People with dementia aren’t currently eligible for voluntary assisted dying. Should they be?

Dementia is the second leading explanation for death for Australians aged over 65. More than 421,000 Australians currently live with dementia and this figure is predicted to almost double in the following 30 years.

There is ongoing public discussion about whether dementia ought to be a qualifying illness under Australian voluntary assisted dying laws. Voluntary assisted dying is now lawful in all six statesbut is just not available for an individual living with dementia.

The Australian Capital Territory has begun debating its voluntary assisted dying bill in parliament but the federal government has ruled out access for dementia. Its view is that an individual should retain decision-making capability throughout the method. But the bill features a requirement to revisit the difficulty in three years.

The Northern Territory can be considering reform and has invited views on access to voluntary assisted dying for dementia.

Several public figures have also entered the controversy. Most recently, former Australian Chief Scientist, Ian Chubb, called for the law to be widened to permit access.

Others argue permitting voluntary assisted dying for dementia would present unacceptable risks to this vulnerable group.

Australian laws exclude access for dementia

Current Australian voluntary assisted dying laws exclude access for individuals who seek to qualify because they’ve dementia.

In New South Wales, the law specifically states this.

In the opposite states, this happens through a combination of the eligibility criteria: an individual whose dementia is so advanced that they’re more likely to die throughout the 12 month timeframe could be highly unlikely to retain the crucial decision-making capability to request voluntary assisted dying.

This doesn’t mean individuals who have dementia cannot access voluntary assisted dying if additionally they have a terminal illness. For example, a one who retains decision-making capability within the early stages of Alzheimer’s disease with terminal cancer may access voluntary assisted dying.

What happens internationally?

Voluntary assisted dying laws in another countries allow access for people living with dementia.

One mechanism, utilized in the Netherlands, is thru advance directives or advance requests. This means an individual can specify upfront the conditions under which they might need to have voluntary assisted dying once they now not have decision-making capability. This approach relies on the person’s family identifying when those conditions have been satisfied, generally in consultation with the person’s doctor.

Another approach to accessing voluntary assisted dying is to permit an individual with dementia to decide on to access it while they still have capability. This involves recurrently assessing capability in order that just before the person is predicted to lose the power to make a choice about voluntary assisted dying, they will seek assistance to die. In Canada, this has been known as the “ten minutes to midnight” approach.

But these approaches have challenges

International experience reveals these approaches have limitations. For advance directives, it could possibly be difficult to specify the conditions for activating the advance directive accurately. It also requires a member of the family to initiate this with the doctor. Evidence also shows doctors are they hesitate to act on advance directives.

Particularly difficult are scenarios where an individual with dementia who requested voluntary assisted dying in an advance directive later appears completely satisfied and content, or now not expresses a desire to access voluntary assisted dying.

Allowing access for individuals with dementia who retain decision-making capability also has practical problems. Despite regular assessments, an individual may lose capability in between them, meaning they miss the window before midnight to decide on voluntary assisted dying. These capability assessments will also be very complex.

Also, under this approach, an individual is required to make such a choice at an early stage of their illness and should lose years of otherwise enjoyable life.

Some also argue that whatever the approach taken, allowing access to voluntary assisted dying would involve unacceptable risks to a vulnerable group.

More thought is required before changing our laws

There is public demand to permit access to voluntary assisted dying for dementia in Australia. The mandatory reviews of voluntary assisted dying laws present a chance to contemplate such reform. These reviews generally occur after three to 5 years, and in some states they are going to occur recurrently.

The scope of those reviews can vary and sometimes governments may not wish to contemplate changes to the laws. But the Queensland review “must include a review of the eligibility criteria”. And the ACT bill requires the review to consider “advanced care planning”.

Both reviews would require consideration of who’s in a position to access voluntary assisted dying, which opens the door for people living with dementia. This is especially so for the ACT review, as advance care planning means allowing people to request voluntary assisted dying in the long run once they have lost capability.

This is a fancy issue, and more considering is required about whether this public desire for voluntary assisted dying for dementia ought to be implemented. And, in that case, how the practice could occur safely, and in a way that is appropriate to the health professionals who might be asked to supply it.

This would require a careful review of existing international models and their practical implementation in addition to what could be feasible and appropriate in Australia.

Any future law reform ought to be evidence-based and draw on the views of individuals living with dementia, their family caregivers, and the health professionals who could be relied on to support these decisions.