Mary Porter's mother died painfully from cancer in a four-bed ward in a nursing home. The other patients complained when the screens was drawn around her bed because it blocked the view to the windows.
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''It wasn't pleasant to sit for five days and listen to the rumbles and listen to my mother's laboured breathing,'' she said.
The Labor MLA would have liked a better death for her mother. It's a sentiment shared by many for their own loved ones and for themselves. But what that means is not so clear, Porter believes.
What is a good death? Is it better use of palliative care? Is it assisted suicide? Is it voluntary euthanasia? Is it writing down instructions for future care?
Those were the questions playing on her mind when she spent three weeks in Europe last month, visiting countries where voluntary euthanasia or assisted suicide have been legal and in use for at least a decade.
The former nurse, who turns 71 next month, visited Belgium, the Netherlands and Switzerland on a taxpayer-funded study tour. She talked to people for and against voluntary euthanasia but also about other issues such as palliative care, to start a community conversation about end-of-life options at home in the ACT.
Porter says her intention is not to present an answer or a preferred view but to get people talking because, despite all the obstacles, she believes voluntary euthanasia will one day be a reality in Australia.
'''It's going to be a national movement once it happens, I believe,'' she says.
Voluntary euthanasia and assisted suicide are outlawed here.
Both practices were legalised in the Netherlands, in 2001, and Belgium, in 2002. Switzerland has a long-standing legal loophole which allows for assisted suicide, as long as the people assisting are not acting out of ''selfish motives''.
Right-to-die group Exit International was founded by Australian doctor Philip Nitschke, who has announced he is standing as a candidate for the Voluntary Euthanasia Party in the ACT for the Senate in the coming election.
Exit Switzerland vice-president Bernhard Sutter says the difference between active or voluntary euthanasia, and assisted suicide is ''merely the administering of the medication''.
''Let's say it's administered by intravenous drip: if the doctor opens the switch allowing the lethal medication to flow, it is 'active euthanasia', if the patient opens the switch, it is 'assisted suicide'.''
A paper prepared for lobby group Australia 21 by law professors Ben White and Lindy Willmott gives an example of voluntary euthanasia as a doctor injecting a competent patient, at their request, with a lethal substance to relieve that person from unbearable physical pain.
An example of assisted suicide, they wrote, was a friend or relative obtaining a lethal substance such as as the drug Nembutal and providing it to a competent person at their request.
The pair reported that in the Netherlands in 2010, voluntary euthanasia accounted for 2.8 per cent of all deaths and assisted suicide 0.1 per cent. Figures for Belgium in 2007, voluntary euthanasia accounted for 1.9 per cent of all deaths and assisted suicide 0.07 per cent.
The Swiss group Dignitas also helps to facilitate assisted suicide, including for people from outside Switzerland, with reports 14 or 15 Australians have ended their life with the help of the organisation. (The Dignitas fees are put at between $8000 to $12,000.)
Nitschke says, ideally, he would like both assisted suicide and voluntary euthanasia legalised in Australia, saying if Tasmania gets its voluntary euthanasia bill passed it will put pressure on the other states to follow.
A private member's bill co-sponsored by Tasmanian Premier Lara Giddings and Greens leader Nick McKim proposes allowing terminally ill patients to access medical intervention to end their life, that intervention to be administered either by themselves or their doctor. The bill is expected to be introduced in the spring session of Parliament, which starts on August 20.
Only patients in the advanced stages of a terminal condition who are residents of Tasmania and aged 18 or over would be eligible for ''voluntary assisted dying''. The bill is expected to propose multiple checks and balances including that the person gives their informed consent and is subject to a 14-day cooling off period after being assessed as eligible for the lethal medication. Both the patient and doctor can opt out at any time.
Nitschke says the Tasmanian bill is the best hope of voluntary euthanasia being legalised in Australia since 1996 when it became law in the Northern Territory, only for the federal government to effectively make the law null and void within a year. Nitschke helped four people to end their life in the Northern Territory before the law was nullified.
"I think Tasmania probably has the best chance because you have a premier supporting it,'' he says. "Not since [then chief minister] Marshall Perron in the [Northern] Territory have we seen a state leader push a piece of legislation. On the other hand, she's in a fragile position down there, so there is a bit of argument about whether it's going to pass or not.''
The ACT, like the Northern Territory and Norfolk Island, is banned by federal legislation to pass laws that will allow voluntary euthanasia or the assisting of a person to end their life. Former Greens leader Bob Brown failed twice during his parliamentary career to repeal the law.
Nitschke, who is moving to Canberra next week to start his campaign, says he believes some elderly people, in particular, will change their vote to the Voluntary Euthanasia Party and he hopes the flow of preferences from his party will be significant enough to persuade the federal government - be it Labor or the Coalition - to repeal the so-called ''Kevin Andrews law'', named after the Liberal MP who introduced it.
"There's no justification for discriminatory legislation like that which disenfranchises at least the ACT, the Northern Territory and Norfolk Island because of the ideological beliefs of a certain slab of Parliament in those days,'' he says.
However, neither the federal government nor the opposition seems swayed to move at this point.
Opposition health and ageing spokesman Peter Dutton says the Coalition ''does not propose any changes'', while a spokesperson for Attorney-General Mark Dreyfus says ''the government is not planning to introduce legislation dealing with voluntary euthanasia into the Parliament''.
Porter says the ACT Government is also not planning any measures to circumvent the Andrews law. She maintains she is simply responding to a concern she recognised among in the community, including from lobby groups such as Dying with Dignity.
"It's me responding to the questions I'm asked by my constituents and trying to get myself better informed and then allowing some conversation … so we can prepare for the day we might get permission to do it,'' she says.
