John Graham is a NSW Labor member of the NSW Legislative Council
I support the Voluntary Assisted Dying Bill 2017. In the last week a prominent Sydney tabloid newspaper—the Sydney Morning Herald—published an article about this bill under the headline "A matter of life and death". I reject that description. This is not a matter of life and death. If it was, I would oppose the bill. If it was, I would choose life. If it was, it would come up against one of the most fundamental human instincts—to fight for life. Humans do rage against the dying of the light; we cannot help it. This issue is not a choice between life and death. It is a choice between death and a horrible death; between a sad death and a sad, painful death; between the tragedy of any death and the tragedy of a lonely death. Faced with that choice, I intend to support the legislation.
I believe this issue should be settled between citizens, their families and their doctors; not citizens and their members of Parliament [MPs]. With all due respect to the rest of my colleagues—and I am fond of them all—when it comes to death and dying I will be picking up the phone to my local doctor, not to my local MP. This is no time for amateurs.
This is, however, a question about the proper role of the State; about how far the State should go in shaping an individual's right to choose not the fact but the manner of their own death. The power we have in this Chamber is to set the rules and to establish the legislation that governs how those choices are made, or how those choices are constrained. Andrew Denton argued the case that under the current law there are three options for someone with a terminal disease. They are most crudely characterised as suicide, starvation and sedation. It was the first of those that has weighed most heavily on the debate in Victoria.
The evidence of the Victorian Coroner had a major impact on the deliberations of Victorian members of Parliament on all sides of the House. It is hard reading the transcript of his evidence, but it is easy to see why it was so influential. The Coroner describes unflinchingly the suicides of people with terminal illnesses. In detailing and defining these Victorian deaths the Coroner has spelt out the manner of these deaths—about one a week in that State. The largest number have hung themselves, but they have also bled to death, poisoned themselves, asphyxiated themselves, shot themselves with guns, and in one instance with a nail gun. These are violent deaths. They are most often lonely deaths. These people confronting death are almost always alone. Why are they alone? They are scared of legally implicating their loved ones in their death. Here is the story of Terri Eskdale and her partner, Mark. She says:
Mark died alone and without a word of goodbye because he had to protect me. That is what upsets me the most—he had to die alone and in an unnecessarily violent way. This has affected me in many ways. People seem to think that now I am not a carer I am free to live a new life. I am not. I am mourning the loss of my life partner and I am dealing with the shock of finding him dead. I should have been able to be with him and hold his hand—it would have been a comfort to both of us.
These people are more scared of legally implicating their partners than they are scared of death. So they end up dead on the back lawn, hanging under a bridge, or in front of a train—alone. That is the fault of the law. The existing law drives people to do things like that. I cannot imagine what it takes to kill oneself with a nail gun. What does it take to drive an otherwise sane person to do that? Part of the answer—not all of the answer—is the state of the existing law. For that reason it has to change. We simply do not know the comparable figures in New South Wales of suicides for people with terminal illness. We should. However, if it is one per week in Victoria it will not differ much in New South Wales. I will speak about the importance of a sense of control. I expect this bill, if passed, to be used sparingly. I certainly hope that will be the case.
In 2016 in Oregon 133 people died under the provisions of their legislation. That is in a state with a population roughly half the size of ours. In Oregon one-third of people who acquire the prescription to kill themselves choose not to do so. One of the main benefits expressed in studies of Oregon's experience is giving people a sense of control of their circumstances. That alone helps to alleviate their suffering. That makes sense to me. In this debate there has been a lot of talk about people's last days. What has been discussed less often is the long and uncertain medical journey that people have often been through prior to those last days. It was beautifully expressed in The Long Goodbye, by Meghan O'Rourke—her memoir of her grieving after her mother's death. She writes:
So much of dealing with a disease is waiting. Waiting for appointments, for tests, for procedures. And waiting, more broadly, for it, for the thing itself, for the other shoe to drop.
A sense of choice and control is fundamental to our sense of self. That was the view of Holocaust survivor Viktor Frankl, who said:
Everything can be taken from a man but one thing: the last of the human freedoms—to choose one's attitude in any given set of circumstances, to choose one's own way.
I cannot imagine any time that is more important than at the end of one's life. These are matters of power. One issue that worries me is the idea that society's less powerful might be exploited under any system—the frail, the poor, the disabled, and the persuadable. However, let us be clear-eyed about our current system. Let us not pretend it is perfect. Let us be honest about the lack of safeguards under our current law. Let us be honest about the lack of scrutiny. We simply do not know enough in New South Wales about how terminally ill people are dying. Without this knowledge we cannot protect the interests of the least powerful. Even in Victoria, the committee found there is no way of knowing how often terminal sedation is used in that State. The Victorian report states:
Its use is not centrally recorded, the extent of its use is unknown, and no guidelines exist to regulate it.
Finally, on the importance of honesty in this debate, I agree with an earlier contribution on this issue by the Hon. Greg Donnelly. We will vote different ways on this bill. I agree with his call to avoid euphemism in this debate and for plain speaking. These issues are harder than they should be because in our society we do not speak openly of death, of dying or of suicide. Even the Age, in reporting the evidence of the Victorian Coroner, reported:
Fairfax media has chosen not to include some of the raw details of the Coroner's evidence, much of which was so shocking that it profoundly shaped the parliamentary inquiry...
I see that as a part of the problem. In a society fascinated with youth, we do not speak often enough about ageing and dying. We might understand death less now as a society than we have in the past—not its medical details but the loss, grief and reflection that it brings. A dramatic increase in human life expectancy has meant that in the modern world death has become increasingly private. That was a luxury that did not extend to human history in times of war, flood and famine. In ancient times life was brutal, and often short. A human life might have been worth less than half of what it is today. Death had to be confronted, although not always honestly, but the topic was unavoidable. That is no longer the case in our society. These current laws do not help. They promote an artificial silence on these matters. They are a barrier to an honest discussion being had between medical staff and citizens seeking medical assistance. So I agree with the call for honesty in this discussion.
A number of members have spoken about the remarkable developments in modern medicine. I see that as one reason why our medical laws will have to change. We will soon reach the point where the modern medical ability to extend life almost seems to create a fusion of human and medical machines. That was how I felt visiting dad when he was in hospital in intensive care fighting the cancer that eventually killed him. Dad was incredibly well cared for, but he was bedridden, intubated and unable to speak. He did not want to die and he recovered for some time, but he was determined never to return to the intensive care unit.
Faced with that issue, and the increasing ability of medical machines to sustain human life, over time our laws will need to change and respond by giving patients more control over their care. So there it is: not life and death, but death and dying. Lastly, I want to speak about hope and fear. I hope to be part of a community that dies well. I hope not to die horribly. Let us be honest: I do not want to die. Realistically, I hope not to die painfully. But more than any of these things, I hope not to die alone. That is one of my worst fears. Of course, it is exceeded by the fear of any parent, that of our children dying before we do.
When I die I want to die with my family around me and with close friends who have been with me through the ups and downs in my life. I want them there so I can say goodbye. Those are my hopes. Those are hopes that some people with a terminal illness cannot share under current laws. Those laws will result in them dying alone, having not said goodbye. We cannot stop them dying. We can vote to stop them dying alone, to let them choose; to give them control and to let them say goodbye. I commend the bill to the House.