Argument for voluntary euthanasia
Professor Baume
First, six brief stories. The first concerns Motte Gur, an Israeli commander,
who captured the holiest place in Jerusalem in 1967. In 1994, faced with
a painful terminal cancer, General Gur took his own life.
The second story concerns Jacqueline Onassis,
who left hospital one day and died the next at home surrounded by family
and friends. At the very least, she dealt with her painful terminal condition
by choosing the place of her dying.
The third brief story concerns a British medical
practitioner who was found guilty of murder a few years ago for having
performed voluntary euthanasia. The British court gave him a derisory sentence
and the registration authority in the United Kingdom declined to take any
action against him.
The fourth brief story: last year in this
State a Mr. Hoddy was found guilty of assisting in the suicide of a lover.
Again the sentence was derisory.
The fifth story is well known to you all.
A brave and determined man named Bob Dent ended his own life just a few
weeks ago, in accordance with the law, at a time and a place, and in a
manner of his own choosing.
The final story concerns the famous British
author Professor Richard Dawkins, who on the day Bob Dent’s death became
public said, “On the subject of euthanasia, today, if I was an Australian,
I would be proud to be an Australian.” He was echoing the sentiments
of 78 per cent of Australians on this matter. Death comes to us all. Being
dead does not matter. It is a consequence of being born. It is a final
universal experience. But getting there, how we die, does matter, and many
of us do not find the gentle or sudden death for which we hope. Many of
us here will find only wild deaths at the end of the road. We may wish
that it was otherwise, but it is not.
Voluntary euthanasia is an expression of the right of people to take
decisions about themselves for themselves. It gives expression to the value
of autonomy and to the concept of sovereignty, a concept which has been
upheld recently in courts in this country. It is opposed by those who,
whether or not they will recognise it, wish to tell other people how they
must behave in a matter concerning them alone.
The Wolfenden Committee in the United Kingdom
addressed this very point when it asserted that, unless there is a desire
to mix sin with legality, there are some things that are no business of
the law to forbid. Let us look a little more at this question of autonomy.
Autonomy is a philosophical ideal which has been supported by people like
Kant, Aquinas, Cardinal Newman, and which was supported publicly and recently
by the last Governor-General in this country. Yes—we know that power is
unequal between medical practitioner and patient; yes—we know that many
medical consultations are the meeting of two unequal people; and yes—we
know that medical concepts are complicated, but we assert that it does
not have to be a case of “doctor knows best”. We assert that change
is necessary and that taking decisions for other people is no longer appropriate.
We assert, too, that one task of the modern practitioner is to make each
patient sufficiently knowledgeable and powerful about his or her own condition
that he or she can take vital decisions himself or herself.
Some of our opponents—those who make car stickers for example—extol
the sanctity of life. Such an argument would be easier to accept if there was
not so much evidence of the same people having killed, of having burned
people at the stake, of having tortured people, of having sponsored wars
across Europe, of having stood silent while there was genocide. Such assertions
would be easier to accept if there were not moves by some of the same people
to reintroduce capital punishment, or people extolling the need to have
religious persons in armies whose purpose is to kill people, or if we did
not see so much wanton disregard for life around the world today—too much
of it based on different ways of worshipping one god. But let us turn to
palliative care, that is, care whose aim is the control of symptoms. Palliative
care is valuable and its recent development has been substantial. But there
are perhaps 5 per cent of people for whom even the best palliative care
does not relieve symptoms, and there are some symptoms from which relief
can be obtained only at the cost of loss of consciousness or loss of individuality.
Let us be clear here. It looks as if good quality palliative care, best
quality palliative care, will relieve symptoms for about 95 per cent of
people. But, Mr. Speaker, the moral problem for the remaining 5 per cent
is a real one for you. It is real if even one person is unrelieved. It
is as real if one person is left without relief as it would be if a thousand
people were left without relief. Let us be clear, too, that there is no
reason in New South Wales to consider anything except voluntary euthanasia,
that is, an act performed as the result of a sustained request by a competent
person.
Euthanasia goes on now in New South
Wales contrary to the law. In fact, about 2,500 medical practitioners in
New South Wales today say they have actively hastened the death of patients.
Sometimes this occurs by not treating illnesses— especially inter current
infections—sometimes by increasing doses of narcotics to fatal levels,
and sometimes by more actively and directly ending life. So
do not imagine that it does not occur, for it does—every day.
It occurred yesterday; it will occur today and it will occur tomorrow.
