December 20, 2017

Living with the dying law: euthanasia tensions linger

The Australian, Samantha Hutchinson

Cath Ringwood is angry. The 67-year-old former palliative care nurse is racked with pain from her arthritic knees and fed up trialling invasive treatments for her chronic lymphocytic leukaemia.

It has been a long 20 years of serious illness for the euthanasia supporter, but the past 18 months have been tougher than most.

Late last month Victorian MPs gave the final tick of approval to a controversial voluntary assisted dying scheme after 1½ years of inquiries, independent panels and a mammoth 100-hour parliamentary debate.

The scheme, which is the country’s first euthanasia program in more than 20 years, gives terminal patients of sound mind and a life expectancy of less than six months the ability to choose when they die.

Depression sufferers and patients with Alzheimer’s, dementia and other diseases that impair the mind are excluded.

Patients with motor neurone disease and a host of neuro­degenerative diseases face a lower bar and can opt in with a life expectancy of 12 months.

Its proponents cast the scheme as the most conservative in the world. Already, other state governments are eyeing off the legislation in preparation of euthanasia debates of their own.

But for Ringwood, who is excluded from the scheme because her doctor says she still has treatment options, it’s as if the debate has amounted to nought.

“It’s a big shift but it’s not nearly big enough,” she says from her home in Heidelberg in Melbourne’s north.

“It’s hard legislation to draft and you’ve got to hand it to the government for at least coming to the party, but the scheme excludes so many people who are in the worst pain, who are tired and they just want to go.”

Her anger isn’t uncommon among the thousands of ageing Australians suffering debilitating but non-terminal diseases or the legions who euthanasia pioneer Philip Nitschke describes as the “well elderly” who simply want to be the ones who decide when it’s time to call stumps.

But Victorian Premier Daniel Andrews and MPs who supported the legislation are adamant they’ve got the balance right with a landmark bill that provides relief where the best palliative care cannot, with 68 safeguards and steep penalties to prevent coercion and misuse.

Neurosurgeon and former Australian Medical Association head Brian Owler took the lead drafting the bill, choosing as a guide the law devised in the US state of Oregon that has operated for more than 20 years.

Forget scope creep and slippery-slope arguments, he says. The Oregon model hasn’t sustained a single change in its two decades of operation. He believes it’s proof a system can operate, for many years, as it was intended.

Similarly, the model stood in stark contrast to those in The Netherlands, Belgium and other jurisdictions that give access to patients who may have some health but who are tired of life.

The Victorian scheme would have the same strict entry criteria but targeting only terminal patients in their final months.

And it worked. Upper house MPs passed the bill with 22 votes to 18 at the end of a 28-hour sitting on November 22.

Standing on the steps of parliament immediately after the vote, Andrews said that too many Victorians had been left racked with intolerable pain at the end of their lives and their needs had been overlooked. Access to a voluntary assisted dying scheme was the missing piece in the state’s health system, he said.

“It’s about providing for those who have for too long been denied a compassionate end, and the control, the power, over the last phase of their journey.”

Now passed, Victoria’s voluntary assisted dying scheme will admit its first patients in June 2019.

An 18-month implementation program is already under way to nut out crucial details including which lethal drugs will be prescribed to patients, how pharmacists will hand them over and other guidelines dictating how the drugs can be stored in people’s homes.

The scheme is notable for its heavy focus on patients being able to administer the drugs themselves. Doctors will be authorised to administer the drugs only in exceptional circumstances — such as oesophageal cancer — for which patients will need a separate permit.

The scheme’s architects have indicated early on that the program will likely rely on compounding pharmacists who have the expertise to prepare and tailor for patients individual lethal cocktails, from barbiturates, sedatives and other heavy drugs already approved for use in Australia.

The government also could proceed with a new process to get local Therapeutic Goods Administration approval for Nembutal, a powerful, lethal barbiturate used in euthanasia schemes around the world but not approved for human use in Australia. Other details were nutted out during the parliamentary debate. A raft of amendments introduced in the upper house increased the safeguards by mandating mental health checks for patients with a history of depression. Another amendment gave a greater role for patients’ GPs in the application process for the euthanasia scheme.

A crucial amendment passed attempted to stamp out the prospect of “death tourism” by requiring patients to prove they had lived in Victoria for at least 12 months before submitting their application.

Still, there is deep uncertainty over how the scheme will operate in practice.

Whether doctors and pharmacists will participate is another question.

A survey of more than 4000 doctors conducted by the AMA in March last year revealed about three-­quarters believed that palliative care couldn’t treat all pain but less than half would be prepared to assist patients with voluntary euthanasia.

The AMA relied on the survey results, in addition to the World Medical Association’s staunch opposition to euthanasia and assisted dying, to rally against the scheme. It argued the medical profession’s role in healing the ill would be compromised if its members were also expected to help people die. Deep opposition lingers within the medical and palliative care community, and among the Catholic and faith-based groups that deliver the bulk of the state’s hospital and aged-care services.

The AMA remains resolutely opposed, as does Victoria’s palliative care peak body, Palliative Care Victoria.

Catholic Archbishop of Melbourne Denis Hart has ruled emphatically that no Catholic care provider will assist with the scheme.

