It was in the living room of her Northwood home – a carpeted room where I built LEGO empires as a child – that Marie Chalmers sat down one night with an unusually expensive bottle of wine. The rest of the family had gone out to dinner, but her heavy breathing meant leaving the house was now impossible for the Hungarian born pharmacist. Having spent most of her life travelling, Marie’s world had tightened around her as emphysema wore down her lungs. As the disease worsened she lost the ability to travel, and eventually could no longer walk up or down the stairs in her house. In the last six months, even sitting and reading became a difficult exercise. For a woman defined by her intelligence and independence, the restriction of her personal autonomy, exacerbated by the disease’s painful effects, was distressing. So when her family left the house Marie stayed back, attended only by the bottle of wine. Sitting in an oversized leather seat, she removed the tubes delivering oxygen to her lungs. It was a decision that must have been planned but which could not be disclosed without exposing loved ones to risk. That night, while the rest of her family shared a meal together, Marie died alone.
It would be wrong to record this event with a tone overwhelmed by tragedy and my grandmother certainly did not view her death in such a light. To her, the decision was a positive course of action, and her ability to take such action improved the quality of her life during its final weeks. But the fact remains that because of Australian law, Marie was barred from spending her final hours in the company of those she loved and was denied a safe method of euthanasia. After more than a decade and a half of setbacks to euthanasia reform, her story is not an isolated case.
The euthanasia debate is not new to Australia, nor was it when my grandmother died in 2002. In 1995 a Country Liberal Party Chief Minister introduced a bill to the Northern Territory parliament that would eventually be passed as the Rights of the Terminally Ill Act. The law allowed patients enduring an illness that would lead to their death “in the normal course” to request a medical practitioner assist them end their life. A year later the Howard Government used its federal power to repeal the law, an end it accomplished in 1997.
Since then, euthanasia laws have slowly been embraced elsewhere around the world. Belgium, the Netherlands, Luxemburg, and Switzerland, as well as the US states of Oregon, Washington, Vermont, and Montana all allow varying degrees of access to end of life drugs and physician assisted suicide. Canada and New Zealand are moving in the same direction.
While calls for euthanasia reform remain popular, public enthusiasm has waned in recent years
As other countries overturn precedents and redraft laws, Australia remains static. In NSW, aiding and abetting another person’s suicide can result in a gaol sentences of up to ten years. Depending on circumstances, those who do so may also end up with a charge of manslaughter or murder. In May this year Greens MLC Cate Faehrmann’s bill, similar in intent to the one passed in the NT, failed to win majority support in NSW’s Legislative Council. A bill being debated in Tasmania now also looks set to be defeated.
While calls for euthanasia reform remain popular, public enthusiasm has waned in recent years. A 2009 Newspoll found 85% support for voluntary euthanasia, while an Australian Institute study in 2012 put the number at just 70%. A closer look at the surveys shows those actively opposed to euthanasia rose only marginally, from 10% to 12%. It is the undecideds who have increased – just 5% were unsure in 2009 compared to 17% three years later. According to Australian Institute executive director Richard Denniss, this is particularly true of young Australians, who have disengaged from the issue. The shift is palpable on the ground. When the anti-abortion, anti-euthanasia society LifeChoice emerged at the University of Sydney it provoked the formation of a new feminist society (‘FemSoc’) but the idea of a Union backed pro-euthanasia group never got so much as a mention. Euthanasia remains a distant concern for young people; they don’t need it personally and are unlikely to have contact with anyone who does. This is exacerbated by the sense of inevitability associated with euthanasia reform. With a steady stream of bills flowing before parliaments around the country it seems like it can only be a matter of time until the right to die is enshrined in law. Why waste energy campaigning on an issue that remains likely to be resolved in the near future when our atmosphere has reached 400 parts per million of carbon dioxide and our government wants to use the navy to repel refugees? Surely there are more pressing problems at hand.
But the failure to achieve immediate euthanasia reform means more than a tolerable delay of the inevitable – it means prolonging the very real suffering of many. The interest of the young might be fading but in the wake of legislative setbacks elderly Australians, who make up the overwhelming majority of those seeking euthanasia services, are turning to alternative measures and becoming increasingly desperate.
