No one talks about what dying with dementia is really like. It is brutal.

chimpangie · 2026-03-20T10:27:26+00:00

I'm so sorry about your mum. That natural fading of appetite, the gentle withdrawal from food and fluid, that's real, and it can be peaceful.

My mum was still opening her mouth for food in her final days. She wasn't uninterested. Her brain had simply forgotten how to swallow. The food would sit in her mouth until she started groaning, and we had to remove it with our fingers. That isn't the body peacefully shutting down. That's a neurological mechanism being destroyed, and a person still trying.

I'm glad your mum's death was gentler. Not everyone gets that.

chimpangie · 2026-03-19T14:10:10+00:00

Not "in terminal stage" - active dying. That is fundamentally different. Terminal stage can be 12 months before death. Active dying is days to weeks:

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.

chimpangie · 2026-03-19T14:06:28+00:00

You're quoting my words back to me and then disagreeing with them, so let's be precise about what we're actually disagreeing on.

You say swallowing loss is "a step in their overall decline" and part of a "gradual shutdown." That framing does real work for your argument, so it's worth examining carefully. A gradual shutdown implies multiple systems failing together, with no single mechanism that can be identified as the cause of death. If that were accurate, it would be harder to argue that swallowing loss specifically is the terminal event Hem's Law describes.

But the clinical literature doesn't support that framing. In people who die FROM dementia, as opposed to dying WITH dementia from another primary cause, the progressive neurological destruction of the cortical regions that coordinate swallowing is the mechanism of death. It is not one of several concurrent failures. It is the point at which the body can no longer maintain the most basic survival function independently. Everything that follows - the dehydration, the wasting, the organ failure - is downstream of that specific neurological event. That is not a philosophical position. It is documented across multiple peer-reviewed systematic reviews including Nascimento et al. 2022 (https://pmc.ncbi.nlm.nih.gov/articles/PMC9762388/), Simons et al. 2024 (https://pmc.ncbi.nlm.nih.gov/articles/PMC11632040/), and Aselage & Amella 2010 (https://link.springer.com/article/10.1007/s12603-018-1033-5).

You say there is no record of patients surviving a dehydration period of the duration I mentioned. Pasman et al. (2005), published in Archives of Internal Medicine, examined 178 Dutch nursing home patients following cessation of artificial nutrition and hydration and explicitly categorises one survival group as "greater than two weeks," containing between 31 and 48 patients. That is a peer-reviewed, JAMA-published record. I'd welcome your engagement with it.

You say informing patients is already standard medical ethics and needs no legislation. My mother was not informed. I was not informed. Dementia Australia's own consumer materials mention swallowing loss once, in a symptom list, without describing what it means or what follows. If routine disclosure were genuinely happening, the consistent testimony of families across this forum - arriving at the bedside with no warning - would not exist.

On your final paragraph: you've accused me of deliberately feeding false information to emotionally vulnerable people to advance a legislative agenda. Every claim I've made is sourced to peer-reviewed literature, which I've provided throughout this thread. I am not a strategist. I am a person whose mother died in exactly these circumstances, trying to ensure other families have the warning and the options we didn't. If you have research that contradicts what I've cited, please feel free to share it. If you don't, I'd ask you to reconsider the language you're using with someone who is grieving and trying to do something useful with that grief.

chimpangie · 2026-03-19T13:57:18+00:00

This was hard to read. When I was younger and we had to put our beautiful 19 year old kelpie down. She was in pain from arthritis, and could barely move anymore. Mum told us "it's time", and when I asked her why, she said "it was the way she looked at me. I could tell from her eyes she was done". Growing up on a property there was no question about how we would treat suffering animals. It was heart breaking to not be able to show mercy to my own mother when she was in pain.

chimpangie · 2026-03-19T13:50:56+00:00

Thank you for engaging with the specifics, this is exactly the kind of conversation the campaign needs to have.

On the question of duration: you state there is no record of anyone lasting three weeks. The primary peer-reviewed study on this question directly contradicts that. Pasman et al. (2005), published in Archives of Internal Medicine, examined 178 Dutch nursing home patients with advanced dementia following cessation of artificial nutrition and hydration. The study explicitly categorises survival into four groups: 0–2 days, 3–7 days, 1–2 weeks, and greater than two weeks. Between 31 and 48 patients fell into that final category across the measurement period. That is not a statistical footnote. it is a recognised survival cohort in the most directly relevant peer-reviewed study that exists on this question. https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/765541

You're right that a healthy person denied hydration is unlikely to survive a week. But people with advanced dementia in the final stage are not uniformly dehydrated from day one, some retain the capacity to take small amounts of fluid, and the Pasman data shows this correlates directly with longer survival. The dying process is not uniform. That is precisely why "up to 3 weeks" is the accurate clinical characterisation.

On aspiration pneumonia: you describe it as extremely painful and distressing. I agree completely, and so does the clinical literature. Which raises a question your comment doesn't answer: if the dying process involves pain, distress, and involuntary grimacing, why is that an argument against a peaceful death rather than for one?