Our present laws mean that when it occurs now it is outside the law, it
is unregulated, it is without limits, it is without supervision and it
occurs without rules. Government controls what laws we pass in New South
Wales, and many of us believe that we, as a community, can do better than
we do now with voluntary euthanasia.
A final point that you may wish
to consider: about 15 per cent of us will become incompetent in the legal
sense before we die. That means that we will no longer be able to make
binding, vital decisions about ourselves for ourselves. Only
if you complete an advance directive and or appoint an enduring attorney,
both in legally binding terms—as I have done already—while you are well
and competent can any practitioner know for certain in the future what
your wishes might be.
So in summary, Mr. Speaker, first let us agree that the question is
one of how we are to die. Second, let us state quite firmly that palliative
care should be available in this State for all who need it. Its practitioners
are doing more clever things, and they will continue to improve what they
do year by year. There is no argument from supporters of voluntary euthanasia
about this. But even the best palliative care will not relieve all problems.
Third, let us regulate and control voluntary euthanasia rather than leaving
it illegal and uncontrolled as it is now. It is at present an activity
totally unregulated. One disturbing effect of current arrangements is that
the powerful and wealthy are more able to get access today to palliative
care and to euthanasia than are the powerless and poor. In the process
of bringing voluntary euthanasia within your control many people might
benefit. But fourth, and most importantly, let us recognise the rights
of people to make victimless decisions about themselves for themselves,
and then let us ensure that only those considered views are acted on under
the laws of New South Wales. No-one saves lives. Everyone dies. Death is
not the problem. It never has been. Sometimes dying takes months of suffering;
sometimes death creeps up on people, visible and inexorable. What is being
sought in this debate about voluntary euthanasia is to empower more people
to have control of their own deaths. Our goal is to help ease
their way, to recognise the right which people have to sovereignty over
themselves, to make the completion of their lives less unpleasant than
it is today. Nothing more.
Argument against voluntary euthanasia
Mr. Tony Burke
I am not a professor, not even a doctor. I guess I am in the same position
as most of you. I too, have seen people I love die, some quickly, some
slowly, some peacefully and some in circumstances that you could not wish
on anyone. But out of all that, we have to come to some sort of position
about public policy. Emotional reactions to our own experience are
going to be a part of that process, and that is fair enough. Any policy
that disregards our own experience is going to end up as bad public policy.
But at the same time, a change in the law, particularly the sort of change
that no parliament in any other country in the world has been willing to
make, will have far-reaching consequences. Ignoring those consequences
is every bit as callous as ignoring the personal experience.
The history of this debate around the world has been a history of people
changing their minds. Whether it has been the House of Lords inquiry, the
New York State task force or the Canadian Senate inquiry, people who entered
the debate with no personal objection to euthanasia have consistently and
overwhelmingly concluded that it could never be safely legalised. I fall
into a similar group. My initial reaction when first asked was to say that
it seemed reasonable. I now speak with sincere and passionate opposition
to legalising euthanasia. For me there were two key factors in changing
my mind.
The first was my strong personal opposition to capital
punishment and the second was meeting someone, a particular person who
had been living with HIV for 12 years. On three occasions he had been told
he had less than 12 months to live. On one of those occasions he was told
he had only three months to go and requested euthanasia from his doctor.
Had it been legal he believed he would not be alive today. Instead, he
lives, works, and is glad to be alive.
This debate is about legalisation—about passing
a law and accepting a package of consequences, or choosing a different
path. I want to talk about three things: what this debate is not about;
what euthanasia does involve; and who would be affected by legalised euthanasia.
This debate is not about the separation of church and State; it is not
about regulating current practice; and it is not a simple issue of personal
autonomy.
As far as the separation of church and State
is concerned, I do not believe you have to be an atheist to be allowed
to have an opinion on this issue. Everybody has principles which affect
his or her approach to issues. Some people will have a secular philosophy,
others will have a religious one; some people will be as actively anti-church
as others are pro-church. It is true that the churches have taken a stand
on this issue, and so they should. If you were to compare the record of
successive governments on both sides with the record of churches in providing
support, care, dignity and relief from pain for people who are dying, then
successive governments would come second. Churches have poured tremendous
resources into helping people through the crises that accompany a terminal
illness; of course they have a right to be part of this debate. But it
is simply dishonest then to characterise this as a church-State issue.
If it was, you would not find at the forefront of opposition to euthanasia
people like the former neurophysiologist Dr Colleen McCullough, with no
religious belief; the eminent psychiatrist Professor Frank Varghese, an
agnostic; or the Director of Intensive Care at Royal North Shore Hospital,
Professor Malcolm Fisher, who describes himself as a born-again heathen.
