17 May 2024

Voluntary assisted dying could be offered to people with dementia under surprise amendments

| Claire Fenwicke
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Legislative Assembly

Every MLA has now put on the record how they feel about introducing voluntary assisted dying laws in the ACT. Photo: Region.

An ACT Labor backbencher has made the surprising announcement that she’s considering introducing amendments to allow people with early stages of dementia to access voluntary assisted dying (VAD).

Human Rights Minister Tara Cheyne introduced the Voluntary Assisted Dying Bill 2023 last October, 11 months after the Territory’s right to debate VAD was restored.

The Legislative Assembly in-principle debate on Thursday (16 May) evening was the first time all MLAs could put their views on the record.

Ms Cheyne circulated the amendments the ACT Government planned to bring during the June sitting period, while Shadow Health Minister Leanne Castley said she intended to bring amendments as well (but didn’t go into detail).

Dr Marisa Paterson said she wanted the Territory to take the scheme further.

“[I want us to address] the issue around when people lose capacity … for people with dementia and other conditions,” she said.

“While the amendments that I will be proposing will not address early loss of capacity, I believe they will go some way to progress this public debate and help address very real issues.”

While Dr Paterson can reserve the right not to move the amendments next month, she wanted to open up community consultation on including people in the scheme in the early stages of diseases or conditions such as dementia.

Her proposed model is predicated on an individual meeting all VAD eligibility criteria and going through all approval stages while they have full mental capacity.

However, it allows a person to stay engaged in the process if they end up losing capacity by having an appointed ‘VAD attorney’ authorise the person’s access.

Dr Paterson likened it to a situation in which an enduring power of attorney can decide to turn off a person’s life support.

“This is a call to the ACT community to join me to be brave in having the discussion about taking the next steps to supporting people suffering at the end of their life, to be able to make the choice to die with dignity and compassion,” she said.

Ms Cheyne expressed her concerns that amendments could hold up VAD’s implementation process, but also said allowing access for people with dementia had “vexed” her.

“Dr Paterson has proposed an option which is considered and thoughtful and one which, on the face of it, does not seem like it would dilute or render a key element of the bill incoherent,” she said.

“However, while the principle is sound, I will closely be following the community conversation and advice over the coming weeks about its drafting, the effect on implementation, and what safeguards may be required.”

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There were controlled emotions and submissions as each MLA outlined how they would vote at this debate stage.

The Assembly heard stories of MLAs watching their loved ones suffer as they died, and others who’d heard wishes for just “one more day”.

Many explained they supported giving people the choice to choose how they would like to die, while others grappled with moral and religious issues.

Every member was able to give a vote of conscience rather than vote on party lines.

Some supporters of the in-principle stage reserved their right to vote the law down during the next debate if they felt the amendments didn’t address their concerns.

The bill passed the in-principle stage 20 votes to 5. Ed Cocks, Peter Cain, James Milligan, Jeremy Hanson and Elizabeth Kikkert voted no.

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The bill hasn’t passed into law yet as this was the in-principle debate stage.

The government appears confident it will become law, announcing $2.4 million over two years to establish the Voluntary Assisted Dying Implementation Taskforce.

What exactly the law will look like is still unknown as the aforementioned amendments will be debated during the detail stage next month.

As the bill currently stands, VAD will only be available to people under a strict set of circumstances, including that they must be acting voluntarily and have decision-making capacity throughout the entire process.

The government had originally considered allowing VAD to be accessible to children under the age of 18 but later backed away from this proposal.

This could be reconsidered at the first statutory review in three years.

If passed, it’s expected that VAD will be implemented on 3 November 2025.

Ms Cheyne noted this was a momentous day.

“We spent 25 years fighting for the opportunity to introduce this bill,” she said.

“It is somewhat surreal that this debate has begun today; another milestone met.

“We spent 25 years fighting for this opportunity, and this is a bill worth fighting for.”

If voluntary assisted dying raises issues for you or your family, you can contact Lifeline on 13 11 14 or Griefline on 1300 845 745.

Consultation on Dr Paterson’s amendments is open until 29 May. You can submit feedback online or email paterson@act.gov.au. The proposed amendments will also go to the ACT Legislative Assembly Scrutiny Committee.

