A human rights model that does not discriminate should underpin voluntary assisted dying legislation

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’.

It should not. State VAD legislation is flawed. It discriminates on the degree and type of suffering, as 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 must suffer as they would be ineligible for 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, non-residents and tourists must suffer, although suffering does not begin at adulthood or the ACT border. We can do better than copy state VAD legislation.

These problems arise from state VAD legislation being founded on 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 other problems, underscored by just two questions. First, we recognise that individual autonomy means a woman can have an abortion at 20. But if she has locked-in syndrome at 50, VAD doctors under the states’ medical model would assess her as ineligible for VAD. At what age does a person lose the right to their body?

Second, why must a terminally ill infant or child be condemned to suffer when a suffering adult can choose to avoid suffering and access VAD? There is no sound reason. People can throw up a red herring: that as children don’t have decision-making capacity, they can’t make important decisions about their lives. This is fallacious, as all children can have vital medical procedures. We allow their well-informed parents or guardians to make decisions acting on the best advice of doctors. All suffering should be able to be mitigated if we are to make the world a better place.

In a defining statement of individual autonomy, John Stuart Mill wrote that ‘Over himself, over his own body and mind, the individual is sovereign’. The states reject this position. We wouldn’t accept governments or anybody else telling us who we can have sex with or overruling our decision for 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 is ethical, respects individual autonomy, and does not discriminate. It would have an 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’. The ACT Government should specify this policy directive so that it knows what it is trying to achieve.

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 Societies.

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, 2-doctor approval, being terminally ill and having limited life expectancy—the key criteria that underpin state VAD legislation.

ACT politicians should legislate to allow people to mitigate suffering without discrimination. It is disappointing that no state politician successfully advanced the case that individuals have rights and that discriminating based on the degree or type of suffering, life expectancy, age, or residency status is ethically wrong.

As a scientist and member of Exit, I have the knowledge to access legal lethal substances to die. Not everyone does. 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 some people will suffer, while others may continue to act outside of the regulatory system. An opportunity to develop world leading VAD legislation would have been missed.

The substantial Exit ACT submission to the ACT government can be found here.