When Jan Edwards speaks about her husband of 43 years, she does so with a rueful chuckle, recalling his intellect and his relentless curiosity that refused to be satisfied. Tim Edwards was a tall, “pretty good-looking” and active man who was family-oriented and concerned with making the world a better place.
“If I had to describe him in one word, it would be vital,” Jan says. “His curiosity meant he was always seeking.” In his obituary, she wrote: “He was a visionary who could see what the world could be and dedicated most of his life to making it happen.”
Yet, in his last days, this man with a zest for life wanted nothing more than to be allowed to die.
Tim had mesothelioma, the rare cancer caused by exposure to asbestos. He’d acquired it as an 18-year-old, working a summer job to pay for his university education. The disease often takes decades to appear, but when it does, it is effectively a death sentence. The five-year survival rate is five per cent. When the doctor delivered the grim prognosis, it was not death Tim feared, but the agony and dependency that would precede it.
“As soon as he figured out what the problem was [with the law], he did what he always did. He [conducted] an enormous amount of research and connected with all sorts of organisations that were working with people like him, not just to find out [information] but to assist,” says Jan. “He began working immediately to get the law changed.”
Tim was diagnosed in January 2017. Doctors treated him with four different types of chemotherapy, but by October he was told he only had about three months left to live.
Voluntary Assisted Dying (VAD) legislation was about to be debated in the Victorian and NSW parliaments, and Tim used his precious time to make a video for the advocacy organisation Dying with Dignity, describing how painful and frightening it was to feel his lungs fail. “It hurts and I’m scared,” he said, explaining what the coming months would bring: “I won’t be able to breathe. My pain levels will increase … and I will slowly turn into a frail, pain-ridden person.” He wanted to go out on his own terms, having one “final wry conversation” with each of his children and Jan, his best friend and the love of his life.
In November 2017, Victoria passed a law giving terminally ill Victorians experiencing intolerable suffering the right to access Voluntary Assisted Dying. A similar bill failed to pass the NSW Upper House by a single vote.
Tim, who lived in NSW, was frustrated that the law robbed him of his agency over his final days.
WATCH: Derryn Hinch speaks about his mothers death and Dying With Dignity. Story continues after video.
“The anger grew when he realised he was losing his capability to be who he was. He became consumed by the pain and the inability to breathe, and nothing else mattered,” Jan says. His deterioration was “horrendous”, for both Tim and for his family.
In February 2018, just when Jan thought it couldn’t get worse, she and her four children were gathered around the kitchen table with Tim’s palliative care doctor, and Jan’s daughter said something along the lines of “we just want my dad to die peacefully”.
The doctor responded sharply, saying, “You can’t do anything to end his life early and I will be aware if you do.”
If they acted to hasten the end of Tim’s suffering, the law would treat it as murder.
“It felt like we were being threatened, as if we were trying to do something,” Jan says. “She [the doctor] proceeded to say, ‘He is strong. He could go on for a long time and it is my job to make sure that happens.’ It was a very confronting conversation. I was very upset by it. To do that to my family was just unconscionable.”
Tim died the next day. His death was “a slow-motion suffocation, which was extremely difficult,” Jan says. She promised him she would continue to fight to change the law.
Four years later, NSW is the only state in Australia that has not voted in favour of Voluntary Assisted Dying. A private member’s bill passed the Lower House last November – 52 in favour, 32 against – and the Upper House will debate the issue later this year, but lobbyists are not getting their hopes up.
First, the NSW Legislative Council initiated an inquiry, which Jan addressed. She told the committee: “Tim accepted death, but not the way he died. His whole being was consumed by the suffering. We lost Tim the person, the husband, the dad, well before we lost Tim the physical being.”
One of the hardest things she now has to contend with is what the horrific manner of Tim’s death did to her family. Their children were left feeling guilty and impotent. The family was fractured, perhaps forever.
“This is a personal tragedy. But there is a fair number of them, especially as the population is ageing. It’s going to get worse and it’s not necessary,” Jan says.
A reluctant crusader
“Nobody wants to die,” says Andrew Denton. The journalist, TV producer and VAD advocate has spent the past six years immersed in the debate raging around Voluntary Assisted Dying as each state, bar NSW, has passed legislation. He was drawn to the issue after witnessing the brutal death of his father Kit at the age of 67. At the time Andrew told The Weekly, “I never understood to whose benefit he was kept alive for those extra three days, but it sure as hell wasn’t his.”
