Kristen Kappel, a 51-year-old voluntary assisted dying care navigator, has attended many deaths in her four years on the job. She often cries at them. “If we don’t get emotional, then we’re probably done,” she says. But she describes the death and dying part as “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 (VAD). While the service’s contact details are public, the navigators themselves have largely stayed out of the public eye. They help terminally ill people chart a course through a legal and administrative wilderness, giving patients more dignity and control over their death.
Growing Demand for VAD
All Australian states and the Australian Capital Territory now have lawful VAD, and the Northern Territory government expects to table legislation soon. Awareness and interest in VAD is growing. Although VAD accounts for just 2% of all deaths nationally, every state and territory with available data reports increases in assessments and uptake since 2024. In Victoria, the increase has been softer but keenly felt by the small cohort of navigators.
“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.”
The Navigator’s Role
What follows may be simply posting out an information pack, or it may initiate a longer relationship as people grapple with advancing 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.”
The process of determining eligibility and access to VAD usually takes at least six to eight weeks, requiring multiple appointments with specially trained doctors. It can be “quite arduous” for some people, says Jill Mann, a 62-year-old navigator based in Geelong. “Our role is to try and help it be seamless.”
Peace of Mind and Family Healing
Around a third of people who gain access to VAD don’t use it. “There’s peace of mind in choice,” Mann says. The comfort comes from being empowered at a vulnerable moment. “They can’t change the trajectory [of their disease], they don’t have control over that, but this, they do.” While a person’s decision 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 is often humour too. Mann recalls a “very practical, straight-down-the-line” man who suggested having his coffin delivered to the nursing home before he took his medication. “I said, I don’t think that’s really necessary, the undertakers are very used to moving people.”
Legal Hurdles and Regional Challenges
Navigators often visit patients in person, 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. Practical consequences include carefully navigated phone conversations, information booklets sent by mail, and further conversations in person.
This barrier becomes harder with distance. Mann is one of just two navigators based in regional Victoria and cannot visit everyone. She relies on “champions in the further regional areas so they can have that face-to-face conversation,” but the workload falls to a few trained GPs. “As soon as someone goes on leave, you notice it,” she says. Specialist assessments complicate matters further. “We have had some neurologists travel far too far to assess people,” Mann 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 telehealth for VAD and broaden access. The Labor national conference in July changed the party’s national platform to support the reform. The Greens and independent Kate Chaney plan to introduce legislation in coming weeks.
Stigma and Reforms
Stigma surrounding VAD has lessened significantly, but when encountered it is 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 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?”
