There’s an image that lingers in Kristen Kappel’s mind: a man lying on his bed with his wife, his two daughters and his dog, all snuggled in together.
The event was the man’s death. He had just taken the medication that would bring it about.
“It was beautiful, and it was exactly what he wanted,” Kappel says.
The 51-year-old has attended many deaths in the four years she has been working as a voluntary assisted dying care navigator. She cries at them often. “If we don’t get emotional, then we’re probably done,” she says.
It’s far from a burden, though: “The death and dying part … is the most beautiful, satisfying, precious part of our role. It’s actually beautiful.”
The care navigator service was established in 2019 when Victoria became the first Australian state to legislate access to voluntary assisted dying. The service’s contact details are publicly available but in the years since VAD laws were passed, the navigators themselves have largely stayed out of the public eye.
For many terminally ill people, navigators help chart a course through what can feel like a legal and administrative wilderness, giving the patient more dignity and control over their death in the face of tremendous suffering.
All Australian states and the Australian Capital Territory now have lawful VAD, and the Northern Territory government expects to table legislation to allow it in the coming weeks. And awareness of, and interest in, VAD is growing. While it accounts for just 2% of all deaths nationally, according to data compiled by the end-of-life-choice charity Go Gentle, every state and territory with available data reports increases in assessments and uptake since 2024.
In Victoria, the increase has been softer but it has been felt keenly by the small cohort of navigators whose job it is, in the first instance, to answer the phone.
“It’s a little bit chaotic at the moment,” Kappel says. “We could have anyone call us – and we do … They might be patients, they might be family members and friends, they might be doctors, they might be aged care facilities.”
What follows may be simply posting out an information pack, or it may initiate a longer relationship as people grapple with the advancing stages of their illness or face complications with the assessment process. The job may involve linking patients with doctors trained to assess VAD eligibility, or even turning up on the patient’s chosen day to mix the medication.
“Sometimes it’s an extraordinarily intimate relationship, in a way,” Kappel says. “You’re seeing people who are dying, who are distressed. You’re seeing them in person, you might be seeing them on the day of their death, and you get to know their family. So that can be quite intense.”
She adds: “We have the privilege of seeing a lot of love. I think you carry a little bit of just about everyone with you.”
‘Peace of mind in choice’
The process of determining eligibility and access to VAD usually takes at least six to eight weeks, and requires multiple appointments with specially trained doctors.
It can be “quite arduous” for some people, says Jill Mann, 62, a navigator based in the regional city of Geelong. “Our role is to try and help it be seamless.”
Even then, around a third of people who gain access to VAD don’t use it. “There’s peace of mind in choice,” Mann says, and comfort that comes from a person being empowered at one of the most vulnerable moments in their life. “They can’t change the trajectory [of their disease],” she says. “They don’t have control over that, but this, they do.”
While a person’s decision to use VAD can create conflict within some families, for many it creates opportunities to mend rifts. “It gives people time to bring family together … say things they want to say to each other,” Mann says. “Even estranged family members will come. So it gives it a little chance of some healing.”
There’s also, often, humour. Mann remembers a “very practical, straight-down-the-line” man who suggested to her that perhaps when he received his medication it would be more convenient for everyone if he had his coffin delivered to the nursing home where he lived.
“He said, ‘I think because it’ll save anyone lifting me, I’ll just get in the coffin and take the substance,’” Mann says, with a laugh. “I said, I don’t think that’s really necessary, the undertakers are very used to moving people.”
Legal hoops
Navigators often visit patients in person. This is not just out of compassion but also legal necessity: federal criminal laws from 2005 prohibit “using a carriage service” such as a telephone or email to provide information on how to “commit suicide”. A legal challenge in 2022 sought to distinguish between lawful VAD and suicide but the court determined that when the laws were made – before VAD was legal – no such distinction was intended.
The practical consequences for lawful VAD are that phone conversations must be carefully navigated, information booklets are sent by mail and further conversations must occur in person.
This barrier becomes harder to overcome with distance.
Mann came to the care navigation service with a nursing background, having spearheaded the advanced care planning program at Barwon Health. She is one of just two navigators based in regional Victoria and cannot visit everyone. One of her strategies is to have “champions in the further regional areas so they can have that face-to-face conversation” but the workload invariably “falls to a few” GPs who are trained in VAD and will take patients.
“As soon as someone goes on leave, you notice it,” Mann says.
Specialist assessments complicate that even more. “We have had some neurologists travel far too far to assess people,” she says. “We have a lot of specialists but not many are trained in VAD … Specialists are very, very busy everywhere but in regional and rural areas particularly, and so getting appointments in a timely manner is difficult and people decline quickly.”
Go Gentle has been campaigning for federal law reform to allow the use of telehealth for VAD and broaden access to those disadvantaged by their regional location. The Labor national conference in July put the issue back on the political agenda, changing the party’s national platform to support the reform. The Greens and independent Kate Chaney plan to introduce legislation in coming weeks.
Stigma surrounding VAD has lessened significantly over the years, the navigators say, and these days when they encounter it, it’s mainly in the health system.
“We still get people coming to us who have asked several times about VAD and not gotten anywhere,” Kappel says. “Then it’s too late by the time they get to us, and that is very distressing.”
Mann says: “I get cross sometimes with health clinicians, health workers, practitioners that are flippant about [patients raising the possibility of VAD] and don’t do anything about it. I find that very objectionable.”
Reforms passed in Victoria’s parliament in November, taking effect in April 2027, will require medical professionals who object to VAD to refer requesting patients to the navigator service or another practitioner who will help them.
The changes also extend the maximum life-expectancy criteria from six months to 12 and remove the “gag clause” that prevents medical practitioners raising VAD as an option with patients unless the patient has raised it first.
“It’s part of end-of-life care,” Mann says. “It should be business as usual. If you reflect on a good death, what would you want for yourself?”
