URGENT UPDATE: Dementia patients across Australia are facing significant barriers in accessing Voluntary Assisted Dying (VAD) due to strict capacity requirements. Just announced during a recent webinar hosted by the Older Persons Advocacy Network, advocates are raising alarms about the plight of these patients as they are denied the right to choose their end-of-life care.
Gwenda Darling, a dementia patient, expressed her frustration, stating, “You can live in quite a demented state for many years… but when I have less than six months to live, I won’t have capacity and they won’t honour what I have written out.” This stark reality highlights a critical legal principle of VAD: patients must demonstrate full decision-making capacity to access these options.
The implications are profound. With dementia recently identified as the deadliest condition in Australia, many are questioning the current legal framework. Dr. Linda Swan, chief executive of Go Gentle Australia, stated, “The frustration that we hear so commonly from our community is that people don’t want that outcome… They’ve heard about what happens to people at the end of life with dementia, and they don’t want that outcome for themselves.”
VAD laws require patients to be diagnosed with a terminal illness, suffering, and able to demonstrate full capacity to make decisions freely. This means that many dementia patients, as their condition progresses, will inevitably lose their ability to meet these requirements, leaving them without a choice in their own end-of-life care.
In a significant political move, a proposal aimed at restricting VAD access for aged care residents in New South Wales (NSW) was defeated in State Parliament. The bill, introduced by Liberal backbench MLC Susan Carter, aimed to allow residential aged care facilities to block VAD access and eliminate the requirement to inform residents about their end-of-life options. The proposal was voted down by a margin of 23 to 16, highlighting the contentious nature of VAD discussions in the country.
Despite the ongoing debates, awareness surrounding VAD remains low. Dr. Swan noted, “Some people are just learning about it, and some people have had it as part of end-of-life care for many years.” The lack of public understanding is concerning as VAD has been available in Victoria for six years, yet many still remain in the dark about their options.
Additionally, Camilla Rowland, CEO of Palliative Care Australia, emphasized that VAD and palliative care are not mutually exclusive. “It’s quite common for those people who have selected VAD, they actually receive palliative care right up until they press the button, so to speak,” she explained. This perspective reinforces the importance of individual choice in end-of-life care.
Surprisingly, data reveals that nearly 30 percent of individuals approved for VAD ultimately decide against it, opting instead for palliative care. Dr. Swan pointed out that the very process of seeking VAD can provide patients with relief and strength, leading them to choose to continue with supportive care instead.
As the conversation continues, advocates urge for a reevaluation of the legal frameworks surrounding VAD to better support dementia patients.
“We’re a long way from answering that question. There’s a lot of research that needs to happen,”
Dr. Swan concluded, emphasizing the need for immediate attention and action on this pressing issue.
As developments unfold, it is crucial for individuals and families affected by dementia to stay informed about their rights and options. The demand for change in VAD regulations is growing, and the voices of those affected are becoming impossible to ignore.
Stay tuned for further updates on this evolving story.
