When Kimberly Jayne spoke to her former partner Rohan on the phone, months after their amicable breakup, she was shocked to hear that his speech was slurred. “I feared he’d had a stroke,” she recalls.
Kimberly convinced Rohan to see a doctor, and when he was diagnosed with motor neurone disease (MND), she became his primary carer. It was October 2020, towards the tail end of Melbourne’s long lockdown, and Rohan’s close family lived interstate.
“He had progressive bulbar palsy, [a type of MND] which affects the throat, the swallowing, the speech,” Kimberly says. “He started declining fairly rapidly from October down to being in a wheelchair in July. By August 2021 he decided, ‘I’m going to have my ducks in a row with voluntary assisted dying’.”
That month, Kimberly and Rohan travelled to Parkdale for an assessment with a neurologist at Calvary Health Care Bethlehem, one of Victoria’s three leading MND service providers and the main statewide service. The trip, in an accessible taxi, took nearly an hour from where Rohan lived.
Photograph: Penny Stephens/The Guardian
But his request for euthanasia was rebuffed. In Victoria, people wishing to access voluntary assisted dying (VAD) can only do so if they have a condition likely to cause death within six months, or within 12 months for neurodegenerative diseases including MND. “You have to get the neurologist to confirm that he has a death sentence … They had to provide that letter of evidence,” Kimberly says. “The neurologist declined to process that.”
“She said, ‘I’m sorry, I have to decline. I can’t help you’,” Kimberly recalls. “That was a waste of a day.” Rohan, she says, was “downhearted and tired and angry, having gone all the way there”.
“I resented going all the way to [Parkdale] and I’m glad he didn’t have to spend much time in that facility.”
Complicating the matter is that Calvary Bethlehem, a public hospital specialising in palliative care, is Victoria’s largest health provider for people living with MND. But because it is a Catholic institution, it does not provide voluntary assisted dying. Catholic Health Australia’s code of ethics does not permit any action or omission that “causes death with the purpose of eliminating all suffering”.
“Government-funded care providers shouldn’t be able to pick and choose what types of healthcare services they provide based on religion,” Kimberly says. “It’s a form of caregiving, voluntary assisted dying – it’s a healthcare option and it’s not even on the table.”
In a statement, Calvary Health Care said that for privacy reasons it was unable to comment on individual patients.
“We do not provide VAD, including clinical assessment for VAD,” it said. “We do respect patient choice and recognise some patients in our care may wish to explore the option of VAD. In these instances, our staff hold open, respectful discussions with patients and their families about their treatment and care at the end of life, including VAD should a person raise this topic.”
“We do not block or impede a person’s access to VAD if that is their choice.”
The legally required review of the first years of Victoria’s VAD laws is under way, and will examine whether the scheme has adequate safeguards and protections, and allows equity of access, with a final report due by the end of 2024. But the review will not consider any changes to the state’s legislation, which came into effect in 2019. All states have followed Victoria in legalising VAD, with various levels of protections for people living in, or receiving care from, religiously affiliated organisations.
Three states – Queensland, South Australia and New South Wales – include institutional objection provisions in their legislation. It means in those states, people are able to access voluntary assisted dying if they are a resident of an aged care or palliative care facility, even if the facility objects, because it is considered the patient’s home. VAD advocates are calling for national legislation to ensure equity of access no matter where people live.
The president-elect of Voluntary Assisted Dying Australia and New Zealand, Dr Rohan Vora, says VAD also needs to be better integrated into palliative care rather than treated as a separate service so that patients aren’t delayed in understanding their options.
Vora says while individual health professionals would always have the right to opt out, “it is definitely possible to have both VAD and palliative care, even in a conscientiously objecting organisation”.
“I am a palliative care physician who has been involved in multiple VAD cases. Scores of other palliative care clinicians also regularly provide VAD services.
“Even if external services must be brought in to provide VAD assessments and administrations, the patient’s choice has been respected and they receive high-quality, continuous care.”
Dr James Hurley, a voluntary assisted dying doctor working in Victoria’s Ballarat region, said consistent, humane laws are needed throughout Australia. “I am certainly hearing ongoing stories of obstruction to access VAD by Catholic providers, even now,” he says.
Hurley was involved in the care of a 75-year-old woman with a neurological condition who wanted to access VAD, a case which has stuck with him in the months since. She was a long-term resident in a Catholic nursing home just outside Ballarat, which did not allow for the required three consultations before being approved for VAD to occur onsite.
“But that nursing home was her home, and people should not have to suffer the indignity of having to move from their home just because they have chosen legally to end their life,” Hurley says.
“This patient was immobile and required hoist transfer to be relocated. She had a large enough family of young sons around her who took on the role of lifting her up and moving her, and it was moving to see the way they came together to support their mother and care for her.”
With the support of her family, she was lifted out of her bed, and driven 60km for each of the three separate required consultations for approval for VAD. Her sons then transported her to one of their homes, where Hurley administered the VAD medication.
“It was very affirming to see how her family came together to support her through the process,” Hurley said.
When he brought the obstruction in care to the attention of the nursing home’s board of management, the response was that “they owed a duty of care to any of their staff who may have been conscientious objectors”.
“Patients deserve a choice and when patients get choice everyone wins,” Hurley says.
“The patient gets comfort in control of their care, families get comfort and reassurance that there is a plan in place led by their loved one, and patients can get care outside of the hospital without taking up a hospital bed if they choose to die at home.”
Eventually, with assistance from the Victorian Voluntary Assisted Dying Statewide Care Navigator service, Rohan was able to access euthanasia. Other families have told Guardian Australia that the navigator service proved invaluable in helping them access VAD, but that religious organisations did not inform them about the service, leading to delays that affected how their loved ones died.
“By the time the dose was delivered, it was December [2021] and Rohan was in a really bad way,” Kimberly says.
“He [slept] in a wheelchair because he didn’t want to lie down in case he choked on his own saliva … A lot of muscle tone had gone in his neck so he had to be constantly propped up. He hadn’t had sleep for maybe a whole month in his own bed.”
Five days before he passed away, he texted Kimberly: “MND is ripping through my body. Can hardly stand any more. I’ve lost dexterity. Lost the enjoyment of meals. Can’t speak. I can’t handle this … I’m deteriorating day by day.”
“Please put the VAD into motion.”
Rohan died peacefully at home, surrounded by friends, and with his favourite Italo disco music playing softly in the background.
