David Swanton | How we shape voluntary assisted dying legislation in the ACT will have a big impact on who is actually eligible to access it

Future ACT legislation for voluntary assisted dying (VAD, voluntary euthanasia) must be ethical, best practice, consistent with human rights principles and legislation and reflect the views of VAD supporters in the Canberra community. A medical model should be rejected. And here is why.

The ACT and NT now have the same right to regulate VAD as the Australian states, but it would be wrong to mirror state VAD legislation that is not best practice. In general, state legislation only allows VAD for terminally ill adult residents, suffering unbearably, who are willing to jump many regulatory hurdles while suffering in their final days. And too bad if doctors assess that you are not sufficiently sick to die. This unjust discrimination is not good enough.

If the ACT government legislates ethical, best-practice VAD policy, then ACT residents could exercise their own consciences and make voluntary decisions to avoid suffering at the end of their lives.

An ethical, non-discriminatory regulatory system that respects individual liberty will result if the policy objective is "to ensure 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 best regulatory systems - Switzerland comes closest, and internationally, nine of 13 countries that regulate VAD do not require that a person be terminally ill - must be justifiable ethically: they should respect human rights, allow people to optimise their wellbeing and avoid suffering, and prevent ineligible people from accessing lethal drugs.

This ethical regulatory objective meets the needs of VAD supporters. With the assistance of the World Federation of Right to Die Societies and Exit International, I surveyed VAD advocates and supporters around the world in 2021 to inject some much-needed data and objectivity into the VAD debate. The aim was to understand their priorities and obtain their views on eligibility and other criteria for VAD.

Respondents to the Ethical Rights Survey were mostly over 50 (84 per cent of respondents), 72 per cent had at least one university degree, 61 per cent were female and 75 per cent were not religious. Their most supported VAD eligibility criteria included that a person be well informed, have decision-making capacity, and make a voluntary decision to end their life. These might be the only eligibility conditions required if governments legislate a human rights VAD model.

However, state governments and some governments worldwide have legislated a medical model for VAD. That usually requires that multiple doctors certify that an adult resident or citizen is terminally ill or suffering unbearably, has limited life expectancy, and is otherwise a suitable candidate for VAD. All these criteria had less than 26 per cent support in the survey.

We can consider why these medical model criteria have been, and should be, rejected.

Doctors have no right to reject a woman's decision to have an abortion. Ethically, a woman has a right to make decisions about her own body. We should similarly oppose VAD medical models that permit doctors to reject a competent person's request for VAD, as it would infringe on the person's individual liberty. Individuals are responsible for their own lives, not doctors. Doctors might have a role in administering drugs - only if the person is unable to do so themselves - but no more.

Significantly, survey respondents did not support being terminally ill or having limited life expectancy as eligibility criteria. Only 22 per cent of respondents considered that terminal illness should be a VAD eligibility criterion, although 100 per cent said that being terminally ill was sufficient to access VAD. For unbearable suffering, these figures were 34 per cent and 80 per cent respectively. That is, it should be unnecessary for a person to be terminally ill or even suffering unbearably to access VAD, but if they are, that should be sufficient for them to access VAD. That majority view is consistent with a human rights VAD model. It is wrong to unjustly discriminate against people because they are not terminally ill or suffering unbearably.

Additionally, 65 per cent of respondents thought that a child suffering unbearably could access VAD. A child's wellbeing must be paramount; no child should ever be required to suffer when adults can access VAD and need not suffer. Civilised societies can do better. While children suffering unbearably might be unable to make a voluntary decision, their parents, guardians, and doctors could, as in similar tragic medical matters, act in the child's best interests.

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There were many interesting survey responses. Respondents supported a request for VAD in an advance directive, which stipulates the conditions under which a person could access VAD if they were incapable of deciding at a later stage, including after the onset of dementia. This occurs in four countries already. Respondents supported immediate access to VAD if a person is in palliative care or is of advanced years.

If the latter were legislated, it would mean that people like Dr David Goodall would not need to travel overseas to die. Although 104-year-old Goodall was not ill, he travelled from Australia to Switzerland to die in 2018. Most respondents did not want to leave their country to die. In the absence of VAD legislation, Goodall was not permitted to die on his own terms in his own country.

The ACT government has an excellent opportunity to develop ethical, advanced, and world-leading VAD legislation.

Such VAD legislation, like a Swiss human rights model, would respect individual rights, not discriminate, and allow all people the option of avoiding suffering. That is what we all should want.