I felt utter shame. This led to a further feeling of ruin and kept me in a state of hopelessness. My serious suicide attempt landed me in the intensive care unit for 11 days. Then I was transferred to another ward, where caring people helped me to learn how to cope. I also discovered, that no one was promised a tomorrow, and that truly life was really beautiful today.

I remember that I concealed the real reason for my suicide attempt. I recall, I did not tell anyone about the unethical doctor and what he had done to me. The reason why I did not disclose that pain, is clear to me now .. I did not feel safe to completely trust any doctor. If you can't trust your doctor - then who can you trust? After 21 days in the hospital, I was released. But as I prepared to leave the hospital, I was greeted by two police officers, who promptly took me to jail, where I spent 28 hours of sheer hell in a holding cell. The charge: attempted suicide. All the therapy, and hope for a new life, was nearly destroyed in those 28 hours. My depression recurred as strongly as ever. The shock of this experience left me feeling humiliated. I shudder to think `what if' if assisted suicide had been a "legal option" at that vulnerable time in my life. Today, I am awaiting the news of the birth of our 6th grandchild. Such is the incredible joys of the gift of life. This and other wonders, I might have missed.

I believe physician assisted death is the `radical rejection of human dignity' and the antithesis of compassion. Attempting suicide and assisted suicide, are poles apart. Make no mistake ladies and gentlemen, that many suffering from feelings of hopelessness and depression, have gone to their grave feeling useless, unwanted, rejected and abandoned - people who otherwise could have been helped. It would be an absolute tragedy to validate assisted suicide and eliminate the suffering person, rather than seeking ways to eliminate the suffering. Let us focus on the quality of love, compassion and care we bring to the suffering and promote aid in living. [Here ended the presentation to the Senate of Canada from CHN, a question period followed. However, the full report, "Physician Assisted Death: A Right For Canada" (revised edition) is available on request through our office.

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INFANTICIDE IN THE NETHERLANDS: KILLING OF NEWBORN DISABLED

A disabled child, known only by the name of `Baby Maartje', was killed by the child's physicians. A translated account from De Telegraaf report follows (abstracts only):  

 

In March of last year a team of five physicians at the Waterland Hospital at Purmerend (Waterlandziekenhuis in Purmerend) decided to terminate the life of a baby that suffered multiple handicaps. [The little girl was born with hydrocephalus, spina bifida, aggravated by "dwarslaesie", and deformed legs and feet.] This was done abruptly and at the explicit request of the parents. The gynaecologist, Dr. Henk Prins and his team made a conscious decision in this regard, and have no intention to avoid criminal prosecution, which is now being considered by the authorities. Very soon after the first shock, the great sorrow and the frightening prospect of life with a seriously handicapped child, the parents approached the medical staff of the hospital requesting to alleviate the pain of their child. On that occasion, says Dr. Prins, within a matter of hours after the child was born, termination of life immediately entered into the discussion. But, Dr. Prins emphasizes, only as a last resort, and after all other options had been exhausted.
The options apparently discussed by Dr. Prins: 
Technically speaking we could have operated, and the child might have lived for a few months, perhaps even a few years. But she would have had to have one operation after another, certainly the first year or two. It would have been an endless road of suffering and she would have been in constant pain. Certainly we could have closed the defective back. By means of drainage we could have alleviated the tension and pressure in her head. We could have given her antibiotics to prevent infections.... [Maartjes Lijden was voor niemand Aanvaardbaar, De Telegraaf, 9.7.94: 19. See also, Onderzoek tegen arts in Purmerend na euthanasie op baby, De Telegraaf, 4.7.94: 4; and, Gynaecoloog beschuldigd van moord op baby Maartje, De Telegraaf, 18.7.94:= 3].
Dr. Philippe Schepens, Secretary of the World Federation of Doctors who Respect Human Life (WFDRHL), commented that 
the complete story of `Maartje' ... shows us that (again in Holland) things go forward in the wrong direction ... it is the start of recognition of infanticide as good medical practice ... this case is a start of a new jurisprudence about infanticide for "deformed babies", so that after abortion and euthanasia, people can be killed "for their own sake" without own request. Once this is achieved, all kinds of (more or less) ill and very ill people will be legally `allowed to be put down', actually as pets. [Dr. Ph. Schepens, Ostend, Belgium, 20. 7. 1994, personal letter to Mrs. Eckstein President of CHN]
Given the recent press of the infanticide of `Baby Maarjte', the public may be led to believe that this is a single incident in fact it is not. Dr. Zier Versluys, head of the Dutch Pediatric Society, stated that "euthanasia is part of good medical practice in neonatology." He says, "euthanasia are now routinely disguised as natural deaths to avoid possible prosecution", insisting that the "main problem is that we kept these children alive in the first place." Versluys commented, "Both for the parents and the children, an early death is better than life." Versluys opined, "euthanasia on infants is practised about 10 times a year." The Justice Ministry responded by saying, "the low incidence of euthanasia among this country's 200,000 live births a year makes guidelines unnecessary"." [Pediatric report reignites debate: Dutch guidelines for mercy killing would grant immunity to doctors involved, Calgary Herald, 30.7. 1992].

