Voluntary assisted dying: what is it, and what is it not?

In June 2019, Victoria became the first state in Australia to enshrine legislation to permit voluntary assisted dying, or VAD.

The law allows people in the late stages of advanced disease to end their lives, under medical supervision. So far more than 900 people have sought that option.

Reflecting deeply held concerns from some sections of the community, access to VAD is restricted to people experiencing intolerable pain and who are expected to die within 6 months. For neurodegenerative diseases, the timeframe is 12 months.

Expected time until death, however, is not the only factor that the law and its practical applications take into consideration.

On reflection, after 3 years of operation, some doctors, along with family members of people who have engaged with the process, question whether the system as it stands is feasible or fair.

Opinions, as always, differ, guided by sincerely held moral and philosophical values.

In all cases, however, it is important that people contemplating voluntary assisted dying are aware of the potential hurdles they may face before they start the process.

Nita’s story: when the VAD process works

Nita had advanced Parkinson’s disease, and lived in a Ballarat nursing home. Her daughter Jen and son-in-law Chuck were never far from her side.

At a medical appointment she attended with Jen, she announced to her neurologist that she wanted to die.

That triggered what was to be an intentionally drawn-out process in which she would repeat her wish to accredited doctors, making it clear not only was she of sound mind, but that it was her decision and hers alone.

“She had no quality of life,” Jen recalls, several months later. “She was sort of this ghastly brown-purple-black colour. She said she was dying from the feet up.

“She had problems eating, drinking, swallowing, talking, skin burning, constant gyrations.

“She became incontinent. She couldn’t stand; she couldn’t walk. Her dignity was taken from her, as well. And she had full possession of her faculties. She knew what was happening.

In due course, Nita’s doctor and a specialist verified her eligibility for VAD and contacted the Department of Health, which granted permission and contacted Victoria’s VAD Statewide Pharmacy Service, based in a Melbourne hospital.

After a call to the hospital from Nita, formally asking for it to be delivered, the medication was taken to the nursing home by two hospital pharmacists. They remained onsite for two hours and instructed Nita, Chuck and Jen on how to combine the meds to create the life-ending mixture.

During this process they repeatedly reminded Nita that should she decide to take the mixture, her life would end. It was important that there could be no misunderstanding.

After that, the medications were locked away at the nursing home until Nita was ready.

A fortnight later, she announced she was ready to go.

Beside her nursing home bed, Chuck mixed the drugs for her, in accordance with the strict instructions given to him.

Even as he did so, Chuck asked her if this was what she wanted. He told her she could change her mind and reminded her she was under no obligation to proceed. Nita was not interested in any more delay.

She had requested her favourite music play, the signal that the rest of her family should leave the room. She drank the mixture. Chuck leaned in and kissed her gently on the forehead.

“She was fine,” Chuck recalled. “She knew. I said you realise this is the end. You can say no now. But no. She told me to go ahead with it. She knew exactly what was happening and was lucid.”

Chuck and Jen are grateful for Victoria’s voluntary assisted dying laws and the way in which they were able to help Nita in the familiar surroundings of her nursing home.

The contradiction at the heart of VAD

Not everyone, however, has the same experience.

For many seeking to access VAD, the law as it stands has delivered harrowing unintended consequences as they attempt navigate the process.

One of the major hurdles is known as the ‘gag rule’. Under the legislation doctors and other medical professionals are forbidden to mention that VAD exists.

The legislation forbids clinicians from starting conversations with those nearing end of life about the assisted dying option. It is a safeguard that was recommended by the ministerial advisory panel as the law was being debated.

It is there, according to the recommendation, to ensure a person is not coerced or unduly pressured into accessing VAD. It is intended to demonstrate that the decision is entirely the person’s own.

The result is a contradiction. Doctors are obliged to fully inform patients dealing with intolerable suffering of the suite of treatment options available, while simultaneously being open to prosecution if they include VAD in that list.

“There is not a sufficient awareness by the public that this is an option,” says Julian Gardner, chair of the state’s Voluntary Assisted Dying Review Board.

“That’s not helped by the fact that under Victorian law a medical practitioner can’t initiate a discussion about voluntary assisted dying.”

If you know, you know

If a patient is already aware of VAD then they may ask for it. The procedure from there, though, is far from straightforward.

Approval requires three requests from the patient.

The first goes to a medical practitioner who then makes an eligibility assessment. A second medical practitioner carries out another eligibility assessment. The applicant makes a second request in writing and is then required to make a third and final request.

The doctors must agree on that death will probably occur naturally within the prescribed time. Being terminally ill is not enough. Applicants must be assessed as likely to die within six or 12 months, depending on their condition.

Sometimes requests are denied because medical practitioners quite reasonably differ on prognosis.

Progression of disease is notoriously difficult to nail down to the month. Assessments can vary widely based on the practitioner and the individual and the behaviour of the disease. Sometimes it’s clear and sometimes it’s a stab in the dark.

Dr Cam McLaren, the Berwick-based president of Voluntary Assisted Dying Australia New Zealand, says some patients have been declared ineligible because they are expected to live longer than the six-month criteria, only to die within weeks.

