By Richard Trudgen

OPINION: Not many people know a side of the euthanasia story that affects a large proportion of the Northern Territory’s population.

Wesley Wagner Lanhupuy was the Labor member for Arnhem in the Northern Territory Legislative Assembly from 1983 until his resignation in 1995. He died shortly after the by-election that was triggered by his resignation.

He resigned after being convinced by the then leader of the Country Liberal Party, Marshall Perron, to cross the floor and support the original euthanasia legislation in the Northern Territory Legislative Assembly, the Rights of the Terminally Ill Act 1995.

It soon became clear to Wesley that his Yolngu constituents from north-east Arnhem Land were deeply fearful of this law; many were refusing medical treatment, and others were walking out of hospital, fearing they could be euthanised. Whenever there was a staff shift change, or when medical equipment was used in their treatment, they became suspicious and wanted out.

The shame of it led him to withdraw over $200,000 and go on a massive drinking spree, which ended in his early death. He became the first victim of that legislation.

What is happening now

The member for Mulka, Yingiya Mark Guyula, who has just resigned, repeatedly cited the NT Government’s inability to listen as a reason for his resignation. Like Mr Lanhupuy, he knows his constituents are neither consulted nor listened to when it comes to how they understand what is happening in the mainstream English-speaking community, or what is needed to resolve issues in their Yolngu communities.

They, along with many other Aboriginal Northern Territory citizens who speak English as a fifth or sixth language, are neither properly consulted nor heard. The mainstream English-speaking community just rolls on as if they are not even there. This is despite the United Nations Declaration on the Rights of Indigenous Peoples, which Article 19 clearly states:

“States shall consult and cooperate in good faith with the indigenous peoples concerned through their own representative institutions in order to obtain their free, prior and informed consent before adopting and implementing legislative or administrative measures that may affect them.”

This leaves the Northern Territory with a major problem. It has a large proportion of its citizens who are not in sync with what is happening. In fact, in many cases this marginalised group of Northern Territory citizens see themselves as being controlled, manipulated and even penalised by the English mainstream community.

Whether it’s the current NT euthanasia legislation or legislation to control levels of lawlessness across the Territory, these English-second-language NT citizens are not informed or consulted effectively and efficiently. So whether it’s bail laws, increased jail terms for domestic violence, or any other legislation, these measures will not deliver the desired outcomes, such as deterrence because, in most cases, these Northern Territory citizens don’t even know these laws have been enacted.

Most only find out about new NT legislation after they are told they are being charged and end up in court. This means the government will need to build more, bigger jails to lock up many more of these information-marginalised NT citizens. Again, Article 19 of the United Nations is not being applied here.

At the moment, Northern Territory incarceration rates are heading towards the highest in the world, sitting at over 1,300 to 1,440 prisoners per 100,000 adults. This rate is roughly five to six times the national average, with Aboriginal people making up nearly 90 per cent of the Territory’s adult prison population.

READ: Colonialism is alive and well in Australia today and still impacts First Nations people

Yolngu are not against the rights of the terminally ill

Yolngu and other traditional First Nations people are not against equal rights for the terminally ill. According to their ancient custom, people who are terminally ill are permitted to dhä-mukmarram – close the mouth to food and water. This can only happen through a process in which a full family meeting is called, including their traditional legal representatives, and the terminally ill person tells them their intentions. After that, no one is allowed to force food or water on them. The family respects their wishes and works with them to address any issues that need attention before their passing.

This is part of the ancient practice of raypirri – the discipline of mind, body, and soul, in which the terminally ill patient gets all their legal affairs sorted out, says goodbye as they need to, and prepares themselves for the crossover to the other side – the spirit world.

However, they do oppose administering substances to someone to bring about an early death. Under their traditional Madayin law (an original Australian law), giving a substance to someone to end their life is considered an evil act of sorcery; a form of murder. Please see Chips Mackinolty, Right legislation: wrong jurisdiction?

The fear at the moment

The concern at the moment is that because good communication has once again not occurred, Yolngu patients and other Aboriginal people for whom English is a second language will refuse to receive medical treatment. This will lead to an even higher level of sickness and death amongst the Northern Territory population, which is already suffering at world-record levels. This will further overload NT hospitals and medical services.

When communication fails, everything goes wrong. I had to work with many Yolngu patients to convince them to continue their treatment after the Rights of the Terminally Ill Act in 1995, and I’m not looking forward to having to do it again. It’s a pity that in a modern country like Australia, we can’t ensure that basic communication is effective, so that certain population groups do not have to live in fear of what might happen if they seek treatment at a health clinic or hospital.

If current medical services were culturally safe and effective

Yolngu people in north-east Arnhem Land are experiencing the highest death rates in Australia, five times the national average. For those who rely on evidence and statistics to guide decisions, this should make it clear that we have a problem.

Most medical services, including so-called community-controlled health services (which are not community-controlled), do not encourage their staff to learn the local language. Many of their doctors are short-term locums with little to no cultural competence, linguistic skills, or culturally safe communication practices to effectively engage their English-second-language patient base. As a result, everyday communication at this basic level is fraught with danger and miscommunication.

It is easy to see that Yolngu patients, upon hearing about this euthanasia legislation, will fear attending even local Aboriginal-controlled health clinics, worried they may be scheduled for euthanasia.

From experience, they know many have been scheduled for operations they didn’t want. This is because other legal requirements, such as ‘informed consent’, are also poorly understood in this same population. Many see informed consent paperwork as just “yes-saying documents”, with little or no real understanding of what consent implies.

The current legislation to be debated in the NT Parliament this week includes a protective ‘gag order’ that prohibits doctors and nurses from raising the option of Voluntary Assisted Dying with their patients. Rather, it must be raised by the patient themselves.

If the government continues with this legislation, it is hoped that it will ensure the gag order on doctors remains in place. If it doesn’t, the massive miscommunication that is occurring every day in remote Aboriginal communities and in places like Darwin, Katherine, and Alice Springs, where English is a second language, will continue, only now with an added dimension.

As a result, high levels of fear will lead to chronic disease and other conditions going unaddressed in their early stages, meaning a bigger tidal wave of critically ill patients will hit the already massively overloaded medical services of the Northern Territory.

Finally, we should be working towards a situation where all Northern Territory citizens are afforded a fair go and equal rights, so people do not have to live in fear of what might happen to them or their relatives. To do this, we should provide grassroots programs like Hope for Health, which can deliver professional health coaching in people’s language to turn this chronic situation around. Good communication is the way. And that can only happen with mainstream professionals learning the People’s language and working with them long-term through culturally safe programming.

Richard Trudgen has been working with the Yolngu people in Arnhem Land for over 50 years. He speaks legal, medical and economic Yolngu Matha (language) and is the author of Why Warriors Lie Down and Die. He is the CEO of Why Warriors, a community development social enterprise that empowers Yolngu and other First Nations people by providing access to information and building capacity and understanding between Aboriginal people and the Dominant Culture. Please see Why Warriors at a glance. Previews of his latest book can be followed on Substack.