Stepping with care towards voluntary assisted dying

The implementation of Victoria’s new voluntary assisted dying legislation is being managed carefully, according to experts from the MLS community.

By Anders Furze

When voluntary assisted dying becomes legal in Victoria on 19 June, the watershed moment will mark the culmination of years of work and extensive consultation.

The legislation – and its implementation – attempts to balance thorny issues, such as autonomy and the protection of the vulnerable, and equity of access with the right for health practitioners to conscientiously object.

All eyes will be on what happens next, with Victoria becoming the first jurisdiction in Australia to successfully legalise the practice.

“Of all the things I’ve done in my career, I found sitting on the Ministerial Advisory Panel the most challenging and exciting – from a legal, ethical, moral and emotional viewpoint,” says Julian Gardner AM (BA 1967, LLB 1968). He has since been appointed chair of the Voluntary Assisted Dying Taskforce, which is helping to implement the legislation.

Getting to this point has taken extensive time and consultation, thanks both to the legislation’s contentious nature and the fact that voluntary assisted dying had never been successfully legalised in Australia (it was introduced in the Northern Territory in 1995, before being banned two years later by the Federal Government).

“We had to listen very carefully to the concerns that were raised and seek to prepare legislation which addressed all of those concerns,” Gardner says.

“What you get is a bureaucratic act, because it’s full of safeguards, but that was necessary in order to ensure its passage through parliament.”

Victorian Premier Daniel Andrews has called the legislation the most conservative of its type in the world, and Gardner agrees.

“In the US, you have to be terminally ill but you don’t have to be suffering. In Europe, you have to be suffering but you don’t have to be terminally ill. In Victoria, you have to be both.”

Voluntary assisted dying has been legal in the US state of Oregon since 1997, and Gardner says about a third of people there who choose it don’t end up taking the medication.

The knowledge that they’ve got some control over their life gives them sufficient relief from some of their suffering to not need to use it.

The Victorian Act insists on decision-making capacity “at every stage of the process”, Gardner says. To be eligible, a person must have lived in Victoria for more than a year, be an Australian citizen or permanent resident aged over 18, and have an advanced disease that is expected to cause their death within six months (12 in the case of neurodegenerative diseases). They must also be experiencing suffering that cannot be relieved in a manner the person considers tolerable.

They must then go through a process involving two written assessments from approved doctors and two further separate requests for access.

Retired Justice Betty King (LLB 1974) is chairing the Voluntary Assisted Dying Review Board. She says safeguards are important because the process is new.

“Some people see it as a giant step,” she says. “For others, it’s a normal, progressive step in the chain of where we go with our lives.

When you implement something [like this] for the first time, you have to be awfully careful of, firstly, the views around it, and secondly, [ensuring] that they don’t feel that people can be put at risk by it. That an evil son or daughter doesn’t come along and say, ‘I want Mum and Dad’s house’, then push them off the edge via this process.

The review board, which is composed mostly of medical professionals, will review every application that’s granted, although not until after the fact (exceptions will be made for cases where an application is escalated if there’s “something of concern”).

“Predominantly, we’re a board of review,” King explains. “Are you all complying with the [Voluntary Assisted Dying] Act? This is a voluntary assisted death; has it been done correctly? That’s really…our main role.”

The board will also be collecting data and “empowering researchers” to access it, and will make recommendations on how to improve the system, something King notes will “come from experience”.

For Melbourne Law School academic Dr Carolyn Johnston, a key ethical challenge is the extent to which people will be enabled to “exercise their autonomy, and have their choices around assisted dying respected”.

One potential issue could be a disparity of access to information about voluntary assisted dying. Section 8 of the Act prohibits a registered health practitioner from either suggesting voluntary assisted dying or initiating a conversation on the topic. They can, however, provide information at a person’s request.

“I can understand that we don’t want the healthcare professional to … unduly influence an individual,” Johnston says. “But on the other hand, the question I suppose is: where are people going to get their information, and what constitutes the healthcare professional initiating a conversation?”

This could potentially lead to a “disparity of access between people who are informed enough to ask their healthcare professional about it, and those people who don’t know very much about it, or don’t have the confidence to start a conversation”.

I’m interested to see whether the aims of people seeking assisted dying will be met, whether it’s a process that is meaningful and effective.

Gardner agrees that equity of access has been one implementation hurdle. He argues that it reflects pre-existing issues surrounding equity of access to healthcare generally.

“Some of that’s been overcome by establishing a central, state-wide pharmacy service,” he says.

“Instead of all pharmacists dispensing this medication, it will all be done centrally from one pharmacy in Melbourne that will go out anywhere in Victoria and deliver the medication free of charge.”

The implementation taskforce has also been considering the role of faith-based organisations that might decide not to be involved. Gardner notes that these organisations administer a large percentage of palliative care in Victoria.

The system won’t work without the help of the medical community, and King says that there has been a “huge process” of “informing hospitals, medical professionals, community care professionals, and trying to get them to come along”.

“If people aren’t willing to participate, it’s going to make it very difficult for the community at large to access this.”

Ultimately, she hopes that with time the medical community will come to agree that “the whole point of this is that it’s entirely voluntary”.

“It’s just an extra element of what’s available to patients, if people require it.”

It’s hard to definitively say how many people will select voluntary assisted dying as an option once it’s legal.

“In all honesty, we have no idea,” King says.

“It could be zero, it could be 200.

“You look at the experience overseas, but all of the systems are so different. And also, I think populations are different. We have different attitudes.

“We will find out what Victorians think in a couple of months.”

Banner image: Voluntary assisted dying will become legal in Victoria in June. Image credit: inewsistock, iStock.

This article originally appeared in MLS News, Issue 21, June 2019