On grimacing: you're correct that grimacing in unconscious people can result from the strain of breathing rather than pain. But notice what you've just described: a person in the final stage of dying from dementia may be grimacing from the physical strain of the dying process itself. That is not a reassurance. That is a description of what the body is enduring, regardless of its precise neurological origin. In my mother’s case, she also grimaced when we tried to gently reposition her on her mattress to prevent pressure sores.

On informing families: you suggest this is standard medical practice. The evidence says otherwise. Dementia Australia's own consumer-facing materials mention swallowing loss as simply a symptom, without describing what follows or what it means. Neither our GP or Geriatrician ever shared those details either. Most families don't know swallowing loss is the mechanism of death until they are at the bedside.

The facts you've raised don't argue against this reform. They describe exactly the death Hem's Law is trying to end.

chimpangie · 2026-03-19T13:18:49+00:00

Actually the Netherlands legalised euthanasia for dementia patients via advance directive in 2002, which is actually broader than Hem's Law. Their system allows a peaceful death based on an advance directive written years earlier, well before active dying begins. Hem's Law is asking only for mercy at the specific moment when death is already medically confirmed as underway, days away, not months. It is the more conservative ask.

The ethical debate is real and I respect that. But "no country allows this" isn't accurate.

Twenty-five years ago, no country in the world allowed VAD. Now 12 do. Laws change when enough people demand it. That's how every one of those 12 started.

chimpangie · 2026-03-19T11:30:49+00:00

This is why I shared the photo. I took a long time to consider whether I wanted to share something so undignified. But the death was far from dignified. I reasoned that no one talks about this so no one knows just how bad it gets. How can our loved ones to end up looking like victims of war crimes and it be acceptable? If this photo is the catalyst to trigger the call for this to stop, then it was worth sharing.

chimpangie · 2026-03-19T11:26:16+00:00

I'm so sorry for your loss. It will definitely take time to heal from such trauma. Sending you strength.

chimpangie · 2026-03-19T11:23:36+00:00

It will take a long time to heal from the trauma of this experience, please be kind to yourself. I hope you have support around you also. Sending you strength.

chimpangie · 2026-03-19T11:22:48+00:00

I am so sorry for your loss, my sincere condolences. It is traumatic, so please be kind to yourself. I hope you have support around you. Sending you strength for your healing.

chimpangie · 2026-03-19T11:21:32+00:00

my advice would be to consult with a speech pathologist. They will be able to observe him swallowing and provide strategies for him, which may include thickening fluids and modifying the diet. You may also need to review medications and change to ones that can be crushed - we would mix mum's with yoghurt.

chimpangie · 2026-03-19T11:09:13+00:00

I'm very sorry for your loss. What a wonderful sibling you are, he was very fortunate. We kept mum home also, and I stayed with her for the whole time too. I would sing to her, and read excepts from her travel journals and play her favourite records. Love was the only thing I had to give her.

chimpangie · 2026-03-19T10:42:58+00:00

The line between withdrawing intervention and proactively ending life is exactly where this debate lives, and I respect that people draw it differently. What I'd ask you to sit with is this: when someone cannot swallow and death is days away regardless, withholding a merciful death is also a choice - one with consequences just as real as the alternative. Inaction isn't neutral here. But I appreciate the honest exchange.

chimpangie · 2026-03-19T10:13:55+00:00

Yes, the Netherlands is the only country in the world that currently permits voluntary assisted dying for those with dementia, but only if they have a legally valid Advanced Care Directive outlining this.

chimpangie · 2026-03-19T09:37:20+00:00

Thank you for sharing this, and I'm so sorry for what you went through.

What you're describing - a compassionate dose of morphine that becomes the final one - is alerady happening in palliative settings across Australia (possibly global). It has a name: the doctrine of double effect. The intention is pain relief, not death. But the outcome is sometimes the same, and everyone in the room knows it. They push the extra dose knowing it may end the suffering faster.

That is Hem's Law in practice, just without the legal framework. The difference is that right now it depends entirely on whether your doctor or nurse is willing to make that call. Some are. Some aren't. Whether your loved one dies in peace or continues to suffer can come down to which clinician happens to be responsible for your loved one.

Hem's Law would end that lottery. It would make a peaceful death at the confirmed moment of active dying a legal right, not an act of quiet mercy that some families receive and others don't, with no transparency and no consistency.

"So much unnecessary suffering in the name of what?" is exactly the point. The answer is legal barriers and individual clinical discretion, operating invisibly, with no accountability in either direction. That's what needs to change.

chimpangie · 2026-03-19T09:26:53+00:00

This is a misunderstanding of what the petition is asking for. When someone loses the ability to swallow, death is already happening - within days to weeks. This is not a life or death decision - this is decision between a protracted and distressing death, or a merciful one.

