Voluntary Assisted Dying legislation must be ethical and best practice

By David Swanton

Posted Saturday, 11 February 2023 in Canberra Times.

Why the criteria we legislate are so vital

The needs and circumstances of those who may look to access voluntary assisted dying will be diverse. But which model is adopted could significantly impact how many people in need of the program are actually eligible to access it. 

Future legislation in the Australian Capital Territory (ACT) 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 Northern Territory (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, 9 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 well-being and avoid suffering, and prevent ineligible people from accessing lethal drugs. 

What do people have to say about it?

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% of respondents), 72% had at least one university degree, 61% were female and 75% 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 internationally, 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% support in the survey. 

We should say no to a medical model

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% of respondents considered that terminal illness should be a VAD eligibility criterion, although 100% said that being terminally ill was sufficient to access VAD. For unbearable suffering, these figures were 34% and 80% 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% of respondents thought that a child suffering unbearably could access VAD. A child’s well-being 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. 

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. 

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.

David Swanton is a scientist, ethicist and Exit ACT chapter leader.