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

I begin my speech on the Restoring Territory Rights (Assisted Suicide Legislation) Bill 2015 by saying that I agree broadly with the aim of this bill, which is to repeal the Euthanasia Laws Act 1997. While the issue of assisted dying has prompted this bill, I essentially see this debate as being one about equal rights for the residents of the Northern Territory and the ACT. This debate is about whether we take a consistent approach to deciding the powers of the states and the powers of the territories. It's about whether we treat all Australians as equal or we decide to have two classes of Australian citizens—those who can exercise certain powers through their state parliaments and those who can have those powers taken away from them by the federal parliament on a whim. I do have minor concerns about the drafting of the bill, which I'll get to later in my contribution; however, these will not prevent me from supporting it.

To begin my contribution, I think we need to get a couple of definitions clear. Throughout my speech I will refer to assisted dying or medically assisted dying, and it is important to draw a difference between this and voluntary euthanasia and assisted suicide. The Northern Territory act which led to this debate, the Rights of the Terminally Ill Act 1995, only provides for medically assisted dying. It does not permit for voluntary euthanasia, nor does it help to facilitate suicide. Let's get clear the distinction between these terms. Voluntary euthanasia is the practice by which a doctor ends the life of a patient, on their own request, by administering a lethal substance, usually by injection. It is distinguished from assisted dying in that the latter allows the patient to end their own life but with the assistance of a doctor. This usually involves the patient being prescribed or supplied with a lethal substance which the patient then self-administers.

I have a big problem with the term 'assisted suicide', in describing medically assisted or physician assisted dying, being included in the title of this bill. This term stigmatises the practice and, in fact, is often used by opponents of assisted dying for that very reason. Assisted dying and suicide have profound psychological differences. I am aware that, in the United States, many peak medical organisations have policies that specifically oppose the use of the term 'suicide' or 'assisted suicide' to describe the practice of assisting dying. It's not appropriate to draw parallels between the wish to end one's life due to intolerable physical suffering that cannot be relieved by palliative care and someone who ends their life as a result of depression, schizophrenia or another form of mental illness. Suicide is a tragedy—there are no two ways about it—and should be prevented to whatever extent it can. As the American Association of Suicidology points out, suicide is a form of self-harm that results from mental illness such as schizophrenia or severe depression.

There are a number of important differences that distinguish assisted dying and suicide. In suicide, a life is cut short. In assisted dying, a foreseeable death occurs earlier but in an easier way and in accordance with the patient's wishes and values. Suicide stems from psychological pain and despair. Victims of suicide don't want to live because they cannot enjoy life or see that their life may not improve in the future. Patients who seek assisted dying, on the other hand, generally want to live but know that they're ultimately going to die as a result of their illness. A terminally ill patient who is given assistance to die usually experiences stronger bonds with their loved ones and a deeper sense of meaning as their life comes to an end, whereas suicide is usually preceded by isolation, loneliness and a loss of meaning.

Because of these differences, I take issue with the use of the term 'assisted suicide' in the title of this bill. It's simply not appropriate to refer to assisted dying as suicide. Another reason I don't think the title is appropriate is that it implies that the bill is legislating to enable assisted dying when all it's doing is restoring power to the territories to do so. The bill would be more appropriately retitled 'Restoring Territory Rights (Repeal of the Euthanasia Laws Act 1997) Bill'. Similarly, the objects of the bill could be simplified to focus on the central purpose of the bill, which is simply the repeal of the Euthanasia Laws Act. However, I don't intend to move any amendments to address these issues. As concerned as I am about the distraction from the central purpose of the bill, the bill in its current form serves that purpose and so I don't intend to invite debate that may delay the passage of the bill or distract from the issue at hand. Having said that, I'm open to supporting amendments moved by others if they strengthen the focus of the bill.

While I will make a contribution in this speech about assisted dying legislation, I want to express my disappointment at the narrowness of this debate. As the co-convener of Parliamentary Friends of End of Life, I'm deeply disappointed that, as a nation, we don't engage in more holistic discussion about end-of-life issues. We don't talk enough about investing in quality palliative care and encouraging Australians to make advance care plans. It disturbs me somewhat that much of the national discussion around end-of-life issues has focused on the questions of euthanasia and assisted dying, with little attention paid to other important issues around end-of-life care. As a result, governments, both state and federal, have dropped the ball on palliative care. I'm constantly shocked and disgusted at the parlous state of palliative care funding in Australia. There is nowhere near enough being done to educate Australians about the importance of making written advance care plans and discussing end-of-life wishes with their loved ones.

In 2011 the Grattan Institute published a report which found that 70 per cent of Australians would prefer to die at home, surrounded by their loved ones. The number of Australians actually dying at home at that time was a mere 14 per cent, and I understand that it has improved very little since. Ninety per cent of Australians die without an advance care plan, and 75 per cent of Australians have not had the conversation with their family about their end-of-life wishes.

For many years I have been campaigning strongly for investment in, and equal access to, quality palliative care. Some in this place will be aware of the speeches I've delivered calling for funding to be extended for Palliative Care Tasmania to continue its work in professional development and community education about death, dying, grief and bereavement. It's also vital that governments at all levels work with the community sector to promote the importance of making advance care plans and discussing care wishes with loved ones and medical practitioners, something which not nearly enough of us do.

Advocates of quality palliative care are often accused of using it as an excuse not to support euthanasia or assisted dying. The view that palliative care and assisted dying are an either/or proposition is driven by a misunderstanding of what palliative care is. Palliative care and assisted dying are not—I repeat, not—mutually exclusive. Having good palliative care available is not a reason to deny the option of assisted dying. Similarly, providing patients with the option of assisted dying is not a reason to ignore the need to invest in quality palliative care.

