Voluntary assisted dying scheme becomes available to eligible patients in South Australia

Kylie Hicklin’s last memories of her father are of him lying in bed unable to move, moaning in excruciating pain.

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 Hinklin, now 34, said.

“I really don’t want to go like this.”

Ms Hicklin was diagnosed with the disease herself three years ago.

“For me it was difficult because I was an active member at the gym, they have me on their wall as part of their display,” she said.

“I used to go five days a week, but as soon as I was diagnosed, I was told I couldn’t do that kind of exercise anymore.

“I have… 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 go down the slide, or if we went to the playground, I’d go up the flying fox goes.

“Having seen my father and other family members go down this path (with MNS), I kind of knew what was ahead of me.”

Laws allowing voluntary assisted dying come into effect in South Australia today.

Ms Hicklin said she was relieved, having spent the past few years working for the scheme, while coming to terms with her own life-changing diagnosis.

“It’s reassuring to know that when it comes down to it, I can go as I please,” she said.

Psychiatrist Melanie Turner has been appointed as the first presiding member of the SA Voluntary Assisted Dying Review Board. (Supplied) ‘Landmark’ change comes into force

After 16 failed attempts in 26 years, legislation was passed by the South Australian Parliament in 2021 providing for a voluntary assisted dying (VAD) scheme.

The legislation sets out how, and for what reasons, voluntary assisted dying can be made available to people at the end of their lives.

Psychiatrist Melanie Turner has been appointed as the first chairing member of the SA Voluntary Assisted Dying Review Board, which will oversee the “landmark scheme”, while gathering patient data and community feedback.

“Before I did psychiatry, I worked as a junior doctor in palliative care,” she said.

“I sat next to a number of people as they died because they had no relatives in the rural town where we were.

“I think those … experiences meant that I really felt that voluntary assisted dying should be available, and we should do it very well, and we should 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.

Kylie Hicklin says the scheme will allow her to die in a more peaceful way, surrounded by her family. (Provided: Kylie Hicklin) How does the scheme work?

Prospective patients must be aged 18 or over, 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 causes suffering that “cannot be alleviated in a way that the person considers tolerable not”.

“The first port of call for most people going through the pathway is going to be to talk to their own doctor that they know, but they can also talk to … a (SA Health) care navigator service,” Dr Turner said. said.

“After that first appointment, if that particular doctor is happy to support the person in that pathway, there is 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 want to follow a VAD pathway of their own choosing, then the person is really at the start of that pathway to accessing a resource to to end life.”

Kyam Maher introduced the bill to legalize voluntary assisted dying while in opposition. (ABC News: Rory McClaren)

Two VAD-trained and registered doctors must be involved in the process, and the minimum time frame for the delivery of the drug is nine days after the first formal request.

Dr Turner said data from other states suggested a “handful” of people were likely to try to use the scheme immediately.

Up to 40 people are expected to initiate VAD requests each month, with around a quarter of those continuing the process until their death.

SA government is confident that the scheme is ‘adequately secured’

While in opposition, Kyam Maher introduced the bill that eventually passed parliament, legalizing VAD in South Australia.

The now Attorney General said he watched his own mother die of cancer, in “excruciating pain”.

“Like many, many people out there in the community, I have had direct first-hand experience with a loved one who has passed away…who many preferred to have the option to end their life with the same dignity with which they lived their life ,” said Mr Maher.

“What we do know from interstate and overseas research is that just being able to use a VAD scheme provides a great deal of relief for people suffering from a terminal illness.

“I am absolutely confident that this scheme is as appropriately secured as it can be.”

Legislation legalizing voluntary assisted dying passed the SA parliament in 2021 after years of failed attempts. (ABC News: Matthew Smith)

Mr Maher said the VAD scheme would be available to people across the state, including in regional and remote areas where health services are usually more difficult to access.

He said he believes VAD-related telehealth services will also improve in the coming months, with the federal government looking at changing laws that prohibit discussions about life-ending substances via “car services” such as phone or video link.

More than 60 South Australian doctors have registered to complete training to become a registered VAD practitioner, around 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 part of life, and it affects us all,” she said.

Ms Hicklin has two young sons. (Provided: Kylie Hikclin)

“I’ve already talked to my mother a bit about this, and I asked her feelings about me doing it myself and not being here anymore.

“The thought of going to a hospital where I have my family around me and music or something is a (nice) thought than being bedridden and moaning in pain.

“So many people die alone and now we have a chance to die surrounded by family.

“It’s more peaceful, my family will know, and they’ll get a chance to say goodbye.”