ASSISTED DYING: WHAT DOES THE EVIDENCE SHOW?
Dying. Although it’s a natural and inevitable part of every life, people often feel uncomfortable discussing it. Many consider the subject disturbing, distasteful, or even taboo. So any debate about ‘assisted dying’ can set off alarm bells – and at the moment those bells are ringing through the chambers and halls of the New South Wales and Victorian state parliaments. It’s an ethically challenging issue. But is the prospect of legally sanctioning the acceleration of an expected death as frightening as it sounds?
In NSW, Nationals MP Trevor Khan made an emotional plea to Parliament as he introduced the Voluntary Assisted Dying Bill, revealing his terminally ill father had begged to die but his family were incapable of easing his suffering.
“He asked us to help kill him. But we refused. It was an ignoble and undignified end for a man who had such dignity in life.
“Mr President, for me and for others in this place and for so many in our community this is deeply personal.
“Too many of us have watched or cared for a loved one with a debilitating illness and seen them die a horrible and undignified death.”
NSW safeguards
The NSW bill, which has been prepared by a multi-party working group over two years, requires that a patient must be:
At least 25 years of age and a New South Wales resident.
Suffering from a terminal illness which in reasonable medical judgement will result in the death of the patient within 12 months.
Experiencing severe pain, suffering or physical incapacity to an extent deemed unacceptable to the patient.
The decision must be signed off by two medical practitioners, including a specialist, and the patient must be assessed by an independent psychiatrist or psychologist to guarantee they are of sound mind and the decision has been made of their own free will.
Other safeguards include a 48-hour cooling-off period, the patient’s ability to rescind the decision at any time and the right for close relatives to challenge patient eligibility in the Supreme Court.
Patients who are determined to proceed would be allowed to self-administer a lethal substance to end their lives, or be assisted by a medical practitioner or nominated person.
Assisted dying is an issue that crosses political and social divides and MPs from the major parties will be granted a conscience vote when the NSW bill is debated later this year.
The Victorian model A bill to legalise assisted dying has also been introduced to the Victorian parliament, by the state’s Labor government.
The Victorian legislation is modelled on the recommendations of an expert panel chaired by former Australian Medical Association president Professor Brian Owler.
Under the scheme, terminally ill Victorians could access lethal medication within 10 days of asking to die, following a three-step request process involving two independent medical assessments. They would have to be over the age of 18, of sound mind, expected to die within 12 months and suffering in a way that can’t be tolerably relieved.
The patient would administer the drug themselves, but a doctor could deliver the lethal dose in rare cases where someone was physically unable to end their own life.
The bill includes all 68 safeguards recommended by the panel, including new criminal offences to protect vulnerable people from abuse and coercion and a special board to review all cases. According to Premier Daniel Andrews, the legislation would deliver the safest model in the world, with the most stringent checks and balances.
A conscience vote is also expected in Victoria by the end of the year.
Checking the reliability of the claims
The Catholic Church has been vocal in its opposition to voluntary assisted dying and has been circulating a pamphlet produced by anti-euthanasia organisation HOPE, which warns the laws would “radically abandon our deep human commitment not to deliberately take someone’s life”.
But supporters of voluntary assisted dying say the fears are unfounded and the campaign is misleading.
This debate is not new. Four years ago Australia21 brought together some of the nation’s leading thinkers to examine the topic, publishing two reports The right to choose an assisted death: Time for legislation? and How should Australia regulate voluntary euthanasia and assisted suicide?
Those reports were prepared by Professor Ben White and Professor Lindy Willmott from the Health Law Research Centre at Queensland University of Technology, who have now co-authored an article in The Conversation which warns Australian politicians and the public to question the factual and moral claims being made about assisted dying.
Fortunately, there’s a significant body of reliable evidence that examines how assisted dying regimes in other countries work that can inform these assessments.
The first claim is that safeguards cannot protect the vulnerable in society. But a reliable body of peer-reviewed evidence now demonstrates that assisted dying regimes are not disproportionately used by vulnerable groups. The available body of peer-reviewed research was further tested by the courts in Canada, and upheld by the Supreme Court, which concluded that it was possible to design a regime that adequately protects the vulnerable.
Those making claims contrary to this established body of reliable evidence need to provide their high-quality evidence in support of their position.
