Breaking the law to force euthanasia debate
Steve Guest was a funny, wry bugger, according to Dr Rodney Syme. Very intelligent, a fan of music, the father of twin daughters. But he was dying painfully from oesophageal cancer. He was 58.
Guest hadn’t eaten food for six months when Syme met him. Morphine quelled some of the pain, but it caused nausea and severe constipation, and Guest was being nourished through a stomach tube.
Syme spoke with Guest many times, walking him through his options. They talked for hours – about many things, but mostly about death and dying. For Guest, it wasn’t death that was the problem – it was how he got there. “He had thought deeply about what he wanted to do. I told him he could have palliative care, and told him what they’d do. And he told me, ‘I want to control what happens to me.’”
Despite the extraordinary physical pain, Syme wrote that Guest’s “major suffering was his psychological and existential suffering due to lack of control over the end of his life”.
Not long before Guest’s death, he recorded a speech to be played at a euthanasia conference he was too sick to attend. It was played five days before he died, in 2005. On the recording, Guest’s voice is leathery – tired but impassioned. He told a story about his fox terrier Jack – “a gorgeous little bloke” – who fell incurably ill. Guest explained how he had brought out a cushion to his backyard for Jack to lie on and, “surrounded by his family, the voices he loved, and the smells of those he loved, and their hands on him”, he was given a lethal injection. It caused Guest great anxiety that he would be denied the same treatment as his dog.
I meet Syme at his local pub. It’s lunchtime, and quiet, and we order drinks and take them to a corner. Syme is 78. He has short white hair, a white beard and a pleasant intensity. He was a urologist for decades, was once a surgeon, and is the vice-president of Dying With Dignity. This week, and not for the first time, Syme started a high-stakes game of chicken with the justice system by admitting he had supplied Guest with Nembutal, a powerful barbiturate that can bring about death within an hour. He all but begged the Victorian homicide squad to arrest him. “I’ve been an iconoclast all my life,” he tells me. “I’ve enjoyed having a tilt at the bastards.”
Doctors acting in secret
Syme’s advocacy for euthanasia – and he doesn’t like the term, because “you think of animals when you say it” – dates back decades. In 1972 he had a patient with kidney cancer, which had spread to her spine. Her spine then collapsed.
“She had neuropathic pain, which means her nerves were compressed, and it’s the worst pain you can get. She was partly paralysed in the legs. She was in my care in hospital and it was one of the first times I’d been exposed to such a terrible situation. She had the most awful pain. I would visit her – she was on the first floor – and I’d enter by the foyer. And I could hear her screaming as I entered the hospital. I had to steel myself to go visit her because it was so painful. She never asked me for help to die. But I came to the conclusion that without a shadow of a doubt, if I was in her situation I would have ended my own life to end that pain.
“That’s when I first thought about this as an issue. And I thought, ‘Well, that’s just me – as a doctor, I have access to drugs and I could escape that predicament.’ But what about others? What access do they have? They should have this escape route. And I began thinking deeply about it, and thought that people should have the right to end their life. I read a lot of bioethical literature, but as a urologist I didn’t have much access to this type of suffering. It wasn’t again until I saw Jack Kevorkian speak in Australia that I began writing about this.”
In 1987, Syme wrote an article on the right to die for a medical journal, and a letter of his was published in The Age. Then strangers began writing to him asking for help. “It’s the bad doctors who aren’t interested in this. There’s too much time and care and emotion involved.”
In the early days, when Syme began privately consulting terminal patients, he was anxious about being monitored. He used public payphones to contact patients, fearing his phone was tapped, and parked his car blocks away from their homes when he visited. It’s grimly amusing, because these days his fear is the opposite – that the authorities aren’t interested in policing the regulatory and ethical fog of palliative care. “A benign conspiracy of silence,” he calls it. This conspiracy comprises a legion of doctors sanctioned by only their conscience, secretly aiding the dying and being neither prosecuted nor protected by the law.
During Syme’s consultations with patients, of which, according to him, there have been probably thousands, he says he has never administered any drug. “I have a dialogue with the person. And they come to me. I don’t approach people. I talk in depth with them. I establish what’s causing them distress. I establish their state of mind. Are they rational? What is the state of their suffering? And it’s amazing by just that support how much the anxiety reduces. And just the possession – or the access– to a drug is a very powerful palliative. It’s amazing how much that eases suffering, knowing you have an exit. I call it the key to the fire escape. There’s a lot of published medical opinion that supports this. That was the case with Steve Guest. It rejuvenated him. He was dying rapidly, but for a fortnight a new man emerged as he found a purpose. His body language changed, whereas before he was crushed.”
What rejuvenated Guest was the mere possibility of Nembutal – the simple fact it was there, that he would be in control of ending his suffering.
NT's short-lived legislation
The Northern Territory’s Rights of the Terminally Ill Act had existed for only a few months when Bob Dent went quietly into his Darwin backyard and, using an injection administered by a laptop, ended his life. The final things he wanted in this world were a ham sandwich, a glass of stout, and the company of his wife – and to enjoy these few, final things at home. Dent was 66, once a carpenter, and suffering debilitating and incurable prostate cancer. It was September 22, 1996. His death made history.
