The ACT Government has recently conducted a consultation process on voluntary assisted dying (VAD) in the ACT. Its consultation paper suggested that the ACT “will be pursuing a model consistent with Australian states”.
State VAD legislation is flawed. It is unethical and discriminates on the degree and type of suffering. A person must be near dead and suffering intolerably to access VAD. If a person is suffering, but according to doctors is not ‘sick enough’ or has the wrong sort of illness, then bad luck, they can’t access VAD.
State legislation also discriminates on life expectancy, age and residency status. People who have less than six months to live can access VAD, but if they have 20 years to suffer before death, then they must suffer for over 19 years before accessing VAD.
That is perverse; the people who could suffer the most, must suffer the most. Terminally ill children and tourists must suffer, although suffering does not begin at adulthood or the ACT border.
These problems arise from state VAD legislation being founded on a VAD medical model with a discriminatory policy objective. As discussed in the British Medical Journal, the medical model requires that doctors counsel and refer (adult resident) patients, and other doctors will assess those patients and prescribe drugs to them (if they are suffering unbearably, terminally ill and with limited life expectancy).
The bracketed phrases, discriminating on suffering, life expectancy, age and residency, are included in the forms of the medical model legislated in Australian states.
It was noted that while doctors counselling, referring, assessing and prescribing are usual and innocuous tasks in the medical model, acting as judges of whether a person’s life is worth living are not. We don’t need doctors involved.
If all people have the right to access VAD, there is no need to assess people (except for decision-making capacity) and we know what drugs can cause a peaceful death. It is not as if people are worried about side effects when they choose VAD.
Medical model legislation has many problems. If a woman can have an abortion at 20, why can’t she choose VAD at 50 if she has locked-in syndrome? And why must a terminally ill infant or child be condemned to suffer when a suffering adult can access VAD?
We wouldn’t accept governments or anybody else telling us who we can have sex with or whether we can have an abortion, so why would anybody accept governments dictating to us whether we are sick enough to die?
ACT VAD legislation should instead be based on a VAD human rights model that respects individual autonomy. It would have a policy objective of the form ‘that all people have the right to access VAD so that their quality of life is not reduced below what they consider to be an acceptable threshold’.
This policy objective is supported by VAD advocates and supporters in Canberra, Australia, and the world. That conclusion derives from the comprehensive worldwide 2021 Ethical Rights VAD Survey, conducted with help from Exit International and the World Federation of Right to Die.
Survey respondents thought that the most significant VAD eligibility criteria should be that a person has decision-making capacity, is well informed, and makes a voluntary decision. They thought that unbearable suffering was sufficient but not necessary to access VAD – that is, it should not be an eligibility criterion.
They overwhelmingly rejected the eligibility criteria of citizenship, two-doctor approval, being terminally ill and having limited life expectancy – the criteria that underpin state VAD legislation.
As a scientist and member of Exit, I have the knowledge to access legal lethal substances to die. If the ACT Government does not develop legislation that meets the needs of people who will use it (as opposed to people who will not), then many people may continue to act outside of the regulatory system.
An opportunity to develop world-leading VAD legislation that could mitigate suffering without discrimination would have been missed.
The substantial Exit ACT submission to the ACT government can be found here.
Dr David Swanton is chapter leader for Exit ACT and director of Ethical Rights.