More than 3 million Australians are living with chronic pain, and the medical system is struggling to help them as it turns away from its reliance on opioids

“Right out of the gate,” says Prof Beth Darnall. “Number one rule: first do no harm.” It is the core commitment of the medical profession. But for many chronic pain patients swept up in a tide of opioid overprescription, the Stanford pain psychologist believes the system failed to uphold this oath.

And now, as the world grapples with weaning itself off a deadly epidemic of opioid overuse, the question is: are we letting those people down again?

Opioid prescription increased rapidly in Australia and elsewhere up until a few years ago. Opioid-related deaths increased, too, claiming three lives a day in 2018 nationally. In an effort to undo this harm, guidelines and regulations around opioids are being rewritten.

But those changes have meant that some chronic pain patients are getting caught with no relief. People who went to their doctors only to ask to have their pain alleviated, and who have come to rely on a medication that they did not realise was addictive, are now being told their medicine is not good for them and, in many cases, is no longer available.

Darnall, who spoke recently at a conference in Sydney about the challenges of de-prescribing opioids, has seen a widespread push to de-prescribe in the US, propelled by increased rates of opioid-related deaths, litigation, regulation and misinterpretation of medical guidelines. She says the greatest level of harm has come from illicit use of pharmaceutical opioids, but that legitimate pain patients simply following their doctor’s advice have been caught up in the crackdown.

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Doctors and pain organisations tell Guardian Australia that there is a growing anti-opioid climate in this country, too.

Alongside elevated concerns about harms and the science and marketing behind opioids for chronic pain, a letter from the Chief Medical Officer sent to 4,800 GPs in 2018 notifying them that they were among the highest opioid prescribers in the country has had a particularly chilling effect.

The department of health is still assessing the impact of this letter on prescribing rates. A spokeswoman told Guardian Australia that, as a result, some doctors had been considered for compliance action that could involve further scrutiny of their prescribing and possible partial disqualification from Medicare or the Pharmaceutical Benefits Scheme for a period, but that none have so far been disqualified.

In the meantime, various moves are under way to monitor and reduce opioid prescribing. Some states have introduced real-time prescription monitoring to identify patients who are misusing the drugs, “doctor shopping” or being inappropriately prescribed. The Victorian version, SafeScript, was launched with a shock public service advertisement featuring patients being consumed by their pills. The Therapeutic Goods Administration has announced more restrictions and safety measures related to opioids due to come into effect this year. And early this year a National Strategic Action Plan on Pain Management is due to go before COAG, which will involve reform of pain education and management across the country.

But while the TGA and action plan both state that opioids have a role to play in the treatment of certain patients, the mood has shifted in relation to the drugs.

We’re de-prescribing without having sufficient evidence on how to do this the right way, how to protect patients Prof Beth Darnall

Carol Bennett, CEO of Painaustralia, says: “In short, there appears to be a general reluctance across the medical community to prescribe opioids, even in instances where it may be clinically indicated.”

Dr Simon Holliday, a GP and addiction medicine specialist in Taree, which has high rates of opioid use and chronic pain, says that up until a few years ago there was a permissiveness about opioid prescribing.

However, following the CMO letter and growing concerns about harms and addiction, he says that a “lot of people said: ‘Right. No opiates at all.’”

“There is almost a crusading zeal to stop people using bad stuff,” he argues; a well-intentioned pushback against opioid prescribing by patients who have been harmed, or by police, hospitals and regulators concerned by the increasing numbers of people being hospitalised in relation to the drugs.

Holliday fears the rise of a 21st century temperance movement. In its 20th century incarnation the movement resulted in severe limitations on how physicians could use opiates, following an era where they were a commonly used, unrestricted medicine and recreational drug.

“I don’t want to see that,” he says. “But I don’t want to see my beloved profession harming patients by pumping them with addictive opiates where we haven’t got the evidence.”

‘A social and medical experiment’

The evidence, according to the Australian Commission on Safety and Quality in Health Care is that “modest clinical benefit from opioid use declines over time and can be outweighed by harms”. Opioids are effective in treating people in acute pain (such as after an accident or surgery), undergoing cancer treatment or at end of life.

“Originally opioids were touted as this human right to have pain relief, so you should be able to take opioids and people shouldn’t have to feel pain,” says Dr Claire Ashton-James, pain psychologist at the University of Sydney’s Pain Management Research Institute. “Then it was discovered that taking opioids could have more harms than benefits, and that they don’t work in the long term.

“You adapt to them, so you become more tolerant, then you need to take more and the more you take the more side effects you get. And the side effects are dysfunctional. For the most part, the side effects make you less able to function in society, as a family member, as a co-worker, as a friend, less able to take care of yourself physically. It impacts your physiology, your bone density, it impacts your gastrointestinal functioning.”

So what, then, is the problem with making people come off them?

“We are conducting a large-scale social and medical experiment,” says Darnall. “Look, we’ve already done it. We did it with opioid prescribing in the first place. Practice patterns got way ahead of the science. And it didn’t work. Now we’re conducting societal experiment number two, where we’re de-prescribing without having sufficient scientific evidence on how to do this the right way, how to protect patients.

Just saying ‘Stop them. They’re a bad drug. You’re a bad person for using this drug,’ is a disastrous, unethical approach Dr Simon Holliday

“You may have a patient that has been on a stable dose of opioids for 10 years, and then you start de-prescribing. We are now exposing them to new risks for opioid overdose, for suicidality, for actual suicide, for withdrawal symptoms, for increased pain.”