It’s strange to think now, but for a short time the Northern Territory was the global vanguard of euthanasia laws – the first jurisdiction in the world to explicitly sanction it, as opposed to the Netherlands where it was simply decriminalised, and the US state of Oregon, where physician-assisted suicide was decriminalised. The legislation that gave Dent’s death its quiet dignity was made possible by the rare and dogged will of then chief minister Marshall Perron, but was quickly undone by the will of the federal government.
In 1997, Kevin Andrews introduced a bill for the law’s repeal and the government, exercising its delegated powers over the Northern Territory’s legislative assembly, removed the territory’s right to pass laws legalising euthanasia. The act was now void and it realised Bob Dent’s fear. In an open letter, dictated to his wife the day before he died, Dent wrote that he expected Canberra to expunge “the most compassionate piece of legislation in the world”. And so it was.
While drafting the bill, Perron travelled to Melbourne to consult the Voluntary Euthanasia Society. It had already drafted a notional bill and was happy to guide Perron’s. One of the members was the philosopher Peter Singer. Another was Dr Rodney Syme.
Public admission of crime
Syme’s admission this week to providing Steve Guest with Nembutal triggered splashy headlines and obliged Victoria Police to reopen a case they didn’t really want to investigate the first time. But there is something unusual here – something ignored by the headlines and that underscores the awkward unwillingness for authorities to prosecute these cases. The unusual thing is this: Syme had already made almost the same admission in his 2008 book A Good Death.
In that publication he had not gone so far as to state the exact drug he provided, but he had written that he had consulted Guest and procured him a drug. Meanwhile, the coroner’s toxicology report had already determined that Guest’s death was caused by Nembutal. So well before this week, investigators had enough to charge Syme with “aiding and abetting suicide”, and most probably for the possession and distribution of a controlled substance. He was not charged then and, he tells me, doesn’t expect to be now. “When police interviewed me after the coroner’s report, they were basically apologetic. I got the feeling they didn’t want to be interviewing me.”
But this week, if it wasn’t already obvious, Syme spelt it out. He had given Nembutal to Guest. Guest had taken it. Guest died. Syme was calling out the “system” – politicians, police, the Director of Public Prosecutions – on their silence, on the unspoken agreement to keep it quiet. It’s a spectacular gamble, least of all because he could be imprisoned. Syme is risking the status quo, the benign conspiracy. While his gamble is that his latest admission will hasten euthanasia laws, or at least embarrassingly expose political timidity, I asked him if it didn’t also risk jeopardising the secret, semi-workable compromise that currently exists. In other words, by lifting the lid, weren’t GPs like him going to be exposed to prosecution?
“I don’t think so,” he says. “I’m sure politicians are aware what the public feel about this issue, and if they were to adopt a punitive regime, all hell would break loose. And if they threaten to be more aggressive, they’ll face more challenges. More examples like Steve Guest. More people who had assistance in circumstances the public would support.”
The people want this. Many polls show public support for euthanasia consistently above 70 per cent. But the issue terrifies politicians. When visited by grotesque and permanent maladies, we cannot choose the time, place and manner of our deaths. In the wilful fog of assisted suicide – in the weird contingencies of don’t ask, don’t tell – families are anxious about even being bedside to assisted deaths, fearing it is illegal. The government might be absent, but for its participation in the benign conspiracy, and in its shadows we have created the equivalent of backyard abortions. By scaring away families, and encouraging people to die alone, we have created something unnecessarily obscene.
When A Good Death was published, the bioethicist Nicholas Tonti-Filippini, himself suffering a terminal heart condition, condemned Syme because “I’m costing the health care system somewhere around $90,000 to $100,000 a year to sustain me, and in those circumstances, I feel I’m a huge burden. If voluntary euthanasia existed, that would increase the sense of being a burden and it would increase the pressure on me to take that option.”
It’s a strange and sceptical paternalism that can envisage the scenario where those who wish to live believe the cost of their staying alive justifies their death. Stranger to think that the psychological vetting required before euthanasia under any sane legislation – and demanded by Marshall Perron’s bill – would not detect and counsel these thoughts. Easier to imagine, especially if you’ve seen it, is the unholy debilitation and surrender of dignity that accompanies certain illnesses. Easier again to imagine the countless individuals who want the power to make one final, vital decision.
One of the curious things of Australian life is watching how far the Liberal Party can swim from liberalism. One of liberalism’s tenets is the primacy of the individual, and so let’s regard it: I can think of nothing more resonantly, irrevocably intimate, nothing so obviously belonging to the individual, than the decision to end your own suffering.
Syme isn’t hopeful that change will come through parliament, which is why he’s happy to be taken to court to force a precedent there. “There’s two aspects to the opposition. The opposition to legislative change comes from the Catholic hierarchy. Not the Catholics on the street, but the hierarchy. And not even from other churches; they’re more ambivalent. But [the Catholic Church is] well organised, well financed, and exercises significant political pressure. It was behind the repeal of the NT legislation. And I think politicians are scared of that influence, especially if you’re in a marginal seat. The second thing is that the parliamentary debate isn’t very good. They’re very, very busy people. Look at the debate when Marshall Perron’s bill was knocked over. It was drivel. They did not understand the issues. They were influenced by fear. It was FUD. Fear, uncertainty and doubt.”
We will have to wait and see if the authorities take up Syme’s audacious challenge. Dr Syme himself remains doubtful.
This article was first published in the print edition of The Saturday Paper on May 3, 2014 as "Daring the law for the right to die". Subscribe here.