"But on the other hand, it's also exploring some issues that arise when people say 'I'm worried about my death or my relatives dying'. What does that really mean? Does that mean there are not enough options for that person other than assisted suicide or euthanasia? Does that mean we, as a society, are leaving these people vulnerable and afraid? Do they know they can write an advanced care directive, for instance?''
She is dismissive of Nitschke's political party as a means to advance voluntary euthanasia.
''I don't think that the heat of an election is the best place for the debate,'' she says.
In Europe, Porter met with both advocates and opponents of voluntary euthanasia and assisted suicide. She hopes to organise a round table of stakeholders in the ACT representing a range of views to present more information to the government.
''I want to work with my government to ensure people have as many options as they need at the moment under our own law,'' she says.
The Europe trip did change Porter's own viewpoint, initially shaped by her mother's death and that of her father-in-law last year.
''Before I went, I was very strongly of the mind that voluntary euthanasia was probably the way we had to go in the end because it didn't seem to me that palliative care could answer all the questions,'' she said.
''But after going and listening to everybody, I realise that it is much more complex than I thought it was. While you can have a very good system, like there has been in Belgium and the Netherlands, in particular, since the early 2000s, people are now starting to ask. 'What about the mentally ill? Should they be allowed to be euthanased? What about people with disabilities? What about children?'''
Belgium has been in the firing line recently following reports of moves to extend its laws so that children and people with condition such as Alzheimer's disease be considered for voluntary euthanasia. It throws into question how the very young or mentally impaired can make an informed and conscious decision to end their life, even if, in the case of adults, they have provided written instructions before their condition deteriorated.
Some in Belgium, such as oncologist Dr Benoit Beuselinck, are actively working against the laws, saying they have gone too far.
''For me and several of my colleagues, the euthanasia law has been bad for Belgium: the patients are finding less humanity, the doctors have more difficulties in their daily work and finally, I think the image of our country is suffering,'' he says.
Beuselinck, who met Porter, says more focus should be on patients being able to manage their disease or condition through palliative care. He also says the euthanasia laws are threatening the patient-doctor relationship.
''In my practice it occurred that some family members thought we were euthanasing a patient without her demand. Another patient refused to go to a hospice, because he thought that palliative care would automatically mean euthanasia. A colleague even received a false demand for euthanasia, written by a son on behalf of his father,'' he says.
Exit Switzerland's Sutter who also met Porter, suggests assisted suicide is very much about an individual's rights.
He says in his country ''every competent individual gets to decide himself instead of being left at the mercy of medical personnel''.
''Switzerland being a direct democracy, citizens are used to deciding issues of far greater consequences than how they want to die; therefore if life's end comes, they sure are not going to ask somebody for permission to die but decide for themselves,'' he says.
Sutter believes it is only a matter of time before Australians, too, have voluntary euthanasia.
''Of course. A vast majority of the people in Western countries are in favour of self-determination. And medical problems at life's end are growing, as the average dying age is rising,'' he says.
''Therefore, democracy will win
sooner or later and all Western countries will have humane laws for the dying. Australia definitely won't be the last. In all of the Anglo-Saxon world there is a change in the political elite going on right now as to this topic … A buck gets 10, you'll live to see it.''
Australia 21 believes state governments should introduce laws to allow voluntary euthanasia and assisted suicide and the federal Parliament should restore powers that were withdrawn from the territories so their parliaments can do the same.
Australia 21 director Bob Douglas says no law is perfect but he believes the situation overseas demonstrates that ''it's satisfying a lot of people that they've got an option they genuinely want''.
''There are pockets of strong commitment among legislators all over Australia and, at the moment, I think they have been defeated by very strong lobbying forces which essentially say, 'You can't legislate to protect the vulnerable','' Douglas says.
''There is an implication if you legalise euthanasia and assisted suicide, the people who are feeling most useless and most dependent on other people, will feel under pressure to take the pill and you will quickly go to the point where it will be used in inappropriate cases.
''I think what White and Willmott concluded, was that it was unquestionably possible to change the laws in ways that would protect people and take the issue to where it was a) desperately desired by the person concerned, and b) appropriate in the eyes of the community.''
But voluntary euthanasia will be fiercely opposed by some groups in the community.
The Catholic Social Justice Commission of the Archdiocese of Canberra and Goulburn is chaired by Mike Cassidy, who says the right to life is an inalienable right and can't be quashed by euthanasia laws.
''I can't say, 'Well, I'll give up my right to life because that's my free choice to do so' because it affects other people,'' he says.
''People such as those in a vulnerable state, who perhaps feel they should have a euthanasia death because they might be a burden on other people.
''There are all sorts of contingencies apart from what people often cite as the few cases where people find life unbearable and want to end it.
''You can't legislate for those specifics situations without affecting the right of everyone to life.
''Because of that inalienable situation, we really don't see a way to safely legislate for euthanasia.''
Porter, meanwhile, says the last person she spoke to on her trip was a 92-year-old professor of cardiology who had worked for many years on a review panel in Belgium scrutinising deaths by assisted suicide and voluntary euthanasia.
''And he said to me, 'Mary, you have to have courage','' she said.
She took that to mean the ''courage to keep on exploring, talking and not losing courage in the face of what is a very, very difficult question''.
''Don't be put off by the difficulty of the task of actually raising this in the community and having a conversation, because it's huge,'' she says.
And Porter says one of the most telling things she saw on her trip was a sign in Beuselinck's office in Belgium showing the Woody Allen quote: ''I have questions to all your answers''.
''You know, that's about it,'' she says.
