Sue Lines (WA, Deputy-President) Share this | Hansard source

tor LINES (—) (): I must say I've listened with great interest to all of the debate that's occurred so far on this bill in the chamber and it reminds me very much of the debates we had in Western Australia when the state parliament moved the voluntary euthanasia bill, because it does actually for many people go to an issue of conscience. But, like many debates, what becomes a key feature of the debate seems to miss the whole intention. Certainly that occurred with the voluntary euthanasia bill. Despite that bill in Western Australia having the overwhelming support of Western Australians—I think something like 80 per cent of Western Australians supported the right of people with a severe terminal illness to decide the timing of their death—it was held up by, in the end, a handful of people. I'm not criticising them in any way; their views were passionately held. But it did get down to an issue of peoples' personal morality and what they thought was okay. The problem with that is that it's then balanced against these horrendous stories.

I have to say I started out feeling pretty agnostic about voluntary euthanasia. I didn't really have an opinion. I would have to say I was probably slightly uncomfortable with the concept, but it was when I started to read the stories and to meet the people whose relatives and friends had passed away in horrendous circumstances, in deaths none of us would want to imagine for anyone, that I started to see that actually this was bigger than someone's personal morality. This was giving people who wanted to do so the right to end their own life. Through that process, I met the most amazing young woman: Belinda Teh.

You might remember, if you followed the Western Australian debates, that Belinda's mother died of breast cancer very tragically and in a very painful way. Despite having the best of palliative care available to her, she had a very tragic death. Belinda was so motivated, moved and devastated by the loss of her mother at such a young age that she decided to raise awareness by walking from Melbourne to Perth. During that journey, Belinda herself became politicised. She was one of the key leaders of the community debate in Western Australia for voluntary euthanasia. I'm really proud to say that she worked as part of my team for several months. She's an extraordinary woman. But that experience that touched her mother changed Belinda's life. It's forever changed because of what she saw her mother suffer.

When I think about the mitochondrial debate, I look to the stories about those suffering from mitochondrial disease and those stories are equally horrendous. Most people who contract that disease inherit it genetically. It's a death sentence, and it's not an easy death sentence. The pain, suffering and trauma experienced by those who have the disease is horrendous and, seemingly, we don't have the treatments or the care to enable that suffering to be eased in any way.

I was very moved to read of a young Western Australian woman, Pippa. Her story is on the Mito Foundation's website. I was so moved by her story and her bravery that we contacted her family. Sadly, Pippa passed away almost two years ago—the second anniversary of that has just passed. We asked if I could read from Pippa's story, and they've given me that permission. I want to take some time in my contribution to do that.

In May 1997 … [Pippa] woke up in severe pain and unable to move … she was immediately admitted to Royal Perth Hospital and stayed for one month. Pippa was initially diagnosed with fibromyalgia (a form of chronic fatigue) and required intensive rehabilitation and physiotherapy to learn to walk again.

About six months later, Pippa woke disoriented, confused, and started to scream hysterically asking for someone to turn on the lights – which were already on. She was temporarily blind. Multiple seizures followed that were characterised by loss of consciousness and violent muscle contractions, resulting in a diagnosis of grand mal epilepsy.

On her twenty-first birthday, Pippa suffered a complete nervous breakdown with frightening hallucinations followed by a string of seizures.

It was at this point, after the tireless efforts of her doctors. that she was diagnosed with mitochondrial disease. After this:

Pippa and her Mum … both had muscle biopsies and MELAS … a maternally inherited form of mito, was confirmed. Later, her sister Toby also tested positive for MELAS.

As a result, Toby chose not to have children, not willing to run the gauntlet of potentially passing on the disease to her own children. Pippa's story continues:

Over the years, Pippa spent countless months in hospital and five times on life support when the family was told there was no coming back. Yet she kept her humour and shone in the face of adversity. She continued to celebrate other people's success and happiness. She was empathetic, compassionate and caring. … After initially being given a maximum of 12 months to live, Pippa proved to be an inspiration and bravely fought MELAS for 22 years.