People living in chronic pain are a highly marginalised group. They tend to be more isolated, and live in lower-socioeconomic and regional areas. Nearly half of chronic pain patients also suffer anxiety and depression. Suicide rates are two to three times higher than the general population. And for a cohort that Painaustralia says already has a high prevalence of a key suicide risk factor – a lack of a fear of death – the fear and anxiety associated with withdrawing from a medication that they believe has been helping them manage their pain can be overwhelming..

Darnall says the risks associated with de-prescribing depend on the extent to which a patient is participating voluntarily. When they have little or no control, a patient’s pain and symptoms can be amplified, and they can feel abandoned and victimised by the medical profession, she says.

While Holliday would like to see fewer patients started on opioids, he says that it is unreasonable to expect some long-term users to be able to entirely cease their use. “It’s going to be there,” he says. “Just saying to people ‘Stop them. They’re a bad drug. You’re a bad person for using this drug,’ is a disastrous, unethical approach. I think that precipitous thing does happen; it’s happening in the United States and it’s happening in Australia. I think it’s really wicked.”

The problem with pain

The tricky thing about pain is that it is created in the brain. Pain is a distress signal from the body relayed to the brain, which responds with physical discomfort. Studies have suggested that pain is formed by a combination of bodily, psychological and social factors, and the extent of pain may not necessarily correlate to the extent of injury. Nevertheless, the pain is real.

Chronic pain is an increasing issue in Australia and the developed world. With an ageing population, increasing rates of cancer survivorship and advancing rates of obesity, the risk factors for pain are growing. Some 3.37 million people live in chronic pain in Australia today. By 2050 it is estimated there will be 5.23 million. A report by Deloitte put the annual cost of chronic pain in Australia at $139.3bn. Globally the cost is estimated to be equivalent to the cost of cancer and diabetes combined.

And yet, pain is not widely understood for what the most recent science tells us it is.

“Pain is a negative sensory and emotional experience – but we don’t treat the other half of the definition of pain,” says Darnall. “We have applied an overwhelmingly biomedical approach to treating pain, and this has not served our patients well over the past few decades.”

Tapering is not harmful if done well – but that’s a big ‘if' Dr Claire Ashton-James

The emotional dimension of pain and pain treatment is critical, and while a placebo is often understood as a sugar pill, Darnall says it is more complex than that. The placebo effect is the belief that a treatment will work. That belief in turn improves the chances of a treatment working.

However, it holds true in reverse.

“If you taper off opioids and you expect nausea, you’re expecting vomiting, you expect all sorts of pain flare-ups, then that will exacerbate your experience of those side effects,” says Ashton-James. “It doesn’t mean those side effects aren’t real, but that’s the mind-body connection.”

‘What will fill the vacuum left by opioids?’

And in facilitating that mind-body, multidimensional and whole-person approach to pain, Ashton-James says the current Australian system falls short. Up to 80% of chronic pain sufferers are not able to access specialist pain services, so most chronic pain is managed by GPs.

“The absolute crux of the problem is the funding model, because GPs aren’t incentivised to provide good pain management,” says Ashton-James. “The system isn’t set up to be able to necessarily do patients justice.”

She says that while it takes a few minutes to write a prescription for a pain condition, it can take an hour to sit with a patient and understand the context of their pain, its origins, what makes their pain feel less, what exacerbates it, what they do in the morning, what they did up until that appointment, what they eat, how much caffeine they drink. And then, from that point, develop strategies such as lifestyle changes, cognitive behavioural therapies, mindfulness, physiotherapy and so on. These strategies require multiple professionals, multiple visits to doctors, and education on the part of GPs.

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However, Holliday says it is unrealistic to expect GPs to reproduce these time-intensive strategies within a local surgery environment, particularly when GPs have had their benefits schedule effectively frozen for six years. But, with adequate funding and education, GPs can provide good chronic condition care, pain or otherwise.

Painaustralia’s Bennett says while opioids are not recommended for long-term pain management, something needs to fill the vacuum left when they are taken away. “If we want to change the situation around overreliance on medication, we must build alternative pathways for both practitioners and patients,” she says. “There is a big gap in what alternative supports currently exist or are accessible, and an even bigger gap in practitioner awareness of best practice pain management.”

At present, while drugs such as tramadol and fentanyl are available subsidised by the PBS, psychological and allied health treatments for chronic pain are, in general, available only in limited subsidised form and difficult to access outside of metropolitan centres.

The national strategic action plan for pain management, authored by Painaustralia and endorsed by state health ministers, aims to address this by funding subsidised individual and group specialist treatments for patients. The plan also intends to improve education and resources for clinicians and the public regarding effective pain management, with limited emphasis on pharmaceutical intervention.

“Forced tapering is a problem,” says Ashton-James. “Tapering in and of itself is not harmful if done well – but that’s a big ‘if’. It takes quite a bit of resources to do it well.

“But I believe it is the responsibility of our healthcare system to do it well, because we’re the ones who been prescribing for the last 25 years and creating the problem.”

• In Australia, the crisis support service Lifeline is on 13 11 14. In the UK Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. Other international suicide helplines can be found at www.befrienders.org

This is part two in a two-part series about life after opioids. You can find part one here