Also, in another report, Versluys said, "For these babies, life is a threat, not a perspective...its a very difficult thing to do, but sometimes care is helping a baby die." The report said "Versluys is seeking `clear criteria' that - while not legalizing the mercy killing of newborns outright - would exonerate doctors from prosecution." [Permission sought to kill badly handicapped infants, The Vancouver Sun, 8.8. 1992: p. A10] 

When Dr. Karel Gunning, president of the "World Federation of Doctors Who Respect Human Life" appeared as witness before the Canadian Senate studying euthanasia he said: "...I was once the assistant secretary of the Royal Dutch Medical Association. I arrived in 1968. The Secretary General said to me, "You know, Gunning, we doctors are very fortunate. We have one medical ethic which is accepted the world over, by communists and catholics alike." In that same year, the Medical Association nominated a committee to investigate the problem of abortion. They came up with the idea that abortion should be regarded as a normal medical treatment. That was the beginning. I told them at the time, "If you start now with abortion, you will end with euthanasia." They said, "That will never be the case." Ten years later, it was "yes" to both abortion and euthanasia, but only voluntarily, and absolutely never, never involuntarily. Ten years later, we have involuntary euthanasia... we have the slippery slope. [September 29, 1994]

 
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BABY JANE DOE: A STRIKING PARALLEL

A momentous investigation into complaints alleging that (USA) disabled citizens were discriminated against and denied equal protection (including being deprived of medical help), was completed and released under the title of A Report of the U.S. Commission on Civil Rights' `Medical Discrimination Against Children with Disabilities,' September 1989. One compelling case included in this report, bears a striking resemblance to baby Maartje. It involved a infant known as `Baby Jane Doe, whose future, if she survived surgery, was "unremittingly bleak". [p. 40]

Baby Jane Doe's parents engaged in one of the most highly publicized litigated cases concerning a disabled infant. Upon advise from the infant's physicians, the parents decided not to have life-saving surgery done on the infant and the case went to trial. Baby Jane Doe was diagnosed with "spina bifida", having "fluid on the brain" [hydrocephalus]; "an abnormally small brain"; and was "so severely deformed that there is nothing that can be done for her." [Id.] Dr. George Newman, a pediatric neurologist, told the court that:  

She is not likely to ever achieve any meaningful interaction with her environment, nor ever achieve any interpersonal relationships....develop any cognitive skills... whatsoever. [Id.]
The Los Angeles Times reported that "Doctors say that without surgery the girl may live up to two years; with it she could live until she is 40 but she would be severely retarded, epileptic and paralysed from the waist down, as well as in constant pain"." [Id.] American bioethicist Arthur Caplan, also questioned the `quality of life' of Baby Jane Doe. In his article, "Is it a Life?", Caplan said, "No one should be forced by the government, [or] civil libertarians...to live such a life, even briefly." [Id.]

