Voluntary assisted dying scheme becomes available to eligible patients in South Australia
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Kylie Hicklin's final memories of her father are of him lying in bed unable to move, moaning in excruciating pain.
VAD legislation passed SA parliament in 2021 after years of failed attempts
The state government says it is confident the scheme is appropriately safeguarded
Trevor Greenham died in 2007, aged 47, from motor neurone disease, a degenerative condition that affects motor nerves and eventually causes muscle paralysis.
"All that gave him some relief was just dabbing his head with a damp cloth … (and) all you could hear from him was moaning," Ms Hicklin, now 34, said.
"I really don't want to go like that."
Ms Hicklin was diagnosed with the disease herself three years ago.
"For me it was hard because I was an active member at the gym, they've got me on their wall as part of their display," she said.
"I used to go five days a week but was told as soon as I was diagnosed that I wasn't allowed to do that kind of exercise anymore.
"I've got … a seven-year-old and an 11-year-old … (and) I was one of those parents that if we went to the water park, I'd be going down the slide, or if we went to the playground I'd go on the flying fox.
"Because I saw my dad and other family members go down this path (with MND), I sort of knew what was ahead of me."
Laws allowing voluntary assisted dying take effect in South Australia today.
Ms Hicklin said she was relieved, after spending the past few years advocating for the scheme, while processing her own life-altering diagnosis.
"It's reassuring to know that when that comes into play, I can go how I want," she said.
After 16 failed attempts in 26 years, legislation passed the South Australian parliament in 2021 allowing for a voluntary assisted dying (VAD) scheme to be established.
The legislation outlines how, and for what reasons, voluntary assisted dying can be made available to people at the end of their life.
Psychiatrist Melanie Turner has been appointed as the first presiding member of the SA Voluntary Assisted Dying Review Board, which will oversee the "landmark scheme", while collecting patient data and community feedback.
"Before I did psychiatry, I worked in palliative care as a junior doctor," she said.
"I got to sit beside a number of people as they died, because they didn't have family members in the country town where we were.
"I think those … experiences meant I really felt voluntary assisted dying needed to be available, and we needed to do it really well, and we had to always keep the family and the patient in mind and focus on what their wishes were.
"I didn't think it should be my decision about how that person dies — it should be theirs."
Dr Turner said she was confident the scheme was a "compassionate" system, with enough checks and balances in place to help eligible people understand, and use, the option.
Prospective patients must be aged 18 years or older, be an Australian citizen or permanent resident, and a resident of South Australia for at least 12 months.
They must initiate the process themselves, act "freely and without coercion", and must meet the clinical requirements to access a prescribed VAD substance from a pharmacist.
The clinical assessment includes that the person's condition is incurable, progressive, and in its advanced stages, that it will cause death within a prescribed time frame, and is causing suffering that "cannot be relieved in a manner the person considers tolerable".
"The first port of call for most people going through the pathway is going to be talking to their own doctor that they know, but they also might talk to … a (SA Health) care navigator service," Dr Turner said.
"After that first appointment, if that particular doctor is happy to support the person in that pathway, there's a second appointment with another practitioner called a consulting practitioner.
"If that practitioner sees the person and agrees that they meet the eligibility criteria, and that they are wanting to follow a VAD pathway of their own choice, the person is really on the beginning of that pathway up to accessing a substance to end their life."
Two VAD-trained and registered doctors must be involved in the process, and the minimum time frame for the delivery of the substance is nine days after the first formal request.
Dr Turner said data from other states indicated a "handful" of people would likely seek to use the scheme immediately.
Up to 40 people are expected to initiate requests about VAD each month, with about a quarter of those continuing the process until their death.
While in opposition, Kyam Maher introduced the bill which ultimately passed parliament, making VAD legal in South Australia.
The now attorney-general said he watched his own mother die from cancer, in "tremendous pain".
"Like many, many people out there in the community, I've had direct first-hand experience with a loved one who has passed away … who would have much preferred to have the option to end their life with the same dignity with which they lived their life," Mr Maher said.
"What we do know from interstate and overseas research, is that just having the ability to use a VAD scheme gives a great deal of relief for people suffering a terminal illness.
"I am absolutely confident that this scheme is as appropriately safeguarded as it can be."
Mr Maher said the VAD scheme would be available to people across the state, including in regional and remote areas where health services are typically more difficult to access.
He said he believed VAD-related telehealth services would also improve in the coming months, with the federal government looking at changing laws that prohibit discussions about life-ending substances via "carriage services" like telephone or video link.
More than 60 South Australian doctors have registered to complete training to become a registered VAD practitioner, about a third of those in regional and rural areas.
Ms Hicklin said she hoped the availability of voluntary assisted dying would help destigmatise conversations about death.
"Death is a part of life, and it hits all of us," she said.
"I've spoken to my mum about this a fair bit, and I've asked for her feelings about me doing it myself and no longer being here.
"The thought of going in a hospital where I've got my family around me and music or something is a (nicer) thought than being bedridden and moaning in pain.
"So many people die alone and now we … have a chance to pass away surrounded by family.
"It's more peaceful, my family will know, and have their chance to say goodbye."
We acknowledge Aboriginal and Torres Strait Islander peoples as the First Australians and Traditional Custodians of the lands where we live, learn, and work.
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