Why Disability Rights Movements Do Not Support Euthanasia: Safeguards Broken Beyond Repair

by Dr. Gregor Wolbring
Advisor on bioethic issues to the council of Canadians with disabilities

Definitions:

• Assisted suicide I kill myself but someone else gives me the tool.
• Voluntary euthanasia: Someone else kills me with my consent.
• Non-voluntary euthanasia: Someone kills me when I am unable to give my consent. (i.e. a person in a persistent vegetative state)
• Involuntary euthanasia: Someone kills me without asking me; therefore without my consent.

There is no country where the disability rights movement is supporting euthanasia. Why is that?

The example put forward to raise sympathy for the right to die movement is the terminally ill competent adult cancer patient in physical pain.

We believe that the agenda of the right to die movement around the world is not just focused on the terminally ill patient, and we even believe that to be fixated on only one scenario within the end-of-life continuum is untenable and illogical.

What are the safeguards suggested by the scenario of the case of a terminally ill cancer patient. There are four.

1. Euthanasia is for a terminal condition, which is defined by most health care systems as 6 months before death.
2. The purpose of euthanasia is to abolish physical pain.
3. Euthanasia is for the person who can give informed consent.
4. Euthanasia is about self-determination.

Let's now examine whether these safeguards are indeed still holding around the world.

1. Terminal Condition
This position is by now abandoned by the right to die advocates around the world. Terminal is just too limited in its ability to cover cases.

Just to give you a few quotes

a) Marilyn Sequin cofounder of dying with dignity said in 1995 on CBC "There are two classifications of people one who have a diagnosis of terminal illness and one who are in constant pain of suffering for which their is no hope of recovery"

b) In 1984 a report of the Royal Dutch Medical Association states the following:" the question whether euthanasia was justifiable if the patient was incurable ill and in the process of dying the comittee felt that apart from the fact that the dying phase could not be clearly defined it was not reasonable to deny a patient who was suffering unbearable the right to euthanasia solely because he was not dying. Consequently it could not longer support the dying phase as a criterion".

c) A paper written by the Canadian bioethicist Prof. Dossetor 'Preserving dignity use of personal directives made in Advance for decision making in healthcare' states "Although an individual may not have any particular affliction that makes life a burden many are fearful of dependency especially if it is degrading and feel entitled to avoid that if possible. Their greatest hope may be to have a peaceful and dignifies end. Personal Directives made in advance are designed to bring this about and to maintain dignity in the process.

d) Eike Kluge another bioethicist and advisor to the BC government on ethical issues states in his presentation to the Senate committee on euthanasia and assisted suicide "if a person suffers from an incurable and irremediable disease or medical condition and if the person experiences the disease or condition as violating the fundamental values of that person....

e) In a legislative approach in Hawaii (1975) the term terminal was omitted

f) John Hofsess right to die society Canada states in his submission to the Senate comittee on euthanasia and assisted suicide "if their is a terminally ill ,incurable ill, and/or severely disabled"... "making the option of assisted suicide available to any competent individual who has a good reason to die"

g) Switzerland their right to die society(EXIT) states in their guidelines "suffering from a serious illness or unbearable condition of health with negative prognosis

h) In a recent fund-raising letter issues by 'Compassion in dying' Seattle they stated "that the newest battle (after the battle with the Oregon right to die legislation was won) would be to secure the right to assisted suicide for people who were not within a few month of death by a terminal illness". They also have in their guidelines the following "Any patient who has been diagnosed by his or her physician with either a terminal illness or an incurable illness that will ultimately lead to a terminal diagnosis is eligible"...

i) Timothy Quill John Fletcher and others proposed in 1994 in the NEJM 4331:119-22 the legalization of euthanasia and assisted suicide for competent patients suffering not only from terminal illness but also for those with incurable debilitating disease. Interestingly in 1992 Quill said euthanasia should not be legalized because access to medical care in U.S.A. is to inequitable and doctor-patient relationships too impersonal to tolerate the risk of condoning active voluntary euthanasia (NEJM 1992 327:1380-84)

j) Voluntary Euthanasia bill 8.11.96 South Australia 1. Persons requesting euthanasia must be hopelessly ill i.e. they must have an injury or illness that results in either in permanent deprivation of consciousness or irreversibly impairs their quality of life so that it becomes intolerable to them.

