As the 17th attempt to legislate voluntary assisted dying goes before SA Parliament, advocates share why they believe there should be a choice.
In her home in Nuriootpa, 76 year old Lorraine Gregory sits at her dining room table, hands folded gently across a copy of Andrew Denton’s ‘The Damage Done’.
Having just finished her morning cup of tea, she appears calm and comfortable, sharing cheerful small talk and a warm smile, endearments that have no doubt served her well whilst mentoring some 450 students throughout her career as a piano teacher.
But Lorraine’s relaxed appearance belies the brutal assault taking place inside her body.
A sufferer of a rare cancer known as adenoid cystic carcinoma, her illness has developed as such that she will never recover.
“I’m in palliative care, even though I’m at home,” she explains.
“You just sort of live each day as you get it, and you’re thankful for it, although, when you’ve got a pain that’s shooting up to eight out of ten, you’re not too thankful then. It gives you a whole different perspective on life.”
Having declined radiotherapy in preference to quality of life over quantity, Lorraine is approaching a stage some have called the ‘in between’: the time before death when quality of life no longer exists.
As she prepares to confront her final days, it may be surprising to learn it is not death itself Lorraine fears, but the lack of choice she may have in the way it happens.
“One thing I don’t want to do is end up in a bed in a hospital, or even at home, where you are no longer in control of your own life, and you’ve got no choice,” says Lorraine.
“I’m looking forward to being in heaven, safe in the arms of Jesus, but the process can be elongated and terrible for both the patient and the family watching when they can’t do a thing about it.”
Having witnessed her own mother die in pain at the age of 74 from ovarian and bowel cancer, Lorraine is acutely familiar with the indignity death can bring.
Since learning of her own fate, she has courageously researched the topic of voluntary assisted dying, reading testimonials, examining evidence and querying leaders within her church, politicians and her peers.
She has become a passionate advocate for legislation that would allow an advanced terminally ill patient to choose to end their life in South Australia.
“From my own perspective, how can we turn away from somebody who is dying in agony at the final stage of their disease and pleading for relief from their suffering, and say, no, we can’t help you because God is the only one who can take life away?” Lorraine asks.
“Some Christians might choose to die that way, according to their belief. But others would like to be given a choice.”
Lorraine Gregory has a terminal illness.
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Not far away in Greenock, Jacqui Possingham is in between work calls, a hands-free headset hooked around her neck.
It’s another busy day in the life of this mum of one, while her partner, Dave is at work in Penrice: she receives a dumpling delivery, a tradie comes to finish work on her home office renovations, and she keeps a watchful eye over her staffy, who is on the mend after a leg operation.
The busyness of her life now is in significant contrast to how this year began, when everything was put on hold while she and her family watched her beloved mother, Heather die.
“When you have a family member or relative or friend who is in that in between stage, your life stops,” says Jacqui.
“Mum got to a point where she couldn’t visit friends anymore or have people over because she’d wake up and she didn’t know how much pain she’d be in… so in that in between stage you couldn’t make any plans.”
Heather was diagnosed with terminal pancreatic cancer in October 2019 after more than a year of ill health.
The five months leading up to her death in March this year were fraught with anxiety for the family as they grappled with how Heather’s inevitable death would play out; not because the path was unknown, rather that the trauma was all too familiar.
“In 2015 my father, Doug was diagnosed with lung cancer,” explains Jacqui.
“The way the cancer affected him and his body, he deteriorated slowly with significant impact on his mental health, mobility and dignity. He was in and out of hospital, he had falls and he became frustrated. He knew he wasn’t going to get better.”
Jacqui struggles to hold back the swell of emotion that these vivid memories invoke.
In life, her father had been strong, hardworking and resilient, a third generation Adelaide Hills market gardener, and a dedicated family man.
But the emotional torment of his cancer became intolerable.
“He wanted us to take him for a walk down the river and push his wheelchair off the end of the jetty and we couldn’t do that. We couldn’t end his life,” says Jacqui.
“He had a gun under his bed and he became too weak and too disorientated to be able to suicide, so he and my mum, his wife of 52 years, had to experience this distressing time of his life, when he didn’t want to be alive.”
The last seven days of Doug’s life were spent in the Modbury Hospital in a state of confusion, pain, and eventually in an induced palliative drug coma during which time he starved and dehydrated to death.
It was not the passing that Heather wanted for herself, or for her daughters to witness all over again, and while her situation was better managed, in the end she too had no choice but to suffer her last 12 days in hospital.
“The morning mum was taken to Angaston Hospital she had started vomiting blood and faeces,” recalls Jacqui.
“The prescribed medications could no longer hold back the pain from the cancer destroying her body.”
Jacqui never left Heather’s side as the morphine pump was attached to her skeletal arm, the last remaining option available for the final hours of her mother’s life.
“I knew she would never wake,” says Jacqui, her still-raw heartbreak fuel for her determination to see change to the laws surrounding VAD in South Australia.
“The in between stage could be so much more peaceful knowing there is a choice to end the suffering.”
VAD advocates on the steps of SA Parliament this month, Angie Miller, Julie Stapleton and Jacqui Possingham.
An issue on which reasonable people disagree
Over the past 25 years, 16 separate attempts have been made to legislate voluntary assisted dying (VAD) in South Australia.
