Northern Territory

Marshall Perron addresses the National Press Club in 1996

Marshall Perron is a former Chief Minister of the Northern Territory of Australia, and responsible for the world's first legislation to legalise voluntary assisted dying in restricted circumstances. The law came into effect in 1995 but was extinguished by federal legislation in 1996.

This video is Perron's pioneering address to the National Press Club in Canberra, prior to the Northern Territory legislation being extinguished.

 

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Plenty of misinformation will be advanced to oppose Senator David Leyonhjelm's Restoring Territory Rights Bill.

In 1996 the Northern Territory Rights of the Terminally Ill Act (ROTI) came into effect. Just four people had used the Act when seven months later an Act of the Federal Parliament extinguished the NT law, by cancelling the Territories’ authority to enact it.

This week, the Senate [federal parliament] debates the Restoring Territory Rights (Assisted Suicide Legislation) Bill, sponsored by libertarian Senator David Leyonhjelm. If the Bill passes both houses, the Territories will again have the authority to legislate the matter of assisted dying.

Opponents of lawful assisted dying have been sharpening their knives to ensure that Senator Leyonhjelm’s Bill fails and that Territorians remain second-class citizens. In this post I expose one of the desperate and disgraceful pieces of misinformation opponents use to try and curry fear about law reform.

Opponent signals

There are signals from many quarters that assisted dying opponents are dragging out the tired old argument that indigenous Australians are too fearful of assisted dying to allow reinstatement of the Territories’ legislative authority.

The signals are clear, though so far mostly behind the scenes. Nevertheless, they predict a full onslaught of invalid “fear” claims in the parliamentary debate this week.

Populist beginning of the misinformation

Since the NT ROTI Act there have been ongoing claims that indigenous (Aboriginal and Torres Strait Islander) Australians are wholly and deeply fearful of assisted dying law. A chief flag-waver of this proposition is Jesuit Priest Father Frank Brennan. He’s not only argued this line repeatedly in public, but promoted it to at least one parliamentary inquiry.

Fr Brennan likes to frame this argument to suggest that it’s uniquely substantive and persuasive, while other highly relevant information is merely “suggestion”.

“There was a suggestion these fears were whipped up by the churches and other conservative groups.” — Fr Brank Brennan

The “indigenous fears” opinion has been widely disseminated by other Catholics, including now-disgraced Fr John Fleming in a paper on behalf of the Catholic Southern Cross Bioethics Institute, and by Mr Paul Russell, Director of “HOPE”, a ginger group established by the Catholic Australian Family Association.

Classic cherry-picking

I’ve called out Mr Russell and others before for cherry-picking information to suit their arguments. And here we are again. In this blog, Mr Russell correctly reports that indigenous NT parliamentarian Mr Wes Lanhupuy voted in favour of the ROTI Act, but dismisses his vote as the result of “pressure”.

What Mr Russell disgracefully omits from his plug is that Mr Lanhupuy was directly involved in the consultation of indigenous communities, and said this in his parliamentary speech:

“The church has been a major voice. … I heard in the community that some of the churches were telling people that they should not support the bill basically because of their religious beliefs. No information whatsoever was given as a reason for that. No information was given whereby people could determine their own beliefs. That was disappointing.” — NT indigenous parliamentarian Mr Wes Lanhupuy (Hansard)

Disgraceful religious prejudice

But there’s more. At the time the federal parliament was debating its Bill to overturn the ROTI Act in 1997, the Senate Legal and Constitutional Legislation Committee conducted a formal investigation and published a Senate report, Consideration of legislation referred to the Committee: Euthanasia Laws Bill 1996. Its 204 pages make interesting reading.

For example, Mr Creed Lovegrove, a former senior Northern Territory public servant leading the Native Affairs Office, reported to the Senate Committee:

“I express my concern, not at the right of certain ideologists to have their say, but at the misrepresentations some were making to people over whom they have an emotional hold. Where this group happens to be Aboriginal, I believe some of the frightening lies they were told about the subject were a psychological and emotional exploitation of them, as blatant as any that has ever occurred in the Territory.” — p 44

…and reported to him by a group of senior and influential Aboriginals:

“They reckon the government is going to round up all the real sick people and those with V.D. and things like that and finish them off.” — p 45

…and on page 44 of the report, the Northern Territory government noted that at least one Aboriginal community wanted to hear the full story about euthanasia, not just the Church story.

Fake news — avoiding healthcare

There were also widespread claims that indigenous Northern Territorians were avoiding presenting to medical centres for healthcare for fear of being euthanased. However, the Senate report noted (p 52) that the claim was controversial, and that the Northern Territory government had provided statistics to show no significant decrease in presentations for treatment.