There are religious and non-religious people on both sides of this debate.
Let us deal with the arguments, not the personalities.
One of the most popular arguments from
supporters of euthanasia is to say, “It’s happening already.” It is very
similar to an argument that comes from the most extreme supporters of gun
ownership in the United States: “Some people will still get their hands on fully automatic weapons so you shouldn't ban
them. Instead you should regulate them so you can control the
situation.” At the end of the day you legalise something if you support
the law and its consequences. If you do not support it, you do not legalise
it. Normally when a law is being broken—and name a law that never gets
broken—the response is to develop strategies to encourage people to obey
the law. I find it just a bit arrogant to have some doctors tell us that
because those breaking the law are a minority of doctors therefore it must
be the law that is wrong. But beyond that, would legalising euthanasia
do anything at all to regulate those who are now breaking the law? It seems
odd to be told that people who are willing to break the present law when
they disagree with it are going to suddenly become good law-abiding citizens
if a euthanasia law is passed. If you are willing to break a law that
states that lethal injections are never okay, why would you be constrained
by the safeguards in a law that stated that lethal injections are sometimes
okay? Those who are willing to disregard the law when they disagree with
it will certainly disregard any safeguards when they disagree with them.
And if the safeguards have been disregarded, realistically, how is anyone
going to know? Every time an abuse occurs the one witness will be dead.
So long as the paperwork is in order, no questions will be asked. Debates
do not become as heated or as passionate as this one has been if they are
simply about regulating current practice. The final thing that this debate
is not about is that it is not a simple issue of personal autonomy.
While suicide is an important issue, euthanasia
and suicide are different. By always involving a second person, euthanasia
is about how we respond to somebody who is suicidal. It is about that response,
from the doctor, from the community or from the Parliament. That is why
it can never be simply an issue of individual rights. If it only involves
an individual then, by definition, it is not euthanasia. We have to consider
that response. If it were simply about empowering people, then one would
expect the groups representing those affected to be leading the charge.
I know that the supporters of euthanasia and one member of this Parliament
in particular have been fond of naming famous people who support euthanasia:
Dick Smith, Marcia Hines, Harry M. Miller, Olivia Newton-John. I do not
know anything about their position on this issue, nor do I know where Kylie
Minogue stands, but I do know this. Of all the groups representing people
with a terminal illness there is only one that has a pro-euthanasia position;
of all the groups in this State representing people with disabilities there
is none with a pro-euthanasia position; of all the groups representing
senior citizens in this State there is none with a pro-euthanasia position;
of all the groups that represent those who on a daily basis care for those
in the most extreme circumstances there is none with a pro-euthanasia position.
The
Coalition of Organisations for Voluntary Euthanasia, with which Professor
Baume is involved, has as one of its commitments that legalised euthanasia
should apply to people with disabilities even if they do not have a terminal
illness. You do not have to look far to find the slippery slope.
That
policy was adopted without consultation with disability representative
groups, and after the New South Wales Disability Council had specifically
rejected such an approach. Most people do not realise it, but it has been
groups representing people with disabilities that have been at the forefront
of opposing legalised euthanasia around the world, and they were perhaps
the most significant influence in turning around the Canadian Senate inquiry.
They have argued that this issue is not simply a matter of autonomy or
an inherent right to die by looking at the issue this way.
Take two people: the first person has no disability
whatsoever and is not reliant on any treatment; the second person has some
clear disability and is dependent on continuing treatment to stay alive,
and therefore satisfies the definition that is usually offered for terminal
illness. If both of them go to the doctor with the same autonomy, with
the same choice, with the same rights, and ask for a lethal injection,
what will the responses be? Under every proposal for legalised euthanasia
the first person, with no disability, will be told, “No, you’re valuable.
We can help you through this.” The second person, with the exact
same request, will be told, “Yes, that’s a logical choice. We can help
you do this.” The distinction between who has his or her value reaffirmed
and who is given a lethal injection does not hinge on who makes the request.
The consent is the same in each instance. This debate has to involve doctors
making a judgment about which lives are valuable. The rest of the community
does have a general protection against suicide. If someone is experiencing
suicidal ideation no-one may incite the person to suicide, no-one may assist
the person to suicide, and anyone can take reasonable steps to prevent
the suicide. With legalised euthanasia, certain categories of people lose
that protection. They do not lose the protection because their request
is different; they lose the protection because a judgment has been made
that the person does not have a worthwhile life. The life is deemed not
worthwhile because of sickness or disability. If the doctor believes that
the person has a worthwhile life, then the doctor will not participate.
