Dementia

Introduction

Many jurisdictions around the world that have voluntary assisted dying as a lawful end of life choice are currently grappling with how to make VAD accessible to those with dementia.

Western Australia is no exception. More than six years ago, on 23^rd August 2018, My Life, My Choice - the Report of the Joint Select Committee on End of Life Choices (the Report) - was tabled in Parliament. Supported by seven of the eight members of the committee, the Report was intended to inform the drafting of the Bill that would ultimately be tabled for debate.

Sadly, the government lost courage when it came time to draft the Bill (a process done in complete secrecy), and in many respects the Bill was a poor cousin to the robust recommendations in the report. Nowhere was this more evident than in relation to dementia.

There are 113 mentions of dementia in the Report, including that:

dementia is now one the most common terminal illnesses in Australia and the number of people affected is rapidly increasing;
this is a challenge of monumental proportions for policy makers and governments and is reflected by demands from individuals that their health care wishes be honoured once they have lost capacity;
dementia is the second leading cause of death in Australia;
Alzheimer’s WA stated that it was important that ‘people with dementia have access to end of life planning and advanced care directives as part of their future planning options’; and
equal access to lawful options should occur for all people in all aspects of society.

The very first recommendation in the Report was that an expert panel be appointed to review the relevant law and health policy and practice – and provide recommendations … [to] consider how the increasing numbers of people diagnosed with dementia can have their health care wishes, end of life planning decisions and advance health directives acknowledged and implemented once they have lost capacity.

That panel was duly appointed and made 23 recommendations about advance health directives. The only two that were not implemented were Recommendations 22.1 - that … advance health directives, should be promoted, funded and supported as part of an early intervention and education strategy for people diagnosed with dementia and other neurodegenerative diseases; and 23.1, that the State Government could consider establishing an Expert Panel to provide advice and recommendations on how to provide people with a neurodegenerative condition access to choice regarding voluntary assisted dying, in particular through the potential application of advance directives.

The plight of those with dementia across Australia has deteriorated even more in the years since the Report was published.

In that intervening period both the former Premier, Mark McGowan, and the current Premier, Roger Cook, have said publicly that it was time to have a national conversation about dementia. However, contrary to those statements, the government has abjectly failed – and, in fact, has refused – to even permit the 2024 Review to debate and consider the matter.

These time-honoured and oft borrowed questions come to mind:

If not us, who? If not now, when?

DWDWA’s position on giving access to VAD to those with dementia and other neurodegenerative conditions that lead to a loss of capacity (referred to generically as “people with dementia”)

DWDWA acknowledges the importance of this issue and its complexity.

Although the organisation has not finalised its policy on the issue, this is its analysis to date.

Impediments under the eligibility criteria in the current VAD Act in Western Australia

All of the eligibility criteria in section 16 (c)(i), (ii) and (iii), (d) and (f) as set out below are problematic for people with dementia wishing to access VAD.

“(i) is advanced, progressive and will cause death” is problematic because the cause of death may be co-morbidities and not solely the dementia; and if the dementia is ‘advanced’, capacity will almost certainly have been lost.

“(ii) 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” is problematic because this arbitrary and uncertain time to death prognosis will certainly disqualify anyone in the middle to late stages of a neurodegenerative condition.

“(iii) is causing suffering to the person that cannot be relieved in a manner that the person considers tolerable; is problematic because to include people with dementia, the definition of ‘suffering’ should include ‘the anticipation of suffering’. Note that we also recommend in 3 under the next heading below that the criterion regarding suffering itself be elevated to ‘unbearable suffering’.

(d) that “the person has decision-making capacity in relation to voluntary assisted dying” is problematic because by the time the prognosis criterion is satisfied, capacity is very likely to have been lost.

(f) that “the person’s request for access to voluntary assisted dying is enduring” is problematic because, as for (d) above – by the time the person comes to the second or third request for VAD, capacity will almost certainly have been lost.

Because of these constraints, those with dementia have no way of having their end of life wishes respected. This is wrong.

Possible ways of addressing the problems outlined above

Amending “at least one disease, illness or medical condition” by the addition of the words “or more” after “at least one”.
Delete “advanced” in (c)(i) or define it to mean that “the person’s functioning and quality of life have declined to the point that they no longer consider life to be worth living”.
Replace the time to death criterion in c(ii) with the “death being reasonably foreseeable” as recommended in My Life, My Choice, and amend c(iii) to provide that the person must be experiencing unbearable suffering.

In European jurisdictions such as The Netherlands and Belgium, (subjectively) unbearable suffering (or its equivalent) is at the heart of eligibility, as it should be. It makes far more sense than the inherently vague time to death criterion that is determined subjectively by the assessing doctor (which is contrary to the principles underpinning the Act that it should be centred on the person.

Moreover, in DWDWA’s view, these additions will strengthen the safeguards in the existing eligibility criteria in the Act.

Suggested wording for the relevant provisions is:

‘That the person’s death is reasonably foreseeable as the result of one or more disease, medical condition and/or injury (alone or in combination) with that requirement being satisfied if on the balance of probabilities that disease, medical condition or injury (alone or in combination) will cause the natural death of that person; and

That the person is in a state of unbearable suffering - or the anticipation of such 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”.

4. Amend the Act to provide that the criteria about capacity and the request for VAD being enduring may be satisfied by virtue of an appropriate form of advance health directive (AHD).

Under the Guardianship and Administration Act 1990 it is not only possible but mandatory to respect the wishes of a person as set out in an AHD. The AHD must be executed while the person has capacity and can only be acted upon when capacity is lost. The person’s autonomy must be respected, even if their wishes bring about a slow death, for example by refusing food or liquid, or a certain death by refusing readily available life-saving treatment.

A doctor’s reluctance to administer a lethal substance without the person’s present consent is understandable, even if not entirely rational. Since this is a reality to be overcome, DWDWA recommends the use of a ‘dementia-specific’ AHD to ameliorate the concerns of VAD practitioners. The new laws in Quebec allow for this alternative; and in Australia Doctors for Assisted Dying Choice and DWDWA have collaborated to produce an Advance Assisted Dying Request for Dementia (AADR) and other conditions leading to loss of capacity in relation to voluntary assisted dying (inclusively referred to as ‘dementia’). This AADR can be found as a separate document on the DWDWA website here.

DWDWA would welcome any feedback on the above proposals.

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