Health professionals are calling on the federal government to amend a Commonwealth law that discourages the use of telemedicine for voluntary assisted dying discussions, saying the ban is having devastating consequences for some dying Australians.
Telehealth, where doctors provide some clinical services via phone, video call or email, helped improve healthcare access for many Australians during the pandemic. But health professionals say they are reluctant to extend the service to voluntary assisted dying (VAD) practice because of two short sections in the Commonwealth Criminal Code that make it illegal to use a “carriage service” for suicide-related materials.
Despite the fact that VAD is not suicide and there is growing evidence that telemedicine provides quality healthcare in VAD, the ban is imposing increased suffering on dying patients and creating barriers to access for rural and regional people.
'Everything he dreaded happened.'
Suffering intolerably from progressive supranuclear palsy, a rare neuro-degenerative disease, 82-year-old Victorian Alan Clark died just one day before he was due to receive his VAD medication. Despite applying for access to voluntary assisted dying six months earlier, Alan battled to make his way through the process, partly because of the ban on using telemedicine.
His wife Zenda told ABC News that Alan struggled to find VAD trained neurologists to assess him for eligibility and could not physically attend multiple in-person appointments with doctors. "By the time all the approvals went through, it was too late. It was just the most horrific end. Everything he dreaded happened.”
Zenda said the Commonwealth law criminalising the electronic discussion of VAD made the process almost impossible. “There are just so many barriers and so many hurdles that it takes a genius to work your way through it."
Zenda said in the end Alan died “in the very circumstances he and his loved ones feared the most”.
'For mum, it was four months and every day seemed like a month.'
Margaret, also 82, lived in regional Victoria with a progressive neurodegenerative condition called Corticobasal Syndrome. Despite her loss of muscle control and inability to move and speak, Margaret had to travel three hours to Melbourne for a face-to-face meeting with her doctor to confirm her decision-making capacity.
Her daughter Lisa said the requirement for in-person attendance was an enormous burden, “It was either get your mum to Melbourne … or wait for another few weeks for someone else to come. We couldn't make mum wait any longer.”
The trip was arduous and Margaret arrived for her appointment with just 15 minutes to spare. The journey had taken an enormous toll on her well-being. Regardless, she had to submit to rigorous testing and questioning. “We thought, ‘Oh my goodness, can't he see that she's old? Can't he see that she's tired? Can’t he see that she's hungry?’ ”
Lisa believes the use of telehealth for some of her mother’s assessment would have lifted much of that burden. Margaret was finally found to be eligible for an assisted death four months after she first applied. “For Mum, it was four months and every day seemed like a month.”
Amendments added to the Criminal Code Act in 2007 – sections 474.29A and 474.29B – prohibit the use of a carriage service to discuss or send ‘suicide related’ materials. Even though many jurisdictions specifically say that VAD is not suicide, these sections mean that doctors are reluctant to use telehealth to discuss some aspects of VAD with their patients for fear of prosecution and a $220,000 fine.
An immense burden
This ambiguity causes unnecessary suffering and delays for terminally ill people, many of whom are too sick to travel to an in-person consultation. It also limits access for people living in rural, regional and remote areas and increases complexity and stress for health professionals delivering VAD care.
The Australian Centre for Health Law Research at Queensland University of Technology argues that these laws put clinicians at risk and pose an “immense burden on very sick patients to travel or, if this is not possible, it requires doctors to travel large distances to see patients.”
Doctors call for amendment to Criminal Code Act
The Doctors Reform Society has called publicly for the law to be changed: “Terminally ill Australians should have the same rights to be able to access Telehealth for VAD doctor consultations as every other Australian does for other medical consultations,” spokesperson Dr Robert Marr OAM GP said.
The call is echoed by those at the centre of VAD practice. VADANZ (Voluntary Assisted Dying Australia & New Zealand), which represents Australasian VAD practitioners, says that while it does not believe all consults should be via telemedicine – “there are distinct advantages in conducting VAD assessments in person” – it recognises “the benefits that the use of Telehealth may provide patients in facilitating their right to access health care that is relevant to their needs”.
‘Practitioners will continue to do what they see is best for patients’
Some health professionals are defying the prohibition on using telehealth and are using phone, and video calls for some VAD discussions irrespective of the ambiguity in the Commonwealth Code. One doctor in Western Australia put it this way:
“I could regularly be seen to violate the CCC [Commonwealth Criminal Code] as I tell every patient I see over video conference the names of the medications and how they’re administered. I used to be mildly anxious. Now I just think the whole thing is ridiculous. I don’t want to be prosecuted, but if nothing else it would force the Commonwealth to do something about this."
‘Telehealth makes VAD possible’
Like in WA, many Tasmanian VAD practitioners are using telemedicine regardless of the Criminal Code Act.
“Telehealth makes VAD possible,” one doctor said. “It makes distant cases really achievable. I have one patient with terminal cancer who lives about three hours from Hobart. All the patient has to do is one trip to meet me face to face. Everything else is done from their home.”
Tellingly, Tasmanian practitioners report that after the first in-person meeting they are safely able to assess their patients for eligibility, decision-making capacity and the risk of coercion using telemedicine. In other words, none of the fears around telehealth and VAD have come to pass.
All of this raises two crucial questions: What problem is the prohibition on using telehealth in VAD seeking to fix? And why have a law if it is not to be enforced?