The second common claim is that the law will inevitably expand over time to allow new and broader groups to have access to assisted dying. But this factual claim doesn’t reflect what has happened elsewhere. There have been virtually no changes in the regimes that permit assisted dying overseas.
The best comparison for the proposed Victorian model is Oregon, as it permits only physician-assisted suicide (a doctor prescribes medication to a person, who must then take it themselves). Oregon’s law has not changed in the 20 years it has been in operation.
A limited exception to this trend is Belgium. In 2014, it extended its laws to permit assisted dying for competent terminally ill people under the age of 18 in restricted circumstances. But this expansion of law has been very limited, with only two young people using it in the three years since.
As the Victorian bill is tabled in parliament, we will continue to hear claims about assisted dying in the media. No doubt many such claims will also be made to politicians behind closed doors.
As informed members of the public, we must closely analyse these claims. It is even more important that our politicians do the same. They should recognise moral claims for what they are – claims underpinned by personal values. And they should challenge those who are making factual claims to name the evidence, then test how reliable that evidence is.
Important issues are at stake, and lazy debate and discussion should not be permitted.
The changing medical landscape
Voluntary assisted suicide is a complex issue that gives rise to a range of competing considerations. Rational engagement with law, ethics and practice can be obscured by outlandish claims and emotive language on both sides of the debate. Australia21 is urging respectful engagement on this issue, where people of differing views are genuinely interested in understanding the perspectives of others.
We believes it’s important to recognise the social context:
Australia has an ageing population and the baby boomer generation is now (and will increasingly be) involved in medical decisions as they come to the end of their lives. This generation will not be passive recipients of paternalistic medical practices, and will insist on greater input in and control over their dying process.
Due to ongoing advances in medicine, lives can be sustained in circumstances that have never previously been contemplated and decisions need to be made about whether to give life-sustaining medical treatment or allow the individual to die.
There have also been significant improvements in palliative care, which have enabled pain in dying patients to be managed to the extent that has not been possible in the past.
However, millions of Australians recognise that not all suffering as death approaches can be dealt with by palliative care and that some suffering will only be relieved by death.
After consideration of a large body of research, evidence of international developments and the conclusions reached at a high-level roundtable, Australia21 has concluded that voluntary assisted dying should no longer attract criminal sanctions and that a legislative framework defining and limiting the circumstances is overdue.
More than 20 years ago, the Northern Territory was the first jurisdiction in the world to introduce enabling legislation and it withstood a repeal bill a year later.
Former Chief Minister, Marshall Perron, was the architect of the NT Rights of the Terminally Ill Act.
“If there are terminally and incurably ill patients who wish to end their suffering by accelerating inevitable death and if there are sympathetic doctors who are willing to help them to die with dignity, then the law should not forbid it,” he said at the time.
But the legislation was contentious, with religious groups and the Australian Medical Association objecting to it among others, and it was overturned by federal parliament in 1997.
Doctors struggle with ambiguous ‘double effect doctrine’
In 2016, the AMA National Conference hosted a special policy session on assisted dying as part of an on-going policy review.
The session brought together a panel of doctors, ethicists and lawyers with a range of views on whether doctors should be involved in assisted dying.
The debate began with an account of the death of an elderly patient who had had a breathing tube removed without anaesthetic because the treating doctor was fearful that if they administered a drug they might be charged with causing their death.
The scenario prompted discussion of the degree to which doctors were uncertain about the law around assisted dying and the widely-applied ‘double effect doctrine’.
Dr Karen Hitchcock, who works in acute and general medicine at Melbourne’s Alfred Hospital and last year wrote a Quarterly Essay on caring for the elderly, said there needed to be much greater education around the doctrine, under which the death of a patient is considered a side effect of treatment rather than the intention.
“Double effect is the bedrock of medicine, which is to treat symptoms,” Dr Hitchcock said. “We never treat life, we treat symptoms. So hastening death is not an issue. [Doctors] do not set out to kill; alleviating symptoms is the aim.”
But Emeritus Professor Bob Douglas from the Australian National University, who’s a Director of Australia21, argued that ambiguity around the doctrine was continuing to cause serious concerns for both doctors and the broader community.
Australia21 believes the practice of easing the suffering of those who are dying needs to be brought out of the shadows.
Since 1995, many jurisdictions around the world have followed the Northern Territory’s lead, legalising voluntary assisted dying. Now it’s time for Australia to finally adopt open, honest and accountable laws for treating terminally ill humans with the the dignity that many of them crave.