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MATTY SILVER12:28 pm 27 May 24

My name is Matty Silver
I’m originally from the Netherlands where the “end-of-life-law” allows for euthanasia, based on “intolerable suffering” rather than “terminal illness”. This means that it has been accepted that people diagnosed with dementia can be given assistance in dying while they remain competent.
For some people, the prospect of ever suffering from dementia may be a sufficient reason to make an advance directive (living will). This can either be drawn up independently or discussed first with a GP. A physician can perform euthanasia on a patient with dementia only if such a directive exists, if statutory care is taken and if, in his or her opinion, the patient is experiencing unbearable suffering with no prospect of improvement.
I believe it’s time for Australians to demand a law like this because no-one should be forced to suffer when their lives have lost meaning, and no family should have to witness their loved ones not recognising them anymore or feel like ‘prisoners in an aged care facility’ against their will, often without compassion, that is not caring!
We must recognise that we need a law for all competent consenting adults, including the frail aged, who are not necessary terminally ill. They should be allowed to request assisted dying, and be able to die peacefully and with dignity, at a time and place of their choosing, surrounded by their loved ones.

I can’t wait till we have a Canada style system!

“Hip replacements are pretty expensive, old timer. Have you considered the cheaper option of suicide?”

“That’s a pretty bad cough you have there. Suicide would get rid of it”.


It would pay the ACT MLAs to read about overseas experiences of VAD being offered to people with dementia. A signed early consent form creates a harrowing situation where granma or grandad are sitting happily in their nursing home … yes, with dementia … and suddenly the family decides today’s the day for VAD. One well known case in the Netherlands which led to an court case was when the VAD-ee, resisted being killed and the Dr and family held her down. It’s an interesting case and one every MLA should be conversant on.

Sadly I have no faith in the ACT government exploring any of the nuances of this issue. They seem to be riding a wave of narcissistic euphoria : bragging of the possibility of bringing to Australia the most extreme version of euthanasia in the country. No doubt they will and no doubt we will have our own version of the story above in the years to come.

My family, parents, siblings and our children have discussed amongst ourselves how we want to exit this world. We do not need others including the moralising Micah Smith imposing themselves and their outdated beliefs on us! Ms Smith’s lack of faith in the government and her failure to understand or delve into the nuances of the bill is her own problem!

ACT residents have been waiting nearly 30 years to debate Voluntary Assisted Dying laws. Watering down and removing laws allowing democratically elected Territory governments to make their own decisions was a preoccupation with the Howard government and has been ongoing with federal conservative parliaments ever since. Various attempts to restore ACT rights have failed thanks to the Canberra Liberals and the party’s deposed Senator Zed Seselja who went out of their ways to obstruct all attempts. All other states have pressed ahead and introduced their own VAD laws during this time.

The ACT government’s Voluntary Assisted Dying inquiry released its report in February. The government responded to the inquiry and the debate is currently underway in the assembly. The inquiry was comprehensive with all political parties participating. This included two of the most conservative members of the Canberra Liberals with one holding the role of deputy chair. 83 contributors made submissions or participated in the hearings. There have been widespread criticisms that the inquiry did not go far enough. Both Liberal MLA’s dissented based on ethical and moral issues. That is how our parliament works!

All sides will be heard as with any debate in the assembly. That is democracy and the way it should be!

My body, my choice. Read it again. It is my body. It is my choice. Not yours.
Politicians know what we want so should either stop procrastinating and get on with the job, or stop obstructing.
The mere availability of VAD, knowing we can access it at a time of our own choosing, to relieve our own suffering will bring huge comfort to those approaching the end of their lives. The individual knows that time. Not me. Not you.
Those who seek to impose their own selfish views, politics, religious morals or ideology to deliberately prevent, delay, obstruct or water down VAD and prolong suffering should stand aside and butt out. Bring it on.

“Politicians know what we want so should either stop procrastinating and get on with the job, or stop obstructing.”
Don’t forget, Acton, the federal parliament only gave the ACT LA the power to enact VAD legislation, it did not actually direct the LA to enact such legislation. Unfortunately, while I too support VAD, it is necessary for the ACT LA to follow its legislative process – which is to debate proposed legislation before the vote is held.

Hopefully, given the majority of ACT voters are in favour of VAD, the majority of MLAs will support the legislation so it passes.

