Why were our assisted dying wishes ignored in ACT bill?

The joint ministerial media release said the bill is "about people, and choice, autonomy and dignity at the end of their lives" and "our evidence-based model ... responds to the known issues in other jurisdictions and reflects the ACT's unique circumstances, together with the Canberra community's views".

A superficial examination of the bill shows that its stark realities are very different from these aspirations.

That the bill "reflects the ACT's unique circumstances, together with the Canberra community's views" ignores the fact that the leading preferences of the community found in the survey, conducted to inform the development of the bill, are not in the bill.

To bring the ACT VAD law into line with community preferences will not be possible until 2030-2031 at the earliest, if the bill passes as is.

The eligibility criteria and processes necessary to gain access to VAD requires that, at the time of applying for access, a person must: have an incurable condition; and, that the conditions is progressive, advanced and expected to cause death; and, be "close to death"; and, be experiencing intolerable suffering (mental, physical and/or anticipated); and, have diminishing quality of life.

A person seeking access to VAD must undertake a complex process before getting access.

That person must: meet all the medical eligibility criteria at the time of applying; consult with two or three healthcare practitioners; make three voluntary/uncoerced requests, the second in writing and witnessed; and display decision-making capacity throughout the process. Access to VAD can be revoked if the person loses decision-making capacity before they die.

The requirement of the bill that decision-making capacity is maintained though the whole process exposes Canberrans to a series of lotteries.

You lose if: you have an accident or rapid onset illness resulting in loss of decision-making capacity before you develop the extensive list of other health issues in the eligibility criteria; you have all the health issues in the eligibility criteria but misjudge when to start the access process (a problem acknowledged in several of the state VAD annual reports); you complete one or two requests then lose decision-making capacity; having been granted access to VAD you lose decision-making capacity before dying.

A close examination of the bill, and of the compatibility statement, shows that relevant evidence from Australia and "other jurisdictions" are either ignored or, apparently, not examined - although the footnotes to the compatibility statement suggest that much of it was known.

The ACT Legislative Assembly has established a select committee to "examine the bill and any other related matters." It reports back to the Assembly on February 29, 2024.

The committee might start by examining the divergences between the aspirational statements in the joint ministerial media release and the realities of the eligibility criteria and processes in the bill.

The widely circulated discussion paper identified 16 issues key to the design of the bill. Seven issues related to safeguards and eligibility criteria and nine to processes.

The most common (14 per cent of the 900 replies) suggestion, relating to safeguards and eligibility criteria, was that advance care directives should be a legal way of recording a person's preference for voluntary assisted dying.

The proposal for the use of advance care directive was supported by three of the four stakeholder roundtables - disability and mental health communities, health professionals, and the clinical grand rounds session. The conversation snapshot of the first nations roundtable did not mention advance care directives.

Advance care directives could reduce or eliminate the lotteries of not getting access to VAD discussed earlier.

In the ACT survey, 13 per cent of respondents proposed that people with non-terminal conditions should be eligible for voluntary assisted dying. The ACT bill do not have a requirement that death is expected in a specified timeframe. The compatibility statement said that the conditions surrounding the ACT eligibility criteria and processes will achieve the same effect as specified timeframes.

The bill specifically excludes disability, mental disorder or mental illness as eligible conditions. It does not mention extreme untreatable chronic pain. People with these conditions frequently experience intolerable suffering and diminished quality of life for long periods before dying. The suicide rates amongst people with these conditions are two to five times higher than the community rates.

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Why were the two highest ranked community requests, advance care directives and access for non-terminal conditions, not included in the ACT bill? Was it thought that these were the views of a noisy vocal minority that could be ignored?

The select committee could also consider findings, from Australia and overseas, about the opinions of people seeking, or approved, for VAD. A consistent finding is that people seek access to VAD because of: decreasing ability to participate in activities that made life enjoyable; loss of autonomy; loss of dignity; a desire to have some control over the timing of their own death; pain generally ranks well down the list - even for cancer patients.

Another consistent finding, in Australia and overseas, is that about 30 per cent of all people who are given VAD drugs do not use them - this is consistent with the importance to people to choose their end of life. So why does the ACT bill have to be underpinned by intolerable suffering and near death?

The select committee might also consider conducting a survey of to test, rather that speculate, about Canberrans' attitudes to a more humane set of eligibility criteria and processes that do not involve intolerable suffering and closeness death. Who knows, a government that usually prides itself on leading the way on social change might just accept a dying with dignity bill.