In a classic opponent manoeuvre when the data yet again didn’t fit the story, it was then claimed (p 52) that future data could show a decrease in presentations.

Morally bankrupt argument

But that’s a morally bankrupt argument. You don’t deny Jack the right to drive a car because Jill has an ill-informed phobia that Jack’s right is likely to contribute to her own death. Rather, the ethical approach is to provide Jack with his right and to provide Jill with education.

And that’s precisely what the NT government did. In today’s money, it stumped up $500k for education programs, and those programs were beginning to take effect. In testimony to the Committee, Reverend Dr Djiniyini Gondarra (opposed to the legislation) conceded that the education efforts had been somewhat effective in overcoming fears about the ROTI Act (p 52).

Ironic reverse discrimination

Perhaps one of the most ironic aspects of church-led fear of the ROTI Act was the Act’s “reverse discrimination” itself. The Act required, if the doctor and patient did not share the same first language, that a qualified and authorised translator be engaged before the patient might qualify for an assisted death.

Given the rarity of qualified and authorised translators, especially in remote communities, indigenous Northern Territorians would have had significantly less access to use the law than their white, city-based fellow citizens.

Putting it into perspective

Setting aside the dreadfully misinformed fear of assisted dying law and its stoking by churches, the question arises as to the prevalence of indigenous residents in the Territories: both Northern Territory and Australian Capital Territory. I’ve retrieved Australian Bureau of Statistics data from the 2016 census to answer that question (Figure 1).

 

indigenousterritorians.gifFigure 1: Australian Territory indigenous populations
Source: Australian Bureau of Statistics, 2016 census

Indigenous peoples represent a quarter of the population in the NT (25.5%), and a tiny minority (1.6%) in the ACT. Across the two Territories, that’s 10.3% of the population. Even if all the indigenous citizens opposed assisted dying law reform (which is clearly not the case), their impact on overall attitude would be minor.

By way of comparison, most national polls find around 12% of Australians opposed to assisted dying law reform. And, as I’ve factually demonstrated, almost all of that is faith-based. Such ‘fears’ are not a valid reason to prohibit others from pursuing a choice they deeply feel is moral and justified.

Playing the race card

Indeed, if opponents were intent on justifying the denial of a parliament to legislate for assisted dying on the basis of supposed indigenous attitude — playing the race card — then they must also by corollary campaign for the denial of State parliaments to legislate. That's because there are nearly four times as many indigenous Australians in NSW (216,170) and three times as many in Queensland (186,483) as there are in the Northern Territory (58,246) [2016 census data].

To argue one and not the other is to flip-flop.

Contact your Senators now

Church-whipped fear about assisted dying law amongst indigenous Australians is appalling and to be condemned, as is spreading false claims about a supposed reduction in presentations for medical care.

Senators will be inundated with false claims as they contemplate the Leyonhjelm Bill — including that indigenous Territorians are terrified of assisted dying law. (Lyeonhjelm’s Bill doesn’t legalise assisted dying: it only restores Territory parliament rights to consider the reform.)

It’s critical that Senators also hear from supporters of Territory rights — that Territorians not be treated as second-class citizens compared to State-based citizens.

To that end YOU can do something right now! Use the Go Gentle Australia submission page to send a message of support to your State or Territory Senators now. Go Gentle make it so easy, by showing you who your Senators are by merely entering your address.

Don’t delay! Here’s the link again.

 

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Disclaimer: I do not claim, suggest, imply or impute that any individuals named in this article were personally or individually responsible for, or were involved in, any misinformation being provided to indigenous Australians about assisted dying law.


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ABC journalists Jesse Dorsett and Eleni Roussos recently reported remarks made by the Northern Territory (Australia) Health Minister John Elferink, about the cost of supporting dying patients in the last year of life. Elferink said that dying patients could be personally persuaded to forgo medical treatment specifically in order to have more money available for their grandkids' 'opportunities'. Why is he wrong and what should he do about it?

Stating that "we've pretty much reached the limit of how old we can grow as a species", Minister Elferink estimated that elderly people with terminal illness cost the Northern Territory $1 million in health care costs in the last year of life. Even more astonishingly, he opined that the dying might be persuaded to obligingly shuffle off this mortal coil with the argument that "we can continue treatment but by discontinuing treatment your grandchildren would have a better opportunity" and "think of the work that could be achieved ... in the first year of life with $1 million".

He acknowledged that his remarks would be controversial.

No kidding.

