Jane Hume (Victoria, Liberal Party, Shadow Minister for the Public Service) Share this | Hansard source

This is not the first time that we've traversed this issue in this place. In fact, back in 2018 a similar bill was defeated by only two votes, and I was one of them. In this very chamber I stood right over there on the other side and I spoke of section 122 of the Constitution and the inarguable position that the territories do not, as do the states, govern by way of constitutional right, and I remain a fervent believer in the importance of section 122. In this I have not changed my position.

Back then I also spoke about the danger of unicameral parliaments legislating for such consequential issues without the scrutiny of an upper house. And on this issue I am not quite so impassioned, because in 2018 only one state, Victoria, had passed legislation to allow for voluntary assisted dying, although it was yet to be enacted at that time. I know, through conversations with friends in the Victorian parliament, of the extraordinary rigour and scrutiny around that legislation, and now we have all states, including those with a unicameral parliament, adopting their own forms of voluntary assisted dying laws. The scrutiny has already been done: it has been done by other jurisdictions. The argument of unicameral weakness on this issue is, today, far less compelling.

But it was the issue of safeguards that caused me the most hesitation back then—the theory that someone vulnerable may be 'guilted' into deciding to end their life. 'No legislation can legislate against guilt,' I said back then. Well, two years later, in March 2020, I was to learn that, in practice, voluntary assisted dying legislation in my home state of Victoria had so many safeguards in place that it was almost insurmountable to navigate, and that was even for its most qualified and most determined participant: my father, Steve.

My dad was one of the statistics that was mentioned by Senator Antic—this is going to be difficult. Despite their Catholic upbringing and very conservative disposition, my parents had always been committed to exiting on their own terms. That was the phrase that they used. As lifelong Liberals, they felt that this was the ultimate expression of the individual. In the early 2000s they went to a forum by Philip Nitschke, who is the fervently pro assisted-dying physician and activist who was, in fact, the first doctor in the world to administer a legal lethal voluntary injection, under that short-lived Northern Territory Rights of the Terminally Ill Act in 1995. Dad said to me, after he went to that forum, that it was just so heartbreaking to see the desperation in the eyes of so many people there—people in pain; people who loved and looked after people in pain. And he and mum—fit, happy, healthy—never wanted that desperation for themselves.

The first time I realised dad was sick was in this building. When I was elected in 2016 I arranged for him and mum and my three kids to come to Canberra to see my maiden speech. I organised flights and taxis and a private tour of Parliament House and dinners and activities—all while I was wrapped up in that first week, that bewildering week, of being a new senator in this place. But dad wasn't himself. He was breathless; he was frustrated; he couldn't even make it around the building.

I looked recently at the video of my maiden speech. The camera panned onto him. He was sitting right up there. It panned onto him and mum. They're proud, certainly—you can see that—but you can see that dad is in pain and that mum, who had some health and mobility issues of her own, is confused and frightened by their combined helplessness. Over the next three years, dad went from doctor to doctor and to test after test and was diagnosed with absolutely everything from pneumonia to fibromyalgia to gout. He became increasingly unwell, uncomfortable and bad tempered, and each week was defined less by who or what my parents would be seeing, in friends or who St Kilda was playing that weekend, than by which doctor he would be visiting. When finally, in 2019, a random scan showed a shadow on his lung they operated and removed a cancer the size of a cantaloupe. By December he was readmitted to hospital because the cancer had returned, this time to his spine, and he had six months at best.

Exhausted by treatments, by endless trips to hospitals, on Christmas Eve 2019 I sat with him in his hospital room while he explained to his doctor that he no longer wanted to be treated and instead wanted to arrange to receive voluntary assisted dying. That was the beginning of a harrowing three months. His doctor tried to talk him out of it, insisting that palliative care was a better option. But when dad insisted, his doctor simply stopped responding to his requests. It was Christmas, and his medical team all went away on holidays. I don't deny them that; that's fair enough. But dad went downhill rapidly, not just physically but mentally, too.

The voluntary assisted dying safeguards mean that no family member can help organise, request or even discuss voluntary assisted dying. It must be the patient themselves. This is a good safeguard in theory but a very frustrating one when you are the daughter of a stridently adamant, single-minded but increasingly incapable father demanding your help and an overtired, emotional and physically weak mother and have an absent or potentially conscientious-objector team based in a Catholic hospital.

