Address of Mr Tony Burke, Executive Director of Euthanasia No! to the NSW Legislative Assembly

Wednesday, 16 October 1996

[Mr Tony Burke was conducted by the Serjeant-at-Arms onto the floor of the Chamber.]

Mr BURKE [10.14]: 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. As all honourable members would know, 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.

If 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 qualities 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 1 ask for a lethal injection, 1 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.

Mado, 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 1 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.

Thank you for the opportunity to speak. I wish you well in your deliberations.