Palliative care is a form of care given to people with life-limiting illness, and it's necessary for all patients, regardless of whether they have the option of assistance to end their life. It's a multidisciplinary approach that involves the relief of pain, physical and mental stress, and other symptoms of live-limiting illnesses. I think it's fair to say that the more advanced our understanding and practice of palliative care becomes the better we can be at relieving the pain and suffering of patients with life-limiting illness and improving their quality of life. Quality palliative care can, for some patients, be an alternative to assisted dying and it is an option that they deserve. I'm a firm believer that through advance care planning, together with well-funded and well-coordinated quality palliative care, we can reduce the need for patients to seek assistance to end their own life, but we cannot eliminate it. No matter how good palliative care is, I recognise that some pain and suffering cannot be relieved and we cannot make quality of life acceptable for all patients with life-limiting illness. I accept that there are circumstances where patients with life-limiting illness experience pain and suffering which cannot be relieved through palliative care and ending their life appears to be their only option.

There was a time when I was opposed to assisted dying. However, life experiences, like a lot of people have spoken about tonight, have helped to shift my thinking on this issue. One experience I want to mention quickly had a very profound effect on me. It was earlier this year. I spent about 12 hours a day for a couple of weeks at the bedside of my closest personal friend of 35 years, who had been living for several years with early-onset dementia. In the final two weeks of her life, my friend was in the palliative care suite at the facility she had been transferred to a few weeks before. My friend was given regular pain medication and she lived for two weeks, despite the doctors not expecting her to survive more than a day or two. When she finally died, although I obviously experienced a great sense of grief, I also felt enormously relieved that she was no longer suffering. We had spoken many, many times in that 35-year friendship about what either of us would want done if we had no quality of life left, if we had no hope of recovery or if one of us had a terminal illness. So, for patients with life-limiting illness—those who are able to communicate their wishes and are competent to make a decision—knowing that the option to end their life is available could be a comfort, even if they choose not to use it.

As someone who was once opposed to assisted dying, I can understand why many people are cautious about it. While some patients with life-limiting illness will have pain and suffering that cannot be relieved through palliative care, depression, family pressure or the feeling of being a burden could also cause a patient to seek to end their life. That's why any legislative proposal to allow voluntary assisted dying must be approached with a great deal of care and caution and include the strictest safeguards. The Northern Territory's Rights of the Terminally Ill Act includes several such safeguards. The decision has to be supported by three medical professionals, including a specialist who confirms that the patient is terminally ill and a psychiatrist who confirms that they are not suffering from treatable depression. Once all the necessary paperwork is complete, the patient has a nine-day cooling off period before the death can proceed. The act also provides that a medical practitioner shall not assist a patient if there are palliative care options available to relieve their pain and suffering to acceptable levels. There are also protections in the act, with associated criminal penalties, against deceptive and improper influence to procure the signing of a certificate.

The four patients who ended their lives under the Rights of the Terminally Ill Act between 1995 and 1997 were all assisted by a device invented by Dr Philip Nitschke. Dr Nitschke's device administered an injection of a lethal drug after the patient answered yes to a series of three questions that appeared on a screen. The questions were:

1. Are you aware that if you go ahead to the last screen and press the "Yes" button, you will be given a lethal dose of medications and die?

2. Are you certain you understand that if you proceed and press the "Yes" button on the next screen that you will die?

3. In 15 seconds you will be given a lethal injection… press "Yes" to proceed.

Ultimately and importantly, the machine gave the choice and the control to the patient over whether to administer the drug.

Should this bill that we're currently debating be passed by both houses and receive royal assent, the Rights of the Terminally Ill Act will again take immediate effect. Some in this place may choose to debate whether the safeguards in the act are sufficient or whether the Northern Territory should be allowed to legislate for assisted dying at all. We could have a similar debate about the law-making power of any of the states, including Victoria, whose parliament recently passed the Voluntary Assisted Dying Act 2017, but we don't have any power to override Victoria's assisted-dying legislation.

We do, however, have the power to override the Northern Territory's or the ACT's. Section 122 of the Constitution grants us this power, and there will be some in this place who will say that we need to make a decision about the circumstances in which that power should be exercised. I say that, while the authors of the Australian Constitution did a pretty good job, we need to recognise that, for better or worse, this 117-year-old document was the product of a series of compromises. These compromises were necessary to bring six independent colonies together to form a nation. It is an imperfect document, but its implementation has been improved over the years by the conventions and practices we have adopted—conventions such as giving the territories the right to self-govern on equal terms with the states.

In 1997, our federal parliament overturned that convention, a convention that had stood for 19 years in the case of the Northern Territory and for nine years in the case of the ACT. If we're honest with ourselves, we should recognise that section 122 of the Constitution gives us the power to create two classes of citizens, those who are free to govern themselves in areas of state responsibilities and those who are not. So let's not be under any illusions. The Euthanasia Laws Act discriminates against territorians, and anyone who chooses to oppose this legislation is voting for this discrimination to continue.

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.

I'm not going to agree with every bill that the Northern Territory parliament or the ACT parliament passes, but the question we need to ask ourselves today is not one of whether we allow assisted dying in Australia's territories. If state parliaments have the right to decide whether they want to allow assisted dying, why should this right be denied to the parliaments of the territories? The question we need to ask ourselves today with our vote on this bill is: do we believe in self-government for the territories on the same terms as self-government for the states, or do we only support self-government for the territories when we agree with their decisions? I for one don't believe in treating the Northern Territory and ACT residents as second-class citizens, and that's why I will be supporting this bill.