An investigation by The Age has uncovered troubling cases of terminally ill aged care residents being blocked from accessing voluntary assisted dying inside the facilities they call home, forcing some to spend their final days navigating transfers, medical assessments off site, and added emotional distress.
The issue has sparked renewed debate about transparency in Australia’s aged care sector, with doctors, families and advocacy groups questioning whether some providers are doing enough to support residents’ legal end-of-life choices.
Under current federal aged care standards, older Australians have the right to make decisions about their care, including access to voluntary assisted dying where it is legal. But according to clinicians working in Victoria, that right is not always being honoured in practice.
Melbourne physician Margaret Fraenkel said she had recently cared for two patients living in aged care who encountered barriers when trying to access the scheme.
“They are already stressed about the VAD and their looming death,” Fraenkel told The Age.
She said one patient planned to transfer to hospital, while another tried to move to a different facility, but both died before they were able to access the medication.
Families have also spoken out about the emotional toll.
Susie Germano said her mother, Rosemarie, who was living with terminal cancer, made it clear she wanted to pursue voluntary assisted dying shortly after moving into residential care last year. But according to the family, the facility would not allow the process to take place on site.
“It was a complete shock,” Germano told The Age. “Not once was it mentioned to us that they don’t support VAD.”
Instead, Rosemarie was transferred back into hospital, where she spent weeks waiting for approvals before eventually receiving the medication.
Doctors say the barriers are not limited to transfers. Oncologist Cameron McLaren said he has conducted consultations in aged care car parks after being denied access to residents inside facilities.
“That’s not the way this should be conducted,” he told The Age.
The issue comes as advocacy group Go Gentle Australia releases new research suggesting many aged care providers still do not publicly disclose their position on voluntary assisted dying, despite the practice now being legal across every Australian state.
Advocates say the lack of clear information leaves families vulnerable at one of the most difficult moments of their lives, often only discovering a provider’s position after a loved one has entered care.
While some providers say they support residents’ choices, campaigners are now calling for all aged care homes to clearly outline their policies upfront, allowing families to make informed decisions before moving in.
The Victorian government has already passed reforms aimed at improving access to voluntary assisted dying, including changes to communication laws due to take effect next year.
These stories beg the questions:
– why can and how do Providers of ALL aged care pathways keep their registration AND government subsidy that is client, not provider, allocated when a Provider refuses to offer and actively support client choice?
– has the legal position of the strengthened ‘Aged Care Standards’ been tested, where ‘standards’ appear less enforceable than ‘rights’?
– is ‘choice’ now being assessed – for all pathways and all levels – under the strengthened Aged Care Quality Standards and included as a parameter in Provider audits, registration, renewal and performance monitoring?
It’s not just end of life care pathway either and many Support at Home providers do not offer client choice, only their own in-house services, yet this is not shown in fee schedules or advertised.
The issue of ‘choice’ and public visibility of each Provider position on choice, across ALL aged care pathways needs to be called out and resolved.
Our Aunty died in a private hospital in Geelong last week after she was transferred from a nursing home. She had a heart attack literally straight after a Cardiologist told her that he could not operate and he was going to refer her to palliative care. We were going to visit her but because it was a public holiday our phone call was transferred to a Ward Clerk in ED who told my wife that we were not on the NOK list so we could not speak to the Nurses in Cardiology to ask our Aunty if she wanted a visit. Before our Aunty died I submitted a public complaint using Google Review. Patient Liaison then rang me after our Aunty died not knowing that she had died. This hospital urgently needs to train frontline staff in how to speak to family members and how to mitigate bad news. Especially when that bad news can upset you so much you have a heart attack and die. Our Aunty should have been supported better and she would have had a kinder journey if staff in the nursing home and the hospital had been better trained in interpersonal skills and she had received appropriate counselling and placement in palliative care in Geelong.
It is so hard to find a place in residential aged care homes,that most people don’t have any choice as to where their loved one goes. They need the care at that time,so I doubt many would refuse an available bed because of the facility’s VAD policy.