For Australians living with a life-limiting or terminal illness, palliative care services are designed to prevent their suffering and improve their quality of life.
To do this, doctors often prescribe strong pain medications, but many have been unavailable or difficult to access in the past 18 months.
“We’ve seen people who have just not received pain relief at all,” Meera Agar, professor of palliative medicine and deputy chair of Palliative Care Australia, said.
“And [we’ve seen] those who have been well controlled with their pain relief just had that stop … because the drug [they were using] got withdrawn and no-one was able to support them to work out a replacement.”
Most of the palliative care medicines affected by recent shortages are opioid analgesics, which include morphine, oxycodone and fentanyl.
In response to shortages, doctors have had to prescribe alternative medications, which can result in less effective pain relief or risk unwanted side effects.
When alternative medications are not listed on the Pharmaceutical Benefits Scheme (PBS), patients may also be left to pay significant out-of-pocket costs.
Oral liquid morphine is an essential medicine in palliative and end-of-life care. (Pexels: Eva Bronzini / CC licence)
One of the most serious drug shortages to hit the palliative care sector occurred last year after British pharmaceutical company Mundipharma, which produced the only registered brand of liquid morphine in Australia (known as Ordine), decided to discontinue its supply.
Ordine is is widely used in children and adults undergoing cancer treatment and end-of-life care to manage severe pain and breathing difficulties.
While supply of the drug has now been mostly re-established, palliative care physician Michelle Gold said ongoing shortages of other opioid analgesics meant there was still an “unreliable supply” of palliative care medicines.
‘No-one should suffer unnecessarily’
Jodi Adams’ daughter Cosette received oral liquid morphine just before she died aged five years.
She lived with a rare, life-limiting condition and spent more than half of her life at the Royal Children’s Hospital in Melbourne, including five months in palliative care.
“Cosette’s end-of-life meeting was the day before she passed away, and her palliative doctor prescribed Ordine,” Jodi said.
Jodi Adams and her daughter, Cosette. (Supplied)
The pain relief medication was given to Cosette in the final hours of her life, which Jodi said made her more comfortable.
“It would have been extremely distressing for me if we didn’t have that option, to see my daughter suffering.
“I’m sure everyone would agree that having access to adequate pain relief is a basic human right.”
Jodi said she believed medications for people undergoing palliative care treatment or end-of-life care should be subsidised and accessible.
“No-one should suffer from pain unnecessarily, and costs shouldn’t be a barrier.
“People are already in situations that are highly stressful.“
Navigating side effects and extra costs
Among the medicine shortages currently causing concerns for palliative care patients and physicians are Sevredol (a type of morphine tablet) and midazolam (a short-acting sedative), according to Dr Gold, who is also president of the Australian and New Zealand Society of Palliative Medicine.
“Midazolam is a benzodiazepine, so it’s a drug we use for people that have become agitated or distressed and it’s helpful to provide some relaxation.”
Opioid analgesics are frequently used in palliative care to help people manage moderate to severe pain. (Supplied)
Dr Gold’s main concern, however, is the unavailability of a strong, slow-release pain medication called hydromorphone (previously sold as Jurnista), which is typically prescribed when other pain medications have not worked or cannot be tolerated.
“It remains out of supply and the substitute product is prohibitively expensive, so effectively it’s not available.“
The alternative drug, which was made available by the Therapeutic Goods Administration (TGA) but is not subsidised through the PBS, costs $4,209 for 100 tablets.
Dr Gold said alternative medications could also impact a patient’s quality of life due to side effects, which were often a key consideration when prescribing palliative care drugs in the first place.
“Some people, for example, get nausea with one opioid drug but not another.
“Some of them just say: ‘I don’t like feeling sick so I’ll have to choose between pain and nausea, and if I have a lower dose of the [alternative] opioid, I don’t get as good pain relief, but at least I’m not throwing up.’ [It’s] not ideal.”
Community shortages lead to hospital stays
Professor Agar said doctors, nurses and pharmacists were having to adjust patients’ treatment plans based on changes in medication supply, which was often more challenging in regional and rural areas where resources were more limited.
“There are carers who have had to drive from pharmacy to pharmacy to try and find the particular formulation that they’re looking for.”
With each new medication prescribed to a patient comes new appointments, a new medication regimen, and the possibility of different side effects. This requires more time and support from healthcare professionals, and can create additional stress for patients and their families.
“You can’t just give someone a script and say ‘Off you go,'” Professor Agar said.
“There’s an education process to use these medicines safely and effectively, especially given the alternatives are not always the same volume, the same concentration, and might need to be delivered differently.”
Drug shortages have also forced some palliative care patients being cared for in the community into hospital because they’re not able to access adequate pain relief through their community pharmacy, Dr Gold said.
“People have had to go into hospital or palliative care wards to be switched over to another drug … but people [being cared for in the community] don’t want to be in hospital.”
Calls to stockpile critical medicines
According to the TGA, there are currently 414 medication shortages in Australia, including 36 critical shortages.
When it comes to palliative care medicines, Professor Agar said shortages and disruptions stemmed from a combination of factors, including changes to the prescription, regulation and production of opioids globally that occurred off the back of the opioid crisis.
“The use of opioids in the international market has really shrunk and rightly so,” she said.
“But that has really led to a whole reconsideration of the business models of a large number of companies producing and providing opioid medications.”
To ensure a more stable supply of palliative care medicines, industry bodies have called on the federal government to establish a national stockpile, and to increase the time frame manufacturers have to notify the TGA of any anticipated shortages.
A spokesperson for the TGA said the regulator was still considering feedback from a recent public consultation it undertook on medicine shortages and discontinuations, including a proposal to extend reporting requirements for drug discontinuations from six months to 12.
“The TGA is also actively investigating and developing reforms to better anticipate, manage and communicate medicine shortages and discontinuations generally,” the spokesperson said.
The regulator said it was working to manage and minimise the impact of shortages, and that it had approved access to several overseas registered medicines, some of which are listed on the PBS.
According to Dr Gold, a key challenge is the TGA’s limited ability to influence pharmaceutical companies to supply certain drugs to Australia, given about 90 per cent of Australia’s medicines are imported.
“The fact that we don’t produce medications in Australia, particularly these critical medicines … I think that’s one of the reasons we’ve got ourselves into trouble,” she said.
