This man has helped 60 people die. Now he wants the law changed to make it easier

Nick Carr has helped 60 people to die. More or less. And it makes him a happy man.

The St Kilda doctor is one of Victoria’s most active prescribers of voluntary assisted dying medication, and he recently lost a legal challenge against the federal government over its law prohibiting discussion of suicide over a “carriage service”, which includes phones.

In addition to wondering whether he’ll face federal criminal prosecution over the hundreds of text messages on his phone discussing arrangements for people’s self-administered deaths, he’s also frustrated by the state of Victoria’s euthanasia law.

Carr sees between one and four people a month who want his help to end their lives, but under Victoria’s legislation, doctors are not permitted to be the ones who raise the subject. When his patients do, the law says they must be quite explicit before he can even refer to voluntary assisted dying. “‘I want the stuff that kills you’ isn’t enough,” Carr says.

‘Doctors won’t give you six months until you’ve got six weeks left. We’re hopeless with prognosis.’

Dr Nick Carr

In the state that pioneered these laws in Australia – the legislation passed in November 2017 – Carr is also not allowed to help anyone who has dementia or (with exceptions) those who have more than six months to live, no matter how sick and terminal they are.

It’s assumed in Victoria that the people he does help to die will take their medication themselves orally, not by injection – which some people find off-putting. And if they live in a Catholic nursing home or hospital, they might need to find another location to administer the fatal dose, then arrange to be transported there on their final day. He also can’t help anyone who’s lived in Victoria for less than 12 months.

“Fair enough, Victoria’s was the first voluntary assisted dying law in Australia, so compromises needed to be made to get it passed through parliament,” Carr says. “But with 68 safeguards, it’s now the most restrictive place of anywhere in the world that offers this.”

When the Andrews government finally passed this law six years ago, after a marathon debate, it jammed the lid on a can of cultural and religious worms. But now other states have followed – New South Wales’ regime has just come into force, and the Northern Territory and the ACT are close behind – Carr says it’s time Victoria reopened that can and revisited some of the limitations that, six years down the track, experience suggests were overly cautious.

Members of the Victorian upper house celebrate after the 29-hour sitting that passed the Voluntary Assisted Dying Bill.Credit: Jason South

The current compulsory review of the legislation would normally be a chance to do that, but instead, to torture a metaphor, the government is sitting firmly on the can – or perhaps kicking it down the road. In the Health Department’s recently released documents announcing the review, it insists it “will not consider changes to the legislation itself”, only the “systems, processes and practices” of the law.

That Victoria has fallen behind is not in dispute.

Take the requirement for a prognosis of death within six months (except for neurodegenerative illnesses such as motor neurone disease, where it’s 12 months). The Queensland law has a 12-month prognosis requirement and the ACT will soon consider legislation with no prognosis limitation at all. This gives doctors considerably more flexibility about offering people treatment.

“Doctors won’t give you six months until you’ve got six weeks left,” Carr says. “We’re hopeless with prognosis.”

As a result, many start the process too late and die waiting.

In Carr’s view, there should be no time limit. Once doctor and patient know a disease will be fatal, the exact time left to live is hard to predict and, frankly, irrelevant. The point is to ease people’s minds in their final months.

“They don’t die if they don’t have to,” says Carr, “but having the means available gives them freedom.” One of his patients had the medication on the shelf for 15 months. “Once they got it, they said: ‘Now I’ve got the dying sorted out, I can get on with living’.”

State Health Minister Mary-Anne Thomas and Premier Jacinta Allen.

Another shortcoming in the Victorian law is the ban on doctors initiating the conversation. In other states healthcare workers can do so as part of a broader conversation about end-of-life options.

This is not a problem for Carr’s practice. His position is well-known enough that he rarely has to worry – his patients raise it with him confidently and specifically. But in Victoria, the proportion of people dying intentionally in this way is about half a per cent to 1 per cent, whereas under regimes with fewer restrictions, such as Canada and Belgium, it’s 2, 3 or 4 per cent. This suggests Victoria’s regime is forcing a lot of people to die in a way they would not choose.

