Voluntary Assisted Dying Likely to Pass in NSW, Says Dying With Dignity’s Shayne Higson

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Voluntary dying

NSW is now the only Australian state that doesn’t let people undergoing excruciating pain at the end of their lives undergo a process of voluntary assisted dying, in order to ease the pain of their own suffering, which in turn, alleviates that of their loved ones.

But this could soon be rectified. The Voluntary Assisted Dying Bill 2021, which was introduced into state parliament by Sydney Independent MP Alex Greenwich in October, passed the NSW lower house on the last sitting day of the year, with an overwhelming majority of MPs supporting it.

Indeed, with a total of 28 members of parliament co-sponsoring the bill, this, it sees the highest ever number of co-sponsors supporting the one piece of legislation in the history of Australian parliaments. And the list of sponsors reveals support from right across the political spectrum.

As Greenwich explained on the day of the successful passage of the bill, it’s “similar to voluntary assisted dying laws that have been operating in Victoria since 19 June 2019, where there have been no cases of pressure or duress, no access from ineligible people and no misuse of the substance.”

A brief history of these laws

Victorian Reason MLC Fiona Patten initiated the parliamentary inquiry in her state, which led the Andrews government to legalise the process in June 2017.

As part of their investigation, Patten and the rest of the inquiry members travelled to jurisdictions in Europe and North America where such laws had long been operating to get a firsthand understanding of their impact.

From there, Western Australia passed its own bill in late 2019, which the NSW laws have largely been modelled on, Greenwich has outlined. While Queensland, South Australia and Tasmania all passed their own sets of voluntary assisted dying laws earlier this year.

Yet, our nation’s history with legal voluntary assisted dying goes back much further.

Australia was the first country in the world to legalise voluntary assisted dying in May 1995, when the Northern Territory parliament legalised the process. And Dr Philip Nitschke became the first doctor globally to legally assist a patient to end their life in September 1996.

However, there were some conservative elements from both major parties in federal parliament that weren’t happy with these laws having passed. And as the Commonwealth has the power to overturn territory laws, the Howard government did just that in early 1997.

A compassionate way

The Greenwich bill is currently under the review of the Legislative Council Standing Committee on Law and Justice. Its hearings took place over three days, with the last having taken place on Monday. And members from key advocacy group Dying With Dignity NSW testified at the hearings.

Dying With Dignity NSW vice president Shayne Higson was one of those who gave evidence at the hearings, and she outlined the “cruel and harrowing” experience her mother endured when she passed away in 2012, due to the lack of options she had to end her suffering.

Sydney Criminal Lawyers spoke to Shayne Higson about why our state remains the last without these compassionate laws, how the proposed voluntary assisted dying process would work in NSW, and her expectation that the laws will likely pass the upper house early next year.

Dying With Dignity NSW vice president Shayne Higson campaigning outside NSW parliament
Dying With Dignity NSW vice president Shayne Higson campaigning outside NSW parliament

Shayne, you testified at the initial day of the parliamentary inquiry into the Voluntary Assisted Dying Bill 2021 on 8 December, and you’ve been watching the second two days of hearings online.

How would you sum up what transpired over the three days of hearings?

It was an interesting process to watch. I watched all of the evidence presented over the three days. The committee heard from 79 witnesses altogether.

Although there was a mix of supporters and opponents of voluntary assisted dying on the Standing Committee on Law and Justice, there were 50 percent more opponents giving evidence, rather than supporters.

And more than two-thirds of these opponents were either religious leaders from a variety of churches or people representing faith-based health providers.

Despite being outnumbered at the hearings, I felt that the evidence given by people on our side of the debate was more evidence-based.

Most of the opponents didn’t address the provisions of the bill itself, but they opposed the whole idea of voluntary assisted dying and mainly used the sanctity of life argument.

By far the most compelling evidence was given by six people who had witnessed the bad death of a loved one.

It was incredibly heartbreaking to hear their testimonies, even though I’ve personally read thousands of case studies like the ones given.

Seeing them in person describing in detail the horrendous suffering that their loved ones endured really took an emotional toll on everybody on that first day.

Many of us who gave evidence in support of the bill asked the committee to always consider the effect on terminally ill people when considering the assisted dying legislation.

So, hopefully, when they are following the rest of the process of the inquiry, they will remember that harrowing evidence, and not turn their back on those people and the people who have died in that way.

The bill passed the NSW lower house on 26 November, following a number of amendments having been made, one of which was applied. So, at this stage, what do the laws provide?