The court ruled in favour of the parents, and surgery was denied. An appeal was launched and a guardian ad litem was appointed. At conclusion, "the trial court judge ruled...It is clear...that the infant is in imminent danger, and that the infant has an independent right to survive; that right must be protected by the State acting the [parens] patriae, where a life is in jeopardy and the parents have elected to provide no surgical care...." [Id.] Nevertheless, that "decision ... was promptly overturned in the "States highest court, the New York Court of Appeals"." [Id. p. 60]

However, in a surprising turn of events, the parents of Baby Jane Doe changed their minds and surgery followed - Baby Jane Doe had a shunt installed to close her back. Once her back was healed, "she was taken home." As she left the hospital, Dr. Newman had not changed his prognosis: "She will still be severely retarded and I still think, bedridden all the days of her life"." [Id. p. 40]

By 1987, it was said of Baby Jane Doe (now known as Keri-Lynn), "it is hard to recognize the pain- wracked, unaware, bedridden creature of her doctors' confident predictions...." One reporter wrote, "Keri-Lynn talks and laughs; she smiles and hugs and screams and plants kisses firmly on a stranger's cheek." [pp. 40 - 41]

Charmed by her sweetness, another reporter wrote, 

" ...she whispered, `Dance Daddy dance,' as her father swept her into his arms to sway to the music of Stevie Wonder." [Id.] At the beginning of the chapter on Baby Jane Doe, contributors to this report referred to this case as not one to be "dismissed as isolated".

A substantial body of evidence shows that time and time again predictions of a poor quality of life made at birth for a child with a disability are subsequently proved wrong. [Id. p. 40]

Source: Taken from Chapter 3 "The Role of Quality of Life Assessments in Denial of Medical Treatment" - A Report of the U.S. Commission on Civil Rights' `Medical Discrimination Against Children with Disabilities,' September 1989.

Inaccurate prognosis can prove to be fatal. The Baby Jane Doe and Baby Maartje cases should lead us to sombrely adjudicate the following: 
In popular debate, the question whether children with disabilities should be denied lifesaving treatment has frequently been couched as though the issue were whether the government should intrude into matters of parental discretion. In fact, however, for decades the universally accepted law has been that when parents make treatment decisions that will undebatably lead to the death of their nondisabled children, the state will intervene to ensure the children's survival by mandating provision of lifesaving medical care. It is only when the children have disabilities that the claim of parental autonomy is given serious sympathetic consideration. [Id. p. 60, emphasis added]

 
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CANADIAN MEDICAL ASSOCIATION

The Canadian Medical Association (CMA) passed a resolution August 16, 1994, in Montreal, Quebec, to oppose euthanasia and physician assisted suicide. This resolution that was passed by a vote of 93 - 74, stated:  
The Canadian Medical Association declare its members should specifically exclude the practice of euthanasia and physician assisted suicide.

 
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NEW YORK STATE TASK FORCE

The New York State Task Force (NYTF), which was struck to investigate physician assisted death, released its findings, published as: "When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context", The New York State Task Force on Life and the Law, May 1994, 217 pages. Abstracts from this study follow:  

In this report, we unanimously recommend that New York laws prohibiting assisted suicide and euthanasia should not be changed ... Assisted suicide and euthanasia would carry us into new terrain - American society has never sanctioned assisted suicide or mercy killing. We believe that the practices would be profoundly dangerous for large segments of the population, especially in light of the widespread failure of American medicine to treat pain adequately or to diagnose and treat depression in many cases. [p. vii]
After examining state and federal law, the Task Force concluded that neither the United States nor the New York State Constitution grants individuals a "right" to commit suicide. [p. 68] At page 72 they stated that: 

 

The historical opposition to suicide, while neither necessary nor sufficient to the Task Force's own constitutional analysis, makes it virtually inconceivable that the United States Supreme Court would recognize a constitutional right to commit suicide.
While advocates of decriminalizing assisted suicide argue there is a "middle ground" to be found in this arena, the NYTF disagree, saying: 

 

[O]nce it is recognized that the number of people genuinely harmed by laws prohibiting euthanasia or assisted suicide is extremely small, and that legalizing euthanasia or assisted suicide for the sake of these few - whatever safeguards are written into the law - would endanger the lives of a far larger group of individuals, who might avail themselves of these options as a result of depression, coercion, or untreated pain. [Id. p. 72 supra note #112]
Regarding palliative care, the NYTF advised that: 

 

Attention to patient's symptoms should not be reserved for the end of life, nor should it be a sign that curative efforts have been abandoned. Palliative care should be understood to include symptom control at all stages of disease. [Id. at p. 158]

One major concern being echoed on an international scale, is that providing adequate pain and symptom relief "is a pervasive fault of current clinical practice". Yet, "it is also one of the most amenable to change." (Id.)

Note: CHN wishes to thank the New York State Task Force for providing CHN with a copy of this important study. CHN submitted a copy of the NYTF book `When Death Is Sought...' to the Senate, along with our brief.

