Draft bill to give NSW residents right to voluntary assisted dying

Anne and Paul Gabrielides at their Winmalee home. Anne suffers from motor neurone disease and can no longer speak. Picture: Wolter Peeters

Anne and Paul Gabrielides at their Winmalee home. Anne suffers from motor neurone disease and can no longer speak. Picture: Wolter Peeters

Each day, breathing and swallowing become more difficult for Anne Gabrielides.

She has largely lost control of her hands, and faces eventually having to communicate via technology that tracks her eye movements.

Ms Gabrielides was diagnosed with motor neurone disease in July last year and has recently lost the ability to speak.

"That kind of survival isn't what I want," Ms Gabrielides told Fairfax Media during an interview in which she responded to questions by typing on her iPad.

"Along with that is the difficulty of breathing and swallowing every day. I want to suck up as much of life as possible, but there will come a time when I will want to say, 'No, that's enough'."

The 53-year-old wants the legal right to end her life with medical assistance at the time of her choosing and has the support of her husband, Paul, their twin sons Michael and Christopher, 31, and daughter Eleni, 20.

Read more: The big sleep

Terminally ill NSW residents over the age of 25 would have the legal right to end their own lives with medical assistance under draft legislation expected to be introduced to state Parliament within months.

To qualify under the draft Voluntary Assisted Dying Bill, the patient would have to be, in "reasonable medical judgment", expected to die from their illness within 12 months and be experiencing "extreme pain, suffering or physical incapacity".

The decision must be signed off by two medical practitioners, including a specialist, and the patient assessed by an independent psychiatrist or psychologist to guarantee they are of sound mind and the decision made of their own free will.

Other safeguards in the draft legislation include a 48-hour cooling-off period, the patient's ability to rescind the decision at any time and the right for close relatives to challenge patient eligibility in the Supreme Court.

A cross-party working group of NSW MPs will unveil the draft bill for public consultation on Tuesday, with the aim of introducing it to Parliament in August for debate shortly afterwards.

The bill is the result of two years' consultation by the working group comprised of Liberal MP Lee Evans, Nationals MLC Trevor Khan, Labor MLC Lynda Voltz, Greens MLC Mehreen Faruqi and independent MP Alex Greenwich.

Ms Gabrielides will be attending the bill's launch on Tuesday at NSW Parliament House. She and her husband are petitioning MPs for their support.

She has launched a change.org petition imploring NSW MPs to support the voluntary assisted dying legislation.

On Monday, the petition had been signed by more than 40,000 people.

Asked for her message to NSW MPs, Ms Gabrielides said: "Until you have this impact your life you don't know why this is so important."

Mr Gabrielides acknowledged that some MPs might be concerned that the legislation is the "thin end of the wedge" and could be expanded.

But he argued: "Politicians shouldn't fear that anyone with a terminal illness wants to go early. They don't. They want every last bit of wine and every last kiss."

Shayne Higson, spokeswoman for the right-to-die advocacy group Dying with Dignity NSW, said the draft bill contained "basically the tightest eligibility criteria in the world and the most safeguarded process for making a request for assisted dying".

While supporting the bill, Ms Higson raised a question about the fairness of the eligibility age of 25, given similar legislation internationally stipulated 18 years.

The MPs' working group decided on the age of 25 in light of medical evidence that some executive functions of the brain relating to rational decision-making do not mature until then.

In an opinion piece for Fairfax Media, the group says: "Whilst society may shy away from talking about the end of life we can no longer ignore giving those patients with terminal illnesses the right to a dignified death."

But a spokeswoman for the Catholic Archdiocese of Sydney said activists should be advocating for more resources to be placed into palliative care.

"Legalising euthanasia is not death with dignity, and introducing a law which would define killing as a form of medical treatment would have consequences for all Australians, not just those who would use such a law to end their lives," she said.

"And these consequences would exist no matter the 'safeguards' put in place."

smh.com.au

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