Dementia and VAD – a complex issue

The subject of whether people diagnosed with dementia should be eligible for Voluntary Assisted Dying (VAD) is a question Go Gentle is asked a lot. The answer is not straightforward.

There is understandable concern about the impact of living with dementia, and what this means for end-of-life choice. Dementia (and related diseases) is the second leading cause of death for Australians, and is on track to soon become the first. 

However, dementia on its own is not an eligible condition for VAD in any Australian state or territory under current laws. To help understand why, we commissioned an issues paper to explore the complexity of the issue. 

The paper, written by experienced neuropsychologist Dr Kylie Ladd, analyses VAD laws in Australia, why people with dementia are not eligible, and the overseas experience. It explains why any changes to allow people with dementia to use VAD would present significant practical, political, medical and ethical challenges.

Even if laws were to be amended, the overseas experience suggests the uptake by people with dementia would likely be small.

Why isn’t VAD an option for Australians with dementia?

There are two main reasons why dementia is not an eligible condition for VAD in Australia.

1. Decision-making ability 

One of the main reasons is the need for decision-making capacity. For someone to be eligible for VAD in Australia, they have to be able to make informed decisions about their medical treatment and communicate those decisions throughout the process.

This isn’t just a ‘tick-a-box’ exercise – it’s a key principle of VAD under existing laws. It is to make sure that the serious decision to use VAD is truly voluntary, carefully considered, and consistent over time.

2. Approaching the end of life

Another reason is that VAD in Australia is intended only for people at the very end of life. In most states, this means two qualified medical practitioners must agree that the person has a terminal illness and has only 6 or 12 months left to live. Even in the ACT, where there’s no set time frame in the VAD law, two medical practitioners must still agree that the person is ‘approaching the end of life’. For someone newly diagnosed with dementia, death may be years – sometimes even decades – away.

An impossible situation

People with dementia who wish to access VAD, therefore, face a heartbreaking ‘Catch-22’: In the early stages of their illness, when they have decision-making ability, they are not sufficiently advanced in their illness to qualify as ‘approaching the end of life’. In the later stages, when their dementia is advanced, they are ineligible because they usually lack decision-making ability. 

Can I include VAD in my Advance Care Directive?

The short answer is ‘no’.

VAD laws say you must maintain decision-making capacity throughout the entire VAD process, from beginning to end. An ACD is essentially a set of instructions for future medical care in the event you lose decision-making ability. While you can refuse future treatments in an ACD (which doctors must obey), an ACD can’t force a doctor to administer a specific treatment, such as VAD.

On top of that, your substitute decision-maker (like an Enduring Guardian) isn’t allowed to ask for VAD on your behalf because VAD laws stipulate the decision can only be made by you and you alone.

Why does capacity matter so much in VAD?

There are many reasons why VAD laws insist on eligible people having capacity throughout the entire VAD process. 

• Changing your mind: An Advance Directive, sometimes written years beforehand, might lock someone into a decision they no longer agree with. If someone changes their mind about VAD but can’t express it, their wishes might not be recognised.
• Ethical dilemmas: If someone with advanced dementia appears happy or content, it raises tough ethical questions for relatives or doctors about whether it’s right to proceed with VAD based on an earlier directive.
• Difficult to define: Terms in an Advance Directive like “I want to have VAD when I lose my quality of life” can be subjective and open to interpretation. This can create conflict between family members and doctors.
• Risk of coercion: Vulnerability to pressure or coercion is another concern, both when the person is writing an Advance Directive and when the time comes for others to act on what it says.

What’s happening overseas?

Some countries in Europe and Canada do allow people with dementia to access VAD. In these jurisdictions the philosophical basis of VAD laws is different – they allow access based on intolerable suffering and no time frame to death. However, the number of dementia-related VAD cases in these countries is very low – between 1 and 3% of all VAD cases. 

The Netherlands’ approach

The Netherlands – and more recently the Canadian province of Quebec – are the only jurisdictions that allow the use of an Advance Directive to access VAD. There is no updated data available for Quebec as yet. However, in the Netherlands, only around 3% of VAD cases involve dementia, and most of those are people in the early stages of the disease.

Why so few? Ethical concerns among health professions play a big role. Surveys reveal that while 60% of the public in the Netherlands say they support people being able to request VAD in an advance directive, only 24% of GPs and 8% of nursing home doctors feel comfortable with performing VAD on someone who doesn’t fully understand what’s happening. 

Plus, families often change their minds and step in – up to 75% of relatives in the Netherlands have asked doctors not to comply with an Adavanced Directive of a loved one. This suggests public support drops when the situation moves from theory to a lived reality. 

What is Go Gentle’s position on VAD and dementia?

Go Gentle remains neutral on the issue and does not advocate for any particular policy outcome. Our intention in commissioning this research was to provide background information to help answer the queries we receive from the public about dementia and VAD. 

We acknowledge that many people do not wish to live with the slow decline of dementia and accompanying loss of independence. We also acknowledge that the impact of dementia is not just experienced by the person with the diagnosis – it also impacts family members and caregivers. 

As the issues paper has shown us, the question of VAD for people with dementia is complex and multi-faceted. Any consideration of changes to our laws to allow eligibility for people with dementia would present significant practical, political, medical and ethical challenges.

Any reform would first need a strong evidence base to help build community, health profession and political support. Work in this area is still in the very early stages.

Until this work is done, Go Gentle's focus is on making sure existing VAD laws are understood, operate well and are accessible throughout Australia. There is still much more work to do in this regard. 

Next steps

Go Gentle is committed to continuing the conversation, listening to the public, and encouraging more research. Our issues paper highlights key areas where further work is needed, including surveying the public and health professionals and, perhaps most importantly, engaging meaningfully with people living with dementia. 

Some of this work is already underway. 

A Queensland University of Technology (QUT) project Voluntary Assisted Dying and Dementia in Australia: An Exploratory Study  will provide a foundation for public policy debates and any future law reform.

Charles Sturt University has surveyed people living with dementia to understand their views on VAD. We await the results of this study.

Read the full issues paper A wicked problem: The complexity of dementia and voluntary assisted dying