“We’re often wrong,” he says, “so many of those patients we think have more than six months to live actually end up dying even though we have determined they are ineligible because they weren’t expected to die.”

The tyranny of distance

Another major barrier – especially for people who live away from major cities – is that the two clinicians needed to approve a VAD request must do so in person.

Telehealth consults are illegal under the commonwealth criminal code, along with conversations on email, text or the phone. Telehealth and Zoom, normalised during the pandemic, are forbidden.

This means that sometimes people approaching the end of life, experiencing illness and pain, must travel, for hours to get to a certified doctor.

Dr McLaren recalls one of his patients, a Gippsland resident in her sixties with metastatic breast cancer and a large amount of cancer in her abdomen, who could not sit at right angles. In early 2021 she had to travel to see him, lying in the boot of an SUV.

He’d had no idea how difficult that trip would be until she arrived.

“I think she’d been in the boot of her car for two to three hours,” he said.

“Because she’d been lying down she was okay. But it was completely unnecessary for that to occur. For her to be forced into that position for no improvement in quality in care is really just a travesty.”

He argues that at least one of the two assessments should be able to be conducted via a telehealth hook up in the comfort of the patient’s home.

The tyranny of time

Dying can be time-consuming and doctors, with the best will in the world, are very busy.

Sometimes one of the parties to an appointment gets it wrong and doesn’t show up. When that happens, the whole process – including travel if necessary -- must start again from scratch.

Some people don’t survive the process. Others take their own lives rather than fight on.

McLaren recalls that on the ‘appointed day’ recently one of his patients, who had end-stage cancer, lost the capacity to swallow the prescribed mixture.

This meant securing a new permit allowing an intravenous drug alternative. McLaren discovered this process was going to take three days, and couldn’t start until the previous allocation of oral drugs was physically returned to the statewide pharmacy service. .

Unwilling to wait that long, the patient took action.

“This is a woman who had prepared herself emotionally and her family had prepared themselves emotionally to say goodbye to each other that day,” McLaren reflected.

“And so I spent a long time counselling her and her family and left. I was called later that day and told she passed away at home by her own hand.”

The burden of proof

Jane Morris is president of Dying with Dignity Victoria.

“Sometimes the legislation almost taunts people,” she says. “They are so relieved when they realise that upon diagnosis of their illness, VAD is a legal end of life option.

“And then as they go through the eligibility process, they go from understanding that they will be considered eligible to be told, oh, you’re not eligible. That’s huge. And quite simply, cruel.”

The safeguards in Victoria’s VAD legislation were included for the best of reasons. Their effect, however, is to sometimes raise the bar for eligibility impossibly high.

St Kilda GP Dr Nick Carr was one of the first doctors trained to provide voluntary assisted dying care. He was at Victoria’s Parliament when the groundbreaking legislation was finally passed into law after decades of rejection. He describes “celebrating like crazy” with Reason Party MP Fiona Patten, who had worked tirelessly to ensure its passage.

Dr Carr had been trying to help terminally ill patients who, faced with no legal or medical option, were taking their own lives in desperation.

With renewed hope and an armoury of new options, he remembers clearly his first patient who came seeking help.

‘Julian’ had end stage pancreatic cancer. He was in terrible pain all day, every day, constantly vomiting and losing weight rapidly. He knew the disease could not be stopped and would crush his body and his spirit until it killed him.

“The only trajectory was for this to get worse and worse until he died,” says Dr Carr.

“So there were feelings of pain, nausea and weight loss but also that terrible existential knowledge that this was an inevitable trajectory to death.”

Julian had lived in Australia for 42 years, was a taxpayer, on the electoral roll, voted and received a pension. It counted for nothing. He was a UK citizen and had never applied for Australian citizenship. While permanent residents are technically eligible for VAD, they must demonstrate that their presence in Australia is legal, which means showing their original entry visa, stamped in a decades-old passport.

Despite his terminal illness and clear suffering, that one criterion immediately carved him out.

Becoming a citizen would take months – which Julian didn’t have, and didn’t want. He, too, took his own life.

“I exhausted legal avenues to try and help him through the legislation, remembering this was my very first patient, says Carr.

“We didn’t know that it would not be possible. We went through lawyers and were told, no, this couldn’t be done.”

The loss affected Carr deeply. He’d been a champion for change but immediately it became clear that terrible unintended consequences were built into the Act.

“I sat at my desk and cried,” he recalls.

What of the future?

In late 2023 a unit within Victoria’s Department of Health started a mandatory five-year review of the implementation of the VAD legislation – a period that includes the 18 month gap between the law passing and its implementation.

Public submissions closed in February 2024. Any recommendations resulting will be considered by Parliament later in the year.

The Health Minister Mary Anne Thomas says in a statement:

“Our first-in-the-nation voluntary assisted dying laws are giving Victorians with an incurable illness a compassionate choice.

“This statutory review of the voluntary assisted dying laws will consider how the laws have been implemented and whether they are operating as intended.”

For more information and resources on voluntary assisted dying in Victoria, please see this page.