The NSW lower house actually passed a number of amendments, but it sounded like it was just one because they dealt with them in globo: a term that means as a unit rather than separately.

There were over 160 amendments put forward, many at the last minute, with two days of debate to go before parliament finished for the year.

So, we were doubtful that we’d get through that stage of the debate, where each clause has to be debated on separately and each amendment put forward has to be discussed and voted on.

But by dealing with the amendments that were accepted by the co-sponsors and other supportive MPs in globo, it meant that it only left the amendments from opponents.

It was interesting to see after the long process of discussing each amendment, that it reached a point where one opponent, Alister Henskens, withdrew 49 amendments, which was his whole package of amendments.

I’m not sure whether it was that he could see from the package of amendments that were passed beforehand that he wasn’t going to be successful and that’s why he decided to pull the plug.

But it was a huge relief to have that bill pass through the lower house before parliament finished.

The Voluntary Assisted Dying Bill 2021 is similar to the laws that have been passed in every other Australian state.

It aims to give people who are at the end stage of their illness, and have suffering that cannot be alleviated, a safe legal framework to end their lives at a time and place of their choosing.

It’s very narrow in scope. Only adults diagnosed with a terminal illness that will cause death within six months or twelve months for neurodegenerative conditions, and those experiencing suffering as a result of a condition, are able to access voluntary assisted dying.

There are strict provisions to ensure that the person has the capacity to make and understand the consequences of the decision, and they have to be acting voluntarily without pressure or duress.

There are also residency requirements similar to the ones in other states. So, a person has to be an Australian citizen, or a permanent resident.

But an improvement is that the laws apply to people who have lived in Australia for at least three continuous years, and who ordinarily live in NSW.

That is a compassionate improvement because we do know that there were some people in Victoria who couldn’t find their paperwork to prove their citizenship and they died before they were able to access the law.

So, the bill includes a rigorous process that the person has to go through in order to determine their eligibility and ensure that the request is enduring.

They have to be assessed by two independent and experienced doctors against the eligibility criteria covering the diagnosis, prognosis, suffering, decision-making capacity and residency.

They have to make a written request in front of two independent witnesses. And then the coordinating practitioner has to do a final review and submit paperwork to the Voluntary Assisted Dying Board for authorisation before the substance can be prescribed.

Unlike the Victorian law, the NSW law would allow for the person to choose between self-administration or having a health practitioner administer the substance.

It is voluntary for all participants, so not just the dying individual, but doctors and other healthcare practitioners will be able to conscientiously object.

The bill provides religious facilities rights to set policies to not take part in voluntary assisted dying. So, the NSW bill balances the rights of the patients who are living in residential facilities against the rights of the facility.

It outlines processes that have to be followed in these cases, whereas the Victorian bill and the Western Australian bill didn’t address the conscientious objection of a facility.

So, there are advantages in being the last state to legalise voluntary assisted dying.

Alex Greenwich and the others who worked on the bill were able to look at how the Victorian law was working in practice, as well as improvements that were made in the legislation that came after it in other states and make improvements from there.

Independent MP for Sydney Alex Greenwich introduced the Voluntary Assisted Dying Bill 2021
Independent MP for Sydney Alex Greenwich introduced the Voluntary Assisted Dying Bill 2021

You’re the vice president of Dying With Dignity NSW, which is an advocacy organisation specifically created to campaign for voluntary assisted dying to be legalised in this state.

So, why are these laws so important?

Legalising voluntary assisted dying is important because even with the best efforts of palliative care, there are some terminally ill people who are forced to endure the unbearable end stage of their illness, which some people describe as torture.

My mum described it as torture.

Opponents have argued that if everyone had access to gold standard palliative care, this law would not be needed.

But we know from the thousands of testimonies that have been sent to MPs over the past four years, even with the best palliative care, there is a small but significant number of people who will experience terrible deaths.

That impacts not just the dying patient, but also their family and other carers.

Another reason for legalising assisted dying is that a lot of people who are facing this unbearable end of life suffering decide to take matters into their own hands to avoid the end stage of the illness, and those suicides are lonely, often horrific and devastating for families as first responders.

Dying With Dignity released data earlier this year that showed that 20 percent of suicides of people over the age of 40 in NSW in 2019 were by people with a terminal or debilitating condition, or people who have experienced a significant decline in physical health.

That is another good reason to legalise assisted dying, to give these people a much more compassionate option.

And although opponents try to argue that legalising assisted dying will change our society forever, under the current law our society already allows someone with a terminal illness and intolerable suffering to hasten their death by refusing all treatment, including food and water, and basically starve and dehydrate themselves to death.