He has an intimate understanding of the damage a bad death can do to the dying, and those who love them. “What I’ve seen over and over again is generational damage,” Andrew says.
“I’ve spoken to a young mother in WA who, as her father died in a way she was helpless to do anything about, for some years afterwards felt incapable of being that mother and felt a failure as a human being. I’ve spoken to people all around Australia who, for many years later, still have PTSD because of what they’ve witnessed.
“I’ve spoken to families whose members have suicided. We’re talking really brutal suicides. People with terminal illnesses. A suicide of any nature leaves those left behind with guilt and questions and anguish, and that rarely diminishes over the years. So when I hear politicians, as they are in NSW right now, argue that we can’t pass these laws because people will be vulnerable, I think, ‘Well what about these vulnerable people?’. They flatly refuse to acknowledge or legislate about or help the genuinely vulnerable who are suffering because of the laws that we have.”
Australia’s Voluntary Assisted Dying laws are among the most conservative in the world. Victoria has 68 safeguards in place. When SA voted in support of a VAD bill, which it based on Victoria’s, it added more. Despite this, Jan and Andrew both fear that NSW may not follow suit – and those fears are well-founded. Attempts to pass VAD legislation in NSW failed in 2013 and 2017.
Premier Dominic Perrottet and Labor leader Chris Minns both oppose VAD. In November, the Premier said if the bill was passed, the state would cross a line. “If we pass this bill, the legacy of this Parliament will be to open a door that no one can close.”
The Premier described holding the hand of his 90-year-old grandmother, who was suffering with pancreatic cancer. “I could tell that she was in great pain and that she wanted it to be over,” he says. For him, the discussion is personal, not abstract; however, his solution was to offer “not death”, but “comfort and compassion”.
Perrottet, who is a devout and socially conservative Catholic, said many supporters of the bill are not dying or in pain themselves, but are afraid of what their later years may hold.
“They do not have confidence that they will have adequate care and relief … We owe it to every member of our community to put that care in place,” he said, adding that the lack of adequate care and pain relief was a failure of the government, and vowing to fix that. “A strong society protects and cherishes its most fragile members.”
Voluntary Assisted Dying will “not bring hope but hopelessness,” the Premier insisted. He outlined fears that safeguards would slowly be dismantled to allow greater access to VAD and that vulnerable people, particularly Indigenous Australians, would be at risk of coercion.
Andrew says the Premier’s framing of the issue was deceptive and paternalistic. Instead of engaging with the proposed Australian laws, the Premier spoke about overseas experiences including a proposal by the Dutch health minister that would extend assisted dying to adults over 70 “who simply consider their life complete”. This six-year-old proposal was never acted upon.
“It’s just a mis-statement to say these laws are unsafe and in some ways out of control. They’re widely supported and used by a very small number of people,” Andrew says.
On the subject of coercion, he adds: “There’s no evidence of that, but what there is strong evidence of is coercion in the other way, which is: ‘Please don’t. Don’t do this. We don’t want to lose you’.”
Victoria’s VAD review board, which ensures the laws are working as intended, gave evidence to the NSW Upper House committee, reporting that feedback from patients and families who used the service was “overwhelmingly positive”.
The inaugural chair of Victoria’s VAD review board, Betty King, wrote in her final report that she was proud that the Victorian law had provided an option of end-of-life care that was accessible and safe. She has seen what can happen when well-meaning family members decide to take the law into their own hands.
In 2012, she was Supreme Court Justice King, presiding over the case of Heinz Klinkermann, then 73, who had been caring for his terminally-ill wife Beryl for six years. Heinz was devoted to his wife and had turned their home in regional Victoria into a mini-hospital. Beryl had been diagnosed with dementia and Parkinson’s disease around 2005 and by August 2012 had deteriorated significantly. She was unable to chew or swallow and Heinz, who rarely left her side, decided to hasten her death.
He gave her sleeping pills, then took some pills himself, lay down next to her and held her hand so he “would not have to endure life without her”. In a final diary entry he wrote, “I can’t watch my Beryl slipping away anymore. I want to go with her.” His intention was for them both to die of carbon monoxide poisoning – but his plan failed.