k) Gallup poll Canada terminal pro 75%/ con 17% ; incurable pro 57%/ con 32%

As the above quotes show the term right to die is not limited to the term terminal anymore. Often the term incurable is used. Now what does that mean for the disability rights movement? With the change of one word, we include now everyone with a condition not viewed as mainstream. Even I, a thalidomide, am incurable! Very likely I will not wake up one morning with my legs being there. An Alzheimer person is incurable, as are people who are schizophrenic, a manic depressive person, HIV positive people. Public perceptions toward these characteristics vary. Certain characteristics are so stigmatized that the public views those people with these characteristics as being better off dead; that is, the quality of life is so low that no life at all is a preferable option. Did you know that many of Kevorkian's cases are not terminal?

The shift from terminal to incurable takes away the first safeguard against abuse. It also opens the doors for abolishment of other safeguards like the one for physical pain as terminations of many incurable conditions i.e. Alzheimer are based on emotional pain.

2. Physical Pain
Now, this has also changed. Emotional pain has been included in the debate. (e.g. in the Netherlands a depressed person was allowed an assisted suicide.). Some quotes again.

a) In at least two legislative approaches the safeguard physical was dropped (Montana/Idaho)

b) Bastable one of the euthanasia celebrities was talking about mental suffering not physical pain.

c) In 1984 a report of the Royal Dutch Medical Association states the following. "Suffering can have any three causes first 1) Pain 2) a physical condition or physical disintegration without pain and thirdly suffering without physical complaints which could be caused by either social factors and the like in a healthy person or by a medical psychiatric syndrome. Pain can be controlled to such extend that in general it is not the primary cause of unbearable suffering".

d) Tape recordings of the first person receiving euthanasia treatment after the implementation of the Oregon right to die law revealed that she demanded it not out of physical pain but out of frustration about her diminishing mobility and difficulty to breath.

e) coalition of organizations for voluntary euthanasia in Australia--"people should be able to ask for voluntary euthanasia on the basis of having a TERMINAL ILLNESS or a SERIOUS PHYSICAL ILLNESS or CONDITION which causes them unacceptable pain or distress (that is, on the basis of having a quality of life which is unacceptable to them."

These are just a few quotes which show that physical pain as a safeguard is abolished. Again this is logical. Emotional pain is much less controllable than physical pain. Some medical conditions like Alzheimer's are not painful in the same sense that the terminal stages of cancer are painful. Instead conditions like Alzheimer's involve emotional pain. People with this condition, and others like it, see themselves starting to depend on other people. They see themselves losing their independence. In a society, where we are brought up with the credo of self-sufficiency, self-reliance and independence, the loss of personal autonomy is for many people more horrifying than physical pain.

But the danger for the disability community is that we broaden the application and the circle of people. And the terms used now are so vague. What is a physical condition? Having no legs is a physical condition. (And interestingly a board member of the Dutch voluntary euthanasia board demanded a few years ago involuntary active euthanasia for the demented elderly, unconscious victims of road victims and thalidomide adults as their lives are of such poor quality). But being a male/female is a physical condition. Being a native, a visible minority, being white, being black... is a physical condition.

The second safeguard has been eliminated.

3. Consent and competent adult
This safeguard is taken away in many ways at the moment.

The most infamous case in the news at present is, of course, the Latimer case. Latimer murdered his daughter, Tracy, without consent. Now, you would think that the right to die movement would fight Latimer as he has broken one of the most elementary safeguards in the euthanasia debate--consent. But if you read the literature of pro-euthanasia people over the years you are not surprised that Latimer is actually openly supported by many of the right to die movement.

Sequin stated in the media that, "...a few vocal disabled groups have been speaking out loudly and meddling in the case. I don't know how Mr. Latimer can receive justice. He has suffered in so many ways and to such a degree none of could ever imagine it." But Latimer is only the best known case of parents murdering their children with disabilities. I will tell you about two other cases.

In Quebec, a mother drowned her son, who had autism in the bathtub. The child was 6 years old. The mother was charged with manslaughter and received a suspended sentence. In BC, a mother starved her daughter, Lynn Baker, 11, to death. Now the daughter had a genetic condition called Rett Syndrome. This Syndrome causes the person who has it not to feel like eating. So the mother used the medical condition as a rationale because she said that her daughter did not want to eat. So far, the mother has not been charged. Now why is there a reluctance to see the killing of a disabled child as murder? Why is the law and the public treating the killing of a disabled child different to the killing of a non-disabled child?