On July 5 2009, Eva Griffith, a 78 -year-old living in Ashfield and diagnosed with osteoporosis, took a large dose of antidepressant and pain relieving drug amitriptyline with the intention of ending her life. Griffith was afraid of ending up in a nursing home in an untreatable and degrading condition, where she would lose control – a common concern raised by those considering euthanasia options. For Griffith, this fear was twofold; being placed in a nursing home would limit her personal liberty generally, but it would also deny her the ability to end her life in the future. As her situation deteriorated, as her pain increased, she would be forced to endure.
Denied the right to ask for assistance from a medical professional, Griffith’s attempt to end her life failed and she fell into a heavy sleep. Her partner David Mathers later told police that every time Griffith moved, she would cry out in pain. Cognisant of his partner’s wishes, distressed by her suffering, Mathers provided Griffith with 13 more tablets, but again the overdose failed. A copy of the Supreme Court ruling describes what happened next. “[Mathers] said she was still breathing but he did not think that she was conscious. He said he tried to suffocate her with a pillow and she seemed to be getting air from somewhere. He then tried a towel and putting pressure on the airways, the mouth and nostrils and then he used a plastic bag.”
There was no question about Mathers’ motives. The presiding judge commented that, “the evidence uniformly establishes that Mr Mathers and Ms Griffith were devoted to one another and that the only motivation in assisting Ms Griffith’s bringing her life to an end was a selfless act borne out of love”. The pair had met at a dance class twenty two years earlier. Despite this finding, Mathers was convicted of manslaughter and handed a suspended sentence. He escaped gaol, but not before having to watch his partner slowly die, serve twenty days in custody, and then recount the ordeal to police and the press.
The Mathers case exposes the consequences of denying carefully regulated euthanasia services, advice, and drugs to those who have decided they want to die. Often with the help of family and friends, people are finding ways around the laws, or simply ignoring them entirely. Alternatives that do not put family or friends at risk of litigation are bleak – 56.2% of successful suicide attempts in 2010 were by hanging. Dr Philip Nitschke, who assisted four patients die while the Northern Territory laws were in place and has been the most visible advocate for the euthanasia movement since, says elderly Australians are part of this statistic. “It’s a grim and horrible death, but no other method comes close to it [in terms of effectiveness] and that’s really a consequence of the legislation that prevents the ready access of good information and good methods.” Nitschke’s co-authored book The Peaceful Pill Handbook outlines methods of euthanasia and explains where to source the materials but is banned in Australia. In 2009 Wikileaks revealed that Stephen Conroy’s proposed internet filter, marketed almost exclusively as an anti-child pornography device, would also prevent access to a site hosting downloads of the book.
Unperturbed, hundreds of seniors gather in local halls across the country at Nitschke’s legally ambiguous euthanasia workshops. The best option, he advises, is Nembutal, a fatal barbiturate once brought in from Mexico but increasingly sourced from China. When mixed into a liquid solution, the drug quickly reduces the consumer to sleep and soon after they are dead. Nitschke says there has never been as much of the drug coming into the country as there is now. He should know: he offers a service testing the purity of the drugs people have imported to help them ensure they have not been duped. Nitschke estimates the average age of patients at his seminars is about 75. Many are healthy octogenarians who have no immediate wish to die but would like something locked away in a cupboard as insurance, should they need it at a later time when disease or physical deterioration prevents them from being able to acquire drugs.
Sixty-four-year-old Loredana Mulhall has already reached this stage. Suffering multiple sclerosis, her abilities have been severely curtailed. “My quality of life has changed so much that I am unable, basically, to go out. I can not use my body [or] hands, I cannot walk of course. I cannot even feed myself,” she says, speaking on the phone from her Pyrmont home. Mulhall delivers her words slowly and deliberately, determined not to waste the significant effort required to voice them. Having many decades ago majored in Italian at the University of Sydney, she has spent recent years advocating for euthanasia reform.
