There is a word for the mercy we extend to suffering animals. We call it humane. That word comes from the Latin humanus, the same root as human. For the Romans, they were the same word. To be human was to be merciful. Compassion was not a virtue you might choose to add to your humanity. It was part of its definition.

Our law has severed that connection.

We give a humane death to a dog. We give it to a horse, a cat, a bird, a snake.....literally any animal in pain. We call it the right thing to do and we do not hesitate.

But when it is our own mother, our father, our grandparent, our partner, any of our loved ones, lying in a bed, unable to swallow, unable to speak, in the final days of a death they begged us to protect them from, we call that same mercy illegal.

My mother's name was Helen. She called herself Hem - a name she invented because she thought "Grandma" made her sound old, and she was far too vibrant for that. She was passionate and joyful and full of life.

And she died a slow and painful death from starvation.

Not from famine. Not from neglect. Because Australian law left her no other option.

⚠️ Content warning: This petition contains a photograph of Hem in the final stage of dying from Alzheimer's Disease. It is confronting. It is included because this death has been invisible for too long and because the people experiencing it deserve for this to no longer be hidden. Please continue only if you are comfortable doing so. If you have recently lost someone to dementia, please take care of yourself first.

What most people don't know about Alzheimer's and Dementia

When people think of Alzheimer's and Dementia, they think of memory loss. A person who forgets names, who repeats themselves, who gets confused about where they are. They do not think of starvation.

But dementia is a terminal illness. It kills slowly, progressively, and ultimately by dismantling the body's most basic functions. In the late stages, the brain forgets how to swallow. This is not a metaphor. It is a neurological reality - the cortical regions that coordinate swallowing are systematically destroyed by the disease. When they are gone, they do not come back.

When a person with dementia loses the ability to swallow, they can no longer eat or drink. They cannot be fed by tube, research confirms it brings no benefit and no comfort. They simply stop being able to consume anything. And then they starve - their body literally shuts down because it is not getting the nutrients and water it needs to survive. This can take over 2 weeks, while their family watches helplessly.

Swallowing difficulties affect the overwhelming majority of people with advanced Alzheimer's (which accounts for 60–80% of all dementia diagnoses). Swallowing dysfunction is also well-documented in Lewy body, vascular, and frontotemporal dementia. Across all dementia types, a 2024 systematic review found prevalence of up to 93% upon clinical assessment.

In the final stage of Alzheimer's or other dementia, the progressive destruction of the brain's swallowing centres means complete loss of swallowing is not a risk - it is the destination. An estimated 15,000 Australians reached that destination in 2024.

Dying from Alzheimer's or Dementia

This is what Hem's final days looked like. She weighed around 24 kilograms by the end of it. Her mouth was open continuously for ten days - her mouth and tongue cracked and dry despite our hourly attempts to moisten it with swabs and sprays. Pressure sores were forming on her arms where they rested on her own body because there was no longer enough flesh between her skin and her bones to protect her. She lay in the same position for days, as repositioning caused her to grimace in pain despite the pain relief being administered. 

 

 

If that photograph were of an animal in my care, I would be charged with abuse, cruelty and neglect.... 

The cruel catch-22

Hem could not access a peaceful death that many are now able to in Australia - not because she wasn't dying, but because by the time dementia had brought her to the active dying phase, it had also taken the one thing the law requires to access it: her capacity to ask.

The law offers two options: a peaceful death, or suffering. Then it removes the first option from every single person with dementia, at precisely the moment they need it most.

What Hem's Law asks for

A standalone legal provision - separate from existing assisted dying legislation - that permits a family member or legal representative to choose a peaceful and humane death on behalf of a person with dementia, but ONLY when all of the following are independently confirmed:

• Loss of swallowing, confirmed by a doctor or speech pathologist
• Active dying phase certified by two independent medical practitioners, confirming that comfort care is the only remaining pathway
• Written confirmation by the decision-maker, with independent legal and medical witness

This is not a quality of life judgement. It is a decision about how an already-ending life concludes - in peace, or in suffering.

To be clear, this is not considered "assisted dying" in any meaningful sense. It is closer to the withdrawal of a ventilator from a person who can no longer breathe independently - a decision we already recognise as merciful, legal, and right. We are asking for the same recognition, at the same moment of inevitable death, for people with advanced dementia. 

This works both ways - and that is non-negotiable

Hem's Law should include a clear and legally binding opt-out provision. Any person who does not want this option available to them - for any reason, whether personal, cultural, or religious - can record that instruction formally at any time and it should be a legally protected advance directive, binding on any substitute decision-maker, and on the medical practitioners involved. It must be checked before any application can proceed. No application can proceed if an opt-out is recorded.

The same logic applies to the decision to participate. A person's wish, recorded at diagnosis with full capacity, should not be erasable by someone else's grief.

Here is the part that matters just as much as the opt-out itself

Nobody can make that choice, in either direction, if they have never been told what the end of dementia looks like.

I didn't know. Most families don't know until they are at the bedside. And that silence is not accidental. It is systemic. Doctors don't tell you at diagnosis. Aged care facilities don't tell you at admission. Nobody tells you that once the brain forgets how to swallow, the body will take a week or more to waste away. Nobody describes those final days. And so nobody plans for them.

Hem's Law will require that to change. At the time of a dementia diagnosis, every patient should receive clear, honest information about the full progression of the disease, including its end stage. The opt-out, and the option to formally record a wish for a peaceful death, should be offered routinely, as a normal part of that conversation, alongside wills, powers of attorney, and advance care directives.

Not because peaceful death should become the default. But because nobody should arrive at those final days without ever having been given the chance to decide for themselves.

The numbers

15,000 Australians. Every year. Starving to death - not from famine, not from poverty, but because the law will not allow anything else.

An estimated 7 million people globally. Every single year.

This is not a hidden tragedy. It is a permitted one - unspoken, unnamed, and unfolding behind closed doors in aged care facilities, hospitals and homes across this country, one family at a time, with the full knowledge of the law.

We can do better, we should do better. No one deserves to suffer like this. We have the power to prevent this, but the law needs to change.

Sign for Hem.

Sign for your mother, your father, your grandparent, your aunt or uncle, brother or sister or other loved one that has experienced this death. 

Sign for the estimated 15,000 Australian families that this is likely to happen to this year alone. 

Sign so that our children do not have to experience this trauma should we also suffer the cruel fate of a dementia diagnosis.

I promised Hem her suffering would not be for nothing. Help us put "human" back in "humane" and grant Hem's Law.

Petitioned to: The Australian Parliament and each state and territory government

The photograph of Helen ("Hem") is shared here with the permission of her family as part of the Hem's Law campaign. This image may not be downloaded, reproduced, or shared outside the context of this petition without the express consent of her family.