Collectively, Catholic healthcare providers across the country provide one in 10 aged-care beds, and one in 10 hospital beds.

St Vincent’s Health is the state’s largest palliative care provider and owns four hospitals in Melbourne alone, including the publicly funded St Vincent’s Hospital Melbourne, which treated 54,000 inpatients last year.

While the euthanasia scheme has provisions for healthcare providers to decline to take part, they are still obliged to refer patients to services that will help them.

Victorian Health Minister Jill Hennessy has batted away suggestions that opposition within the medical community could hobble the scheme from the start with a lack of practitioners helping people to enter the program.

“We are confident we will have the workforce needed to provide access to a voluntary assisted dying scheme should it become law,” she repeatedly told The Australian throughout the debate.

Others have argued that an absence of detail about which drugs could be used, and the lack of availability of Nembutal — universally considered to be the most appropriate drug for euthanasia — could emerge as a bigger problem.

Federal Health Minister Greg Hunt has said he will not help or hinder the legislation, which includes taking any steps at a federal level to block or facilitate TGA approval for Nembutal or changing any laws that could make it more readily available.

Even so, he remains resolute in his opposition to the scheme.

“The underlying principle of our investment in health services is quality of life and this includes during end-of-life care,” Hunt told The Australian.

“The federal government believes that people should have access to quality palliative care and relief from pain.”

But even as the implementation program continues, critics highlight that a state election stands between the incumbent government and the scheme’s start date.

“It could be crisis averted,” the Australian Christian Lobby’s Victorian head, Dan Flynn, says.

“This doesn’t start until June 2019 and there’s an election in November and if sufficient opponents to this bill were elected to the lower house, this bill could be repealed before it is ever implemented.”

Standing more than 182cm tall, Flynn cut a notable figure throughout proceedings, watching from the public gallery even as the debate stretched into the early hours of the morning and longer.

The Premier gave him assur­ances before the 2014 election that he would not support any push for euthanasia or assisted dying in office. Flynn will not forget the broken promise.

Micro parties including the Australian Conservatives and the Democratic Labor Party echo the statement, and say they are incensed the government never had a mandate to float the bill in the first place.

The Premier has been frank throughout the debate that his support for voluntary euthanasia was forged only after witnessing his own father experience a “good” death on Anzac Day 2015. It was a dignified end that too many Victor­ians missed out on, he says.

Crucially, his change of heart occurred long after the 2014 election, and after he had written to the Australian Christian Lobby and conservative groups assuring them that an Andrews Labor government would not support euthanasia or ­assisted dying. This will be a key argument they will use against Labor in the approaching election.

But the fallout is expected to affect MPs across the political divide.

Both the Australian Conservatives and the DLP say they were bitterly disappointed to see some Liberal and Nationals MPs vote in favour of the bill, and as a result they are now reconsidering preference deals in some seats.

DLP Victorian state president Frances Beaumont says the party could use preference deals to penalise Liberal and National MPs who supported the bill.

“We would always look carefully at how people voted and this could very well have an impact on how we preference people,” she says. “This is still a very important issue.”

Outwardly, the Coalition has shown a weak appetite to challenge or repeal the legislation under a new government.

But more quietly, some party members say they are aware MPs who supported the bill could face challenges during preselections and could also be hurt by preference flows.

Liberal veteran Robert Clark believes there is an argument to be made about the parliamentary process in which the bill was rammed through both houses, which could weaken its legitimacy under future governments.

Within parliament, there is lingering resentment in some camps that MPs were forced to endure three all-nighters debating the bill, including one which only ended when an MP was rushed to hospital after collapsing in his office.

“The way this bill was developed and pushed through the parliament was an embarrassment to Westminster democracy,” Clark told The Australian.

“This wasn’t a careful consideration of the merits by individual MPs.”

But critics and supporters of the scheme are unanimous that the bill is likely to be the single biggest legacy of the Andrews government, which proudly calls Victoria the most progressive state in the country.

While NSW in November voted down a private member’s bill in the upper house proposing its own voluntary assisted dying scheme, a new legislative push is expected in Queensland, where Labor members voted at a July state conference to proceed with an assisted dying bill.

Separate moves are being made in Canberra by Greens leader Richard Di Natale, who has pledged to pursue a national euthanasia bill next year. It could become a framework for each state to launch its own legislation, he says.

Meanwhile, Liberal Democrat David Leyonhjelm will continue to pursue a bill that would pave the way for the ACT and the Northern Territory to have their own debates on the issue.

In Victoria, MPs say they are glad the bulk of the work is over.

“For me there’s relief, there’s no doubt about that,” says Liberal MP Simon Ramsay.

The country MP endured unenviable pressure from within his own party as just one of four Liberals to eventually support the bill in the upper house.

Ramsay was late to disclose how he would vote and was frank from the start that he needed to be won over with amendments that halved the entry point to a life expectancy of six months from a previous threshold of 12 months, and other changes that included a pledge to boost palliative care funding, particularly in regional areas.

“It was a very highly charged debate,” Ramsay says. “There was a lot of passion from sides, strong religious beliefs, strong values that were fighting very, very hard to oppose and to support the bill.

“It was a time-and-place thing and it wasn’t easy. I’m still convinced that I made the right ­decision.”