Mulhall is not yet ready to die, but her situation is deteriorating rapidly and she would like to end her life soon. She hasn’t tried to buy Nembutal. “I haven’t because I would have to ask somebody to do it for me, because I cannot use my hands; I cannot write, I cannot ring.”
Anxious about being paralysed in a state of great pain, Mulhall says denying her access to life ending drugs is accelerating her suffering.
“There is no way at the moment that I can kill myself or ask someone else to do it. I’m scared, I’m afraid. If I was allowed to use those drugs, if somebody could do it, then I would relax and I would be able to feel at ease… I might even live longer.”
Adamant that she won’t put loved ones at risk by asking them for assistance, she has been left in a difficult situation. Even if she can acquire the drugs, she doesn’t want to find herself in a similar situation to the one my grandmother did in 2002. “At the moment I would have to die alone, very friendless, and so isolated, which would be terrible. But I can’t do it anyway because somehow, I’ve got to get somebody to help me. So I’m really between a rock and a hard place.”
Since the overturning of the NT laws, euthanasia has been consigned to ethical and legal limbo, cushioned between the illegality of the act and its ongoing practice. Contradictions abound. It is legal to kill yourself, but illegal to be provided assistance in doing so. A doctor can also let a patient die, so long as they have a signed Advance Care Directive ordering them not to treat the patient in certain situations. NSW common law also tolerates the ‘doctrine of double effect’, whereby doctors are allowed to increase a patient’s dosage of a pain relieving drug, even in cases where such a move is likely to lead to death. There is evidence suggesting that up to 30% of the time doctors are using this technique to help ease the passing of terminally ill patients. In practice you are allowed to be assisted in dying, but only in a particular set of circumstances. The same dual standard is practiced on the side of enforcement. According to a Lateline investigation, police are intercepting large amounts of Nembutal coming into Australia, but those seizures are not resulting in arrests. In court it is admitted that ethical considerations for euthanasia should mitigate the punishment of people like David Mathers, though they must still be convicted of a serious criminal offense. Philip Nitschke can not provide you with Nembutal, but you can buy a cylinder of nitrogen gas from his home brewing company ‘Max Dog Brewing’ which, as coincidence would have it, can be converted into a convenient end of life device.
These discrepancies add up to a system that will more or less let you take your own life but ensures you do so in the most dangerous, uncomfortable, and protracted way. It embraces the idea that euthanasia is not inherently wrong, but is sustained by our fear of recognising that principle in binding legislation. We’re trying to have it both ways: leaving just enough room for people to take their own lives but refusing to make moral or political commitments to legislation that sets out clear safeguards.
It was not until I had a personal point of contact with the euthanasia debate that the problems with this status quo sunk in fully. I had always supported an individual’s right to die but the belief had been kept ostracised from my core social and political values. It was a view I held lightly and advocated infrequently, if ever. That changed after a conversation with my father earlier in the year, when I learnt that Marie Chalmers had not died of natural causes. It’s this personal connection that motivates those younger campaigners lobbying for reform.
Corey McCann, a 25-year-old Canberra schoolteacher and Secretary of the Voluntary Euthanasia Party, is a good example. “Like almost everybody else who is involved in the issue and is active in campaigning for it, like a lot in the broader community, I have had a personal experience with the issue,” McCann tells me. Seeing his grandfather struggle through dementia and cancer gave him the emotional impetus to get working on the issue. Nitschke credits him as the major force behind the VEP’s recent registration at the federal election, an effort designed to promote discussion of the issue nationally, but also undertaken with the hope of eventually snaring a senate seat and pushing for change inside the parliament.
When viewed through the lens of personal experience, euthanasia no longer looks like a tokenistic civil right. By continuing to prevent the passage of euthanasia legislation we are all – including legislators, doctors, and citizens – participating in a joint decision. We have decided Loredana’s fear is acceptable and that her anguish must be tolerated. We have decided it was better for Eva Griffith to drift between comatose and agonisingly painful consciousness for three days than be granted a humane death. And we have decided it was better for my grandmother to die alone in her Northwood home than to share her last moments with her family and say a final goodbye on her own terms.