Amendments to Australian model VAD laws to permit access despite loss of capacity

Introduction

Since the passage of VAD laws in Australian jurisdictions, the issue most commonly raised with advocacy groups is the inability of those with dementia who want an assisted death to obtain one. Many people do not understand that under the “Australian model” laws, people whose capacity does not endure until death – whether as a result of dementia or another cause – cannot access an assisted death. This applies even if they have stated a wish for VAD in a lawful advance health directive; and even if they have been approved for an assisted death but are deprived of that choice by a later loss of capacity. Those who discover these facts are often nonplussed and deeply distressed by this feature of VAD and advance care planning laws. This tragic oddity is made starker when one realises that, in contrast, a person can prior to loss of capacity execute a binding Advance Care (or Health) Directive requiring that no nutrition or hydration be provided once a stipulated stage is reached.

In other words, there is a little-known but fundamental gap between the rhetoric of autonomy, dignity and compassion, and the harsh reality facing those who seek VAD but are denied the choice because of a loss of capacity.

What legislative change is needed to address this gap?

Remove the time to death criterion

Relevantly, s 16 of the Western Australian Act (taking that as an example) requires as the central eligibility criterion that a person is diagnosed with at least 1 disease, illness or medical condition that –

• is advanced, progressive and will cause death; and
• will, on the balance of probabilities, cause death within a period of 6 months or, in the case of a disease, illness or medical condition that is neurodegenerative, within a period of 12 months; and
• is causing suffering to the person that cannot be relieved in a manner that the person considers tolerable.

 As an aside to the focus of this paper, I make it clear at the outset that for a variety of reasons unrelated to the loss of capacity problem, there should be no eligibility requirement that a person is likely to die within a certain time-limited period[1]. Those reasons include:

• the lack of any medical or indeed rational basis for it;
• its inherent rigidity;
• the notorious difficulty of forecasting the expected time to death; and
• the fact that it excludes those suffering from long-term neurological or other conditions.

In the Australian context the Australian Capital Territory has broken new ground by not including any time to death requirement in its Act. Essentially it provides[2] that a person will be eligible if they have been diagnosed with a condition that, either on its own or in combination with 1 or more other diagnosed conditions, is advanced, progressive and expected to cause death. Importantly, it goes on to stipulate when conditions are advanced, namely if:

• the individual’s functioning and quality of life –
• have declined or are declining; and
• are not expected to improve; and
• any treatments for the conditions that are reasonably available and acceptable to the individual have lost any beneficial impact; and
• the individual is approaching the end of their life.

In all other Australian jurisdictions, the time to death (or prognosis) criterion effectively precludes all those who lose capacity from choosing a voluntary assisted death. This is because a person diagnosed with dementia but not yet deprived of capacity will not be accepted as being likely to die within 12 months[3]; and by the time that stage has been reached the person will lack the necessary cognitive capacity to make a considered request for VAD. Truly, a “Catch 22” situation.

Even in the ACT, the same outcome appears to be possible and perhaps likely. The reasons are explored later in this paper.

In any event a necessary step towards VAD access by those who lose capacity is the removal of the time to death criterion. Would it be a sufficient step, however? The answer to that question – despite the contrary views expressed by some - must be a resounding “No”. The reasons are expressed below.

Would the removal of the time to death criterion by itself render eligible those who lose capacity?

Careful analysis of the terms of Australian VAD Acts shows that a simple excision of the time to death criterion would not make any difference to those people. This is for 2 reasons:

• the requirement for ‘enduring capacity’[4]; and
• the requirement that the condition be advanced.  

Professors Ben White and Lindy Willmott have noted that removing timeframes would have no impact on the restrictions of the medical conditions that would permit access to VAD because the requirement for a person’s medical condition to be ‘advanced’ similarly constrains access to VAD.[5] With respect, they are plainly correct.

Under current Australian legislation a person with dementia will be eligible for VAD only if he or she presently has both the requisite capacity and his or her dementia is advanced; and it is highly likely that if the condition is advanced, the capacity will have been lost.

Estimates of survival after a dementia diagnosis range from 3 years up to 10 years[6]. No doubt an assessment of whether a person has advanced dementia will depend on many factors. However, it seems obvious that a case will not be seen as advanced if it is in the early stages of the condition’s normal path. An advanced condition can be interpreted as a condition that has not just ‘advanced’ (verb) but that also is ‘advanced’ (adjective) in the sense that it is well towards the end of the disease path, and in any event at least half-way along that path.