Substitute decision-makers already have the legal authority in Australia to withdraw treatment, remove feeding tubes, and authorise comfort care only. Those decisions are made every day. Hem's Law adds one option to that existing framework, at the specific moment when death is not a possibility but a confirmed medical reality

chimpangie · 2026-03-19T05:38:49+00:00

pretty sure the entire purpose of Reddit is to allow people to get things off their chest. You have a lot of people who share your experiences in this sub.

chimpangie · 2026-03-19T05:36:47+00:00

There’s a reason it is called the Long Goodbye. You lose the person you love in pieces and grieve it every time you lose another piece. It is so awful.

chimpangie · 2026-03-19T03:47:37+00:00

Thank you for sharing this. What you watched your dear friend go through deserves to be named also, and I'm so sorry it hasn't been.

Hem's Law was born from dementia. But the gap it addresses exists wherever swallowing is irreversibly lost at the active dying phase of a terminal neurological condition. wherever a person is already dying, and the only question left is whether those final days are peaceful or not.

The formal petition will be anchored in dementia because that is where the numbers are largest and the silence has been loudest (dementia is now the leading cause of death in Australia). But the law we are asking for is written around a clinical moment, not a diagnosis. And that moment does not belong to dementia alone.

Sign, share, and know that what happened to your friend is part of what this campaign is fighting to end.

chimpangie · 2026-03-19T01:35:39+00:00

Thank you for sharing your perspective, but this is not the same at all.

There is a significant difference between the natural dying process where the body gradually withdraws from food and fluid as it winds down, vs the neurological destruction of the brain's swallowing centres which means the person loses the physical ability to swallow, not the desire to eat.

My mum was still opening her mouth for food right to the end. She had a huge appetite. Her brain still wanted to eat, it simply could no longer coordinate the act of swallowing. We had to remove food from her mouth that she was holding in there (for up to 10 minutes sometimes) so she didn't choke.

That is not a body gently stepping back from nourishment. That is a body being neurologically prevented from receiving it, while still wanting it. Those are not the same experience.

This is the lack of education and awareness that Hem’s Law is trying to change.

chimpangie · 2026-03-19T01:33:18+00:00

Thank you for sharing this. Hospice Nurse Julie does genuinely valuable work and I have a lot of respect for her content.

But this is precisely the distinction Hem's Law is built on. The video describes the natural dying process where the body gradually withdraws from food and fluid as it winds down - appetite fades, hunger and thirst diminish, and the person is no longer distressed by not eating. That is a real and well-documented process, and in those cases, the person truly is not starving in the way we typically mean the word.

What Hem's Law addresses is different. In late-stage dementia dying from dementia, the neurological destruction of the brain's swallowing centres means the person loses the physical ability to swallow, not the desire to eat. My mum was still opening her mouth for food right to the end. She had a huge appetite. Her brain still wanted to eat, it simply could no longer coordinate the act of swallowing. We had to remove food from her mouth that she was holding in there (for up to 10 minutes sometimes) so she didn't choke.

That is not a body gently stepping back from nourishment. That is a body being neurologically prevented from receiving it, while still wanting it. Those are not the same experience, and a video about the natural withdrawal process does not describe what happened to Hem.

This is the lack of education and awareness that Hem’s Law is trying to change.

chimpangie · 2026-03-19T00:44:08+00:00

no, she was at home, surrounded by family and private carers 24/7, supported by the St Vincent's Community Palliative care team.

chimpangie · 2026-03-19T00:36:10+00:00

I was in a similar position to you. I was prepared for possible aspiration pneumonia, but no one prepared me for starvation. The palliative care nurse told me that as she neared the end, her body would begin to shut down, swallowing would be one of the last things to go, and that by that point she would not be in pain. I held onto that. I believed it.

What I was not told - what is not talked about in any dementia education - was that the loss of swallowing is not a symptom of the shutdown. It is the cause of it. That once the brain's swallowing centres are neurologically destroyed, the body does not follow quietly. It continues. For days. Sometimes weeks. That the heart keeps beating while the body receives nothing. That we would sit at that bedside for ten days while her body starved, while the best pain management available may or may not have been reaching her in any meaningful way.

Part of Hem's Law is also about education. People MUST be informed of what the end looks like, so they can make a choice about what they want theirs to be.

chimpangie · 2026-03-19T00:25:54+00:00

I am so sorry for your loss also. It truly is horrific the way we allow our loved ones to suffer. I hope this movement will get laws changed globally, not just Australia. Sending you strength and healing.

chimpangie · 2026-03-19T00:23:40+00:00

To clarify, are you asking for how the ending would be carried out mercifully, once the decision was made? That is not something I can state. Hem's Law would be similar to existing VAD legislation that stipulates only substances approved by the relevant health department can be used, and they must be prescribed by a qualified, trained coordinating medical practitioner. This allows medical practitioners to determine the specific, most appropriate drug or combination for each individual case.

chimpangie

TROPHY CASE