The debate about the right to a good death is not helped by use of the E-word. Euthanasia has some unfortunate historical connotations and is also inaccurate. Assisted dying is a more apt description because the choice belongs to patients.
With the launch on Thursday of a plan to improve the state's palliative care, it's important to clear up a few end-of-life definitions.
Suicide is not illegal in Australia; assisting suicide is. That's the nub of the problem. Those people in the final stage of life who beg their friends or family to help them end their unendurable pain or unacceptable indignity are unable to commit suicide without assistance — unless they choose to starve themselves to death. Even that choice can be obstructed if the person is hospitalised.
When convening workshops throughout Australia recently on the subject of end-of-life choices, I was struck by the attitudes of Australians. They don't want politicians or medical professionals making the decision about the rules that should be attached to assisted dying. They don't want bureaucrats or ethicists or religious leaders doing so. They want informed opinions from experts such as palliative carers, lawyers and the dying themselves. They want to know how dying-with-dignity legislation works in other countries. There is clearly a mismatch between Australian politicians' willingness to make laws allowing people to control their own deaths and citizens' desire for them to do so. There have been a dozen attempts to introduce legislation in Australia, and the only one that succeeded lasted less than a year before Kevin Andrews's private member's bill was supported by the Federal Parliament. The Euthanasia Laws Bill (1996) over-ruled the Northern Territory's legislation which affirmed the rights of the terminally ill. This is an awkward issue for politicians who are extremely reluctant to introduce laws condoning assisted dying. I think the workshop participants I encountered offer a way forward.
First, they want to know how other places handle assisted dying. There are locations where a dying person's right to choose the manner and time of their own death is respected. The US state of Oregon offers an interesting case study. There, the terminally ill can seek a prescription for a lethal medication from their doctor who must verify that the patient has only six months to live. Those who choose this option are usually cancer sufferers and their decline is evident. The attending doctor and a second-opinion doctor must both be satisfied that the person has the mental capacity to decide. Only then is a prescription issued.
Oregon's Death with Dignity Act requires that the lethal medication be self-administered (other jurisdictions have different rules about this). For the terminally ill, having the means to end their own life provides immense reassurance and is not always used. Some people have extended their life, knowing they have the means to control their own death. Should they choose to take the lethal dose, the end is calm and in the company of loved ones. The Oregon legislation has not led to the kind of ''slippery slope'' or abuse that is often predicted by opponents.
As I have documented in my paper What can Oregon teach Australia about Dying? locations such as Luxembourg, Belgium, the Netherlands, Switzerland and Montana have very different arrangements but all are designed to give a dying person what she or he wants. Washington state and Oregon are almost identical. Australians can look to these experiences and see what rules suit their circumstances.
In Oregon assisted dying legislation came about through the ballot box. Australia could try a different route to legislative reform, and I return to the idea put forward by workshop participants. Their proposal could be trialled in Tasmania because of Premier Lara Giddings's (unusual) willingness to get behind this issue. What a brilliant opportunity to overcome the mismatch between the electorate's wishes and politicians' reluctance to decide.
Premier Giddings's dying-with-dignity legislation may or may not fail. But what if the Premier convened a deliberative forum involving randomly selected citizens from every Tasmanian electorate? These groups would have an opportunity to grill experts. Their findings could go to Parliament and be turned into appropriate legislation. Parliament would then be reassured that this is exactly what Tasmanians want, based on considered judgment, not opinion polling among a microcosm of its population.
When 80 per cent or more Australians consistently say they want legislative arrangements to allow people to die with dignity, it is surely time to give decision-making responsibility back to the people themselves.
This article was originally published at the Sydney Morning Herald