Campaigns for voluntary euthanasia, to allow people to choose freely when and how to die, have been remarkably unsuccessful in Australia.
For years, polling has shown that as many as four in five Australians want the right to choose a peaceful death. But even with immense community support and decades of campaigning, the euthanasia campaign has been unable to put the issue front and centre of the political debate in this country.
When the Northern Territory passed laws legalising euthanasia in 1995, they were quickly struck down by Federal Parliament. The Howard government also removed the power of the NT and the ACT to legislate for euthanasia. Since then, only Tasmania and South Australia have come close to legalising voluntary euthanasia. But they, too, have been unsuccessful.
With such strong community support, why aren't governments across Australia under more pressure to change their laws? Why aren't more politicians feeling the heat and driving forward the legislative changes that would meet the public's expectation?
Issues of life and death are deeply meaningful to us all, but only some of us find ourselves face to face with the painful personal stories of the people who are facing a terminal illness and a long and painful slide towards death.
And it's unsurprising that those who find themselves making difficult decisions about the end of their own life aren't in a position to campaign for changes to the law. Many of these stories go unheard, but they are incredibly powerful.
Some may have come across journalist and newsreader Tracey Spicer's story, which she recounted after her mother's death from pancreatic cancer in 1999. It's a powerful and sad story where she expresses her absolute grief and frustration at being unable to do something for her mother, whose "screams of pain were blood-curdling".
She knew her mother supported voluntary euthanasia; it was a given in her household.
But when the time came to relieve her mother's suffering, there wasn't any help available from the medical staff as the law restrained them. She herself was driven to hold a pillow to her mother's face, but couldn't go through with it.
And why should she? Why should any daughter be put in this position? Spicer asks of our politicians: "How many of them have seen someone they love die in agony, and live with feelings of grief, regret, and helplessness?"
Voluntary euthanasia can touch both the elderly and the young. Take Colin Marriage, whose story was written by his sister and published by British advocacy group Dignity in Dying.
He was diagnosed with terminal cancer at just 40 years old. His family reassured him that pain relief and care was so good these days he would be able to die peacefully and in comfort.
His medical team was excellent and his doctors did all they could within the law to help him. In the week before his death, when Marriage asked his doctor how long he had left, he was devastated when he was told he had another week – not because he had so little time left, but because he was in such pain.
He was unable to eat or sleep properly, and he could not stop being sick. He asked many times why his suffering was being prolonged. One of the last things he told his family was that it isn't right to treat people in such a way.
Like most, I believe that people like Colin Marriage, and Spicer's mother Marcia, should have the right to die with dignity. I share the view that people should not suffer unnecessarily at the end of their lives; that choosing when and how to die is the most personal of choices.
Of course, there are moral and practical issues that we need to work through. The issues of balance between people's dignity and the sanctity of human life, and the extent and efficacy of safeguards for vulnerable people, have been raised throughout this debate. But several countries have developed schemes for voluntary euthanasia that are working effectively and safely.
The ACT is a modern, compassionate community. I am confident we could develop a voluntary euthanasia scheme with strong safeguards. As an elected Greens member of the ACT Assembly, from a party committed to tackling the big social and environmental issues, I believe it's time we made legislative progress on voluntary euthanasia.
But before we can even begin resolving the moral and practical challenges, we must fight to remove the undemocratic and discriminatory restriction that prevents the ACT from making our own laws on euthanasia.
It is indefensible that the ACT government has the responsibility for health, education, prisons, courts, criminal laws – all the regular "state" functions – but doesn't have the right to make laws on euthanasia. Canberrans should have the same rights as other Australians.
We have repeatedly urged the federal government to restore these rights, but our calls have fallen on deaf ears. So where does this leave people in the ACT who may be dying or suffering, and their families? It leaves them with no right to make the most personal of choices.
It leaves them, like Spicer, in the unenviable position of wanting to take matters into their own hands.
It's time for us to start listening to the real stories of people who are suffering. They can teach us valuable lessons about the challenges facing us at the end of life. It's time we all imagined ourselves being in the same situation because until we do, it is all too easy for us who have no experience with terminal illness or long-term pain and suffering, to disregard this issue as one that is relevant only to others.
Saturday is Dying to Know Day, which aims to encourage people to have conversations about death, dying and bereavement. It is time we had these conversations, with our loved ones and with the Australian public. It is time we legislated for the dignity of those who are suffering.
Shane Rattenbury is a Greens MLA. To learn more about Dying to Know Day, visit thegroundswellproject.com/dyingtoknowday.