Time to Die
Death is increasingly welcome in our society. There are lives heartbreakingly cut short in their prime by crime, sudden illness and accident. But for the majority of us, drifting into pain and indignity, the words about our deaths are likely to be “merciful”, “relief” or “deliverance”.
It’s a longevity thing. During the 20th century, life expectancy in Australia rose from about age 50 to 80. Cancer was the cause of only 5 per cent of deaths in 1900; now it’s the leading cause at 30 per cent. Alzheimer’s was first diagnosed in 1906; now it’s the third leading cause of death. Antibiotics beat pneumonia, “the old person’s friend”.
“The change in the way we die is the most fundamental reason for both the rise of palliative care and the demand for assisted dying,” points out Rodney Syme, a Melbourne urologist who was unable to walk away from the agony of patients in extremis. In 1975 he helped one with a morphine dose that resulted in death two hours later.
Over the years, Syme became known as an advocate and aide in assisted dying, leading the Dying With Dignity movement in Victoria. In 2014 he decided to “come out of my trench” and expose himself to hostile fire by admitting to giving a patient a lethal dose of Nembutal, an act that could potentially bring a charge of aiding and abetting suicide (punishable by up to five years’ jail in Victoria) or even murder. The police did not react.
Is the problem solving itself then? In 1992, Penguin Australia published Final Exit by Derek Humphry of the United States-based Hemlock Society as a “Category One” restricted publication, not for under 18s. (Admittedly it includes details on the number of commonly prescribed sleeping pills needed for death.) Syme’s 2008 book A Good Death was freely circulated, the cause taken up by broadcaster Andrew Denton and others. In 1997, the Howard government nullified the Northern Territory’s 1995 Rights of the Terminally Ill Act. Now a parliamentary committee in Victoria has recommended a law to allow assisted dying. Private member’s bills are pending in other states, and Labor in Western Australia has pledged to legalise assisted dying if it wins the March 11 state election.
Even without these changes, Syme points to a “benign conspiracy” among police, prosecutors and coroners not to press charges against doctors who help their patients out with an overdose. Palliative care offers the advanced terminally ill a place to die in sympathetic surroundings, with their pain alleviated. What is known as “terminal sedation” – pharmaceutical oblivion while hydration is stopped – is effectively slow euthanasia.
Yet the status quo is not good enough, Syme argues with quiet passion and many case studies. He is appealing conditions the Medical Board of Australia placed on his licence to practise after the ABC’s Australian Story showed one of his interventions with Nembutal. Two years ago, the Royal Australasian College of Physicians withdrew its invitation for him to speak at its conference after complaints by unnamed members.
In particular, Syme contests the widely held notion that palliative care offers a painless way out. Opioids reach a “saturation point” with some types of pain, and terminal sedation takes days before death. With the Catholic Church running nearly 60 per cent of palliative care places in Australia, there’s a reluctance to hasten death, virtue seen in suffering. Syme says one woman, whose sister was dying in appalling pain in a Catholic hospital, was told by a nurse to be grateful her sister “had been chosen to share the agony of Christ”.
In practice, it’s a question of how long it takes to die. For cancer sufferer Rudi Dobron, admitted to the Melbourne hospice Caritas Christi with the announced intention of refusing food and fluids, it took 47 days. Incontinent, unable to speak, hallucinating and aching in the head, he got 24-hour sedation only after 32 days. “Dying with dignity?” Syme writes. “Give me a break. And all this occurred in one of Victoria’s supposedly best hospices.”
Victoria’s proposed legal changes go only so far, permitting assisted dying for people with “weeks or months to live”. In Canada, Justin Trudeau’s government has introduced a bill allowing it for those whose death is “reasonably foreseeable”, even though the country’s top court ruled unanimously the choice to die was a right under the Canadian Charter of Rights and Freedoms, introduced under Trudeau’s father, Pierre.
This excludes those with advanced incurable conditions − motor neurone disease, Parkinson’s, chronic organ failure, high quadriplegia, musculoskeletal degeneration – who find their life intolerable but for whom no early death is in prospect.
“Their suffering is fundamentally no different from that of a dying person, and their requests for relief of their suffering must be respected, even if it means providing assistance for them to control the end of their lives,” Syme argues. Suicide by violent means or hoarded prescription drugs would remain their way out, with family and friends who assist risking prosecution.
This book talks mostly about physical pain. Syme edges into the right of choice to die for people with “existential suffering”, those diagnosed with incipient dementia, and those who’ve already slipped beyond mental competence but leave an enduring power of attorney asking for an end. He supports this right, as would many ageing Australians who otherwise see themselves in pastel-coloured ga-ga land, dutifully visited for years by children they no longer recognise.
Some will see this taking us into Aldous Huxley’s Brave New World. Matt Day’s black comedy The Mother Situation, linking assisted dying with the inheritance factor in Sydney real estate, won this year’s Tropfest. But so far, from the evidence in Europe, such abuse is unlikely, and some relatives are already misusing powers of attorney without resorting to euthanasia.
Hospice care developed from pilgrimage and retreat at the end of life. Syme emerges in this moving book as a kind of pilgrim, too: a medical specialist who could have limited himself to treating physical conditions, stepping to the other side of the road on the question of end-of-life suffering, but didn’t. JF
MUP, 277pp, $32.99
This article was first published in the print edition of The Saturday Paper on Mar 4, 2017 as "Rodney Syme, Time to Die". Subscribe here.