Now are just the above cases indicating that the safeguard consent and competent adult is abolished? Here a few quotes

a) The Dutch voluntary euthanasia society quarterly newsletter printed without comment the exhoration "to kill all handicapped newborn children to breed a stronger race".

b) The royal academy of pediatric (UK) put out guidelines on Sept 1997 that in the following cases it should be allowed to to stop treatments.

1. brain death or persistent vegetative state
2. no chance to avoid death
3. No purpose situation (meaning that someone else decides that the person does not want to live with the disablement
4. the unbearable situation if family decides further treatment is unbearable

c) Eike Kluge in his submission to the senate committee on euthanasia and assisted suicide "Since choice requires values and congenitally incompetent persons have no values the proxy decision maker must look elsewhere. Societies values are the only choice. Further equality and justice demand that the range and options from which proxy decision makers may choose must not be constrained more narrowly than the range which is available to society in general. Hence it follows that if deliberate death is an option for society and if society values would go in that direction than it must be an option for proxy decision makers as well. Advances in neonatology notwithstanding the traditional tendency to safe life at all cost is increasingly being tempered by the realization that invariable to act in favor of life is to discriminate against the young..Consequently if active euthanasia is ethically in par with passive euthanasia amendments to legislation must not discriminate against those who have had no opportunity to formulate values that would guide their decision making

d) Prof. Eike Kluge in his submission to the Senate comittee on euthanasia and assisted suicide: "any person who suffers from an incurable and irremediable disease or medical condition and who by reason of incompetence is unable to make applications to court"..."in an event that such values cannot be satisfactorily ascertained the court shall use the values and standards currently accepted by Canadian society".

e) Eike Kluge is also on record from a hearing regarding Lynn Baker as having said that children should have the right to decide whether they want to die.

f) Sequin "We must allow all mature competent persons the freedom to choose the time and manner of dying. While the primary issue for dying with dignity Canada is the right of all competent persons to choose the time and manner of their own death, this advanced set of guidelines in the UK for quality of dying for children causes one to ponder how differently Mr. Robert Latimer might have fared in his first trial, for alleviating the suffering of his desperately disabled and pain- ridden daughter. We can only hope that his new trial to commence this fall will demonstrate both compassion and justice for Mr. Latimer who has already suffered well beyond the understanding of most in society

g) The Dutch health council proposed in March 1987 a model Aid in Dying law that would allow any child of 6 and older to make a death request even against the will of the parents.

h) In 1988 a KNMG working group condoned euthanasia for malformed infants

i) In 1991 the KNMG condoned killing of patients in persistent coma

j) Anorexics should have the right to starve themselves to death according to Birmingham University Lecturer Dr. Heather Draper."Only individuals can say whether their lives are meaningful" she told a conference on medical ethics and defended allowing teenagers to make a rational decision not refuse to eat (Brisbane Sunday Mail 6/7/97)

k) In a legislative proposal in Wisconsin an euthanizable age of seven was proposed

l) Prof. Peter Singer, past president of the international bioethicist society (Practical ethics 1979/2ed 1992) states, "When the death of a disabled infant will lead to the birth of another infant with better prospects of a happy life, the total amount of happiness will be greater if the disabled infant is killed. The loss of a happy life for the first infant is outweighed by the gain of a happier life for the second. Therefore if killing the hemophiliac infant has no adverse effects on others it would according to the total view be right to kill him."

Now, here we see the removal of another safeguards--consent and competent adult. In order to be legally competent a requirement for being able to consent you have to be 18 years old. The abolishment of the 18 year old consent competent adult system is logical as how can you say to a child with cancer or AIDS, "Hey, tough luck you have to suffer until you are 18 years old and then someone can help you die." So it is clear that this safeguard which is put forward in order to sell the first step in the euthanasia legislation is not realistic and not logical. By the way infanticide as proposed above in many quotes is done quite regularly and promoted not just by Singer. According to a dpa (Deutsche Presse Agentur) report from 2.2.98 40% of the death of mentally ill children in the Netherlands is caused by physicians. And indeed if you know someone will have a condition that will lead to pain in the future, why not prevent the bad life before it begins. That, by the way, is the bases for justifying many genetic tests. You prevent someone being born with a condition which would make their life not worth living. As there is no consent ability someone else will decide for the to be person and for the born infant. Latimer did nothing else. He just decided for his daughter when she was older. But consent is never the point. Encouraged by the sympathy for Latimer in Canada, the Hemlock Society put out a press release on 3 December 1997 which stated,