It seems virtually certain that capacity will have been lost by the time the condition is regarded as advanced (even allowing for the facts that capacity is VAD-specific, and that capacity may fluctuate markedly over time). According to a study reported in the New England Journal of Medicine[7] a useful description of the features of advanced dementia includes profound memory deficits (eg inability to recognise family members), minimal verbal abilities, inability to ambulate independently, inability to perform any activities of daily living, and urinary and faecal incontinence.

No solace can be drawn from the fact that under the federal Canadian MAiD scheme, some dementia sufferers can and do qualify (both under the original and now under the amended provisions)[8]. The Canadian eligibility criteria[9] are crucially different from those in Australian VAD Acts. The simple removal of the time to death criterion would not lead to outcomes for dementia patients similar to those in Canada, simply because in Australia the remaining eligibility criteria are not the same as in Canada.

I conclude that the continued application of the ‘advanced condition’ criterion would mean that an excision of the time to death requirement would provide no benefit to the class of people who for one reason or another lose capacity prior to a wished-for assisted death.

Further, of course, the explicit requirement that the person have enduring capacity, or capacity at the time of death, by definition will also preclude VAD access by a person with advanced dementia.

What additional amendments should be considered to achieve coverage for those who lose capacity?

I suggest that each of the following possible changes be considered for Australian jurisdictions in order to assist at least some of those who by a loss of capacity are deprived of their choice for a voluntary assisted death:

1. an appropriate definition (if not the removal) of the requirement that the condition be ‘advanced’;
2. the introduction of a ‘dementia specific’ advance care directive (ACD) pathway as an exception to the rule requiring enduring capacity; and
3. changes to the present references to suffering[10].

I deal with these in turn.

1. Appropriate definition of ‘advanced’

One option might be to seek the complete removal of the requirement for the condition to be advanced. However, success in that regard might appear unlikely.

An appropriate definition of the term should be settled on. The approach adopted in the ACT appears to be problematic, due to the notable elasticity of the phrase “approaching the end of their life”.

An alternative could be considered, namely that the person’s death as a result of the condition is advanced if it is ‘reasonably foreseeable’. In 2018 the WA Joint Select Committee advocated against a time to death criterion and recommended instead a requirement that death be reasonably foreseeable. This recommendation bears further consideration. Death being ‘reasonably foreseeable’ was the central feature in the original legislation in Canada. Despite the fears of many that it was too vague and elastic, clinicians found it to be workable. Subsequently it was removed as an eligibility criterion in Canada, but it continues nonetheless to be a key operative component in the MAiD scheme. This is because in what are called ‘Track 1’ cases (those whose death is reasonably foreseeable) it must be satisfied, and on recent statistics, such cases comprise 96.5% of those seeking MAiD[11].

A Canadian academic paper[12] usefully lays out the essential meaning attributed to this test over time. It concludes that the ‘reasonably foreseeable’ criterion will be satisfied by either temporal proximity (“a period of time that is not too remote”) or the condition being a predictable cause of natural death. An archived page on the website of the Canadian Department of Justice provides a very similar explanation (including that “natural death has become reasonably foreseeable” when there is a reasonable possibility of the patient’s death within a period of time that is not too remote).

While the meaning of the phrase may not be completely settled (and of course would depend very much on context), these suggested interpretations are helpful (even if the first alternative - ‘a period of time that is not too remote’ - may be thought to itself lack a suitable degree of precision).

I suggest that in Australian legislation the phrase could be defined more precisely, in terms of the condition being a predictable cause of natural death. A possible formulation – which excludes the uncertainty of any time-based component - is as follows:

“That the person’s death is reasonably foreseeable as the result of such disease, medical condition or injury (alone or in combination), with that requirement being satisfied if it is predicted on the balance of probabilities that such disease, medical condition or injury (alone or in combination) will cause the natural death of such person”.

Another weighty objection to the ACT approach is that one of its central components[13] rests on an interpretation by the assessing practitioner, not by the patient. A definition along the following lines would be preferable:

“A person’s condition is ‘advanced’ if their functioning and quality of life have declined to the point that they consider life to be no longer worth living”.

This definition would place in the hands of the person the subjective assessment of whether their condition has become advanced. As with the determination of suffering, this is entirely appropriate.

