Kath Dyason had been feeling unwell for several months, but says she was stunned to receive a terminal diagnosis.
WARNING: This story discusses themes of death, dying and suicide.
Late last year, Ms Dyason was diagnosed with leukaemia and given just months to live.
Since then, the Canberra grandmother has been waiting for the ACT's proposed voluntary assisted dying (VAD) laws to be introduced and says if change doesn't come soon, she may contemplate suicide.
"I didn't want to become a burden on everyone around me, and I didn't want to lose all my faculties and just be this miserable vegetable and to die," Ms Dyason said.
"People have a right to choose how and when they want to die rather than being kept alive in a state of misery and pain and anxiety."
Ms Dyason has been an advocate for voluntary euthanasia for more than 30 years – a view she passionately shared with her late husband, Canberra surgeon Dennis Dyason.
And she's closely following the public debate over the ACT government's proposed assisted dying laws, which are rapidly gaining momentum.
For 25 years, Commonwealth restrictions prevented the ACT and the Northern Territory from introducing voluntary euthanasia legislation, until the Restoring Territory Rights Bill was passed last year, overturning the ban.
The ACT government is now drafting VAD laws, which will likely be introduced to the Legislative Assembly within months.
How does voluntary assisted dying work?
Victoria was the first Australian state to pass legislation allowing voluntary assisted dying in 2017, and since then every state has followed suit.
While there are subtle differences between each state and territory's laws, they all share tight eligibility criteria.
Potential candidates must be over 18, enduring great suffering from a terminal condition that is likely to cause their death within six to 12 months, and it must be a voluntary process at every step.
Patients need to be assessed by at least two health specialists before a voluntary euthanasia application can be approved.
Finally, eligible patients would self-administer a lethal drug, or have a medical professional administer it for them if they're unable to take it themselves.
The voluntary assisted dying legislation is designed to protect medical professionals who assist in their patient's death.
Canberra laws might cover children as well
But ACT Human Rights Minister Tara Cheyne has foreshadowed the most liberal voluntary euthanasia laws in the country, which could be open to terminally ill children as well as adults.
"Is 18 [years old] the right starting point for us here in the ACT? Or should we be considering the concept of a lower age or something like a mature minor?" Ms Cheyne said.
"I think that there are other standards within the ACT government that we have been looking at about what is an age of maturity regarding decision-making capacity, such as 14.
"It may well be that an age limit is arbitrary and it would be about a medical professional's assessment of a person's decision-making capacity, rather than them simply ticking over a birthday."
Ms Cheyne says the cabinet is also still debating whether to remove the restriction on a "time frame to death", which would potentially make VAD available to more terminally ill patients.
VAD won't be legal until 2024 at the earliest
The ACT government says it's still "on track" to deliver legislation to the parliament before the end of 2023, but concedes it will be many months before voluntary euthanasia will be legal.
Ms Cheyne says there's strong community support for VAD legislation, reflected through its recent public consultation process.
"Over 3,000 people participated [in consultation panels] and about 500 submissions as well," Ms Cheyne said.
"Again, consistently, it's over 80 per cent support for voluntary assisted dying."
And the minister says she expects that support to be echoed in the Legislative Assembly.
While the ACT Greens have a party policy to support VAD, for other MLAs it will be a conscience vote.
"I'm confident that there is broad support for voluntary assisted dying," Ms Cheyne said.
But the laws are likely to come too late for Ms Dyason, who says she's ready to take matters into her own hands.
"Well, I guess what it comes down to is suicide, one way or another," Ms Dyason said.
"It would be much more pleasant for everybody if you could do it legally without too much hassle."
When palliative care isn't enough
In the ACT, palliative care services are offered to patients from the time of their diagnosis with a terminal illness — even if their death could potentially still be years away.
That includes in-home medical help, in-hospital outpatient and inpatient care, and care at the public hospice Clare Holland House, which is run by the Catholic Church.
At the Canberra Hospital, palliative care takes many forms – from medical intervention, right down to harp therapy from clinical musician Alison Ware, who offers the dying desperately needed moments of peace in tumultuous times.
Palliative Care nurse practitioner Kate Reed says some of her patients have asked when voluntary assisted dying will be legal in the ACT — particularly as it will be allowed in NSW by the end of 2023.
"I've had a few patients raise that with me — it is a very topical issue and people are aware of voluntary assisted dying coming into the ACT," Ms Reed said.
"We see a lot of patients from New South Wales, that's our catchment zone as well, so that will be coming into the New South Wales jurisdiction at the end of this year.
"When a person is with me … we're talking about end-of-life care, that should be an opportunity for a person to be able to explore all options of their care.
"What I would like to make sure is that when we are having discussions with people at end-of-life that there aren't necessarily taboo subjects."
But, under current laws, Ms Reed can't raise the issue of voluntary assisted dying with patients, and any family member or health worker who assists in a suicide attempt could face criminal charges.
Catholic Church will refuse to offer voluntary euthanasia
The Catholic Church is calling on its parishioners to fight against voluntary assisted dying laws.
Archbishop of Canberra and Goulburn Christopher Prowse has called the proposal "brutal" and "tragic", and wants a more thorough debate.
"It looks like the numbers are stacked up against us, but it is a democracy," Archbishop Prowse said.
And what the church thinks on the matter is important, because it runs Canberra's only inpatient end-of-life care hospice, Clare Holland House, under contract for the ACT government.
"We've really got a bit of skin in the game so that we can really talk with authority," the Archbishop said.
And the Archbishop has confirmed VAD will never be offered at the hospice.
"No, it won't, and not only Clare Holland House, but I can speak with certainty that it won't be offered in any of our healthcare facilities," Archbishop Prowse said.
But Ms Cheyne says the government is considering options to get around the Catholic Church's opposition – including establishing an alternative end-of-life hospice.
"I think there is a reasonable view that faith-based hospice facilities are appropriate, but that having a secular facility would also be very welcomed by the community," Ms Cheyne said.
"And it may not be a conversation about one or the other — it may be that both could coexist."
Institutions or doctors 'can't be forced' on voluntary euthanasia: legal expert
Euthanasia law expert Professor Ben White says every state has faced some level of conscientious objection — from medical practitioners or large institutions.
"The Queensland law has sought to respect institutional positions. No institution is required to participate in voluntary assisted dying," Professor White said.
"But it's taken a nuanced approach to making sure that patients, if they're eligible, don't miss out on voluntary assisted dying."
Professor White is one of Australia's foremost end-of-life legal experts – and he says interstate experience proves that VAD laws "are safe".
"I think the voluntary assisted dying laws across Australia have been implemented well and I think we can confidently say that the systems are safe… [they] are operating as intended," he said.
"We've had now three and a half years of voluntary assisted dying in Victoria, with three years of data … and the evidence that's coming out shows … that people who are eligible are the only ones who are able to access voluntary assisted dying."
Push for more palliative care
Meanwhile, parts of the health industry are worried that terminally ill patients may apply for voluntary assisted dying because of a lack of suitable healthcare options.
Palliative Care ACT, which advocates for better end-of-life care resources, says it will not be taking sides in the assisted dying debate.
But it is concerned that VAD could be seen by some as an alternative to palliative care and is calling for more funding for end-of-life services.
And Archbishop Prowse agrees.
"It's true that there are certain illnesses where palliative care doesn't seem to be able to be of great assistance," he said.
"However, with renewed research into palliative care, those areas too can be overcome.
"It seems to me that euthanasia or VAD is rendered useless when you've really got a fantastic palliative care resource there.
"Euthanasia and VAD are so brutal and a tragic way of dealing with terminal illness for people in their great fragility."