"Unfortunately our proposal has been enacted in only one state--Oregon. Even with such a law, There are many people suffering from chronic and terminal illnesses who beg either to have their lives ended or who are not competent to make this decision and are in those instances assisted by a loved one. We suggest that if these cases are to be prosecuted they should be treated as special crimes of compassion and evaluated separately. The criteria might include the person's wish to die, the person's medical condition, the family concurrence, the alternatives available, and the motives of the person being tried. In the case of a minor or an incompetent adult, the law now allows life or death decisions to be made by a designated health care agent and/or a family member in most jurisdictions. Some provisions should be made for a situation in which life is not being sustained by artificial means that is in the belief of the patient or his agent is too burdensome to continue. A judicial determination should be made when it is necessary to hasten the death of an individual whether it be a demented person, a suffering severely disabled spouse or child."

4. Self determination Sue Rodriguez based her argument for legalization of assisted suicide on self-determination and the right to die movement was fast to state that people with disabilities should have the right to determine when they want to die. Not being able to would be discriminatory. Now let's investigate these two points. If self-determination is so important, than Latimer should be condemned. Svend Robinson, of course, is spearheading the assisted suicide issue and called Sue Rodriguez his friend. We did not hear him speaking out against Robert Latimer. To the contrary, he is cited in different newspapers that he has not made up his mind regarding the Latimer case. In addition, he is on record as putting forward a motion in the House of Commons to not only legalize physician assisted suicide but also mercy killing. Obviously, Robinson does not believe in self-determination. He is violating the only reason under which Sue Rodriguez wanted to commit suicide. Some quotes again

a) Terminally ill patients who are mentally incompetent are four times more likely than competent patients to have CPR withheld and more than twice as likely to have other treatments such as tube feeding or intravenous hydration withheld 1994 AJM97 pp235-241.

b) A survey by the NIPO Institute (Netherlands) obtained the result that 76% favored voluntary euthanasia whereas 77% agreed with non voluntary euthanasia meaning killing your dead or mom out of mercy for example.

c) A British study found that the support for voluntary and involuntary euthanasia was in the 80% range.

Now, let us address the point that discrimination exists if society does not find ways for people with disabilities to commit suicide. Now every time I hear this argument I get very angry. Let's examine the situation of people with disabilities in this society! The majority of us are unemployed --up to 80%. If we are employed, the majority of us make less than $20,000. In the last 10 years, the number of people employed within the Federal Public Service has decreased and we are the only group designated by the Federal Employment Equity Act to experience this decrease in public service employment. In the academic world, there is a lack of people with disabilities. There are no disabled people in the bioethics field in Canada. There are many university departments of women's studies but as of yet no departments of disabilities studies. On most issues we are not heard. The right to die debate is between the pro-life camp and the right to die camp with us being the object of discussion. The same with the debate on reproductive technologies. We hear from many people that using prenatal tests for sex selection with the option to abort is wrong because it violates Canadian values and is against the principle which of human life and dignity. However, disability selection with the option to abort is considered acceptable by many (see the Royal Commission Report on New Reproductive Technologies and the Gene and reproductive technology bill C- 47).

The above shows that society really doesn't care about discrimination against disabled people. And for sure we never received any support in our fight for access to society from the people who use the discrimination argument to enhance our access to death. And I could cite many more examples. But now regarding assisted suicide. We have suicide prevention programs targeted at youth. Our society seeks to prevent suicide. For various reasons many people would like to be dead. Many young people commit suicide and even more native youth commit suicide. Now, most of the time they have dreadful deaths. I must remind you that assisted suicide is about an easy painless death.

Every person with a disability can commit suicide--just forego food and water. But assisted suicide is about an easy death. Assisted suicide is about suicide with dignity. Why do we not offer youth and natives access to an easy death. Why are we not offering them access to a suicide with dignity? Or the prisoner. A long term prisoner would often prefer death over a life sentence. So if you really want no discrimination you have to give EVERYONE access to a death with dignity. To use the discriminatory argument on the disabled is discriminatory.