These two definitions could also be combined into one, as follows:

“That the person’s death is reasonably foreseeable as the result of such disease, medical condition or injury (alone or in combination), with that requirement being satisfied if:

• it is predicted on the balance of probabilities that such disease, medical condition or injury (alone or in combination) will cause the natural death of such person; and
• the person’s functioning and quality of life have declined to the point that they consider life to be no longer worth living”.

This resulting compound definition would require both the patient’s own determination as to their functioning and quality of life and the objectively assessed medical professional’s opinion about the likelihood of death. This might appeal as having a sound balance.

2. The inclusion of a ‘dementia-specific’ advance care (or health) directive

This is a crucial amendment. It is necessary to overcome the general requirement that up to the last moment a person accessing VAD must have the capacity to do so. A set of provisions enabling an exception to this general requirement must be grafted on to the existing Acts.

Many by now are aware of the Quebec amendments to its MAiD legislation, which came into effect in October 2024. They have much to commend them. They are a careful and comprehensive code and have been in operation now for a significant period. They allow a person to access VAD by means of a carefully constructed advance health directive signed while still having capacity. Despite a later loss of capacity this would allow (but not require) a doctor to provide VAD when the stipulated clinical manifestations are present. It includes provisions to ensure adequate safeguards against duress or coercion, and to ensure that the life of someone with dementia could not be ended in circumstances where the person resisted or appeared to resist an assisted death.

To fully appreciate how carefully considered and comprehensive are the Quebec amendments it is important to record that when the existing provisions of the Act are taken into account, the result is that for a person to become eligible for MAiD when capacity has been lost, the following criteria must all be satisfied:

• The person while still having capacity must have signed and registered an advance request which states reasonably identifiable clinical manifestations which will be the trigger for a MAID examination and possible administration;
• In order for the advance request to be valid, a medical professional must have considered prior to its execution that its description of those clinical manifestations was acceptable, and have signed off on them;
• The treating doctor or nurse practitioner (competent professional) must have undertaken a full examination of the person to reach a conclusion as to whether the clinical manifestations stated in the advance request have now occurred (it should be noted here that there are obligations on carers, medical professionals and other third parties at the relevant time to draw to the attention of treating doctors that in their opinion this may be the case);
• To reach a positive conclusion, those clinical manifestations must be exhibited on a recurring basis;
• In addition, the person must now be in a medical state of advanced, irreversible decline in capability;
• Further (and crucially) his or her medical state must give a competent professional cause to believe based on the information at their disposal and according to their clinical judgement that the patient is experiencing enduring and unbearable physical or psychological suffering that cannot be relieved under conditions considered tolerable;
• The competent professional must obtain the opinion of a second competent professional confirming that these criteria have been met;
• Any refusal to receive MAID “expressed by the patient must be respected and it is prohibited to disregard it in any manner”;
• If the person is “exhibiting behavioural symptoms resulting from their medical state, such as resistance to care” the competent professional must, based on the information at their disposal and according to their clinical judgement, rule out the possibility that the person is refusing to receive MAID – and must record in writing the symptoms observed and the conclusions of the assessment.
• Any refusal to receive MAID “expressed by the patient must be respected and it is prohibited to disregard it in any manner”;
• Finally, if the person is “exhibiting behavioural symptoms resulting from their medical state, such as resistance to care” the competent professional must, based on the information at their disposal and according to their clinical judgement, rule out the possibility that the person is refusing to receive MAID – and must record in writing the symptoms observed and the conclusions of the assessment.

It has been reported[14] that between 30 October 2024 (when the amendments took effect) and 4 September 2025 a total of 1,425 advance requests for MAID were added to the relevant Quebec registry (179 were rejected). Recent nformal information suggests that by April 2026 the number of registered advance requests had grown to approximately 2,400.

There remains a real question as to how many medical and health practitioners would be willing to assist patients using a Quebec-style system. This has proved a problem in The Netherlands. On the other hand, it should be observed that the Queensland branch of the Australian Medical Association has stated[15] that its members ‘strongly believe’ that a request in an AHD – made by a person who wishes to access VAD but is at risk of losing their decision-making capacity – should be acted on by a medical practitioner.

I acknowledge the serious ethical dilemma that would be faced by medical practitioners asked to assist a person to die in the absence of that person’s enduring capacity.  This is an issue that must be grappled with sensitively and sensibly. Although at present it appears likely that few health practitioners initially might be willing to assist in providing VAD in such cases, the simple fact is that some access is better than no access. The resulting position might well be similar to the present position in The Netherlands, namely very few instances of dementia sufferers being able to access VAD by use of an ACD. However, we have seen that professional attitudes change over time, exemplified especially by the recent increase in support for VAD among the medical and nursing professions in this country. Such change would likely facilitate a gradual increase in such access. The apparent viability in practice of such schemes in jurisdictions like Quebec and Colombia may very well portend a relatively rapid (but evolutionary) uptake and acceptance by experienced practitioners.

