Australians have unequal rights to die. For some families, it only adds to the pain | Help to die


Katie Leigh French was Sue Walton’s stepdaughter, but Walton never really made the distinction. One of six daughters in a blended family, French – like her mother-in-law – worked in a nursing home, and the couple “used to talk all the time, at night, on the phone or she told me. was texting.” That was until July last year when, just two weeks after giving birth to a baby boy, French was told she had stage 4 cancer. She had three months to live. She was 35 years old.

Shortly after her diagnosis, French spoke to her mother-in-law about her decision to seek access to voluntary assisted dying (VAD), with all the pragmatism of an older working couple. “She said, ‘I’ll do it,’ and it seemed like she was kind of waiting for approval. And I said, ‘Kate, it’s your body. It’s your choice,’” Walton says “I know what’s going to happen at the end of it all, 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 legalize physician-assisted dying, before discovering she was ill and therefore eligible to use that state’s laws. As she longed to get home to her father, mother-in-law, friends and family in Kanahooka, NSW, she was anchored in Melbourne by the vault of deadly drugs she had taken the legal steps to achieve – and the knowledge that if she returned home to New South Wales to use it, she would be breaking the law of the last state in Australia to yet legalize voluntary assisted death.

Last month marked the third time in a decade that the NSW upper house debated voluntary assisted death. NSW was on track to become the first Australian state to legislate in 2017, but the bill failed to pass the upper house by a single vote. A few days later, Victoria legalized voluntary euthanasia.

In 2021, the issue has gained extraordinary momentum across the country, with a similar agenda to Victoria coming into force in Western Australia in July, and Tasmania and South Australia passing legislation the same year. The federal government denied the territories the chance to make their own laws on the matter.

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

Sue Walton shows a photo of her stepdaughter Katie Leigh French. Photography: Steven Saphore/The Guardian

NSW’s latest bill was finally passed by the lower house in November 2021, the last parliamentary sitting day of the year. Three months later, Walton stood outside parliament in the rain, at a rally to urge MPs to push the bill through the upper house.

Walton told organizers she would return at the next gathering, between trips from NSW to Melbourne to take care of French. Protests like this kept her busy, distracted her, but she also had something else that tugged at her, a promise she had made to her daughter: to be by her side when she decided to take the drug that would end his life. . But just over 24 hours later, French was dead.

“With our hearts broken, she returned to Victoria”

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

This time around he led the process, introducing the latest bill in October last year. With each attempt to pass the legislation, Greenwich has faced the costs of delay for people desperate to see such a bill passed. “Dealing with disappointing people for whom we have not yet resolved this is difficult, but it is certainly not as difficult as the cruel deaths that people suffer and the trauma that their family members then face. “

When French received his diagnosis last year, it was via Zoom. The city was about to enter a hard lockdown again, and Walton began the task of coordinating with two state governments to cross the border to help breastfeed her daughter and care for their new-born grandson. born, Jameson, the French baby had spent 10 years trying to conceive. This was the start of a dawning awareness of the diabolicity of navigating the sometimes very different bureaucracies of neighboring states.

Walton and her husband spent the next six months traveling up and down the Hume to see French. (Walton’s husband, Andrew, has leukemia and can’t fly due to his weakened immune system.) Having only moved to Victoria shortly before the pandemic, Walton says French and her husband hadn’t had a chance to build much of a support network yet. They tried to get home to Kanahooka as often as they could, but always came back to Melbourne.

The young mother’s last trip home was for Christmas with her large extended family. “It was a hugely emotional time…for her and us, because she really wanted to stay home and be with all of us for whatever time was left,” Walton said. “If the law was in New South Wales, she would have been here with us and all her sisters, all her friends and all her family.

“But with all our hearts broken, she returned to Victoria.”

“She just didn’t want to leave her little guy”

In an April 2021 Australia Institute poll, three-quarters of Australians agreed with the principle that a person experiencing unrelieved suffering who asks to die should be allowed to receive the assistance of a doctor to do so. Another Australian Institute poll from July 2021 found that seven in 10 NSW voters think voluntary assisted dying should be legal.

Greenwich’s current proposal, despite personal opposition from Prime Minister Dominic Perrottet and Opposition Leader Chris Minns, is backed by 28 MPs, including government, MPs and opposition Labor – the largest number of co-sponsors of a bill in the history of any Australian parliament.

Sue Walton and Katie Leigh French
“She really wanted to stay home and be with all of us”: Sue Walton and Katie Leigh French. Photography: Steven Saphore/The Guardian

In all the states that have so far legalized it, VAD is only accessible to adults with decision-making capacity in the terminal phase of a terminal illness and suffering intolerably. The person must maintain decision-making capacity throughout the process and make repeated VAD requests. They can withdraw at any time. As she cared for her newborn and coped with increasingly painful symptoms, French requested access to VAD in August. It was approved in February. By then, French had survived his three-month prognosis well. And even then, Walton says she was reluctant to order the drugs delivered to her home.

The latest figures from Victoria’s Medical Assistance in Dying Operations Report show that since June 2019, when the law came into force, until June 30, 2021, 836 people have been assessed for access to the VAD. Of this number, 674 permit applications were filed and 597 permits were issued. Among these permits, 331 people died after taking the prescribed drugs.

As the data from Victoria shows, many people who get a drug license do not use it. But for Walton, being in a different state provided another level of difficulty, given that she was determined to honor her promise to be by French’s side if and when she decided to take the drug.

“For five weeks she had been asking us, ‘Can you come tomorrow? I will do it.’ And so we were getting ready to leave at three in the morning, and we were asking her if she could wait that long, and then, hours later, she was saying, “I’m not taking it tomorrow.” And it’s been going on for weeks.

“She was hanging on by her fingernails, as long as she could,” Walton explains. “The tumors got so big in her bones that they fractured – they actually burst open – she had a broken left arm. We knew it would happen, she knew it would happen, but she just didn’t want to leave her little guy.

French was determined to see her son’s first birthday. Instead, when Walton and her husband last visited Melbourne, when Jameson was seven months old, French decided to throw a party. “She didn’t want to miss her first birthday party. So we organized one earlier.

After the party, Walton and her husband reluctantly returned home for Andrew’s regular treatment for his leukemia. This is the week Walton decided to participate in the Dying with Dignity rally. During the week, she had no idea how little time she had left.

Sue Walton at her home in Kanahooka.
Sue Walton at her home in Kanahooka. Photography: Steven Saphore/The Guardian

After Jameson’s party, French’s condition deteriorated rapidly. She had started to lose consciousness. His family prepared to go back down the highway to be by his side. But on Thursday morning, the day after the rally, she suddenly became aware and, with her husband by her side, took the medicine. She died an hour later.

Greenwich was struck by the stories of family members like Walton. “There’s just an enormous amount of story in New South Wales, coupled with the sheer inequity that exists then that people in Victoria and Western Australia can already access it, and soon people in all other states.”

By the time the NSW upper house wrapped up the debate, a majority of members had voted in favor of the VAD Bill. Advocates like Shayne Higson of Dying with Dignity now believe it is 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 ill people in NSW it will still be too late for them to access it.”

And for their families, that means trying to come to terms with the way they died.

“I don’t make a promise easily. It means a lot to me,” says Walton. “And I now have to live with the fact that I didn’t keep my promise to be there for Katie’s last breath. And I don’t know if she would have known or not, but I know myself. So that’s just another thing that breaks my heart.


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