In recent years, voluntary assisted dying, or VAD, has become a legal option across the country. Each of the six states plus – most recently – the Australian Capital Territory, offers terminally ill people the potential to access VAD.
The process can be accessed only in very specific circumstances and following careful review.
As public debate around access to VAD continues, one of the most complex and ethically charged issues is whether dementia should be included as a qualifying condition.
Dementia is known to be the second leading cause of death among Australians over 65 and so many question whether individuals with advanced dementia should have access to VAD.
Understanding VAD in Australia
The introduction of VAD legislation across Australia marked a significant shift in end-of-life care. As I write this in October 2024, VAD only remains illegal in the Northern Territory.
VAD laws vary from state to state particularly as to eligibility requirements but there are commonalities – the person must be over 18, be diagnosed with a terminal illness, and have competency to make the decision.
One of the key eligibility requirements for VAD in Australia is the competency of the individual at every stage of the process.
This means that the individual must be able to give proper consent not only when they make the initial request but also during the administration of the VAD substance.
This requirement poses a significant challenge for individuals with dementia, as the progressive nature of the disease ultimately leads to a loss of decision-making capacity.
Should dementia qualify for VAD?
Dementia slowly robs individuals of their memories, personalities, and ability to make decisions.
While it is currently excluded as a qualifying condition for VAD in Australia, many argue that individuals with dementia should have the right to choose VAD in the earlier stages of the disease, while they still have the capacity to make these kinds of decisions.
Advocates, including notable public figures such as former Australian Chief Scientist Ian Chubb, Dr Rodney Syme, writer Michael Bachelard and many within the Dying with Dignity community, suggest that allowing individuals with dementia to make requests for VAD could help them avoid prolonged suffering in the final stages of the illness.
This issue is particularly relevant in the Northern Territory, where draft legislation is under review.
As public discourse on dementia and VAD continues to evolve, policymakers are being urged to consider whether dementia should be included as a qualifying condition, with appropriate safeguards in place.
We all deserve the right to make choices about our own lives on our own terms
As specialist lawyers in medical and aged care law, we have encountered numerous cases that highlight the ethical and legal complexities surrounding dementia and VAD.
One example involved a client in the early stages of dementia who sought advice on making an advance care directive to express her wish for VAD, should the option become available.
Although current laws prevent the use of advance care directives for VAD in Australia, this case reflects the deep desire of individuals with dementia to maintain autonomy over their end-of-life choices, and to end their life with respect and dignity.
As these cases become more common, it is crucial to address the ethical and legal implications of allowing individuals with dementia to make advance requests for VAD.
Legal and ethical considerations
One of the key challenges for individuals with dementia seeking VAD is the loss of decision-making capacity.
In the later stages of dementia, people often lack the cognitive ability to give proper consent, making them ineligible for VAD under current Australian law. This raises important ethical questions:
- Should individuals with dementia be allowed to make advance requests for VAD?
- And if so, how can we ensure these requests align with their best interests?
International models, such as laws in the Netherlands and Canada, offer some insight into how this issue could be addressed locally.
In the Netherlands, individuals can make advance requests for VAD, which allow them to outline their end-of-life preferences before they lose capacity.
However, this system also presents challenges, particularly in cases where the individual seems content in their current state but had previously requested VAD.
These situations place a heavy burden on family members and healthcare professionals, who must navigate the complexities of interpreting the individual’s wishes whilst also acting in their best interests.
In Australia, advance care directives cannot be used for VAD, and family-initiated directives are not permitted. As a result, individuals with dementia are often left without the legal means to ensure that their end-of-life wishes are respected.
The responsibility of institutions
Another important consideration is the role of institutions in providing or denying access to VAD.
Under Australian law, institutions such as hospitals and aged care facilities have the right to opt out of participating in VAD. However, they are required to provide patients with information about their rights and options under the law.
For permanent residents in aged care facilities who are eligible for VAD, institutions must facilitate access to VAD services, even if the institution itself chooses not to participate.
This requirement ensures that individuals have the option to pursue VAD if they meet the eligibility criteria, while also respecting the rights of institutions to maintain their own ethical standards.
Broader ethical and practical implementations
At the heart of the debate over dementia and VAD lies the tension between autonomy and vulnerability.
On the one hand, individuals with dementia should have the right to make decisions about their own lives, including their end-of-life care. On the other hand, there is a need to protect vulnerable individuals from coercion or abuse, particularly in cases where family members may seek to influence their decisions.
Community debate and ongoing reviews of VAD legislation across Australia will be crucial to this evolving ethical landscape, especially as public opinion shifts and new research emerges.
Policymakers will need to carefully balance the rights of individuals with dementia with the need for robust safeguards.
By considering the perspectives of healthcare professionals, patients, and families, we can work towards a system that respects the autonomy of individuals with dementia while safeguarding their wellbeing.
Because we all deserve the right to make choices about our own lives on our own terms.
Catherine Henry is the founder and principal of Catherine Henry Lawyers, and a specialist in elder law
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