This week will be a mixed bag of emotions from Ballarat MP Jaala Pulford.
Not only will it mark what should have been her daughter Sinead’s 16th birthday, but this week state lower house politicians will debate the controversial Voluntary Assisted Dying Bill before it goes to a conscience vote.
The last time a similar bill was debated in 2008, Ms Pulford voted against it. But after watching her daughter die from an aggressive form of cancer less than three years ago, the Western Victoria MP and Agriculture and Regional Development Minister’s views have changed.
Sinead, then aged 13, died peacefully in the early hours of December 12, 2014, just a week after her mother was promoted to a top ministerial position within the Andrews Government.
“Watching someone dying from a terminal illness up close, I have now certainly changed my perspective (on the Voluntary Assisted Dying Bill),” Ms Pulford said.
“When (the bill) was debated in the upper house in 2008, I voted against it. I was just not convinced of its safeguards and I erred on the side of caution when casting my vote.”
But the death of her daughter, combined with consistently high community support and being more comfortable with the new safeguards outlined in the bill, Ms Pulford feels very different now.
“This time around the process is very different … a world of difference … the resources afforded to the government and the lifetime of expertise gathered to get the legislation right,” Ms Pulford said.
“We have to get this right, so that we can all have confidence in it.”
State politicians will undertake a conscience vote on the bill, and it will be an issue where Ms Pulford said many politicians will find it difficult to separate personal experience from public policy.
“There will be a range of life experiences politicians will bring … politicians are people too,” she said.
Under the proposed legislation, people suffering from an advanced and incurable disease, illness or medical condition would get the right to choose a doctor-assisted death from 2019.
The Andrews Government's legislation is modelled on the recommendations of an expert panel chaired by former Australian Medical Association (AMA) president Professor Brian Owler and billed as the most conservative in the world.
Under the panel's 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 must be over the age of 18, of sound mind, expected to die within 12 months and suffering in a way that "cannot be relieved in a manner the person deems tolerable".
The legislation 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.
For Ms Pulford, this week she will be feeling a myriad of emotions.
“In some respects, I am dreading (this) week. It will be difficult debate. I expect it to bring out the best in parliament, where all MPs will reflect on this deeply, whether it be about their constituents, their family or friends,” Ms Pulford said.
The legislation would not have been applied in Sinead’s case due to her young age. Ms Pulford said while voluntary assisted dying and palliative care should be seen as separate issues, they were “absolutely complimentary” and there must be continued investment in palliative care.
“(In Sinead’s case) she received the best palliative care and she had a good death,” she said.
According to research by the Grattan Institute, 70 per cent of people want to die at home, yet only about 14 per cent do so.
“We want to try to bridge that gap,” Ms Pulford said of state government support for palliative care.
Sinead’s palliative care and support has been described as outstanding by her mother.
“She was able to die at home, where the blossoms were out in full bloom. We were able to set her up in her room where she could still enjoy the sounds and smells of her house. Where the cat could pop up on her bed,” Ms Pulford said.
Less than a week before she died, Sinead was briefly in hospital and her parents and her doctor spoke openly to the young girl about her impending death.
“She was mightily pissed off when she realised she would never have a normal childhood, she would never marry or have children or go to university,” Ms Pulford said.
This was a brutal conversation for everyone involved, but it brought Sinead clarity. Immediately after that, Sinead was bundled into the family car and driven the long way home, via Lake Wendouree, a place she loved and where she would ride her unicycle.
While Sinead had the clarity she needed, the rest of the family metaphorically shut out the rest of the world by closing all the windows and doors to their Soldiers Hill home.
Ms Pulford soon realised this was not how she wanted the last few days of her daughter’s life to be, so she called all of Sinead’s favourite people, including her “fairy godmother” Jenny Long, her family and closest friends to be with her.
“We reopened the doors, there were mattresses on every floor in the house and people could come and go as they pleased … there was a true festive feel about it,” Ms Pulford said.
With her marvellous palliative care experts on hand, Sinead’s pain – and she was in a lot of it – was managed well. But in the early hours of Friday, December 12, 2014, Sinead Pulford lost her short battle with cancer. But she died in her own home, surrounded by the people she loved most in the world.
The Voluntary Assisted Dying Bill debate in the lower house is expected to be long and grueling. If successful it will be debated in the upper house during the week starting October 30.
“If we can provide a legal framework to give adults who are enduring something unendurable - that is terminal – the chance to die a better death, then we should do that,” Ms Pulford said.