A curry to die for

A majority of Australians support voluntary euthanasia, but the family and doctors of the terminally ill are prohibited from helping them find a peaceful end

A curry to die for. Art: Gillian Kayrooz

“It might be okay for you, but it’s not okay for me.”

In late 2008, Robert Cordover was diagnosed with motor neurone disease (MND). The illness was not unfamiliar to Robert, who watched his own mother die from it during the 1980s.

“He knew about what motor neurone disease was,” says Gideon Cordover, the youngest of Robert’s five children. “And for him, what that meant was a death sentence.”

MND is a vicious illness, typically killing its victims through suffocation – either by respiratory failure or choking on their own saliva as the valve between their esophagus and the windpipe loses strength.

Robert discovered he was suffering from MND when he woke one morning to find he couldn’t speak properly.

“His words just all garbled together,” says Gideon. “For a guy who had travelled around the world, spoke half a dozen languages and was always communicating, that was a real kick in the teeth.

“Overnight, it changed his whole capacity to enjoy life.”

Over the next six months, Robert’s condition deteriorated rapidly. Gideon witnessed his father endure all of the anguish that the disease had to offer.

“The thing that was frustrating him the most was not so much the physical pain – although there was a lot of that.

“It was more that existential suffering of not being able to hold up a book or turn the pages, not being able to hug your children, not being able to talk and share a joke.”

“That’s a kind of suffering that no amount of palliative care can fix.”

Robert began to search for ways to end his life on his own terms. His wife discovered notebooks and email exchanges that revealed Robert, with no legal alternative, had been searching for ways to commit “violent suicide”.

“The reality was that there was no way out, he was definitely going to die,” says Gideon. “And I’m sure that in his head the choice was to have either a slow death or a fast death.”

While Robert searched for other options, communication with his family deteriorated as he was forced to keep the information to himself.

Australian law currently forbids the voluntary euthanasia or assisted death of a terminally ill person by another. Any help that Robert requested of his family would legally have been termed ‘assisting a suicide’.

In the Cordovers’ home state of Tasmania, that act carries a penalty of up to 14 years in prison.

“He was deliberately hiding his search for assisted death from us because of the fear that we’d be implicated,” says Gideon.

“Rather than being able to have an open, candid conversation with his doctor and with us, he just kind of hid himself away in the study searching methods to kill himself.

“I can only imagine how isolating that must be for someone.”

While the fear of incriminating his family prevented conversation about euthanasia, Robert’s condition continued to worsen until Gideon had what he calls a “crystalline” moment of understanding.

“He was unable to tie his shoes anymore, his hands weren’t dexterous enough. So I was helping him to put on his shoes, and in a kind of trite way I’d said ‘Thanks for letting me do this, I really appreciate that I can tie your shoes, because I remember you tying mine.’

“And he kind of smiled and nodded. But later, he wrote on a piece of paper: It might be okay for you, but it’s not okay for me.

“It was so clear, in that moment, that this wasn’t about me. For all that I wanted him to live forever, I don’t wish that he was living through that.

“What he was going through was too much for anyone to have to live through.”

Art: Gillian Kayrooz
Art: Gillian Kayrooz

“Is this the weekend?”

After Robert’s family had gradually come to terms with his wish for death by voluntary euthanasia, he was met with a challenge that thousands of other terminally ill Australians face: finding a doctor who would help to end his life.

“The search for assisted dying was so fraught with difficulty because all of the doctors that he initially approached turned him away,” says Gideon. “There was clearly a fear among all of them that they would be implicated, put in prison, or lose their license.”

Gideon says that within each meeting during which a doctor would refuse Robert an assisted death, there seemed to be an underlying “word game” at play in the conversation.

“In the same breath that they said ‘We can’t talk to you about this’ they would also say ‘Don’t worry, when the end comes, we can look after you.’ And it took a lot of prying to figure out what they meant by that.”

What the doctors were referring to was ‘terminal sedation’, a process that places a patient’s body in an induced coma, allowing it to starve to death.

“That is not an ideal situation for the family who are having to witness their loved one wither away,” says Gideon. “The whole medical establishment’s raison d’être is to minimise harm to the patient, but that’s clearly doing harm if the patient doesn’t want it.”

Dr. Christopher Ryan, an Associate Clinical Professor at the University of Sydney, agrees that the prohibition of open communication between doctors and their dying patients could have serious consequences.

“The reality is that voluntary euthanasia happens now,” he says. “But because it’s illegal and carries such serious penalties, everything happens in a clandestine way. I think there’s quite a bit of nodding and winking going on.

“I think it’s a dangerous thing. We’re in a situation now where nothing is regulated, and no one is protected.”

Robert eventually found a sympathetic practitioner who gave him the necessary medication, a barbiturate known as Nembutal. However, he was then forced to smuggle the drug back to his home under fear of imprisonment.

As the doctor was not legally able to knowingly administer any medication that would cause his death, Robert’s only choice was to take Nembutal without any medical supervision.

According to The Peaceful Pill Handbook, by prominent euthanasia advocate Dr. Phillip Nitschke, there is a significant risk in taking barbiturates of an unknown potency.

A Nembutal sample with a concentration of less than 93 per cent may not cause death, but can potentially cause permanent cognitive and physical impairment.

Despite this risk, Gideon says that once Robert had a hold of the Nembutal he began to become more like his old self once again.

“His attitude completely changed,” says Gideon. “He was more positive, more productive. He was able to laugh again, and he was hanging out with us rather than having to lock himself away.”