When a district nurse arrived at 8am the next morning, she found the couple still alive. Beryl was transferred to a full-time palliative care centre and Heinz was charged with attempted murder. At the time, Justice King said, “It is clear that you adored your wife. That everything you did, you did because you genuinely believed it was the right and appropriate thing to do.”
Heinz pleaded guilty, but was not jailed. The law, however, prohibited him from ever seeing his wife again which, his legal counsel said, was “the worst punishment that could be made”.
Legacy of trauma
The windows of the Bronte cafe are wide open to allow the sea breeze into shift the humid air. Author, mother and company director Zoe Coyle has arrived, all tinkling gold jewellery and warm smiles, and ordered some tea. It is a scene at odds with a conversation about death, but the fact that VAD laws are back on the table in NSW gives hope to Zoe, whose life was cleaved in half 20 years ago when her mother chose to end her life and suffering, rather than endure a long and painful death. “She was a nurse. She knew that the trajectory of her illness was incredibly bleak,” Zoe explains.
Progressive supranuclear palsy attacks the brain cells and impairs brain and motor function. “You end up in a high dependency unit – unable to open your eyes, unable to swallow – for years,” says Zoe.
“She told us very early on that, when the time came, she would take matters into her own hands. I felt terrified, but immense respect for that. It was also utterly surreal because the idea of the person that you came from, that you absolutely adore, that there was going to be, at some time in the future …” She breaks off.
“And would she tell me?” adds Zoe, who was in her 20s and living overseas at the time. “Would there be a goodbye? Or would it just be a phone call from a relative?”
Zoe is still heartbroken that Australian law prevented her from being with her mother in her final hours two decades ago.
“My mother was like most mothers, I assume, in that she wanted to protect us,” she says. “She euthanised herself over 20 years ago, so it wasn’t legal to do so. Because of the legal ramifications, I couldn’t be with her. The laws were just very, very clear. We all knew that was what she wanted to do.”
WATCH: 81-year-old calls ‘bullsh-t’ during Q&A debate on euthanasia. Story continues after video.
Zoe says after her mother died, the grief was “all-consuming” and incredibly lonely. She is hopeful that the NSW Legislative Council will vote in favour of the VAD bill, and that nobody will have to endure what she and her family went through again.
“I absolutely adored my mother, and I still feel peculiar putting that in the past tense because the love feels very present and very active,” Zoe says.
She believes that she was robbed of the opportunity to say goodbye and her grief was “tainted by what felt like a terrible injustice. I’d prided myself on the fact that I would always go all the way for love, and then I wasn’t allowed.”
Of her grief, she says: “There was definitely a 10-year span of it, and most of it was defined by the shame I felt in not being able to be the person I wanted to be to take care of her when she deserved to be taken care of … My experience of grief in my 20s was that I was irrevocably broken and I was never going to be whole again.”
Zoe poured that grief into a novel Where the Light Gets In, published last month by Ultimo Press. And in the intervening years she lost her father, too, though his death was a very different experience.
“He had Parkinson’s disease and he was a doctor, and he chose to fight on and fight hard, and hold on and hold on and hold on,” she says.
Zoe says she is proud of both of them. The key, she emphasises, is individual choice.
“My own experience is that there’s a reckoning that needs to happen around the loss. For me, the reckoning around the fact that I couldn’t be with her when she died was almost insurmountable. It felt deeply personal and excruciating. Torturous and inhuman.”
Opponents of the current NSW bill say VAD represents a dangerous departure from the general social principle of counselling people against ending their life, and fear the laws send the message “that suicide can be a peaceful, beautiful thing and a wise choice”.
Zoe says: “The person who chooses suicide wants to end their life, the person who chooses assisted dying wants to end their suffering. That was my mother’s story and I believe in her right, but it wasn’t afforded her.”
“Please let’s never go back to the days,” Andrew adds, “when people have to starve or dehydrate themselves to death or take their own lives because they can’t have the conversation, no one can help them.”
Advocates insist that VAD legislation, with appropriate safeguards, would reduce harm, suffering and anguish both for those who are dying and those they leave behind.
“That’s why I’m incredibly excited about the movement that’s happening in Australia now,” says Zoe. “It is a very nuanced, complicated issue, but I feel that, for people who are appropriately vetted, it is a gift and a loving act to support them.”
You can read this story and many others in the May issue of The Australian Women’s Weekly – on sale now