Australian politician with terminal illness looks to end ban on death by telehealth

An Australian Member of Parliament (MP) in Victoria who has been diagnosed with terminal motor neurone disease wants the country's ban on telehealth assisted suicide to be overturned.

Key Takeaways:

• Emma Vulin was diagnosed with motor neurone disease in 2024; it is a progressive, degenerative, and eventually terminal illness.

• After her diagnosis, she fought for better accessibility within Parliament, and then moved on to fighting for assisted suicide laws to be more liberal.

• Now, she is calling for people to be able to access assisted suicide through telehealth.

The Backstory:

In a previous interview with The Guardian, Vulin explained she was diagnosed with motor neurone disease in 2024, after she noticed her fingers had been feeling numb. Doctors initially thought it was a pinched nerve, but as it progressed to her arms, the reality of her diagnosis became clear.

Motor neurone disease is a condition in which the neurons associated with muscle movements, particularly those related to involuntary ones like breathing, become damaged and eventually stop working. There is no cure, and the condition is progressive and degenerative, eventually leading to death.

After her diagnosis, Vulin began using a motorized wheelchair to save energy, and brought an occupational therapist with her into Parliament, who made a four-page report on changes which needed to be made for the building to be more accessible.

“This is not just for you, this is for the people of Pakenham," she recalled being told by Trish Burrows, the secretary of parliamentary services. "If you can’t get to your seat to represent your community, then we’re not the parliament of Victoria.” There are now hand rails, automatic toilet doors, a new gate, accessible cabinet handles, and a ramp, both for Vulin and any constituents with disabilities.

Vulin said she began using eye gaze technology so she could be prepared for when she is no longer able to speak, and that her work gives her purpose. “I do have days where I’m exhausted and I think, ‘Do I still want to do this?’ Then I wake up the next day and I think, ‘No, I really do have more to give,'" she said. “Maybe it’s selfish but my community is growing and I’m not done fighting for Pakenham … It’s good for them to have a voice. And for me, it gives me a purpose … Matt’s at work and the kids are at school. If I was at home, I would just sit and cry all day.”

Yet she also said that she began considering assisted suicide fairly quickly. Not only did she want it for herself, but she wanted to make it more accessible throughout Victoria as well, by allowing doctors to bring up the subject to patients instead of waiting for patients to ask for it, extending the life expectancy requirement, and shortening the waiting period between requests. People that point out potential issues with these changes have not seemed to have made an impact.

“I write back saying, as someone that’s been personally diagnosed with a terminal, neurodegenerative illness, I’ve had the opportunity to speak to many, many people who are terminal or have lost people to terminal illnesses and … these changes are necessary,” she said. “There are barriers in place and I respect that everyone won’t want to use it – no problem. But for those that do, it needs to be accessible.”

Now, she is looking to make assisted suicide available via telehealth.

The Details:

Vulin has made a request with Attorney General Michelle Rowland to change the Criminal Code "as a matter of priority," and overturn the ban on telehealth assisted suicide. "As it currently stands, the Criminal Code provides an effective barrier to the usage of telehealth services for voluntary assisted dying assessments, something which particularly impacts those living in rural and regional areas, as well as those whose illness prevents or limits their ability to travel," Vulin wrote in her letter.

Currently, using telephone or video consultations for assisted suicide can result in criminal charges. And it appears that Australian medical professionals agree with Vulin. "Blanket banning any use of the telephone to discuss voluntary assisted dying isn't in line with the spirit of the legislation around the country," Australian Medical Association (AMA) president Danielle McMullen said. "We're not saying that people should never have to traverse [long distances] for some of this kind of care, but surely the conversations along the way [could be undertaken via phone or video call], once someone's been appropriately consented. There has to still be regulation around it."

Vulin specifically said banning telehealth from assisted suicide acts as a barrier.

"I'm proud to add my voice in advocating to the Commonwealth to remove restrictions on the use of telehealth for VAD assessments," she argued. "It just doesn't seem fair."

Yet while there is much angst over the supposed difficulty in obtaining assisted suicide in Victoria, the opposite seems to be true; there has been such an increase that the system has become overloaded, and the state has seen an increase in all suicides, particularly among the elderly.

In the last fiscal year, over 800 people applied for assisted suicide, and it is expected that the number could rise to over 1,300 by 2028.

The Bottom Line:

Telehealth assisted suicide poses numerous additional problems, including widening the potential for pressure and coercion.