At last our government is able to have this debate! Whoohoo! Could it go further, well of course it can!

I was one of those excited little Territorians tuned in to listen to this exciting and long-awaited debate. Jeremy Hanson who is opposed to the bill was being his usual rude and intimidating self, bellowing at Labor and the Greens from across the chamber, but that was to be expected. Stand outs were Dr Marisa Paterson (of course), Tara Cheyne and Suzanne Orr as well as the rest of the Labor team. Nicole Lawder who also supports the bill was also a standout, compassionate and understanding as usual.

Elizabeth Kikkert who is bitterly opposed referred to it as the “Voluntary Assistant Dying Bill”. Always aggressive in her delivery, she constantly refers to “women” as “woman”. Is she trying to be cute or does it just highlight her ignorance?
Canberrans have been waiting to debate this issue for over 25 years, I would have thought she would get it right!

I’m in! I would be most happy to sign a suitably witnessed affidavit authorising my carers to apply the VAD regime to me should I lose complete mental capacity to recognise my loved ones, to live a healthy independent life, and/or to be reliant upon machines to keep me alive, be that through severe illness (I.e. dementia) or by accident (I.e. traumatic brain injury however occurring). I’m full cognisant now, able to articulate my wishes, fully aware of the VAD process and outcome. Where do I sign?

My thoughts exactly. I completely agree. Where do I sign?

GrumpyGrandpa2:00 pm 17 May 24

I’m not entirely comfortable with.

MATTY SILVER12:33 pm 27 May 24

That’s okay Grumpy Grandpa – no one will force you to do anything uou don’t want to do!

If a person is sensible enough to admit that evil exists, then it needs to be asked of that person what it is that evil uses as its best weapon is. The answer: pretending to be good. Eg. the sleazy used car salesman pretends to be your friend. Jeffrey Dahmer didn’t initially show his true colours to his victims, etc., etc., etc.

Now, I wonder how many people who admit that evil exists, and who can now probably agree that it has gotten away with so much by presenting itself as better than it was, have asked themselves how it is that they can identify when something is evil and yet hiding it.

If people haven’t seriously asked themselves this question, and have therefore not developed the discernment necessary to spot fake goodness, especially when that fakeness reaches subtler and subtler levels, then the evil that they’re not spotting must be enormous.

I put it to anyone reading this that assisted suicide is just the kind of subtle evil (for some) I was talking about above, couched in beautiful sounding words and sentiments, but ultimately rotten to the core, regardless of how hard that may be some to believe. And if anyone disagrees and yet hasn’t asked themselves the above questions, I wonder what it is they’ve got to go by, apart from an uneducated guess.

And for anyone who says that evil doesn’t exist, we can be sure that they have even less idea about they’re saying.

I can’t remember the author, but his/her message is relevant “they shoot horses don’t they?”

@Vasily M
You are totally entitled to make your decision on access to VAD. You are not entitled to make that decision for others.

“beautiful sounding words and sentiments, but ultimately rotten to the core” sounds like you are talking about many religions.

In medicine there is a principle,
regulation and law regarding “informed consent.” It seems ACT Leftist politicians are not aware of this concept or if they are want it removed? A person suffering from dementia cannot give “informed consent.” Also how can the person with the legal Power of Attorney over that person know what the dementia sufferer really wants with regard to ending their life? The answer to that is they cannot know and making that decision for a conscious though mentally challenged individual is basically what this comes down too. Wrong morally, wrong legally and just wrong.

I don’t think you read the article ………Her proposed model is predicated on an individual meeting all VAD eligibility criteria and going through all approval stages while they have full mental capacity.

I would have thought your issues are addressed by:
“Her proposed model is predicated on an individual meeting all VAD eligibility criteria and going through all approval stages while they have full mental capacity.”

So, I maybe wrong, but as I read that sentence, the individual must have explicitly stated their desire to access VAD while they are capable of expressing such a desire. The ‘the person with the legal Power of Attorney’ is then only exercising that power to carry through on the individual’s wish.

As long as the individual’s expressed wish is the paramount consideration, I don’t see anything wrong.

“I can’t know what you want, so you should suffer as long as possible, because assuming you don’t want to live would be wrong”. I guess you’re not suitable for Power of Attorney in this scenario then.

So they can’t later withdraw consent?

And it begins….

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