New research highlights barriers to VAD access in Victoria
A new study from QUT end-of-life researchers sheds light on the difficulties patients experience when applying for voluntary assisted dying (VAD) in Victoria.
The research team at the Australian Health Law Research Center, comprising PhD student Ruthie Jeanneret, Professors Ben White and Lindy Willmott, and Dr Eliana Close, spoke to 32 family caregivers and one patient in Victoria to understand what helped or hindered VAD access.
"We conducted the study to shed light on people's experiences seeking an assisted death as, until now, research had centered on doctors' early VAD experience after Victoria became the first state to have VAD in 2019," Professor White said, of the Australian-first study.
He noted a major finding of the research was the compassion and personal commitment of the facilitators of the VAD service, including the care navigators with one family caregiver saying,“[All] the way through I’ve been in contact with the navigators. Without them this could not happen.”
Researchers found a series of barriers exist in Victoria. Some reflect the challenges previously raised by doctors including the inability to raise VAD with a patient or meet with patients via telehealth.
One family caregiver said, “it takes a fairly determined person to raise it [VAD] with their health care team. I think for a whole raft of reasons, including health literacy and communication… it’s a real problem with the Victorian legislation.”
Another said, “Certainly for mobility-related neurological degenerative diseases, and anything else really, the inability to telehealth is just horrendous… Growing up in [Town], that’s six and a half hours from Melbourne. You know, if you’re going to tell people they can’t access this medication until they’re within zero to six months of dying … they’re potentially ruling out all their travel time to be able to make these interviews … if we’re not allowed to use telehealth.
Other barriers were new, like the ability for institutions to object to VAD, effectively forcing terminally-ill patients to transfer out of their familiar environments to receive VAD care..
“[That] was a significant challenge and just created a whole lot of stress on what was her last day. You know, it was this frantic rush and … then having to wheel her out and she couldn’t say goodbye to people. Yeah, it just was just [laughs] … you get to the top of the mountain and then you’ve got that last big, huge boulder to climb over. It will always be a great sadness for me that the last few precious hours on Mum’s last day were mostly filled with stress and distress, having to scurry around moving her out of her so-called “home”,” said a family caregiver.
Where to next?
Ruthie Jeanneret said the study recommended several strategies to improve the VAD process for patients.
- Information should be more widely available so patients can make contact with VAD services earlier
- Increase the number of doctors trained in VAD
- Mandate referrals to a willing doctor or provide details of the Care Navigator service
- Allow doctors to raise VAD with patients and to hold telehealth consultations
- Ensure VAD Care Navigators and the Statewide Pharmacy Service are sufficiently resourced
Listen to Professor Ben White and PhD student Ruthie Jeanneret discuss the research here.