17 August 2015
House of Representatives
Jay Franklin lives in constant pain and has all his life. He has a congenital bowel disease known as Hirschsprung disease. As a result, his pelvic cavity is riddled with infection, even after more than 100 operations. In 2013, the Victorian man announced his plans to buy a one-way ticket to Switzerland where he was to receive life-ending medication. However, because of the severity of his condition doctors were unsure if his digestive system would be able to absorb the drugs that were intended to end his life. They were concerned the drugs might, instead, leave him in a vegetative state. Jay decided not to board the plane to Switzerland. Instead, he became a passionate advocate for voluntary euthanasia in Australia, running as a Victorian state candidate for the Voluntary Euthanasia Party in 2014.
Popular opinion in Australia is clear on this issue. A 2009 Newspoll survey found that 85 per cent of Australians support or advocate for voluntary euthanasia. Another Newspoll survey three years later garnered near identical results. Nearly one in four of those surveyed in the 2012 poll would even change their vote if the candidate they otherwise would have voted for was opposed to assisted dying law reform. Three out of four Catholics, four out of five Anglicans and over nine out of 10 Australians with no religion say they, in principle, support voluntary euthanasia. There is almost no difference across age groups, with middle-aged people being those who favour voluntary euthanasia the most, and limited differences across political parties. In 2012 the Australia Institute released their national survey of 1,422 people, also finding 71 per cent support voluntary euthanasia.
As someone who believes in the Burkean principle of representative democracy, I do not think that we in this place should blindly follow polls, but this level of community support should not be ignored. In 1995 the Northern Territory legalised voluntary euthanasia, albeit for just eight months before the Commonwealth parliament passed the so-called 'Andrews bill', named the after member for Menzies, which restricted the ACT and the Northern Territory from legalising or legislating on euthanasia. In those eight months before the Northern Territory law was overridden, three people died under the law, two of whom were terminally-ill cancer patients. The other had a rare disease. The Northern Territory law required that the patient be over 18, be mentally and physically able to request his or her own death and have the approval of three doctors, including an appropriate specialist and a psychiatrist. If all of those criteria were met, a nine-day cooling-off period would follow.
Since then, every state and territory except Queensland has seen attempts to introduce euthanasia reform. All in all, there have been over 30 attempts at reform. Despite the strong community support to which I referred earlier, all of these attempts at reform have failed. In the ACT, Mary Porter MLA has engaged Canberrans in a serious conversation about end-of-life issues. End-of-life plans have to be talked about regardless of one's views on voluntary euthanasia. Last year Mary Porter held a very insightful end-of-life forum and plans on doing the same this year. She has also reported on the policies of Switzerland, Belgium and the Netherlands in the hope of finding the best policy mix for the ACT and for Australia. Mary Porter's report, which I recommend to the House, can be viewed online.
Much evidence from international jurisdictions has been gathered since the Northern Territory passed its act in 1995. In the previous year, voters in the state of Oregon passed a ballot initiative known as the Death with Dignity bill. The state legislature attempted to override that bill in 1997, and the override attempt was itself overridden by the people of Oregon with a 60 per cent majority. Four other states have followed Oregon's lead and many 'death with dignity' organisations have since sprung up around the United States.
There are, of course, legitimate concerns over legalising doctor assisted dying. The right checks and balances need to be in place, but I do believe the Death with Dignity Act is a good place to start. Under that act, the patient requesting help must do so voluntarily and in the company of witnesses. Physicians may object to participating on moral grounds, and the person requesting help must be briefed on alternatives such as pain relief and hospice care. Most importantly, the patient must be of sound mind, their judgement must be unimpaired and they must have less than six months to live—that is, they must be terminally ill. These last two conditions must be reviewed and approved by a second doctor, and a cooling-off period of 15 days then ensues.
The Oregon example also serves as evidence of how to avoid the slippery slope that many rightly fear. Since 1997, 1,327 people in Oregon have been prescribed life-ending medication. Of these people, about four-fifths had terminal cancer. Contrary to what some feared might happen, Oregon's laws have not been used by poor and vulnerable people with no health insurance. Nor has demand for help been driven by hospice care not being widely available. Almost all who have asked for help have been insured and educated and had access to hospice care. Indeed, evidence from Brunel University's Clive Seale suggests terminal cancer patients in British hospices are more likely—not less—to consider doctor assisted dying than those in hospitals. In fact, the loss of autonomy and the loss of dignity—people's inability to do the things essential to living—are the most common reasons provided by those who have asked for help in Oregon. They were asking for help because of the fear of loss of dignity, not because they were in fear of pain.
I am not alone in pushing for a broader debate on the issue of euthanasia. As we speak, Britain is having a robust debate inside and outside of parliament about the Oregon model. The British Labour Party is pushing in that debate for the terminally ill to have a say on how their death takes place. The Netherlands and Belgium have also had their own models in place for more than a decade. In both places, doctors can administer the medication themselves instead of only allowing patients to do so, as is the case in Oregon. In the Netherlands, doctor assisted dying is also available to non-terminally ill patients who suffer crippling or debilitating pain from incurable illness. The Dutch case is important because they consciously decided to regulate instead of turning a blind eye to doctors prescribing or discreetly providing lethal medicine to the terminally ill. Doctors in the Netherlands can opt out of this as they choose. It is the case in the Netherlands, as in Oregon, that terminally ill cancer patients make up most of those who seek out euthanasia.
As the recent increase in the use of the life-ending drug Nembutal in Australia suggests, euthanasia is a serious issue in our country. As Australia 21 reported, both voluntary euthanasia and assisted dying occur not infrequently. Similarly, a study in the Medical Journal of Australia concluded that, in 1995-96, approximately:
… 1.8% cent of all deaths in Australia occurred as a result of voluntary euthanasia and 0.1 per cent of deaths were due to physician-assisted suicide.
On top of this, the study found:
An estimated 3.5% … of all Australian deaths involved termination of the patient's life without the patient's explicit request.
This is problematic because some people have access to help as a result of having a certain mental or physical condition while others who might want that help cannot get it. A law that applies to some and not others is arbitrary and against the spirit of equality. It, therefore, suggests to me that the current law is operating in a way that is deficient. I believe that knowing that some doctors assist dying patients while not knowing their legal protections is not a wise approach for a law-abiding society. There must be legal clarity and the Dutch example serves to remind us of the importance of avoiding legal grey areas, inconsistencies and stretching or shrinking boundaries.
Support for doctor assisted dying also has grown internationally. A poll by The Economist recently found that doctors being allowed to prescribe lethal medication for patients who are close to death or suffering unbearably is gathering support across the Western world. Adults in 13 out of 15 countries support the idea in principle. Right now, legislation or legal cases are in progress in Britain, Canada, Germany, South Africa and around 20 American states, with euthanasia legal in five US states. Polling has also found that the attitudes of doctors are changing in Britain and America, even if their associations are officially neutral or against.
Morally, changing Australia's laws is about accepting patients' individuality, dignity and autonomy. I believe in the sanctity of life, but that belief in the sanctity of life is not a justification for denying choice for those who are terminally ill. This is about giving people a choice—a say—in how their death happens. I believe community attitudes have been changing for many years and it is time that politicians listened. In the words of Stephen Hawking, who said that he would consider help to die when he believes the time is right:
To keep someone alive against their wishes is the ultimate indignity.
[My thanks to David Winter for his assistance in drafting this speech.]