Here are some reader comments from NT News:

"The Elf should be sacked. To say the seniors are a waste of money is abhorrent." — T. Miller

"Watch out Elf, you'll be old one day too." — Elli

"I worked all my life until 69 and paid taxes but judging from your comments us oldies are not worth saving." — Maree

"Hopefully he will lose his seat at the next election having shown us what an uncaring person he is. His statement is an insult to seniors and their loving families too." — Sue

What's wrong with his argument that ill seniors ought to nobly sacrifice themselves at the altar of general public 'good'? Plenty: but let's stick with just three, beyond the obvious fact that Northern Territory seniors are seriously offended by his comments and they vote.

Firstly, this is cheap dog-whistle politics that once again stupidly pitches one Australian against another (remember the infamous 'Leaners versus Lifters' campaign last year?) at the expense of insights and innovative solutions that satisfy everyone's needs.

Secondly, his estimate of the average cost of last-year-of-life medical costs beggars belief.

In a careful analysis of the cost of the last year of hospital care for New South Wales  patients, Kardamanidis and colleagues1 found they varied from around $7,000 to $18,000. For the sake of argument, let's use a round figure of $15,000. And, given these are 'hospital' costs (where most dying people end up) but don't cover everything like pharmaceuticals, home care and the like, let's double it to $30,000. That's fairly consistent with figures from the USA, and is likely to be replicated across Australia.

But, heck, the Northern Territory is a vast place with many remote communities, so let's toss in an extra average $20,000 for the Royal Flying Doctor Service on top. That's a total average of $50,000.

Yet John Elferink's 'estimate' is a jaw-dropping twenty times even that generous figure. Is he off with the fairies?

Kardamanidis' study adds another dimension to our insights, too. They found that the average cost of hospital care decreased with old age: $17,927 for 65–74yo; $14,498 for 75–84yo; $10,403 for 85–94yo; and $7,028 for 95+yo. The very elderly dying use hospital services far less than those less old.

The Minister's perceptions and ageist 'formula' for self-sacrifice is seriously at odds with actual evidence.

And thirdly, his superficial, combative assessment quite overlooks excellent and readily-available solutions. It's well-established that higher differential end-of-life healthcare costs are significantly associated with attemps at life-sustaining ICU interventions (e.g. a UK study by Hanchate and colleagues2).

But there's more. An extensive multi-centre USA study by Zhang and colleagues3 reveals that simply by having better conversations with their doctors, advanced cancer patients not only reduced the amount of medical interventions, but achieved better quality of death.

By improving real conversations about the the likelihood of futility versus effectiveness of medical interventions at the end of life, balanced with information about the invasiveness or burden of enduring them, patients themselves can avoid interventions they judge to be of no net value, or even counterproductive.

So, Minister, quit the ill-informed and cheap political shots. Seek informed and practial advice and get on with the job of governing for all Territorians. Implement policies that encourage and facilitate real and meaningful conversations between patients and their doctors at end of life. The health bill will naturally go down for ethically sound—rather than ethical stink-bomb—reasons.

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  1. Kardamanidis, K, Lim, K, Da Cunha, C, Taylor, LK & Jorm, LR 2007, 'Hospital costs of older people in New South Wales in the last year of life', Medical Journal of Australia, vol. 187, no. 7, pp. 383-386.
  2. Hanchate, A, Kronman, AC, Young-Xu, Y, Ash, AS & Emanuel, E 2009, 'Racial and ethnic differences in end-of-life costs: why do minorities cost more than whites?', Archives of Internal Medicine, vol. 169, no. 5, Mar 9, pp. 493-501.
  3. Zhang, B, Wright, AA, Huskamp, HA, Nilsson, ME, Maciejewski, ML, Earle, CC, Block, SD, Maciejewski, PK & Prigerson, HG 2009, 'Health care costs in the last week of life associations with End-of-life conversations', Archives of Internal Medicine, vol. 169, no. 5, pp. 480-488.

 

Update 25th August

Minister Elferink phoned me directly to put his case. We had a respectful if brief conversation (he was in a Parliamentary session). He said that the journalist's report had misrepresented his statements. We agreed that at the very least, the remarks he made were injudicious in the context of end-of-life, and I reiterated that I thought suggesting in any manner that people should give up part of their lives for the economic benefit of others was repugnant. I also reiterated that should the NT Government choose to invest a modest sum in the education of doctors in how to hold respectful, open conversations with patients and in a way that the truly listened to both what was being said as well as left unsaid, that patients would far less often choose futile and burdensome treatments they really didn't want. This would lead to less stress on the patient, their families and healthcare workers, and have the added benefit not only of a better quality of death, but a significantly reduced state healthcare budget.

I hope the Minister takes good evidence and advice on board, and adjusts his stance and the NT Government's approach to medical end-of-life decisions.


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