The future-of involuntary euthanasia is here

Thomas Cagle (nh-adapt@juno.com)
Mon, 27 Jul 1998 17:53:46 -0400


--------- Begin forwarded message ----------
From: Gregor Wolbring 
To: NDY Activist's
Subject: 
Date: Mon, 27 Jul 1998 11:31:15 -0600

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 incurably 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.

One characteristic of the target group for elimination is that
their characteristic is viewed in a negative way. Their
characteristic is devalued and associated with the thought that
their characteristic is a burden to society and ensures a low
quality of life to the carrier of this characteristic.