Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Hansard source

If I can begin by making a couple of comments about Senator O'Sullivan's contribution. I want to make it very clear: I've done a lot of work over many years with both Palliative Care Tasmania and Palliative Care Australia. The issue in this debate is that palliative care and voluntary—I underline 'voluntary'—assisted dying are not mutually exclusive. In fact palliative care can be a great resource in the area of voluntary assisted dying.

I thank my Labor colleagues in the House who introduced this bill, the member for Ballarat, Ms King, and the member for Eden-Monaro, Ms McBain. It's hard to believe that it is now 27 years since the Northern Territory parliament passed the Rights of the Terminally Ill Act. It was the first state or territory in Australia to legislate for and regulate the process of voluntary assisted dying. It's not euthanasia and it's not suicide; it's voluntary assisted dying. After the act was passed and before it was overridden by the federal parliament, seven people sought assistance to end their lives under the act. All seven had advanced stages of cancer. Of the seven, four were able to use the provisions of the act to end their lives. Another two sought assistance but died before the act became law, and one died after the act was repealed.

The Northern Territory's act was enforced for almost two years when the Australian Parliament passed the Euthanasia Laws Act 1997. The federal act prevented not only the Northern Territory but also the ACT and Norfolk Island from passing laws to allow for voluntary assisted dying. Since the bill was introduced there have been many attempts in this parliament through private members and private senators bills to repeal the provision of the Euthanasia Laws Act and restore the rights of the territories. I won't at length go into those various attempts to do that but I will say this: in 2016 a bill was introduced, this time a collaborative effort between Senator Di Natali and Labor Senator Gallagher, but, like most of the others, wasn't proceeded with. In 2021 during the last parliament, Nationals Senator Sue McMahon introduced the Ensuring Northern Territory Rights Bill. While there was some progress on the second reading debate, that bill did not come to a vote. The one bill that did make it to a division, Senator Leyonhjelm's bill, was negatived by a margin of only two votes.

So while we've been grappling with the issue of the rights of the territories to legislate for voluntary assisted dying, we have had extensive debates on the issue in all state parliaments. In fact, I think Senator O'Sullivan comes from Western Australia. Western Australia has voluntary assisted dying laws. So it's alright for the state that he lives in to have it. We didn't get a say in this chamber whether or not Western Australia got to do that but when it comes to the territories, we have to treat them differently. Every state parliament has now passed laws to provide some regulatory framework for suffering terminally-ill people to seek assistance to end their lives. As I said, this chamber did not get a vote to determine what every state did, so why do we have to do that for the territories? These laws take effect on various states and are already in effect in two of the six states.

In my home state of Tasmania, the legislation which passed was developed by Legislative Council member, Mike Gaffney, after a very long and very extensive community consultation process. This consultation process allowed the legislation to be very thoroughly scrutinised to ensure the language was consistent and correct, and that the checks and balances against misuse were watertight. The End-of-Life Choices (Voluntary Assisted Dying) Act 2021passed the Tasmanian parliament last year and commences operation on 23 October this year.

You will notice from the titles of the various repeal bills put forward in federal parliament that there have been a lot of terms used, a lot of terms bandied about and, as I said, some of these are inappropriate. It's really important that we get the terminology correct. We're talking here about voluntary assisted dying. We're not talking about euthanasia or suicide, as I've mentioned. Those against it use that language to run the emotive argument, and I find that not tolerable. You have to understand the bill. You have to understand what the word 'voluntary' means. We're not forcing anyone to do it. You hear all these horror stories, but I don't understand why it's alright for all the states to be able to do it and not the territories. If anyone can explain to me why that's alright and give me a logical argument, I'm happy to listen, but I haven't heard a logical argument about it yet.

Ending one's own life by suicide is usually the result of mental ill health such as psychosis or severe depression. Suicide is a tragedy—don't get me wrong—and every possible measure should be taken to reduce the incidence of suicide until we eliminate it entirely. By contrast, voluntary assisted dying is a rational act made by someone whose life-limiting illness is causing them intolerable pain or physical discomfort, and as a result they have no prospects for quality of life. Suicide tends to be preceded by isolation and loneliness—not always, but usually—whereas voluntary assisted dying usually brings patients closer to family and loved ones. As for euthanasia, this is a procedure used to kill someone painlessly to end their suffering. With voluntary assisted dying, the doctor provides the patient the means to end their life and thereby end their suffering, so ultimately the power to make the decision remains in the patient's hands. It's important we make these distinctions clear when we talk about voluntary assisted dying.

Years ago I was actually opposed to voluntary assisted dying, but my views is changed. Some recent experiences, of course, have had a profound effect on my thinking about the topic of death and dying—how I die, how much dignity I have when I die, and how I may want the choice to be mine. I mean, I might get run over by a bus tomorrow! Heck, wouldn't there be a whole lot of people interested in my position? But if I've got the choice, and I'm in such severe pain, with no quality of life, then I want to be able to make that choice.

Only a few years ago I stayed for two weeks by the bedside of a very close personal friend who was dying in a palliative care suite. I'd known my friend for over three decades. We were partners in crime together for over three decades. I'd witnessed her cognitive decline over several years resulting from early onset dementia. At the beginning of those two weeks she lost the ability to swallow, and the doctors expected her to only live for one other day. She held on for two weeks, receiving regular pain medication. It was a great relief to her loved ones when the suffering finally ended. I'd changed my view on voluntary assisted dying before this incident, but it still had a profound effect on me nonetheless, and probably just served to reinforce my views.