And further. Many people with disabilities are suicidal due to the societal oppression they face. For example, in a study done by the DisAbled Women's Network (DAWN) of Canada the following results, that demonstrate society's oppression, were obtained: 51.8% of disabled women have experienced sexual abuse, 66.3 % emotional abuse, 43.1 % neglect, 34% have experience abandonment, 58.7% had thought about killing themselves. To be very clear here. If it wouldn't have been for my parents who were so damn supportive by just accepting me for who I am and believing that I am worth as much as the rest of the population and their fight for my rights, I might have never developed the strength to face societal prejudices against me--society's constant recital of the refrain that I am a tragedy. What happens to the people with disabilities who are not so lucky as to have supportive families. What about people who become disabled. We know that an individual needs about 7 years to come to terms with an acquired disability and many are depressed when they are becoming disabled. Now, all of a sudden, it is discriminatory not to help them to die. I think it is discriminatory not to help them come to terms in a positive way with their new situation. As Carol Gill writes in Issue in Law and Medicine Vol.8/1 1992

"The discriminatory treatment of disabled people who express a desire to die begins with the initial interpretation and labeling of that desire. When a non-disabled person reveals a desire to die ordinary it is categorized as suicidal and the person is treated accordingly. For persons with severe disabilities however particular persons who use a respirator, feeding assistance or other life aids the desire to die acquired labels such as refusal of treatment a wish to stop prolonged suffering or dying a desire to let a terminal disease take a natural course (used in cases of long term disability lacking any evidence of terminal illness) and not committing suicide. The implication is that there is something natural reasonable or proper about a disabled person's dying as opposed to a non-disabled person's dying."

Now as a side observation. What happened to some other proposed safeguards e.g. like you have to demand euthanasia often over time? Gone!

a) A survey in 1990 in the Netherlands showed that the interval between the first request of euthanasia and it's performance was 1 day in 13% no more than a week in 35% and not more than a fortnight in another 17%

Or that a person should not be in a depressed state? Gone

A) One of the physicians in Oregon turned the request of the above case away because he felt the patient was depressed.
B) The NEJM reported in 1996 that 66% of psychiatrists surveyed in the Netherlands believed physician assisted suicide is an acceptable outcome for some who suffer a mental illness.

Let's recap.
The disability rights movement is opposing legislative reform in a number of areas: legalization of euthanasia, mercy killing or assisted suicide and amendment of the Criminal Code to include compassionate homicide.

We believe that every safeguard put forward at the beginning of the debate has already been broken beyond repair.

We believe that as long as disabled people are viewed as a suffering entity, as an object of charity, as a life not worth living, we cannot accept the broadening of our access to death. It is not without a reason that studies show that the support for euthanasia is greatest among the healthy and young and lowest among the elderly and frail and the ones with the least control over their lives.

We believe that the legalization of euthanasia will force people to be euthanized in a misbegotten effort to do the right thing: save their loved ones from financial ruin, remove family members from the care taker role, cease to be a burden on the state. In a time where the percentage of elderly people is increasing and governments are reducing health care budgets and more and more people are without a circle of friends to support them, people find themselves facing the societal reality that There is a decreased willingness to provide social and economic support. The British Medical Journal reported on 29 October 1994 that, "People in Britain are more likely to request euthanasia to avoid being a burden on their relatives than because they are in pain."

We believe that the majority of death wishes are based on a lack of support and understanding for the individual by society.

We believe that euthanasia is another technique to free society of unwanted members of society among them disabled people and another expression of the ableism in western societies.

We and others believe that the proposed legislation do not have the good of the patient in mind.
A) The bioethicist Daniel Callahan and attorney-ethicist Margot White reviewed bills introduced in 12 states (U.S.A.) that would permit assisted suicide; in 6 states the bills were modeled after the Oregon law. They found that with regards to safeguards concerning informed consent, mental competence, voluntariness, and restriction of eligibility to the terminally ill, all 12 bills had the same failings as the Oregon law (or were even worse). Callahan and White concluded that the bills appeared to be primarily written for the protection of doctors not patients.(Callahan and White 'the legalization of physician assisted suicide: creating a regulatory potemkin village' University of Richmond law review, 1996,30:1-83

We believe:

it is NOT about self-determination;

it is NOT about physical pain;

it is NOT about the cancer patient.

We believe it is about fear. It is about prejudice. It is about negative perception of a characteristic.

We believe it is about that society decides for which characteristics the use of assisted suicide or euthanasia measurements are okay.