VAD and Advanced Care Directives: Fix the Care Gap, Don’t Widen the Legal One

Every few months we read a story about a family who has walked alongside someone they love through advanced dementia, asking why the law won’t let people arrange, in advance, to end their life once they reach a certain point in that journey. The stories are heartbreaking, and the exhaustion is real. But extending Voluntary Assisted Dying to people who can no longer consent to it is not compassion. It is a graver step than the one Australia has already taken, and the evidence shows why.

Every Australian VAD law requires decision-making capacity when a person requests to undergo VAD, and capacity throughout their lifetime. This isn’t to say VAD is a genuinely free choice even now — patchy access to high-quality palliative care puts its own pressure on people’s decisions. But contemporaneous, ongoing capacity is at least the minimum that proponents say distinguishes VAD from something done to a person rather than requested by them. . Advanced dementia removes capacity before a person is finally assessed, which is why people with dementia are generally excluded from VAD as it stands.

Some argue we should allow people to lodge an advance directive while they still have capacity, to be acted on later by someone else after that capacity is lost. This asks a person to make an irreversible decision on behalf of the person they may become: someone shaped by an illness that unfolds differently for everyone and cannot be predicted. It then asks a loved one or clinician to act on that past instruction, without any confirmation that the person still wants it.

We already have reason to doubt such decisions hold reliably over time. Victoria’s own VAD data shows around a third of people issued a permit never go on to die by it; many die naturally first. An advance directive treats a decision made years before diagnosis as more fixed than these decisions usually are.

It also opens a door that our elder abuse protections cannot guard. Substitute decision-making already sits at the centre of most elder abuse in Australia, mostly financial, mostly carried out by family members and carers a person has had to rely on. Giving a substitute power to end a life on a past instruction cuts against our safeguards against coercion of older people.

We do not have to guess how this plays out. The Netherlands and Belgium have permitted VAD since 2001 and 2002. Only the Netherlands has extended this to include advance care directives for people who have since lost capacity. Belgium’s law requires the person to reconfirm their request immediately before VAD, which excludes anyone who has already lost capacity except in cases of irreversible coma. Proposals to extend the Belgian law to advanced dementia have failed there.

Only the Netherlands allows a written directive to stand in for someone who can no longer speak, and even there it happens rarely, regarded as some of the most sensitive territory in medical ethics. One widely reported case saw a woman with advanced dementia given a sedative in her coffee, without being told, based on a directive whose wording was later disputed. A review of published cases found some did not clearly meet the legal test of unbearable suffering, which many clinicians will attest is hard to assess in someone who can no longer describe it.

Ending a life on the strength of an old instruction, with no way to confirm in the moment whether the person still wants it or even understands what is happening, places a heavy burden on clinicians, as well as loved ones. Studies show that only 8 per cent of nursing home doctors consider actions like VAD acceptable for advanced dementia, against roughly 60 per cent of the public, who are imagining this in the abstract rather than being at the bedside, asked to carry the act out.

A Belgian study of dementia specialists found a majority did not support extending VAD to advance directives for late-stage dementia. A separate survey of Flemish GPs found that those opposed to legalising euthanasia for advanced dementia cited the same underlying concern: quality of life cannot be reliably judged at that stage, and a person cannot reconfirm their will immediately beforehand. Even prominent supporters of Australian VAD law share this unease. Andrew Denton, the figure most associated with Victoria’s legislation, has called advance directives for VAD “very problematic,” and admits he has no answer for people living with dementia. When the law’s own architects find this so difficult, proponents of this extension would be wrong to assume it can simply be legislated around.

None of this dismisses the families driving this debate. Their exhaustion tells us something important: our dementia and palliative care system is fractured, under-resourced, understaffed, and too often absent when families need it most. That is the gap we can close without asking anyone to die earlier. Properly funded dementia care, trained workforces, respite for carers, and accessible palliative support are what families are desperate for.

A person living with dementia does not become less worthy of love, presence and excellent care as their memory changes. Our role as a society is to walk with them and their families through this reality, not to offer an earlier death as a substitute for the care our systems may have failed to provide.