Canberrans want good deaths

ACT citizens should congratulate Minister Tara Cheyne MLA and the ACT Legislative Assembly for passing the ACT's Voluntary Assisted Dying Act 2024 in June 2024. It is a monumental achievement to achieve the most progressive voluntary assisted dying (VAD) law in Australia at the first attempt. It will give many Canberrans peace of mind knowing that they can end any unnecessary suffering at the end of their lives. That makes Canberra a better place.

Should the Act remain unchanged until the next Act review? Tara Cheyne knows that I do not think so. No law is immutable. Laws should change with evidence and argument. With respect to VAD, we should legislate what is ethically right to allow all people to mitigate their suffering, regardless of deficient state laws. Any Act amendments demand good critical thinking and a maturing of the VAD debate.

That changes are necessary is not criticism of the new Act or of Tara Cheyne. Tara and I have both lost a parent to pancreatic cancer. I know that Tara Cheyne is a person of integrity and has been committed to delivering the best possible VAD legislation. She has done an incredible job managing politics and conservative religious and other stakeholders in the run up to an election. In such a political environment, a government cannot drive too far ahead of community expectations.

The problem is thus rooted in Canberrans' understanding of VAD. We are looking forward to educating Canberrans and working with Ms Cheyne and an incoming government, of whichever flavour, to amend the Act and improve it.

So, even at this honeymoon stage of the Act, before it commences, I would like to challenge Canberrans to think critically about an analogous thought experiment.

Let us assume that abortions were illegal in the ACT. The government of the day then decides to legalise abortion. It mirrors legislation in the Australian states, so only raped adult Canberra women are eligible. The government argues that, because women who had been raped were in a more dire predicament than women who had not been raped, limiting eligibility is an important safeguard to protect vulnerable women from having abortions they would later regret. The government also argues that non-adult women are ineligible because they do not have abortion decision-making capacity, while ignoring the fact that their guardians do.

Rational Canberrans would see these claims as specious and unsubstantiated responses and an egregious violation of human rights. All women should be able to determine what is right for their own bodies and obtain an abortion if they choose.

Analogous arguments used in the VAD debate have been lapped up by many pundits. In the same vein as the abortion scenario, the VAD Act is unnecessarily restrictive and ethically unsatisfactory. Two significant VAD scenarios use the same fallacious arguments.

First, a person is only eligible for VAD if their doctors assess their condition as 'advanced' and 'progressive' and 'expected to cause death', that is they are in a dire situation. However, if a person does not meet all these conditions but is suffering intolerably, they are ineligible for VAD. The government argues that it is a safeguard to prevent vulnerable people accessing VAD. No suffering person should be excluded from VAD. As in the abortion scenario, and given the Act claims to respect individual autonomy, all people should be able to determine what is right for their own bodies.

Second, a person might lose decision making capacity, such as if they were to suffer from dementia, MND or other debilitating conditions. They will be ineligible for VAD, even if they had previously made explicit, either through advance care directives or their enduring power of attorney, that they would want VAD in specified scenarios. Their position is clear, but it is ignored.

Why are dementia and like conditions such a big issue? Dementia is now the greatest burden of disease in the over-65s, the most significant cause of death in women and the second leading cause of death for all Australians. Many Canberrans would rather VAD if they think that, in their future, they would exist as a non-functioning vegetable unable to recognise their family.

If a person were to lose decision making capacity, Dr Marisa Paterson MLA offered a solution. She is working the problem. She developed amendments that the Government explore models to address where an individual has lost decision making capacity, including enduring power of attorney provisions or advanced care directives. Her amendments were limited to the infrequent case of a person losing decision making capacity after reaching the final stage of the VAD regulatory process. That is too restrictive. If the use of VAD advanced care directives or attorneys are acceptable-they occur elsewhere without problems-they should be acceptable for all people without decision making capacity at any stage of the regulatory process.