A question I'm asked regularly - in interviews or in comments, sometimes from people who mean it kindly - is this: "Can't we just improve palliative care? Isn't pain relief enough?"
It's an understandable question. It deserves a real answer.
I know from personal experience that it isn't enough. I sat at Hem's bedside for ten days. When we gently repositioned her, her eyes shot open and she grimaced. I could tell by the pace of her breathing that the medication was wearing off before her next dose was due. The palliative care staff were wonderful. They were doing everything the law allowed. And it wasn't enough.
But I'm not asking you to take my word for it. I'm asking you to look at the evidence.
The genetics problem
There are several well researched genetic variants that impact how people metabolise opioids and therefore how effective they are. One such variant - a polymorphism of the OPRM1 gene - dramatically reduces how effective opioids are in some patients. Morphine has been shown to be approximately five times less potent in people who carry it.
Both Hem and I carried another polymorphism that has been shown to impact opioid metabolism - MTHFR C677T. There are probably many more variants we don't yet know about. There is no routine genetic screening in Australian palliative settings. We administer opioids to dying people and assume they are working, without any genetic basis for that assumption.
The efficacy problem for everyone
Even setting genetics aside, the evidence on opioid efficacy is sobering. A meta-analysis of 96 randomised controlled trials involving over 26,000 patients found the average pain reduction from strong opioids was less than 1 out of 10 on a pain scale. Not elimination. Reduction. At best. Separately, around 40% of cancer patients in palliative care have inadequately controlled pain despite specialist opioid management.
Opioids may reduce the sensation of pain. They cannot stop the body from starving and dehydrating.
The Pasman study - the one that cuts deepest
Researchers measured discomfort in 178 dying dementia patients from the withdrawal of food and water through to death, using a validated observational scale - watching for grimacing, frightened facial expressions, tense body language, restlessness.
Discomfort scores were not low. They persisted throughout the dying process, which took days to several weeks. Observed dehydration was independently associated with higher discomfort, meaning the dying process itself was measurably worsening the experience as the body became drier.
And the analgesic medication, including opioids, which a third of patients were already receiving? They had no statistically significant effect on the discomfort the scale detected. A third of patients were on pain medication throughout and it made no measurable difference.
The thing no evidence can ever answer
Underneath all of this sits an argument that no evidence can ever resolve: we simply cannot know whether pain relief is adequate for a person in the final stage of dying. No one has ever come back from that experience to tell us.
Every confidence we express about what a dying person feels, or doesn't feel, is an assumption made by the living about an experience they have not had.
We are guessing. And we are calling that compassion.
Even if pain relief were perfectly effective, the argument still asks us to accept that the right response to an already-ending life is to manage its prolonged suffering rather than mercifully end it.
That is why Hem's Law matters. Not instead of good palliative care. Alongside it, at the moment when palliative care alone is no longer enough.
If you agree, please share this petition today. Every share, every signature, every person who hears Hem's story and thinks 'this is not right' - is how this changes.
With much gratitude,
Angie
(Founder, Hem's Law)