“Because it’s hidden, we don’t know who’s missing out, but we know most of the people who avail themselves of care are educated and good English speakers,” Carr says.

There are plenty of other changes Carr and the members of lobby group Dying with Dignity Victoria would like to see enacted, but the Victorian government does not have the stomach for wriggling worms of this sort. Most particularly, it does not want to talk about dementia. “Changes to eligibility criteria are out of scope for this review,” its documents firmly state.

This is disappointing but understandable. Dementia is a can of worms all of its own. Carr acknowledges it’s “hugely complex”, but it’s also the No.1 preoccupation of the older people he sees.

It’s a nasty, lingering death. It can take a decade or more for people with dementia to die of pneumonia, or choking. We’re all scared of it, but one-tenth of us will die from it, and if you’re a woman over 75, it’s the thing most likely to kill you.

“What they fear more than anything else is the indignity, the loss of control,” Carr says. “I’m asked literally every week by someone, ‘When are we going to have access to that?’”

You can understand why the government might quail. Even if someone identifies well in advance of dementia taking hold that they want to die a quiet death, when do you actually administer the injection? When they can’t laugh? When they don’t know themselves or recognise their loved ones? Who makes that judgment?

Our whole regime is built on consent – it’s there in the title, “voluntary”. But how do you check consent with a late-stage dementia patient? What if, when it comes time to administer the fatal drug, the person is confused and frightened by what’s happening? They might have years left on the clock physically, but we would be asking a medical professional to administer something that will kill them, possibly over their resistance.

Would the practitioner wonder as they went home that night whether, perhaps somewhere deep within their dementia, in a place we can no longer reach, a still-conscious part of that person had changed their mind? Or if the family was overly eager for the inheritance?

“Once they lose all capacity to consent, I don’t see a way we could administer the drugs,” Carr says. “No one really knows how it could work, but it would need to be very, very carefully controlled with a lot of oversight.”

That said, “it’s available in jurisdictions overseas. Belgium has been doing it for over 20 years now, so there are protocols in place”. And his patients are clear they want the option on the table.

“If there’s one thing I’ve learnt over time, it’s to listen to my patients. Most of us say, ‘If I get to that stage I want that option.’ Nobody says, ‘If I get dementia, please keep me drooling into a bedpan as long as possible’.”

As for the law that rules out discussing voluntary assisted dying over the phone or via a messaging app, Carr scoffs. It’s unworkable, he says, even in a city environment, much less the regions.

In her ruling on a case Carr brought against the Howard-era legislation, Justice Wendy Abraham found that, even though voluntary assisted dying was a “carefully regulated and a societally approved” regime, it still could be considered “suicide” – a word that’s not defined in the act.

The threat of criminal action does not perturb Carr. He’s been through worse after he prescribed a fatal dose of a drug to Beverley Broadbent in 2005 and admitted his role. What astounds him now is that suicide and voluntary assisted dying can be considered in the same breath.

Beverley Broadbent euthanised herself in 2013, well before it was legal in Victoria.Credit: Angela Wylie

“My little sister suicided five months ago. Suicide is the most hideous, traumatic, life-changing event for family members, done by people who are seriously psychiatrically unwell and who did not need to die. It was not a choice, it was due to illness, and it left everybody – her family, her friends – tremendously traumatised.

“Voluntary assisted dying, on the other hand, is something that’s sad, but supported by family and friends. It’s done with the agreement of people around and the deaths are, if anything, beautiful. They are so gentle. They’re celebrated in many ways, and the bereavement, if anything, is better than after other deaths.

“Suicide is a choice between life and death. With VAD, people are already dying. The only question is when, where and how.”

Our attorneys-general are looking for ways to fix this false equivalence. Perhaps Victorian Health Minister Mary-Anne Thomas should take the opportunity to be a little braver, too, in her review of the state laws.