If people were wanting to deny others the general protection against suicide
for any other reason, be it race, sex, age, sexuality, there would be a
justifiable outcry. For some reason, discrimination against people with
disabilities does not seem to cause so much fuss. I cannot see how you
can set up certain categories of people who if they are suicidal should
be given a lethal injection without devaluing the lives of the people in
those categories. I cannot see what is so compassionate in telling somebody
who feels worthless that he or she is right. No-one has ever actually proposed
that we all have a right to be killed on request. It is a right that
is only offered to people who the supporters of euthanasia believe might
be better off dead.
These points are all raised to show that much
of the public debate has been misdirected. The debate is about more than
having a secular Parliament, about more than current practice, about more
than choice. So what does euthanasia actually involve? Just over 72 per
cent of the Sydney population and 78 per cent of those who support euthanasia
believe that this issue is about turning off machines. This issue
has nothing to do with turning off machines, or discontinuing treatment,
or providing patients with the most effective forms of pain relief even
though that might lower resistance levels, which could mean that the person
dies earlier than he or she might have otherwise. The euthanasia
debate is about
lethal injections. Some would say, “Well, what’s the difference? You
turn off the machine—the person dies; you give somebody a painkiller—the person
dies; you give somebody a lethal injection—the person dies.” There
does not seem to be much difference. I can explain that difference in a couple
of ways.
First of all, Dr Richard Lim, a member
of Parliament in the Northern Territory who used to work as a doctor in
Alice Springs, referred during the debate last year to a patient of his
own, a young bloke who stopped breathing whenever the respirator was removed.
A decision was made about the value of the treatment—not the value of the
patient—that the treatment was both burdensome and futile and should be
discontinued. His next of kin gave approval that should he die his prior
wish for organ donation could take place. He was wheeled into the operating
theatre, the respirator was removed. This time, for the first time, he kept on breathing. They kept the respirator off for a few minutes more,
returned him to his ward, and a couple of months later he was discharged.
Not some one-in-a-million occurrence; just part of the understandable inability
of doctors to offer an accurate prognosis. There are important issues in
deciding when to discontinue treatment. But ultimately, if you turn off
a machine the person will die only if the sickness or disease kills him.
The cause of death is not the doctor. There is a simple test which always
tells you whether or not you are dealing with euthanasia. That is to ask:
what would you do if the person lived? If you turn off the machine and
the person keeps living then you keep caring for him. If you give somebody
a painkiller that you know might hasten his death but he is still alive,
then you do not give him a further dose unless it is required for more
pain. But with lethal injections and euthanasia, if you give somebody a
lethal injection and he is still alive for some reason, you give him a
higher dose immediately and continue to do so until he is dead, because
that is the objective you are trying to reach. Intention does matter especially
when the intention is to bring about death. So who would it affect? Let
me talk about three groups of people: the people alive today who would
not be, the change in context for people who are dying, and those who,
whether we like it or not, will fear medical treatment because of fear
of euthanasia.
Anyone who provides care for people who are
dying will know of instances where people had been suicidal and rather than receiving a lethal injection
were given support to improve the context of their lives. The data indicates
that while requests for immediate death are rare and are more likely to
come from family members and hospital staff than from the patient, when
they do come from the patient they are more likely to be made at the early
stages of diagnosis when somebody is living with an understandable fear.
Academics can say what they want about Kant and autonomy. When the reality
is that most people who make such a request would, if given the chance,
have a different attitude later on, then you have to consider who this
sort of law really does empower. This is not theory. There are people alive
today and glad to be alive who simply would not be if euthanasia had been
legal five years ago. Mario Bianco, who I know has written to each of you,
says in his own words, “I wanted euthanasia, and I wanted it bad.” After
a serious accident at a building site his prognosis was short. As his situation
improved he was still told he would never walk again. Had euthanasia been
available then he would now be dead. Instead he walked into this Chamber
this morning to hear this debate. He is not alone. Cecily Miner has Behcet’s
disease, which involves, without overstating things, some of the most frightening
symptoms imaginable. In the early stages, had euthanasia been available
she would have taken it up. Christopher Newell is one of the leading advocates
on disability issues in this country. His disability qualifies him for
the Territory law. Years ago he would have taken it up. He is glad that
the only reaction he received from those around him was support. In his
own words: If Dr Nitschke asks for a lethal injection he would be sent
for counselling. If I ask for a lethal injection, I would be sent
to Dr Nitschke. Local disability advocate Joan Hume describes the euthanasia
debate as “putting us out of your misery”. If euthanasia had been around
five years ago it probably would not have affected Ian Gawler, because
he was given a three-month prognosis 20 years ago. Ian argues that informing
someone who is dying that euthanasia is one of their options completely
changes the whole atmosphere in which those people approach their death.
