Four medicines, one list - Professor Liz Reymond

How Australia’s first National Core Community Palliative Care Medicines List is helping more people die at home.

Most Australians say they want to die at home. But when symptoms escalate in those final days, families often find themselves at the pharmacy with a script that can’t be filled. At least not straight away. The medicines most often needed for end-of-life care have to be ordered in, with a two-day wait the norm.

Two days might not seem long. But the final days of life are measured differently. And those two days can change everything.

It’s a gap that’s played out across the country for years, with each state and territory following a different approach. There was no national agreement on which medicines should be readily available when someone is dying at home, leaving families and clinicians navigating uncertainty at the worst possible time.

What was needed was a unified approach. A single list that would work across all jurisdictions.

Now, after consultation with experts from every state and territory, there is one.

Professor Liz Reymond was part of the expert group that recently developed Australia’s first National Core Community Palliative Care Medicines List. After more than 20 years working in palliative care, she’d seen the same pattern repeat.

“Palliative care patients can fall through the healthcare gap for a number of different reasons,” she says. “Sometimes clinicians miss the signs of dying, so they don’t proactively prescribe anticipatory medicines in time.”

Even when they are prescribed, availability remains an issue. “Carers tell us how distressed they feel when they take a script to their pharmacy and are told they’ll have to wait for two days for delivery.” When you’re caring for someone who is dying at home, two days can feel like a lifetime.

In those 48 hours, symptoms escalate. Families become distressed. Calm gives way to crisis. And the home death everyone hoped for ends in a hospital emergency department.

“The two major causes of people having to be admitted to hospital when they want to die at home is the person’s symptoms can’t be controlled, and then, the carer gets so distressed they can no longer cope.”

Finding a solution

The solution, a national list of essential medicines that pharmacies stock routinely, sounds straightforward. Getting all Australian states and territories to agree on which medicines should be on that list was anything but.

“It was a bit like herding cats,” Prof Reymond says, laughing.

The expert group, convened through the caring@home project, brought together palliative medicine specialists, rural generalists, GPs, pharmacists, and nurses from across the country. Many arrived with their own preferred medicines and established lists.

“These were key stakeholders from all the peak bodies, all very busy people. Getting everyone in the same room was logistically challenging, but we got there.”

The next step was a bit of a balancing act. Weighing evidence against cost, clinical preference against practical reality, and availability against ease of use.

The midazolam debate

The most difficult decision came down to choosing between two sedatives: midazolam and clonazepam.

Midazolam is familiar to many clinicians. It’s fast-acting and often available in doctors’ bags. The challenge is that it isn’t listed on the Pharmaceutical Benefits Scheme for palliative care, making it costly for families and for pharmacists expected to keep it in stock.

Clonazepam, by contrast, is PBS-listed and widely available.

“In the end, we decided to go with Clonazepam,” Prof Reymond says.

That decision set the tone for the entire list. Cost and accessibility mattered as much as clinical effectiveness. The final four medicines reflect that pragmatism: clonazepam for anxiety and restlessness, haloperidol for nausea and restlessness, hyoscine butylbromide for noisy breathing, and morphine for pain and breathlessness.

Each chosen not just for effectiveness, but affordability and accessibility across Australia.

“We needed four medicines that were affordable for families and carers, but also realistic for pharmacists to stock,” Prof Reymond explains. “That was a crucial consideration.”

Designed for the final days

The list is intended for people in their final week of life, when symptoms can escalate unpredictably and swallowing often becomes difficult or impossible. It’s designed for situations where deterioration happens quickly, or where families have fallen through the cracks of anticipatory prescribing.

Having these medicines available can mean the difference between a peaceful death at home and an emergency hospital transfer. When families know medicines are there, and that palliative care support is just a phone call away, panic eases.

“People are sometimes afraid they might harm the person they love. That’s a common fear. But it’s easy to overcome with communication, assuring them these medicines are about comfort and nothing else.”

Feedback from carers reinforces this. Those interviewed after a loved one’s death at home consistently describe how having the medicines available allowed them to keep their person comfortable, advocate with confidence, and honour their wish to die at home.

“Those memories stay with that grieving family for their lifetime, Prof Reymond says. “People never forget a death they’re at.”

The role of pharmacies

The list also acknowledges the critical role community pharmacists play in enabling end-of-life care at home.

Knowing these medicines are routinely stocked allows GPs to prescribe with confidence and removes one of the biggest barriers families face during a crisis. Tools such as the PalliMEDS app, developed through the caring@home program, support prescribers with clear, accessible dosing guidance. Which is particularly helpful for clinicians who may only care for a small number of dying patients each year.

Making headway

The list is now published and available. But having it documented and having it consistently stocked across Australia are two different things.

“There’s still a lot of education needed,” Prof Reymond says. “We need more pharmacists to come on board and routinely stock these medicines.”

Healthdirect is helping by including palliative care services in its pharmacy directory, making it easier for families to quickly locate pharmacies that carry the medicines on the list. Ongoing education for GPs focuses on prescribing earlier, before crisis hits.

Moving matters forward

After decades in palliative care, Prof Reymond has seen gradual improvements in support for people dying at home. Caring for people where they live, she says, is a fundamental part of dignity and humanity.

“We talk a lot about patient-centred care,” she says. “But we can’t provide that unless we know what a person wants, how to deliver it. If someone says they want to die at home, we need to know how to make that possible.”

The National Core Community Palliative Care Medicines List provides part of that answer. Four medicines, readily available, allowing people to die where they choose, comfortable and cared for until the end.

“When you follow up with carers, they tell you straight away,” Prof Reymond says. “Having these medicines available made all the difference.”