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THE KANDICE KNOWLES STORY: REPRISE

Following is an CHN update to the Kandice Knowles story reported in the April/May 94 issue of CHN Facts-Brief. In January of this year, Toronto resident, Tami Knowles, was told by physicians at the Toronto Hospital for Sick Children that her four-month old baby, Kandice, had only a few months to live. The victim of a fatal brain disease, baby Kandice came close to being a victim of another kind. Doctors wanted to prematurely end her young life. In a personal letter to CHN, Tami's mother, Annette Knowles, writes, "As you know, Tami was able to bring Kandice home ... We feel she is making progress and pray that a miracle will happen." The Knowles family was recently able to rejoice as Kandice celebrated a landmark first year on September 6th.

Although she may never regain full consciousness, every month, every minute of Kandice's young life is precious to her family. "I bake her a birthday cake each month!" her grandother writes. A specialcare nurse cares for Kandice from 12:30 a.m. until 7:30 a.m. so that Tami can catch up on some much-needed sleep. Tami and her mother care for Kandice and her 7-year-old brother the rest of the 16 hours. Says Annette, "It's a long, long day."

While hoping for "a miracle", the Knowles family does have the practical need for funding. "At $30 per hour, it is a tremendous onus on us ... The minimum cost (to place Kandice back into the Sick Children's Hospital) is over $2,000 per day ...."

Is the price for life too high? If you want to know, ask the Knowles family. Ask a mother who loves her baby daughter enough to make sacrifices for her. Finally, if only you could ask Kandice herself. Says Annette of her granddaughter, "She's a fighter and tries so hard to live." "Today", according to the Knowles family, Kandice "is doing very well." [Vancouver Sun, 6.8.94: A6] 
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"DOCTOR SUED OVER WRONGFUL BIRTH"

In sharp contrast to the Baby Kandice affair, Jane and Robert Sanders, a couple from Winnipeg, contest that their now four-year-old son should never have been born. To prove their point, they are embroiled in a legal battle to sue a local doctor. The couple's lawyer claims that Dr. Helga Sickert failed to inform the Sanders of the results of an amniocentesis, a test which could have confirmed any abnormalities.

The mother of little boy Lee, says that had she known that their son would be born with Down syndrome CCT, she "probably" would have aborted. Lee also suffers from deafness, visual impairment, is unable to speak, and is unable to eat solid food. The couples lawyer estimates the cost of caring for Lee ranges from $3.9 million to $6 million, based on an estimated lifespan of between 40 and 55 years. [Vancouver Sun, 9.8.94: A6] It is believed that "A ruling in the couple's favor would have wide-ranging implications in the fields of ethics, law and medicine." [Id., Doctor Sued Over Wrongful Birth ....]

 
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FATHER CHARGED WITH FIRST DEGREE MURDER OF DISABLED DAUGHTER

In November 1993, Canadian farmer, Robert William Latimer, was released on $10,000 bail pending a court hearing to have taken place in May of this year. Latimer was charged with first degree murder of his 12-year old  daughterTracy  Lynn, who suffered from cerebral palsy. The Provincial court Judge, Lloyd Deshaye "granted a publication ban" on evidence presented at the preliminary hearing.

This tragedy was reported to Wilkie RCMP on October 24th when authorities were called to the Latimer farm. Latimer initially claimed that while his wife and three other children were at church, his daughter "passed away in her sleep". An autopsy showed that Tracy's "blood samples were 82 per cent saturated by carbon monoxide poisoning." [North Battleford Telegraph, 10.11.93: 1] Latimer later confessed that he had placed Tracy in a half ton truck to which an "apparatus [was] hooked up from the exhaust to the interior of the vehicle." [News Optimist, 15.12.93: 2]

On November 12, 1993, Latimer was released on bail on the promise that Latimer would "pose no danger to himself, his wife Laura, or their three children." Latimer was required to relinquish all and any weapons, firearms, and explosives he may have in his possession. It was pointed out at the hearing, however, that Latimer "enjoys a good reputation", and is "known to be a good citizen." [North Battleford News, 10.11.93: 1; and 15.12.93: 2; The News Optimist, 27.4.94: 1]

 
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"MERCY KILLING SEEN ON DUTCH TELEVISION"