Seeing people die or dying changes your perspective on death. I used to be a nurse. I've seen people die. I've laid out the dead. I've seen people have to hang on, being kept alive with no quality of life, and I cannot accept that that has to be the way for the people in the territories if it doesn't have to be the way for the people in the states. But we've got a bit of a culture in Australia where we treat death like a taboo subject. We don't talk about it nearly enough, whereas in other cultures they're much more open about the subject. We even seek to substitute straightforward words like 'death' and 'dying' with euphemisms like 'passing away' or 'passing'. I'm committed to turning this around, as a lot of people in this chamber know. As co-convenor of Parliamentary Friends of Palliative Care for a number of years, I've spoken extensively about the need to plan for and discuss our end-of-life wishes in order to have a good death. We do it when we're having a baby. We have plans to have babies. People want women to have a good birth and a good experience. When it comes to dying, we should have the same respect.

Part of our discomfort with the idea of assisted dying is probably brought about by our discomfort with the idea of death generally and our reluctance to discuss it openly. I'm sure more people would be open to the idea of voluntary assisted dying if they openly discussed the topic of death as well as what their dying wishes are. That's why I love the idea of death cafes, an initiative that's gaining popularity, in which people get together over tea or coffee and have a frank, open discussion about death.

More discussion about death would also help to overcome the pervasive misunderstandings about palliative care. I am disappointed to hear people voice suggestions that arguing for investment in quality palliative care is somehow an excuse for not rendering assistance to terminally ill patients to end their own lives. As I said, they're not mutually exclusive. It frustrates me because I'm both a supporter of voluntary assisted dying and a strong advocate for quality palliative care. I speak to palliative care people regularly, so I know they understand that palliative care can assist with voluntary assisted dying. As I said, it's not an either-or proposition. I do suggest, as I have earlier in my contribution, that these views are put forward by people who quite often have a very narrow understanding of what palliative care is. So, while I'm here, let me bust some of the myths.

Palliative care is not just pain management and other care at the very end. It's not just for dying people in a hospital bed, and it's not just for old people. Palliative care is for anyone of any age, including children, who has a life-limiting illness. It can be provided to people in the final days or the final years of life. It can be provided in any setting: a hospital, an aged-care facility, a home or even out in the community. It addresses the physical, social, emotional, psychological, cultural and even spiritual needs of the patient. For example, if you've got a life-limiting illness and your dying wish is to go bungee jumping, having someone to take you bungee jumping could be a form of palliative care. For anyone listening, I hope this example helps to broaden your perspective on palliative care.

Having conversations about our dying wishes and investing in quality palliative care in Australia are two ways we can ensure that people with life-limiting illnesses have the best end-of-life experience possible. Isn't that what we want for them? Shouldn't we all want that for anyone with a life-limiting illness? Regardless of how good palliative care is, we know it will not end all the pain, all the suffering and all the discomfort. There is a need for other options for people whose quality of life cannot be assured. For many patients advocating for voluntary assisted dying, just the knowledge that this option is available gives them comfort and lessens their fear, even if they may never exercise that option.

While in this contribution I've spoken at length about voluntary assisted dying, let's be clear that here we are debating not whether to legislate for assisted dying here but whether to allow the territories to do so, just as we allow the states to. This is not fundamentally a debate about voluntary assisted dying but a debate about territory rights. That much is made clear by the title of the bill. Going back to Senator Leyonhjelm's bill, I spoke in the debate on the second reading of that bill four years ago. I want to quote a paragraph from that speech. I said then:

I do not believe it's for me as a senator elected to this place to determine whether the Northern Territory or the ACT should legislate for voluntary assisted dying, just as it's not for me to determine whether Victoria, Tasmania, South Australia, Western Australia, New South Wales or Queensland should. It's not for me to decide whether the safeguards of the Northern Territory's or the ACT's assisted dying legislation are sufficient. I support this bill because I do not see it as fair to treat territorians as second-class citizens and to say to them: 'The states are mature enough to govern themselves, but you need federal oversight.' That is essentially what this parliament did when it passed the Euthanasia Laws Act in 1997.

Going back to my speech, my fundamental objection to the Euthanasia Laws Act is that it created two classes of citizens in Australia: those who are governed on state matters by their state parliaments, and those who have federal oversight on matters that would normally be dealt with by their territory parliaments. I understand that the Constitution gives this parliament the power to deny territorians certain powers that are afforded to the states, but I see no compelling reason whatsoever for asserting those powers. As far as I'm concerned, doing so treats territorians as second-class citizens and it smacks of paternalism.

Our Constitution was adopted over 100 years ago. It's imperfect, but improving it is a difficult and expensive process. One way we can improve the operation of our Constitution without the expense of a referendum is through the conventions we choose to follow. I believe that giving the territories the same legislative powers as the states is a convention that we should agree to adopt and uphold, even if our Constitution allows us to do otherwise. It's worth noting that other speakers during the debate on Senator Leyonhjelm's bill supported the bill despite their personal opposition to voluntary assisted dying.

I would urge anyone in this place who opposes voluntary assisted dying to consider upholding the principle that territorians should have their own right to decide. After all, imagine if the tables were turned.