Australians have unequal rights to die. For some families, that only adds to the pain – The Guardian

Katie Leigh French was Sue Waltons stepdaughter, but Walton never really made the distinction. One of six daughters in a blended family, French like her stepmum worked in aged care, and the pair used to talk all the time, night shift, on the phone or shed text me. That was until July of last year when, just two weeks after giving birth to a baby boy, French was told that she had stage 4 cancer. She was given three months to live. She was 35 years old.

Soon after her diagnosis, French talked to her stepmum about her decision to apply to access voluntary assisted dying (VAD), with all the pragmatism of a couple of aged care workers. She said, Im going to do it, and it seemed like she was sort of waiting for approval. And I said: Kate, its your body. Its your choice, says Walton. I know whats going to happen at the end of all of this, and so do you. And you have the right to decide what to do.

French had moved to Victoria, the first state in Australia to legalise voluntary assisted dying, before she discovered she was ill and so she was eligible to make use of that states laws. While she longed to come home to her dad, her stepmum, and her friends and family in Kanahooka, NSW, she was anchored to Melbourne by the lockbox of life-ending medication shed jumped through legal hoops to attain and the knowledge that if she returned home to NSW to use it, shed be breaking the law in the last state in Australia yet to legalise voluntary assisted dying.

Last month marked the third time in a decade that the NSW upper house has debated voluntary assisted dying. NSW had been in line to become the first Australian state to legislate it in 2017, but the bill failed to pass in the upper house by just one vote. Days later, Victoria legalised voluntary euthanasia.

In 2021 the issue took on an extraordinary momentum across the country, with a similar scheme to Victorias coming into effect in Western Australia in July, and Tasmania and South Australia passing legislation in the same year. The federal government has denied the territories the chance to make their own laws on the issue.

All of this means that the rules on voluntary assisted dying are not uniform across Australia. It leaves some terminally ill people in one state or territory unable to choose to end their lives, while those on the other side of the border can. And it leaves a few, like French, stuck between family on one side, and the death they want on the other.

NSWs latest bill finally passed the lower house in November 2021, on the last day of parliamentary sitting for the year. Three months later Walton stood outside parliament house in the rain, at a rally to urge members to push the bill through the upper house.

Walton told organisers shed return to the next rally, in between trips back and forth from NSW to Melbourne to care for French. Protests like this kept her busy, kept her mind off things, but she also had something else tugging at her, a promise shed made to her daughter: to be by her side when she decided to take the medication that would end her life. But just over 24 hours later, French was dead.

Independent member for Sydney Alex Greenwich knows a bit about the cost of delaying this kind of legislation, having co-sponsored failed bills in the past.

This time around, hes led the process, introducing the latest bill in October last year. With each bid to get the legislation up, Greenwich has been confronted by the costs of delay to the people desperate to see such a bill passed. Dealing with disappointing people that we havent resolved this for yet is tough, but its certainly not as tough as the cruel deaths that people experience and the trauma that their family members then face.

When French received her diagnosis last year, it was via Zoom. The city was about to enter hard lockdown again, and Walton began the task of coordinating with two state governments to get over the border to help nurse her daughter and take care of their newborn grandson, Jameson, the baby French had spent 10 years trying to conceive. It was the start of a dawning realisation of just how diabolical navigating the sometimes vastly different bureaucracies of neighbouring states could be.

Walton and her husband spent the next six months driving up and down the Hume to see French. (Waltons husband, Andrew, has leukaemia and cant get on a plane due to his compromised immune system.) Having only moved to Victoria shortly before the pandemic hit, Walton says French and her husband hadnt yet had a chance to build up much of a support network. They tried to get back home to Kanahooka as often as they could, but always returned to Melbourne.

The young mothers last trip home was for Christmas with her large extended family. It was an extremely emotional time for her and us, as she dearly wanted to stay at home and be with us all for whatever time was left, says Walton. If the law was in NSW, she wouldve been here with us and all her sisters, all her friends and all her family.

But with all our hearts broken she went back to Victoria.

In an April 2021 Australia Institute poll, three-quarters of Australians agreed with the principle that a person who is experiencing suffering that cannot be relieved and who asks to die should be allowed to receive the assistance of a doctor to do so. Another July 2021 Australian Institute poll found that seven in 10 NSW voters think that voluntary assisted dying should be legal.

Greenwichs current proposal, despite being personally opposed by both premier Dominic Perrottet and opposition leader Chris Minns, is backed by 28 MPs, including members of the government, crossbench and the Labor opposition the highest number of co-sponsors to a bill in the history of any Australian parliament.

In all the states that have thus far legalised it, VAD is only available to adults with decision-making capacity in the end stages of a terminal illness, and who are suffering intolerably. The person must maintain decision-making capacity throughout the process and make repeated requests for VAD. They can withdraw at any time. Amid caring for her newborn and dealing with increasingly painful symptoms, French applied for access to VAD in August. It was approved by February. By then, French had well outlived her three month prognosis. And even then, Walton says she was reluctant to actually order the medication to be delivered to her house.

The latest figures from Victorias voluntary assisted dying report of operations show that since June 2019, when the act came into force, until 30 June 2021, 836 people were assessed for eligibility to access VAD. Of those, 674 permit applications were made and 597 permits were issued. Of those permits, 331 people have died from taking the prescribed medications.

As reflected in Victorias data, many people who are granted a permit for medication dont utilise it. But for Walton, being in a different state provided another level of difficulty, given she was determined to honour her promise to be by Frenchs side if and when she decided to take the medication.

For the last five weeks she was asking us: Can you come down tomorrow? Im going to do it. And so wed prepare to leave at three in the morning, and wed ask her if she could wait that long, and then, hours later, shed say, Im not taking it tomorrow. And thats been going on for weeks.

She was clinging by the fingernails, as long as could, says Walton. The tumours became so large in her bones that they fractured they actually splintered she had a broken left arm. We knew that would happen, she knew that would happen, but she just didnt want to leave her little fella.

French was determined to see her sons first birthday. Instead, on Walton and her husbands last visit to Melbourne, as Jameson turned seven months old, French decided to throw a party. She didnt want to miss his first birthday party. So we held one early.

After the party Walton and her husband reluctantly returned home in time for Andrews regular course of treatments for his leukaemia. That was the week that Walton decided to step up to the Dying with Dignity rally. The week she had no idea just how little time there was left.

After Jamesons party, Frenchs condition rapidly deteriorated. She had begun to lose consciousness. Her family made preparations to once again head down the freeway to be by her side. But on the Thursday morning, the day after the rally, she suddenly became conscious and with her husband by her side took the medication. She passed away an hour later.

Greenwich has been struck by the stories of family members like Walton. Theres just a massive amount of stories in NSW, coupled with the sheer inequity that then exists by the fact that people in Victoria and Western Australia can already access this, and soon people in all of the other states.

By the time the NSW upper house concluded debate, a majority of members had spoken in favour of the VAD bill. Advocates like Dying with Dignitys Shayne Higson now believe its likely the legislation will pass when parliament resumes in mid-May. If it then passes without amendment, she estimates it could be implemented by the end of 2023.

Of course for some terminally people in NSW that will still be too late for them to access.

And for their families, that means trying to make peace with the way they died.

I dont make a promise easily. It means an awful lot to me, says Walton. And I now have to live with the fact that I didnt keep my promise to be there for Katies last breath. And I dont know whether she wouldve known or not, but I know myself. So thats just another thing that breaks my heart.

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Australians have unequal rights to die. For some families, that only adds to the pain - The Guardian