Voluntary assisted dying will be legal in NSW from today. Mark wants the choice to end his life

NSW resident Mark Butler lives with MND.  (ABC News: Brendan Esposito)

This morning, Mark Butler will call his doctor and make a simple request — to die with dignity.

Sitting in his wheelchair in his brick 1970s apartment in Sydney, Mark has spent months counting down the days to November 28.

He wants to be one of the first to access voluntary assisted dying (VAD) as new laws are introduced in New South Wales today.

The 67-year-old lives with motor neurone disease and is in constant pain.

Paralysed from the neck down, he uses a motorised wheelchair and needs 24-hour care.

“I get put to bed at night, position repositioned, I use a hoist to get out of bed, put into this wheelchair during the day,” he said.

“It’s ongoing, it never stops … it is 100 per cent boring.”

For MND patients, weakening muscles in the face and throat can lead to loss of speech.

It can also cause choking and death.

Before the introduction of voluntary assisted dying, Mark said he feared he would die struggling to breathe.

Mark loved swimming, yoga before MND diagnosis

The descent into MND was swift for Mark, who was officially diagnosed with the disease in early 2017.

“It was like a virus spreading right through my system,” he explained.

Before he was diagnosed, Mark was working full-time in heritage architecture and studying his masters. He was fit, healthy and had a busy social life.

“I was swimming three times a week, doing yoga twice a week, doing Pilates twice a week,” he said.

“I really, really … miss swimming so much … it clears the mind.”

Now, the only time he leaves his apartment is to sit in the garden once a week.

“I hadn’t been out the front door for about nine months, and the neurologist was saying to me, ‘you need to really go outside’,” he said.

“So, I go to the garden every Tuesday afternoon and have a bit of sunshine.”

Losing his voice will be the “deal-breaker” for Mark, and he wants to be able to make the decision to end his life on his terms.

“I’m going to indicate with my head and just sort of say, ‘I’m ready to go’,” he said.

“I just want the medication here on hand, so that when I’m ready, I can just sort of say, ‘OK, time’s up.'”

NSW the last state to enact laws on VAD

Voluntary assisted dying is legal in Australia’s most populous state from today, with a shorter wait time than in other jurisdictions and a choice of how the life-ending drugs are administered.

An online portal will open at 6am for practitioners and patients to begin the process of applying for access.

Under the legislation, two requests need to be made to two different practitioners, including one request in writing.

The state joins Victoria, Western Australia, Tasmania, Queensland and South Australia in giving eligible residents the right to die, with the ACT and Northern Territory both moving towards legalising euthanasia.

A key difference is the cooling-off period of five days in New South Wales. It is nine days in all other states, except Tasmania, where the wait is seven days.

End-of-life legal experts say the shorter time frame is a positive for NSW patients.

“The thinking here is that if a patient meets the eligibility criteria, and is terminally ill and suffering … then requiring patients to wait through that eligibility period for that cooling-off period to expire prolongs suffering,” QUT Professor Ben White said.

But it remains to be seen whether New South Wales will have enough doctors to meet demand.

“In other states, one of the big challenges has been practitioner numbers, where there’s enough willing doctors who are able to, who are trained and [are] able to provide voluntary assisted dying,” Professor White said.

Health department ‘optimistic’ on practitioner numbers

New South Wales Health confirmed to the ABC that about 100 doctors will have completed all authorised training by Tuesday.

About 200 were still being trained.

“We’re confident … with the number of practitioners that have put up their hand for the training and that are going through the process,” NSW Chief Health Officer Dr Kerry Chant said.

“We’re very optimistic … we will have adequate numbers of practitioners to cater for the demand.

“We are expecting that the demand will be actually quite strong, particularly in those first few weeks.”

It is unclear how many trained doctors will provide services in regional local health districts.

“I’m actually optimistic that we will actually, in most areas, have quite a strong workforce and be able to deliver the service locally,” Dr Chant said.

“However, if there are gaps in service delivery, we have recruited a central team that sits within Royal North Shore Hospital.

“That access team can actually fill any gaps where there might be difficulties in accessing a voluntary assisted dying authorised practitioner in a particular regional area.”

Safeguards reflect other states

Like other states, approval in NSW is a two-doctor process.

An applicant’s illness or medical condition must be expected to cause death within six months, or 12 months for a person with a neurodegenerative disease, for them to be eligible.

But, unlike in other states, a person can choose to have the life-ending drug delivered by a medical professional even if they have the ability to self-administer.

Professor White said New South Wales had the benefit of learning from other states before enacting its own law.

“That’s one of the positives of the New South Wales legislation that allows patients themselves to make that choice as to the sort of assistance they’d like … self-administration or practitioner administration,” he said.

Professor White said with VAD now legal for 98 per cent of the population, the next barrier at a national level was the Commonwealth Criminal Code.

It prohibits the use of telehealth, email and all electronic internet to provide voluntary assisted dying consultations.

“We’ve conducted 140 interviews with patients, families, doctors, nurses and regulators across three states, and this emerged as a massive issue,” Professor White said.

“It requires, often, patients to travel, sometimes many hours, to doctors … and that journey can be both distressing and arduous.

“Alternatively, it requires practitioners, busy practitioners, including medical specialists, to sometimes travel for hours and hours to go and visit a patient.”

The code also applies to emailing a VAD prescription.

“It actually has to be mailed or hand-delivered or couriered, it can’t be emailed or can’t be faxed, and this again results in delays and slows down access to voluntary assisted dying,” said Professor White.

“It just causes delay and suffering for eligible patients.”

NSW and other states are in talks on the code.

“Those discussions are happening across government, across attorneys-general in health … clarity to the Criminal Code and how it intersects with voluntary assisted dying is something we … would want,” Dr Kerry Chant said.

“In the early stages, our clinicians will feel most comfortable with that face-to-face, but that may evolve.”

Mark Butler said it was important people in New South Wales had the right to assisted dying.

“You don’t have to support it 100 per cent, but you have to understand that people need that option, you know, and if things get too bad,” he said.

“Don’t be afraid of it. It’s important.

“People who are in my position need to be able to make that decision for themselves.”