Recently, a one-hour documentary showing the actually killing of a patient by a doctor, was viewed on Dutch television. The documentary Death Upon Request, chronicled Cees van Wendel de Joode's "counselling sessions with physicians in late 1993 through his birthday night, March 4, when he died by lethal injection administered by his personal physician Dr. Wilfred van Oijen." Sixty- three-old de Joode, suffered from ALS (Lou Gehrig's Disease). As the doctor injected his patient, de Joode's wife "rested her head wearily on the physician's arm" and said,  

So peaceful ... He looked so relaxed ... We've done everything together, only I can't go with him now ... It's finally over. It's finished. [Mercy killing seen on Dutch television, Vancouver Sun, 22.10.94: A25]
IKON Television director Maarten Nederhorst, "provided a tape of the film to Reuters before it was due to broadcast" on the same day. In one scene, "the somber doctor" explained his feelings while driving his car,

Something has been asked of me and I feel I must honor it. If I didn't, I would be letting the patient down.

As the scene progresses, Dr. Van Oijen was asked "if euthanasia was not at odds with the biblical commandment that forbids killing." Van Oijen, who says he performs euthanasia "three or four times a year", answered,

Killing is the worst thing imaginable. But it is quite different for me as a doctor to help a patient not to suffer any longer than he wants.... [Dutch TV to show doctor performing euthanasia, Reuters, 20.10. 1994]

 

BOOK REVIEW Uncommon Will: the death and life of Sue Rodriguez, by Lisa Hobbs Birnie & Sue Rodriguez, Macmillon Canada 1994.

The most famous suicide case in Canada is that of Sue Rodriguez. In the closing chapter of Sue Rodriguez' book co-author Lisa Hobbs Birnie, disclosed some psychological secrets of Ms. Rodriguez suffering, publicly unknown, prior to her alleged assisted suicide. As her disease progressed (ALS), her pain and symptoms were under control. "At one stage, Sue counted a total of 18 professionals involved directly with providing her care." Uncommon Will ... reveals that Sue was a very strong willed individual, who loved the media attention with a passion. Once the media attention dwindled, she became "bored". [p.80] Ms. Birnie describes Rodriguez seeing "her suicide as a solution that is efficient and practical", and who "refuses to allow into her consciousness those who might question or oppose her." Birnie describes Rodriguez' apathy, saying,

She is indifferent to beliefs that there are deeper truths beyond the appearance of things and that these must be explored and encountered in the process of becoming fully human. [p. 170]

The book reveals that she was depressed and abandoned by her family. For instance, in the last year of her life, her husband told her he had a girlfriend; and her mother stopped visiting and even phoning her.

Ms. Birnie had earlier written that Sue asked Birnie to speak to Sue's counselor:

Dr. Elder is a registered grief counselor with the Association for Death Education. She has a Ph.D. from the University of Victoria in counselling psychology ... Dr. Elder said she saw Sue only occasionally after her determination to take her own life. Said Dr. Elder: "Sue had an aching soul, and never had internal peace. She wouldn't let love in, and when you are starved for love, you sabotage any attempts people make to give to you.

There's a sort of attitude: love me, leave me alone. If you love, you can forgive and let go of the anger. I can say goodbye without a terrible resentment. But anger was Sue's foundation. Her identity was based on it." [pp. 137 - 138]

Hobbs Birnie described Sue Rodriguez's conflict with her family, which caused her tremendous grief, is depicted as follows: 

Though she is funny, charming and sweet socially, Sue's anger remains her foundation. She will take the cause of this anger, whose roots trail back into child hood, unexamined and unresolved with her to the grave. She struggles to overcome resentment toward her mother: the will to forgive is there but so is the power of anger.

Toward Henry [her husband] she makes no such effort: her attachment to this anger is deep. She nurtures it with sullen words and sharp rejections to his overtures of friendship. She knows the ambivalence of his support springs from a genuine agony but she cannot relinquish her rage despite its hair-breadth distance from overwhelming need and grief.

