A woman whose body is gradually shutting down due to an incurable disease has urged NSW politicians not to delay debating legislation that would legalise euthanasia.
The state‘s Voluntary Assisted Dying Bill passed the lower house last year and has garnered support from a majority of upper house MPs.
But it’s still possible terminally ill people who would seek to lawfully end their own lives would need to wait until 2024 to do so.
That’s due to the limited time for debate that has been allotted in the upper house, a likely need to devote further time to debate amendments, and an 18-month implementation phase that would begin once the legislation passes.
“I’m disappointed, frustrated and anxious, because my condition is deteriorating all the time and I don’t think it’ll come into effect quickly enough to help me in my situation,” Sara Wright, 54, told NCA NewsWire.
Ms Wright, who lives in Sydney’s northern beaches, was diagnosed with a motor neurone disease two and a half years ago.
Before then she worked as a nurse with NSW Health and as a health and safety consultant and enjoyed riding horses with her 15-year-old daughter.
In the time since her diagnosis, her body has deteriorated to the point she is mostly paralysed, in physical and emotional pain, and in need of 24-hour care.
“I have very little movement, I can still talk, but that’s hard work for me,” she said in a xjmtzywphone interview on Monday.
“I can eat, but only certain types of food. My body can’t really do anything, so I’m dependent on people for all my daily activities.”
MND are a group of diseases that affect the ability of messages from motor neurons to reach the muscles.
The diseases can affect the ability to walk, swallow, talk and breathe and tend to shorten patients’ life spans.
There is no cure.
Ms Wright said the thought of euthanasia had occurred to her from the moment she was diagnosed.
She said the speed of her decline had been shocking, and she worried she would not have the opportunity to end her life on her own terms.
“I want to live as long as I can, I want to see my daughter grow up, but the illness doesn't stop,” she said.
“I’ve made a decision I don’t want to be fed artificially and I don’t want to get a tracheotomy; a whole in my throat, those are my limits.
“What I would like to do, when the time is right, is to bring my family (from the UK) to Australia so I can die with them here. I’d like to choose a time that’s right for me, so my family can go, so that I can organise support for all of us.”
Ms Wright said she found it “ridiculous and inhumane” euthanasia wasn’t legal.
“We can put our pets out of their misery if they're ill, injured or dying, if there’s no chance of recovery, but we can’t do that for ourselves and our fellow human beings,” she said.
“The politicians are here to represent their constituents, they are there to represent us, everyone. And it’s inhumane to not give people the choice – just because the law is there, doesn’t mean you have to do it.”
Independent lower house MP Greg Piper, who has been a strong proponent of the Bill, said the 18-month pause between when the law would be enacted and come into effect was necessary to allow practitioners to become qualified.
“We understand, and our hearts break for people in that situation, people who wish they would be able to access it,” he said.
“It’s one of those wicked situations where we have supporters of the Bill who actually face this death that we’re trying to address, but who will not be able to access it.
“We’re really mindful of that, and it’s heartbreaking if it is the case, but there will always be a lag as the system comes up to speed.”
Mr Piper said he was confident his colleagues in the upper house would be able to vote on the Bill during one of the two Wednesdays in May, when time has been set aside for it.
After that there are another two Wednesdays in June which could be used for amendments if necessary. If amended, the Bill will be passed back down to the lower house again.
Parliament doesn’t sit at all in July and MPs won’t be back until August 9.
“This is the big question – will we see amendments being used to further obstruct? We can’t say for certain it will be, but it seems likely,” Mr Piper said.
“We will see amendments that are coming from a well-intentioned place, but we already have one of the most conservative models in Australia today.
“It’s a very narrow group of people who will be able to access it, and even well-intentioned amendments can have a big impact on people’s ability to access it.
“On the other hand, we’ve observed before there have been amendments we didn’t believe were put up with a view to improve to the legislation – they were put up with a view to make it unworkable. We hope that won’t be the case.”
Kiki Paul, chief executive of pro-Bill lobby group Go Gentle Australia, urged politicians to avoid “needless delays”.
“Voluntary Assisted Dying is not an abstract debate for people in NSW. The reality is many terminally ill people have already died waiting for this law, which is a tragedy not just for them, but for the loved ones they leave behind,” she said.
MPs who have opposed the legislation have expressed concerns there won’t be enough safeguards in place to prevent people from feeling coerced to end their lives, and have argued the state shouldn’t have the right to kill anyone.
