15 November 2023

My father wanted the choice so badly

Katarina watched her father Nebojsa starve himself to death to escape the ravages of his Parkinson's disease. She is now leading the fight to pass a voluntary assisted dying law in the ACT. "If I am ever as unlucky as my father, I want the choice that he never had."

After Katarina's dad Nebojsa was diagnosed with Parkinson’s disease in 2006, he endured a decade of slow decline.

Katarina was just 13 when he began asking her to complete his paperwork because it was too hard for him to write.

“His words started to slur and the saddest memory I have, apart from his death, was when I asked him to sing to me in his big beautiful baritone voice,” Katarina said

“He said, ‘I’m sorry Cherry, I can’t sing anymore’.”

The disease progressed until he was forced to quit his two full-time jobs. The former builder eventually became chair bound and then incontinent.

“At times, he didn’t even have the strength to stand on his own two feet. But simultaneously, he wanted to put ski boots on and go down the slopes,” Katarina said.

When Parkinson’s robbed him of his ability to speak - despite him being “completely cognitively present” - he would communicate by squeezing his loved ones' hands.

Control

Nebojsa always thought his life was the one thing that was his to control - but he soon realised that was far from true.

“The law, as it currently stands in the ACT, doesn't allow for people like him to make a choice about how his life will end," Katarina said.

“He could only trust that the doctors would be able to help him in his last moments. And that turned out not to be the case."

‘Help me die’

Nebojsa was in hospital for three weeks before being referred to palliative care.

“One week into his stay at the hospital he expressed to me that he wanted to die.”

"When he asked me that question, 'Help me die? How can I please die?' That was probably one of the most challenging parts of my life.

“We talked about how euthanasia was not legal. The closest thing he could do was to not eat or drink water; so that’s when his ‘self-euthanasia’ began - he chose to not eat.

Birthday - and death day

Nebojsa died on 23 March 2016 on the day he turned 61.

"He made the decision [not to eat] every single day for about five weeks until he eventually passed away," Katarina said.

“If my dad had the choice of picking a day to die, so much of his pain, and our pain and anxiety, could have been avoided.

“I could have spent my time solely focused on him, knowing there is a specific day that he will pass, not wasting a single moment on anything else.”

Voluntary assisted dying

Katarina is now leading the fight to see a VAD law passed in the ACT. She is pleased that the ACT government has moved so quickly to draft and table a law, which is now part of a parliamentary review.

The draft law comes less than a year after the federal parliament lifted a 25-year-old ban preventing Australia's territories from legislating on voluntary assisted dying.

Katarina said it was "heartbreaking" that her father died before the law would be proposed in the ACT.

But she said if Nebojsa were here today, "he'd absolutely be smiling".

Katarina said, if passed, not everyone would want to avail themselves of the law, but it should be everybody’s right to choose.

“I believe it is absolutely necessary to allow all Australians, including Canberrans, the right to voluntary assisted dying."

She said the option would provide peace of mind for people who are terminally ill, knowing they have a choice not to suffer.

“I push so hard for it as I know my father wanted the choice so badly. And I want to grow old knowing that, if I am ever as unlucky as my father was, I will have the choice that my father never had - to die peacefully around family and friends.”