I recommend that the dementia-specific ACD be based on that devised originally by End of Life Choices New Zealand and later refined by the Doctors for Assisted Dying Choice.

A further consideration is that to increase both the chances of acceptance by legislators and also subsequently of acceptance by VAD practitioners, the amendments could be limited to a person already assessed as being eligible for VAD. Such a person, following assessment and in discussion with his or her coordinating practitioner, would be able to express in a binding, duly executed and carefully drafted ACD, the wish to have a voluntary assisted death once the stipulated clinical manifestations are present – and notwithstanding a loss of capacity in the meantime.

As an alternative (but much more limited) reform, the operation of the dementia-specific ACD could also be limited to an efficacy period of say 3 or 6 months (a suggestion made in light of Canadian experience with their ‘waiver of final consent’, to which it has some similarities).

This proposal also finds some echoes in the changes suggested by Dr Marisa Paterson during debate on the ACT Bill that – in her words – seek “to address a critical gap in existing VAD legislation across Australia, where a person loses capacity following the final request and is no longer eligible to access VAD”.[16]

The Paterson amendments proposed that once all the VAD criteria have been satisfied, and the coordinating practitioner has prepared the final assessment report, then a ‘VAD Attorney” would be able to make an administration decision for VAD on behalf of the person in the absence of the person having decision-making capacity. I note also that DWDNSW in its submission to the current NSW review has stated that it is possible to devise an appropriately safeguarded regime to allow a person with decision-making capacity to make an advance request for VAD which could be actioned in certain defined circumstances at the request of trusted proxies or enduring guardians[17].

This proposal warrants consideration, although in my view it would be greatly strengthened if used in conjunction with a dementia-specific ACD.

Colombia has taken a different but interesting road. In Judgment T-438 of 2025 the Constitutional Court of Colombia concluded that the concept of surrogate consent was incompatible with a constitutional understanding of the right to die in persons with disabilities, since “it is not a matter of substituting the person in his or her will[18]”. Rather, in certain scenarios “consent must be constructed from an exercise of interpretation of the will, and not from its replacement by decisions of third parties”[19]. This is based on “the manifestations, vital interests and previous experiences of the holder of the right”. Written advance directives (promoted by DMD) or oral statements to relatives may be considered in this interpretation.

3. Possible amendments to the ‘suffering’ eligibility criterion

In at least some Australian Acts, strengthening amendments to the present eligibility criterion on suffering would provide a useful complement to reforms enabling VAD access by those who have lost capacity. One possible ameliorating provision is:

“That the person is in a state of unbearable suffering resulting from a disease, medical condition or injury (alone or in combination), and that such suffering cannot be relieved in a manner that the person considers tolerable”.

Currently, VAD laws in all Australian states apart from Tasmania do not describe or qualify the degree of suffering required, but focus instead only on it being unrelievable (in a manner considered tolerable)[20]. In Tasmania the person must be “suffering intolerably” in relation to a relevant medical condition. Similarly, the New Zealand legislation requires that the person “experiences unbearable suffering that cannot be relieved in a manner that the person considers tolerable”.

In some other jurisdictions the emphasis (rightly) is not so much on how long a person is required to suffer before becoming eligible for an assisted death, but more on the quality of the suffering[21]. For instance, in the Netherlands under the Termination of Life on Request and Assisted Suicide, (2002), the physician assisting a person to die must hold the conviction that ‘the patient’s suffering was lasting and unbearable’, and the patient must ‘hold the conviction that there was no other reasonable solution for the situation he was in’. In Belgium, the equivalent provision in the Act on Euthanasia (2002), is that ‘the patient is in a medically futile condition of constant and unbearable physical or mental suffering that cannot be alleviated, resulting from a serious and incurable disorder caused by illness or accident’.

These jurisdictions have placed suffering at the fulcrum of eligibility. The changes discussed here would adopt that approach, which would be preferable to the present Australian focus on the inherently vague concept of an estimated time to death.

As well, ‘suffering’ should be defined to include the:

• anticipation or expectation of suffering;
• suffering arising from treatment; and
• suffering arising from complications associated with the treatment of the disease, illness, condition or accident.