Finally, I called a colleague in the Victorian state parliament and asked them for advice as to how I could help dad navigate this system. She put me onto someone on the advisory panel who pointed me in the right direction—a hotline with no contact details and no voice message, just a simple and unidentifiable 'hello' at the other end. Once we moved past the not unexpected suspicion of a daughter calling on behalf of her father, the ball was put in motion. It took another six weeks of phone calls, demonstrations of competence, demonstrations of independence of mind, interrogation of me, interrogation of my sister and interrogation of my mother to ensure that we weren't applying inappropriate pressure on dad. We also had to go to increasing numbers of appointments—specialists' appointments, doctors' appointments—all of which were becoming increasingly difficult to get to, and show reams of medical certificates and emails to prove that dad's diagnosis was terminal. Everything seemed to rely on somebody else's willingness, somebody else's timetable—not dad's. So the safeguards that I questioned back then were not only there; they were almost insurmountable.

Now, by this stage, my once strong and very bombastic father had lost around 50 kilos. He wasn't eating. He wasn't sleeping. When he did sleep, he had the most terrifying nightmares that he would get up and fall over in the middle of the night. He couldn't shower by himself. He needed 24-hour supervision by a family member because, when he would fall over, mum was too weak to pick him up. He was becoming increasingly difficult to understand; his painkillers were so strong. He muddled his words, and he was genuinely worried that when the doctors would speak to him, they would think he had dementia and that would disqualify him from receiving voluntary assisted dying.

Then COVID hit. Doctors were diverted, restrictions were put in place, and although he had done absolutely everything that was needed, we were told it would still be another three weeks at least before the two voluntary assisted dying doctors could come to his home and show him what to do. When dad heard he had to live for another three weeks, he cried. Now, we were lucky with one thing. Knowing that dad had only three weeks to live and that the COVID restrictions were about to bite, we invited all of his friends over for a party and we drank his good champagne and his best wine from his cellar. It was essentially, whilst nobody said it out loud, a living wake. It was a really special day.

Then day zero finally came. Two men came to the house around 10 am. They were terribly kind, and they were terribly patient. They filled out the paperwork, they got dad's signature, they interviewed us all one last time. They showed dad what to do, they ensured he was competent to do it himself. There were more safeguards right up to the very end. When they left, it was all we could do to stop dad mixing up the mixture straight away, the moment the doors closed behind them. Instead, my kids came over to their grandparents' house. We had a cup of tea, we had some sandwiches, we told a few funny family stories of favourite holidays, happier times.

Then dad went to lie down, and when he was settled my kids went in to say their goodbyes. They left and took themselves back to my house, and then it was our turn. Mum went to speak to dad alone for a while, and then my sister and I joined them. We sat on the bed, and he told us how much he loved us, how proud he was of us. He made us promise to look after mum, and then he mixed up his medicine that he had been shown how to do and he drank it. We held his hand, we told him how much we loved him, and about three minutes later he very calmly and very peacefully and very quietly died.

Now, more than two years on, it's not a small thing to talk about this. Indeed, we will have family and friends who, because of their faith, will be very disappointed to have it confirmed that this was the pathway that my father chose, although I think they might have suspected as much, even if it wasn't spoken of at the time. Dad died on the very day the Prime Minister announced there was only a 10-person restriction on funerals, so we never had that cathartic family congregation with friends and family that would have allowed us to talk about his life or his death. He really loved that, because he never wanted a funeral anyway. He was almost as strident about that as he was about his right to die.

I read through some of the speeches on this issue from my colleagues in here and my colleagues in the other place, and particularly from those who will vote differently from me. They have used the arguments that I once used—all reasonable arguments: section 122, unicameral parliaments and safeguards. However, the most common refrain in any of those speeches is far less clinical, far less intellectual, but no less compelling: 'I know in my heart that this is wrong.' I respect this opinion because I once felt in my heart that it was wrong, too. I once voted against this legislation, but I will be voting in favour of it today.

We say in this place that when we make a decision, we will walk a mile in another man's shoes. Well, I have certainly done that. Having experienced it, having lived it, having held the hand of a person that I deeply loved as he died peacefully, as he died painlessly, as he died willingly and in the manner in which he wanted, the manner in which he had always wanted, and at the time of his choosing, I now feel very, very differently. It was truly a beautiful death.

To those Australians who live in the territories, rather than in any other part of the country that's represented in this chamber, I say to you: who am I to deny you the choice to leave this Earth in the same beautiful way as did my father, Steve. I commend this bill to the Senate.