It is one thing for people who feel strong to say, “Yes, I’d like to have
that option,” but the law will also apply to those who are not strong.
When someone is thinking of themselves as a burden, wanting to do the right
thing by their family and the people they love, it is easy to see how this
option itself becomes a new burden to those who are the most vulnerable.
Mario, Cecily, Christopher, Joan and Ian are in the gallery now with an
understandable interest in this debate. Just as the law against automatic
weapons will not stop all possession of automatic weapons, just as the
law against burglary will not stop all burglaries, so too the laws against
homicide will not stop a minority of doctors from practising euthanasia.
But the laws do send a message, they do set a standard, and in the case
of some people, including some within this Chamber now, they do save lives.
It is easy to academically say no-one saves lives, but say that to somebody
who would not otherwise be here today. Their circumstances and experiences
are part of this debate. People who pretend that safeguards would have
saved their lives are kidding themselves. They would have satisfied the
most stringent safeguards and they would have asked. Just as those who
oppose euthanasia are frequently asked, “What do you say to someone in
pain who really wants to die?” so too it is only fair to ask the supporters
of euthanasia, “What do you say to people who would be dead today if euthanasia
had been legal?” Some people are willing to say, “Well, it would have been
their
decision, so that is all there is to it.” But I do not know whether
that is the most compassionate response. There is a maxim often used in
the capital punishment debate which applies perfectly to legalised euthanasia:
“Whether you support it or oppose it in principle, if one innocent person is going to be killed,
that is too high a price.”
On both capital punishment and euthanasia,
I find myself in a minority every time an opinion poll is taken. Polls like to focus on the toughest
case rather than the total picture. There has been a suggestion that this
issue be settled by referendum. Let me be direct. Palming off an issue
like this to a referendum is simply gutless. If some people in the community do not want to consider
the most vulnerable, that does not lessen the obligation on parliamentarians
to protect the most vulnerable. Politicians are elected to take on responsibility,
not to dodge it. Whether the issue is capital punishment, euthanasia, or
even the stuff Pauline Hanson has been talking about, those who are vulnerable
are never going to get a fair go in situations where everyone focuses on
the toughest case.
People in vulnerable situations rely on certain
protections. One of the most basic is: no matter how worthless you might
feel, society will care, heal and try to do everything possible to make
your life as comfortable and as interesting as possible. When I began I
referred to various international inquiries which have all recommended
against the legalisation of euthanasia. It is true that very few people
change their minds about whether they can imagine a case where they believe
euthanasia might be appropriate. But people do change their minds about
whether legalised euthanasia is worth the costs that go with it. Those
costs are real. Some people who would have gone on to be glad to be alive
will instead be dead. Some people who are dying will face the burden of
a new pressure, wondering if euthanasia is the right thing to do for those
around them. Some people will face more insidious pressures as the costs
of health care rise. Some people will have a loss of trust in the medical
system and, as has already occurred in various indigenous and ethnic communities
in the Northern Territory, some people will simply refuse the health care
they desperately need. So how do you respond to the person who says, “I
want you to kill me”? I believe we should respond to the person with
sickness or disability the same way we would respond to anyone else. We
do everything we can to improve the context of someone’s life. That might
mean pain relief, it might mean resources so that people who are dying
can stay at home for longer, it might mean adopting strategies to combat
the underlying causes of depression, such as despair or loneliness. It
will have to involve a real commitment, and that is going to mean resources.
These responses and resources have not been offered in the Northern Territory.
The Northern Territory has the worst standard of palliative care in Australia.
Despite endless excuses from the Territory Government the fact remains
that a higher proportion of people die in pain in the Northern Territory
than in any other part of this country. If the cost of a referendum was
given to supporting people who are in pain and who are suffering then there
would be some positive results with none of the unwanted consequences.
No-one is ignoring the issue of euthanasia. Around the world parliaments
just like this one are considering it, debating it and rejecting it. They
are rejecting euthanasia essentially on the basis of one single unifying
principle: the people who will be most at risk are the most vulnerable,
and a law which fails to protect people who are vulnerable will always
be a bad law.
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