This would pick up the Tasmanian and ACT definitions, which are more comprehensive than their counterparts in other states.

Conclusion

I hope that these recommendations will assist in the task of preparing a coherent and comprehensive set of proposed improvements to existing VAD legislation in Australia. This is needed to provide autonomy in relation to their end-of-life choices to the increasing number of Australians with dementia (which now is the leading cause of death in this country).

The advances fairly recently made in the ACT Act, and the publicity that will arise from a draft NT Bill, present an opportunity for campaigns for reform of current state legislation.

I suggest that such campaigns should essentially replicate the successful process established in Victoria and emulated in every other Australian jurisdiction, which led to the passage of our present VAD laws. That is, state governments and members of parliament should be called on to support an independent inquiry by a parliamentary committee into how to increase access to VAD by the steadily increasing number of Australians suffering from the scourge of dementia. A public, independent and official inquiry needs to take the place of Ministerial reviews, at least one of which has been wholly inadequate. The holding of such an inquiry would publicise the issue and generate further public support and the necessary pressure on government to act. Momentum is presently the missing ingredient.

While it is true that the crafting of amendments to Australian VAD legislation to allow VAD access by some who lose capacity is somewhat complex, and will attract some opposition and misunderstanding, it can be done. In fact, it is a far less challenging and radical change to previous law than was the wave of VAD laws that swept the country in a short time. The political difficulties in its way are greatly overstated. Research underway substantiates that a large majority of Australians favour it. Let the discussion of it, including of the mechanics necessary for its achievement, begin.

Stephen Walker

President, Dying with Dignity Western Australia

7 April 2026

 

[1] The Explanatory Memorandum to the ACT Bill powerfully argues the case against a time to death criterion.

[2] In s 11.

[3] That being the relevant time period on the basis that dementia is a neurological condition.

[4] Whether or not the word ‘enduring’ is used in any particular Australian Act, capacity must exist throughout the VAD process for eligibility to continue and in effect it must be enduring.

[5] White at al, ‘Who is Eligible for Voluntary Assisted Dying? Nine Medical Conditions Assessed Against Five Legal Frameworks’ (2022) 45 UNSW Law Journal, 1.

[6] Survival, effect measures, and impact numbers after dementia diagnosis: a matched cohort study, Garre-Olmo et al, Clin Epedemiol 2019 Jul 16;11:525-542 (which reported a median survival rate of 5.2 years for a particular study in Girona, Catalonia, Spain).

[7] Advanced Dementia, Mitchell, N Engl J Med 2015; 372:2533-2540.

[8] I mention this because some have incorrectly reasoned from the fact of dementia eligibility in Canada that, absent a time to death requirement, there would be dementia eligibility in Australia.

[9] A person must be diagnosed with a “grievous and irremediable medical condition,” where a person must meet all of the following criteria: serious and incurable illness, disease or disability; advanced state of irreversible decline in capability; and experiencing enduring physical or psychological suffering that is caused by their illness, disease or disability or by the advanced state of decline in capability, that is intolerable to them and that cannot be relieved under conditions that they consider acceptable (and in addition various procedural safeguards apply, which differ according to whether or not the person’s death is ’reasonably foreseeable’).

[10] As explained below, this suggestion stands a little apart conceptually from the first 2 suggestions because its impact on dementia eligibility is limited; it is nonetheless included here, in part because it is a reform which would assist all who seek VAD, including those who lose capacity.

[11] Fourth annual report on Medical Assistance in Dying in Canada 2022, Government of Canada, Section 4.5.

[12] Interpreting Canada’s Medical Assistance in Dying Legislation, Jocelyn Downie and Jennifer A Chandler, 2018.

[13] See s 11(3)(a): “the individual’s functioning and quality of life-

• have declined or are declining; and
• are not expected to improve; and ….”

[14] The Montreal Gazette.

[15] AMA Queensland submission to Queensland Law Reform Commission, 1 December 2020.

[16] https://www.marisapaterson.com.au/campaigns/community-consultation-on-vad-amendments.

[17] Submission p 21.

[18] Clearly the court was referring here to “will” as meaning personal wishes or intentions, rather than a testamentary instrument.

[19] Quoted from the website of DMD, the Fundacion Pro Derecho a Morir Dignamente.

[20] See as an example s 16 of the WA Act referred to above.

[21] But still of course to be judged subjectively by the patient, and not at all by the assessor.