Revealingly, in her financial affairs she has made arrangements to maintain control even after her death. She has kept secret from Henry the fact that, shortly after he moved back home following her diagnosis, she saw her lawyer and changed the "title in common" to their home to "tenants in common." She drew up a list of restrictions: Henry cannot rent the house; he cannot cohabit there with a spouse; the house must be sold after three years; her share of the equity must then be put in trust for Cole [her son]. A month after her death, Henry is to be informed of this change. [p. 171]

In one passage of her book, a most pitiful incident is revealed from the private disclosure of Rodriguez' life. I think, if I were her child and read it, it would effect me the rest of my life and I would feel tremendous guilt. Ms. Birnie begins by saying: 

During the summer, something happened that steeled Sue's resolve to end it before she lost all control, and before her son, Cole, suffered too much. It was a very small incident but to Sue highly significant. She was in her wheelchair in the garden. Because she was no longer able to flick them off her body, Sue had developed a small phobia about bugs and spiders. Cole was pushing her wheelchair when he started to push it into a spider-web strung between the bushes. She cried out for him to stop.

To her anger at Cole and fear of spiders, was added a profound sense of helplessness, of being trapped. She cried at Cole: "No, no, stop," but he went ahead and pushed through the web, which had a big spider in the middle. Said Sue: "it's a childlike thing; he thinks it's funny .... He's hurting terribly because he knows he's going to lose his mother, and he takes it out on me sometimes. It makes me think about what it would be like if I waited until the end, the helplessness of it all." [pp. 129-130] Hobbs Birnie asked Sue the biting question: 

I can hear how my words sound, and how cruel my next question, yet I feel compelled to ask her again: "And you, if you were surrounded by love, by a family that hugged and kissed you and brought hot soup, and a husband who held you precious, brought you flowers, rubbed your back. Sweet Suzie, would you now be doing this?"

She replies with her usual honesty and integrity: "I don't know. I don't know." Each word was emphatic: I ... don't ... know. She can hardly breathe for grief. [p. 168]

At her death, was Member of Parliament, Svend Robinson, and "an unnamed physician who had assisted Sue Rodriguez in taking her life ... The only other person to know that Sue's death was planned for that day was her husband, Henry Rodriguez." [p. 178]

Sue Rodriguez became a household name, and some have even described her as a hero, claiming her decision to commit suicide was rational. Suicide is a tragedy, and no less so with Sue Rodriguez. We lament that Sue chose a tragic exit. However, Rodriguez' response to Hobbs Birnie's question (above), brings us to note the following:

Two incorrect assumptions are often made about suicides that follow a physical illness, particularly by advocates of rational suicide. One is that these individuals are free from mental disorder an assumption that existing medical literature controverts. The second incorrect assumption is that the physical illness is the only basis for the suicide decision.

Clearly the physical illnesses that precede suicides range widely in their direct lethality and morbidity. As is the case for those with other social handicaps, such individuals may be seeking escape not only from the debilitating effects of their illness but also from the rejection they suffer from others. When rejection changes to care and acceptance, the suicide choice may be abandoned.

Such was the case, for example, with Larry LeBlanc, a fortyyear [sic] old man with multiple sclerosis. Following onset of his illness, LeBlanc felt rejection keenly. His suicide attempt at age twenty-six was stopped by a friend. LeBlanc later developed more satisfaction with his life and was drawn into new relationships. Ironically, twelve years after his own attempt, he sought to preserve the life of another victim of crippling physical illness: twenty-six year old Elizabeth Bouvia had cerebral palsy and claimed she was physically unable to kill herself. Although she was not terminally ill, Ms. Bouvia sued in 1983 for the right to reside in a California public hospital, where she hoped to starve to death by refusing to take in nourishment. LeBlanc's comments on the case display the views of this one time suicide attempter in favour of life. He felt the case would "affect thousands of people whichever way it goes. She [Bouvia] can succeed [in winning a right to starvation] and take a lot of handicapped people with her or she can pull back from the abyss, go on and give a lot of people the courage to go on fighting with her." Whether or not one agrees with Le-Blanc's philosophy of life for a disabled person, the reversal from his previous suicide decision could not have been more complete. [Thomas Marzen, et al., Suicide: A Constitutional Right?, DUQUESNE LAW REVIEW, Vol. 24, No.1 Fall 1985, pp. 132 - 133]

While some inaccuracies do exist in Uncommon Will..., particularly in reporting the involvement of CHN and Campaign Life Coalition's appearance before Parliament in 1992; Uncommon Will..., is recommended reading.
[Reviewed by, Cheryl Eckstein].  

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The CHN FACTS-BRIEF is researched and edited by Cheryl Eckstein, president of CHN and is copyright  of the Compassionate Healthcare Network (CHN).

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