The final 12 months of her life were unimaginably tough, as her health gradually deteriorated even further. Towards the end she suffered several stroke-like events, gut and bowel issues and declining cognitive function. Despite defying her doctors countless times, Pippa died almost exactly two years ago, on 4 February 2020, surrounded by her loving family and friends. The story concludes:

Although the last few years of Pippa's life were very difficult, the family managed 3 trips to Europe, several trips interstate and as many trips within WA that they could manage. … The whole family went on a trip to Melbourne on Pippa's 40th birthday which included a memorable overnight stay at the Werribee Open Plains Zoo …

Despite all that Pippa had been through, her family said she never lost her big laugh, which they all knew so well. Pippa sounds like someone that I would really love to have met. But, of course, what keeps families going in all of this, and it was exactly the same for those people whose stories I read in the euthanasia debate, is they want to remember the person before the illness, and nobody ever wants an illness to define the person. It seems to me that Pippa was able to strive above that, to continue to be Pippa, despite these horrific health issues that she faced.

What we know from Pippa's story and what we know from the other stories that have been told in this place is that mitochondrial disease is a debilitating genetic discord that robs the body's cells of energy, causing multiple organ failures or dysfunctions and sometimes, and I think often, death. There's no cure. Now, it might well be there is a cure in the future, and I hope that we keep dedicating medical research to that and let's hope there is a cure, but right now there isn't a cure. Current treatments aim to decrease the effect of symptoms but, of course, can't change the course of the disease. As we heard in Pippa's case and in other cases I have read, the treatments she had didn't really reduce the severity of the pain and disability that Pippa suffered.

One in 5,000 babies will develop a severely disabling and likely terminal form of mitochondrial disease. That's 56 births a year in Australia, more than one per week. This is why I support this legislation. It's why I really believe it's an important milestone for us as a parliament to vote on and to vote yes, because we're not forcing anyone to do anything. Just like the voluntary euthanasia laws in Australia or women's reproductive rights when it comes to termination, we're enabling a choice. It mightn't be the choice that any of us make but it will be the choice that other families and others individuals make. That's what I want to achieve in this parliament: to simply give people that choice and to focus our energy on cures and on easing the symptoms through pain management and of doing whatever else we can. But this is a course of action that not only stops the baby developing mitochondrial disease but it stops the genetic transfer so people like Pippa's sister Toby don't have to make that incredibly difficult decision not to have children, because she feared passing it on.

I would urge people: please, don't stand in the way of giving people that choice, that personal choice. Please don't let your morality or your beliefs stand in the way to stop other people from simply being given that choice. It may well be that some families with mitochondrial disease have the same view as some senators in here—that that's not a choice for them—and that's okay, but there will be many families who see their child suffering who would make that choice. I would challenge any of us in here, faced with the suffering of our own children or our friends' children, or even people like Pippa that I don't know, who would want people to have that level of suffering? I don't think any senator in here, regardless of your personal belief, would want that on anyone. So we have a choice here today, or whenever we get to finally vote on this bill, to end that suffering for people who choose this course of action or to continue to stick to our own moral beliefs and to foist them across the whole community. That isn't the role of us here as senators. The reason in the end I became a passionate supporter of the euthanasia bill in Western Australia was because on hearing Belinda Teh and other stories, on reading the Dying with Dignity stories and watching their videos, I realised it wasn't for me to impinge my views on them; it was for me, as a legislator, to enable that choice for others to take it or not to take it. We have a lot of laws on our statute books that give people choice: women's reproductive rights, abortion, voluntary euthanasia. If this bill is passed here this week, this will become just one of those laws that gives people a choice, a real choice. Imagine if this was available to Toby. I don't know how old Toby is; she may be past the age of wanting children. Let's assume she took this option up, it changes her life, and suddenly she's able to confidently make a choice to have children knowing that, if she uses this procedure, she isn't going to pass this debilitating disease on to the next generation, to her children, to her flesh and blood. None of us would willingly choose to do that; we just wouldn't. That's not a choice we would make—to pass a genetic disorder on to our children and watch them suffer. Watching your own children suffer is the worst thing a parent can do. As parents, we always think it's our role to protect our children—which, of course, it is—and to do the best by them. So I urge you to pass this legislation.