By the time her patient’s suffering had become so great he asked Dr Andrea Bendrups for a substance to end his life, it was too late.
The man had terminal bowel cancer and was in and out of hospital for months, in agony for days at a time. But Bendrups and the other doctors treating him in Victoria were legally bound by a “gag clause” that stopped them bringing up the option of accessing voluntary assisted dying.
When the Shepparton man finally asked to be given something that would end his life, Bendrups, a general physician and rheumatologist at the Royal Melbourne hospital, drove up to the regional town the next day, confirmed that the man was eligible for VAD and applied for him to receive treatment after a nine-day minimum waiting period.
“I submitted all his information to the portal that night, when I got back to Melbourne, but he died two days later of a bowel obstruction,” she says.
She couldn’t have done so sooner, as doctors in Victoria and South Australia are forced to wait until patients raise VAD themselves.
VAD laws have passed in all Australian states and territories except the Northern Territory but provisions intended as safeguards – including restrictions on health professionals’ conversations about VAD – are operating as barriers to access for eligible people, a new report has found.
The State of VAD report, released Monday by the charity Go Gentle, for the first time provides a national snapshot of how those laws are operating.
The report says that since it became available legally in Victoria in June 2019, 5,338 Australians – with an average age of 73 – have applied for VAD, and 2,467 have died using a VAD substance. Nearly three out of every four people seeking VAD (72.6%) had a primary diagnosis of cancer.
Dr Linda Swan, the chief executive of Go Gentle Australia, says: “Overall this is a good news story – what we’re seeing is that the laws are operating effectively and safely in every jurisdiction.”
The process’s compliance rate is close to 100%.
“Most instances of non-compliance have been to do with paperwork – none has involved eligibility,” the report says.
But up to half of all people who began the VAD request and assessment process did not complete it, and about one in five who were deemed eligible died without receiving a VAD substance.
The report acknowledges that the data includes applicants who are yet to complete all stages of the process, people who chose not to continue with it and others deemed ineligible.
“However, the non-completion rates do suggest the VAD application process may be overly complex for dying people and that many applicants start the process too late,” the report says.
On average, applicants took between two weeks and a month to progress through the application and approvals process.
Of the provisions intended as safeguards but that can operate as barriers to access for eligible people, Swan says the most concerning for health professionals are the laws prohibiting doctors from starting conversations about VAD.
“These gag clauses are quite unprecedented in healthcare,” Swan says. “The principles of good clinical care is that you should be completely transparent with a person about all their choices.”
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According to the report, access to VAD is “generally lower in jurisdictions where conversations are restricted. In Victoria, for example, … VAD deaths as a proportion of all deaths are half those in Western Australia and Queensland, where VAD can be raised alongside other options including palliative care.”
A professor in end-of-life law and regulation at the Queensland University of Technology, Ben White, says the laws “are problematic because they require people themselves to know that VAD is a legal option and that they might be eligible”.
Victoria and South Australia were early adopters of VAD, when there was concern patients could be coerced, Swan says. As the laws have been rolled out across other states, the gag clause has not been adopted. “I think people have looked and learned and noticed this was a safeguard that wasn’t necessary,” Swan says.
The report has found that the latest VAD law to have passed – in the Australian Capital Territory – “is the most person-centric … removing the time frame to death, giving experienced nurses a greater role and spelling out the obligations institutions have to the people in their care, including penalties for obstructing access”.
All other states impose a six- to 12-month time frame to death requirement in their legislation but the ACT approach “shifts the emphasis back onto the nature of the illness, ‘incurable, advanced and progressive, and is expected to cause death’ and the suffering the person is experiencing, rather than gatekeeping access according to prognosis”, the report says.
It also highlights that the access of Australians in all jurisdiction is compromised by commonwealth restrictions on using telecommunications and telehealth. The Criminal Code Act prohibits the use of a carriage service to incite or encourage suicide, so health professionals risk breaking the law if they use telecommunications for many aspects of the VAD process.
Despite the fact that leading suicide prevention organisations, including the Black Dog Institute, Lifeline and Beyond Blue, have said VAD should not be described as suicide, the federal court has ruled that the definition of suicide under criminal law applies to VAD.
The report includes a joint statement – signed by 17 leading health organisations, including the Peter MacCallum Cancer Centre, the Public Health Association and the Consumer Health Forum – calling for the government to urgently amend the criminal code where it negatively affects the provision of VAD services.
The report also says finding practitioners qualified and willing to take VAD cases can be difficult, and small typographic or paperwork errors can hold up applications for days, sometimes weeks, potentially adding to patient suffering.
Of the evidence that access to VAD can be challenging, White says it “is common when new healthcare services are established”.
“But more work is needed to ensure people who are eligible and want to access VAD are able to have this choice.”