Widow says NT's new VAD laws will still leave people in 'cruel' situations

Widow labels NT's new VAD laws 'very weak' after proposed amendments rejected by parliament In short: A voluntary assisted dying (VAD) advocate has called the Northern Territory's recently passed VAD laws "very weak" and says they will fail to help people like her late partner, who died with a rare neurodegenerative disease in 2015. Yesterday the NT parliament passed the government's Rights of the Terminally Ill bill, which will legalise VAD in the Territory when it comes into effect. The legislation includes conditions that patients must have a 12-month prognosis and that health professionals cannot initiate conversations about VAD — a so-called gag clause. It has been 11 years since Carolyn Marriott lost the love of her life and her partner of two decades, John Bhana. She describes him as a "beautiful man" who was "extremely hardworking" and, like her, found joy in being out on the water. But while she holds the memory of who he was dear, his final days still haunt her. "He was emaciated, he was skeletal; you wouldn't keep an animal alive like that," she said. "It's cruel, downright cruel, to see somebody you love in that situation and there's nothing you can do." Carolyn, who lives in Darwin, has been a long-standing advocate for voluntary assisted dying (VAD) to be legalised in the Northern Territory. But she fears the new laws passed in the NT yesterday don't go far enough and will therefore be rendered useless to many who need them, including people like her late husband. On Thursday, the NT parliament passed the Rights of the Terminally Ill bill, which will make VAD legal in the NT in 18 months from now. It includes a condition that patients must be given a prognosis of 12 months or less to live and another that prevents health professionals from initiating conversations about VAD — a so-called gag clause. The bill's passage followed days of debate in NT parliament, in particular over amendments proposed by backbenchers that advocated for the removal of those conditions. Carolyn said without the amendments, the legislation was "very, very weak". "The 12 months is just ridiculous, doctors are doctors … and certainly with what John had, they hadn't any idea about anything at all," she said. 'That's not a life, it's a slow death' John died in 2015 at the age of 65 after suffering from corticobasal degeneration, a rare disease that affects the area of the brain that controls movement, including speech. "We were just walking across the paddock and he would just start falling over on the left-hand side, and it was always on the left. It was very strange and he said, 'What's the matter?'," Carolyn recalled. "He'd go to see a specialist eventually and still no, nothing, no idea, and then eventually it slowly got worse and worse." Carolyn said it took years for John to be diagnosed and by the time he was, he needed to be admitted into an aged care facility for additional care. From there, she said she watched her partner rapidly deteriorate. "Every evening before I left, there was a [help] call button on a cord and I used to put it into his hand before I left … so that he could just press the button, and as time went by he couldn't even press the button to call for help," she said. "That's not a life, it's a slow death and that's just not right." Carolyn said John told her in 2014 that he wanted access to VAD, but knew he wouldn't be able to because it was illegal in the NT. Regardless, she argued that had John faced the same diagnosis today, the current legislation's 12-month prognosis requirement would have made him ineligible because of how little is known about the disease he had and how it progresses. She said looking back, in the 12 months prior to John's death his condition was already "hopeless" and in her view, no amount of palliative care would have lessened his suffering. "That is not something care is going to help ... even the best care in the world can't help that," she said. Despite strong opposition from VAD advocates to the 12-month prognosis requirement in the NT, similar restrictions of 6 to 12 months exist in every other Australian jurisdiction except the ACT, where there is no set timeframe for access. However, the so-called gag clause only exists outside of the NT in Victoria, and the state recently overturned that condition, with the new legislation set to come into effect from April 2027. Carolyn said she vehemently disagreed with the gag clause, saying: "I can't understand why you hide things? Why keep things silent". "People should be able to get information freely,"she said. A good death Carolyn said what had added to her grief over the years was that despite visiting John daily, she missed the moment he passed away. The thought that he died alone, she said, was "horrendous; I live with it all the time, all the time". "I'd have loved to put my arms around him and hold him, and I didn't get any chance at all," she said. It's her hope that other people facing diagnoses similar to John's will one day have the ability to choose a different end for themselves. "Things can get very [bad] so you really don't want to be here, and I know certainly John didn't," she said. "To me it's basically just the ability to choose. "To be given the information, the correct information, what is available, and to then choose, if they choose to go down that path. "It's living your life the way you have chosen to live it, and if you've done that with the rest of your life, why can't you organise to do that at the end of it?"