Earlier this month, a seventeenth attempt was introduced to Parliament by the Hon Kyam Maher MLC, following the report of a joint committee established in 2019, chaired by Mr Maher, to examine end of life choices.
Over 18 months, the committee looked at the Victorian model of VAD, which has been in operation for more than a year, as well as palliative care and advanced care directives.
In all, it received 126 written submissions, and heard evidence from VAD advocates, police, coroners, religious leaders and medical professionals.
“As a result of that… we’ve drafted a bill based on the Victorian scheme,” Mr Maher told The Leader.
In 2016, the most recent previous attempt to legislate voluntary euthanasia, the Dying with Dignity Bill was defeated by the casting vote of the Speaker, when the floor of the Chamber was tied 23 to 23.
“Last time it was exceptionally close,” Mr Maher said.
“I think the big thing that’s changed since the last 16 attempts is we now have a system that’s operating in Australia and is shown to be effective and shown to be protected.”
In Parliament, Mr Maher introduced the latest bill with an emotional speech, recalling the trauma of his mother, Viv’s death from pancreatic cancer in 2017.
His story echoes that of Jacqui’s, and countless others who have witnessed the agonising death of a loved one.
“She literally starved and wasted away with no medication, food or water over six painful, torturous days,” said Mr Maher.
“Viv was often in half-aware states of panic as her body finally did what her mind had decided so long to do.
“It does not have to and it should not be this way.”
According to Mr Maher, some of the most compelling evidence heard by the joint committee in support of a legal system of VAD came from the Coroner and SAPOL, who attributed just over 10 percent of suicides in South Australia to those with a terminal illness, many of which were observed to be “undignified, violent and often committed in isolation”.
“The effects that has on family members and first responders... when people with a terminal illness take matters into their own hands is quite traumatising,” Mr Maher said.
On November 25 the Australian Nursing and Midwifery Federation (SA Branch) published an open letter imploring MPs to vote in favour of the bill, stressing it would not and should not be at the detriment of palliative care, rather to offer a safe and legal alternative when that care is no longer enough.
“The impact on nurses and carers at the bedside of the terminally ill is all too raw,” the letter read.
“We are the ones who hear their cries for an end to the suffering, powerless to act, heartbreaking as it is to witness.”
But despite overwhelming support for VAD from people of all walks of life, reportedly as high as 90 percent in community surveys and 99 percent in an online poll conducted by The Leader last week, resistance remains.
“Voluntary assisted dying is an issue on which reasonable people disagree,” Mr Maher told the Chamber.
“As members of Parliament we have different views; our views, like everyone else’s, are a product of our life experience and outlook on the world.”
The “slippery slope” into abuse of the system is an oft-raised fear amongst those who are opposed to legalising VAD, but according to Mr Maher, there has been no evidence of coercion in interstate examples.
“The model in Victoria is the most widely protected form of VAD in the world, with 68 separate safeguards,” he told The Leader.
“The fact that there’s so many safeguards in place and it’s been up and running for 18 months without any problems at all in terms of its safeguards I think will give some comfort to decision-maker members of Parliament about that scheme.”
Ethically, there remains a component of religious bodies who do not agree with any law that allows VAD, despite many Christians, like Lorraine, being in support.
“To deliberately end a life is not a choice for us to make,” Bishop John Henderson of the Lutheran Church of Australia told the End of Life Choices committee on May 26.
He along with leaders from the Catholic, Baptist and Anglican faiths instead called on greater resources to be concentrated on palliative care.
“We can, out of our considerable wealth as a society, provide for the dignity, respect and choices of people regarding their care during their last days or weeks on earth,” Bishop Henderson said.
Whether this seventeenth bill will be the one to allow South Australia to follow in the footsteps of other states is a matter for the conscience of our elected MPs, who will debate the bill in the new year.
Advocates like Jacqui and Lorraine are certainly hopeful that it will be, even though Lorraine concedes it will likely come too late for her.
“For me, the thought of dying or being dead is simply like walking through the doorway into another room where everything will be wonderful,” she said.
“But it’s getting through that door that’s the problem. We must be given the choice.”
The Victorian model
There are 68 safeguards in Victoria’s Voluntary Assisted Dying Act (2017), the legislation on which South Australia’s bill is drafted.
It has been described by the Victorian Premier as being the safest and most conservative scheme in the world.
Applicants must adhere to specific criteria, being:
1. They must have an advanced disease that will cause their death and that is likely to cause their death within six months (or within 12 months for neurodegenerative diseases like motor neurone disease), and causing the person suffering that is unacceptable to them.
2. They must have the ability to make and communicate a decision about voluntary assisted dying throughout the formal request process.
3. They must also be an adult 18 years or over, have been living in Victoria for at least 12 months, and be an Australian citizen or permanent resident.
There is a formal nine step process to accessing VAD.
In its first year of implementation in Victoria, 272 eligible applicants applied for a permit, 231 permits were issued and 124 people died using the scheme.
Applicants ranged in age from 32 to 100, with 78 percent of those who died having a cancer diagnosis, followed by 15 percent suffering from a neurodegenerative disease such as MND.
Doctors and other health practitioners are not obliged to participate in the VAD system if they have a conscientious objection.