So, in the absence of voluntary assisted dying laws in NSW, family members, carers, doctors and nurses – everyone – has to accept a person’s decision to begin what is a long and psychologically cruel process.

It is legal for someone to choose to hasten their death in that way, or by suicide – suicide is legal – but it’s devastating for everyone involved.

So, in contrast, voluntary assisted dying laws would give a dying individual the more compassionate option of dying quickly and peacefully, and at a time and place of their choosing, usually surrounded by their loved ones.

Dying With Dignity NSW was established in 1983. Today, NSW is the only state in the country without laws providing this option for people at the end of their lives.

In your opinion, why are we still having this debate in this state?

There have been over 50 voluntary assisted dying bills debated in parliaments across Australia since the early 1990s. All of them, up until the Victorian bill, were private members’ bills.

So, although support for the law reform has been steadily increasing over many decades, it was only when the Victorian government put forward a bill that people felt that it really had a chance of succeeding.

So, all the attention in 2017, was on the Victorian debate, but, at the same time, here in NSW, we had a bill in parliament that was drafted by a cross-party parliamentary working group and Dying With Dignity NSW lobbied for and supported that legislation, and we came very close.

Just a few weeks before the Victorian law passed, the NSW bill failed in the upper house by just one vote.

With private members bills there seems to be only one attempt per term of parliament. So, in the space of time from the 2017 bill, in the four years that have passed, all these other states had their own bills come forward, and fortunately, Tasmania’s was the first private members bill to pass.

We had the Victorian bill, which was a government bill. Western Australia passed its government bill in 2019. But the Tasmanian bill showed that private members’ bills can succeed.

Then South Australia had a private members bill, while in Queensland, it was another government bill.

So, there’s an explanation as to why NSW ended up being last. But also, we still have a very conservative parliament. A lot of members have some religious faith that can influence them.

We’re happy with the result in the lower house. Even with those people who do have a religious faith, a lot of them decided to put their personal views aside and listen to their constituents and supported the bill.

The Victorian laws came into effect in June 2019. In your understanding, what sort of impact has legal voluntary assisted dying had in that state?

All official reports from the Voluntary Assisted Dying Review Board indicate that the laws are working as intended. They’re providing a compassionate end of life choice to people at the end stage of their illness with unbearable suffering.

There have been over 330 people who have accessed the law over two years since it’s been operating.

The reports from family members indicate that the dying loved one was incredibly grateful for being allowed this option, and the family members left behind have described the deaths as “perfect” in some cases.

So, the effect has been as advocates for assisted dying have always predicted: the numbers are small, but for those people who needed the option, it is greatly appreciated.

And lastly, Shayne, the Voluntary Assisted Dying Bill 2021 has the highest number of MPs co-sponsoring it in the history of any Australian parliament, while Dying With Dignity NSW organised a petition that garnered over 100,000 signatures in support of it.

So, what are you expecting to happen from this point onwards?

We have to wait to see the final report from the inquiry. The public hearings are finished, but the committee will work over the coming months. Their report is due to be delivered on the first day that parliament resumes, the 22nd of February.

We are hoping that’s a positive report and the bill will be introduced into the upper house at the beginning of the parliamentary terms next year. And we’re expecting that it won’t drag on.

There is a feeling within parliament to get this done. Next year will be one year out from an election, and neither of the major parties will want this to become an election issue, and they’ve also got to deal with byelections early next year.

Despite the fact that both the premier and the leader of the opposition personally oppose the legislation, there should be a consensus in the parliament to get this done.

We are expecting the numbers to be tighter in the upper house but considering the significant majority that the bill passed with in the lower house, it would be very surprising that the upper house would try to block it.

But we can’t take anything for granted. We literally missed out by one vote in 2017.

So, Dying With Dignity will continue our work through the Christmas break, and do all we can next year to make sure the members of the Legislative Council consider the evidence, as I said, there was a lot of talk during the hearings, but not a lot of it was evidence-based.

We have got to hope that the members of the upper house focus on the evidence, look at the laws that have been operating safely overseas, and now in Victoria and Western Australia as well, and bring NSW into line with the rest of the country.  

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Paul Gregoire

Paul Gregoire is a Sydney-based journalist and writer. He's the winner of the 2021 NSW Council for Civil Liberties Award For Excellence In Civil Liberties Journalism. Prior to Sydney Criminal Lawyers®, Paul wrote for VICE and was the news editor at Sydney’s City Hub.

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