By mid-2022, six months after Sue Parker began her VAD application, the paperwork was complete.
Because hers was a neurological condition (ALS, a form of motor neurone disease), Sue had to be examined by her GP and two specialists to confirm her diagnosis and agree on how long she was expected to live. “I naively thought it would be an easy process,” she said.
It was the middle of a Covid lockdown, securing appointments was difficult, and very few neurologists had completed the VAD training, especially in regional Victoria. “I think at the time there were about two and-half who had done the training,” Sue said.
There was also the requirement that all the consultations be in person, and not via Telehealth, which was prohibited under a Commonwealth prohibition on using a carriage service to discuss or incite ‘suicide’.
Sue described most of the hurdles as onerous. One appointment, with a neurologist, had to be arranged "after hours on a Saturday in an unnamed rural location" because his employer -- a Catholic-owned MND hospital in Melbourne -- conscientiously objected to VAD. "It was like I'd asked for illicit drugs or something illegal," she said.
Until she had the medications in her hand, Sue was worried that something would go drastically wrong and she would be denied her wish.
“That she would lose the ability to swallow and wouldn’t be able to take the medication," her daughter Nicole said. "Or she would have some sort of MND brain haemorrhage, and wouldn’t be able to speak and give consent. It was the biggest fear.”
When the pharmacists delivered the VAD substances in a small locked box, Sue's spirits transformed. "Her mood just lifted," Nicole said. "She smiled instantly and thanked them and wanted champagne for everyone."Sue wrote of her relief. “Now I can really relax. The burden of MND has been lifted. Life is wonderful. I can now live and enjoy my life knowing when I feel the quality has gone… so too can I go."
Sue chose to die at home on 28 November, after her granddaughter's final exams. What she called her "used by date" was written on her calendar, circled with a red love heart.
"I always said that once I can no longer help myself, that would be a good time to go. No-one should lose control over their own self.
Nicole said her mother's death was “unbelievably peacefull. It was pure bliss. She lay there and slowly fell asleep. Her heart rate slowed until it stopped. It was so tranquil.”
The family is relieved Sue got her wish, but they are angry the assessment process was so hard. “It was too long and the hoops you have to jump through," Nicole said. "She wasted six months of the only 12 months that she had left, getting it done. If you only have 12 months to live, and you're wasting six months on applying for this, that's the best six months.”
Despite her MND diagnosis, Sue always considerd herself lucky, but her good fortune weighed heavily. “I have always believed in voluntary assisted dying. My body, my decision.
"When I read other stories, I feel so guilty. I feel so much for anyone with a debilitating disease who does not qualify for voluntary assisted dying. The fine line between what I have compared to others who are considered non-eligible for VAD is extremely unfair.
"Access to VAD changed my life for the better, instantly. It took away the pressure and worry about how I'm going to die.
"I want my story to be shared, part of my legacy, to help those who come after me."