With Robert’s renewed happiness came the difficult conversation about when exactly he would choose to die.

“He was clearly long past the time that he had wanted to end his life,” says Gideon.

“The only thing that was holding him back was his love for us. We really needed to give him that consent. It was so important to him that we were okay with it.”

A sense of urgency was brought on by Robert’s rapidly deteriorating condition. As his muscle control continued to worsen, he did not have long until he would lose the capacity to swallow the medication himself.

“Nobody was allowed to help him because they’d go to prison,” says Gideon. “He was going to put the medication in some food and then eat it. So, if he couldn’t hold a spoon and move his arm from the bowl to his mouth, well, game over.”

Shayne Higson, leader of the Voluntary Euthanasia Party of New South Wales, says that the criminalisation of assisted dying in Australia ensures the continued existence of cases like Robert’s.

Having lost her own mother to an aggressive form of brain cancer in 2012, Higson understands the pain of watching a loved one suffer through an incurable illness when they are given no other choice.

“Even the best palliative care cannot guarantee that people won’t suffer,” she says. “And I think it’s cruel and inhumane to force someone to endure unrelievable suffering.

“Surely a compassionate society can offer a better choice, or a choice.”

Faced with the fear of losing Robert, the Cordover family could not help but ask him to “just hold off”. But his worsening condition meant that the window of opportunity was quickly closing, and his pain was growing by the day.

“I remember, my dad had written down ‘Is this the weekend?’ on some paper,” says Gideon. “And I remember my mum scrunching it up, throwing it away and saying, ‘no, it’s not the weekend.’

“That was another moment that kind of stays with a person for life.

“Each day was worse than the last and it was also clearly quite intolerable for him, and had been intolerable for some time… and we recognised that.”

A curry to die for. Art: Gillian Kayrooz
Art: Gillian Kayrooz

“Curry to die for.”

Sensing his family’s unspoken approval, Robert came to a decision on the date he would end his life.

On the morning of June 21, 2009, he took the first of the antiemetics prescribed to him to ensure that, once taken, the Nembutal would not come back up.

“There was no trial run,” says Gideon. “As soon as you take that first anti-throwing-up pill, today had to be the day.”

Gideon says he was amazed at his father’s state of pure calm throughout the day.

“I think he could tell that we had come around, that the family was there… that there was love between everybody and nobody begrudged him for making that choice,” he says.

Knowing it was the last time they would be together, the Cordovers spent the day soaking up every moment they had left. They worked in the garden, collected firewood, and made a big lunch while Gideon’s mother played the piano.

“We all knew how significant it would be without him, how much everything would change,” says Gideon.  “And so I guess we really savoured it, like a nice meal, you really enjoy each delicate moment.”

Earlier that day, Robert had prepared a curry – since the viscosity would be  just right for his weakened throat muscles – and slipped the Nembutal inside.

As the day came to a close, the family followed Robert into his bedroom and surrounded the bed where he lay, gripping each other’s hands. His bowl of curry sat by the bedside.

“It was such a surreal moment. He really didn’t give us a chance to question it or to say, ‘Hold on, are we really doing this?’ He just started eating.”

Robert finished the entire bowl in minutes, with what Gideon can only describe as pure “determination”.

“As soon as he [finished] he kind of gave us this little salute. And he actually had a smile, like a proper smile, you know?

“He’d done it. He’d got to the end, and he was so clearly thrilled about it.”

With a final wave, blowing a kiss to his family as best he could, Robert laid back in his bed and fell into a peaceful sleep.

It was only later in the night, after his passing, that the family discovered the final note that Robert had ever written lying beside him:

“This is curry to die for.”

“This guy was such a joker all the way to the end,” says Gideon.

“He took this huge step with such good humour and grace and silliness and wit… that kind of encapsulates his whole life. He was such an amazing, dynamic, fun guy.”

Following his father’s death, Gideon went on to take the role of Party Secretary for the Voluntary Euthanasia Party and work closely with law reform organisation Dying With Dignity.

Gideon says that his work had exposed him to countless stories like his family’s.

“I had the pleasure of coming across many stories that shared that same kind of message of love, support, happiness, and equally as many stories, if not more, of devastation, fear, anger, sadness, isolation.

“And it’s so clear to me that if you have reasonable laws that protect the vulnerable, but also give choice… it’s the sensible public policy. It would reduce so much harm.”

According to Higson, the Voluntary Euthanasia Party supports a law with strict guidelines that allows terminally ill individuals to have a medically assisted death. However, current push back from conservative groups is preventing the formation of a safe euthanasia policy.

“Repeated polling over 25 years has consistently reported overwhelming support for the legalisation of voluntary assisted dying. Between 75 and 83 per cent of Australians are in favour,” says Higson.

“There’s no other social issue that has such strong support, so it’s very surprising that our politicians are not taking notice of that.”

Gideon is a strong advocate for the legalisation of euthanasia. He says that his experience, though difficult, was ultimately a positive one, and only wishes that more families were given the same chance.

“The only negative thing about what happened with my dad is the fact that he had to jump through so many hoops and do everything himself, that he wasn’t facilitated and supported by the society in which he lived.

“He got the death that he wanted. And if I was ever in that situation I’d want just what he wanted, so I’m really proud of him.”

Gideon says that he believes the allowance of euthanasia is the only “logical” choice in the face of “so much needless suffering”.

“If we would show more care and more understanding to a dog that’s in pain than we would to a human, you really have to start questioning your leaders.

“I just think that the change in law is long overdue.”