Health
Too often, healthcare practitioners fail to hear the voices of people – especially women – in pain. Australian initiatives are trying to change that, replacing doubt and dismissal with support and advocacy. By David Sornig.
Finding new pathways to treating pain
It was halfway through September 2023 when Toni was admitted to hospital again, hit by another of the many painful infections entangled with her terminal condition.
The pain was still with her when, after a few days of intravenous antibiotic treatment, she was told she was being discharged. She worried aloud about the decision but was assured by the nurse on duty, by way of relay from a clinical team, it was the right one. Toni headed home.
Within hours the pain had worsened. She spent that night back in the emergency department, being shunted from the waiting room to an examination cubicle and back again. At dawn, she was again told to go home. She hadn’t been treated. The pain hadn’t abated.
That night, the fever she’d been sure was coming erupted decisively. But heading back to the ED felt like a risk. She didn’t want to be obtuse. There was a number she’d been told to call if things were going wrong and the nurse who answered couldn’t find any reason to contradict the assessment she’d already been given. Stay home. See how you are in the morning.
Toni was burning up. It was an awful, distressing night for her. I know this because I was by her side.
A terrible part of the experience of pain is that it is profoundly interior, and, because of that interiority, communicating the truth of it relies as much on the good faith of the listener as it does the narrative and language capacity of the teller. As the American thinker Elaine Scarry once put it: “To have great pain is to have certainty; to hear another person has pain is to have doubt.”
In health systems, when that equation becomes unbalanced by the perception, again in Scarry’s terms, of “the voice of the patient as an ‘unreliable narrator’ of bodily events”, the consequences can be devastating.
This basic dilemma of communicating pain – and that it is women in particular whose pain is routinely dismissed and ignored by clinicians – led to last year’s launch by Premier Jacinta Allan of the Victorian government’s Inquiry into Women’s Pain.
Any number of submissions made to that inquiry focused on the need to improve how the voices of women are received in health settings. The Victorian Women’s Health Services Network, as one example, noted: “Many women found that assertively advocating for themselves was essential to receiving appropriate care and effective pain management.”
The inquiry’s report is due imminently, and offers an opportunity to think about the structural bridges that might help to overcome the gulf of doubt that lies at the heart of Scarry’s equation. To ensure that pain spoken is pain heard.
One way forward might be to adopt some of the most attentive aspects of Queensland’s nurse navigator program. This near-decade-old initiative employs some 600 senior registered nurses across the state who act as a single point of ongoing clinical, communications, social and emotional support for patients.
The Queensland program is predicated on “four pillars”: the coordination of care; establishing a strong sense of partnership between patients and the healthcare system; encouraging active patient engagement; and improving patients’ health literacy and understanding of how to navigate the system.
What’s particularly valuable to patients from an advocacy point of view is where navigators “act as the liaison between patients and their healthcare providers”, says Shelley Nowlan, Queensland’s chief nursing and midwifery officer. This service, she says, is to “ensure that there’s seamless communication coordination, that barriers are removed, and it becomes enabling”.
Similarly titled “patient navigators” already operate in Victoria’s cancer care system. They deliver some of the logistical functions of the nurse navigator and help to keep patients from being overwhelmed by a bewildering network, but they lack the authority of clinical expertise.
A rare clinically informed patient advocate service is delivered privately in Victoria by critical care nurse and nurse educator Kate Hoskin. Hoskin’s aims – both to speak for patients’ needs and to build their ability to self-advocate – broadly align with those of navigators in the Queensland system. They are aspects of the role she’d like to see amplified in systemic reform so that patients are able “to ask for better for themselves [so] the system has to then step up to meet their expectations”.
When asked, a Victorian Department of Health spokesperson wasn’t able to flag any intention to introduce a nurse navigator program in the state as a response to the Inquiry into Women’s Pain. They pointed instead to plans to reform the treatment of women’s health issues across the state, and to “a number of similar roles” to nurse navigation, such as clinical nurse consultants and nurse practitioners.
Specialist nurses are essential to delivering quality care, and in Queensland they complement the work of nurse navigators. However, they differ from the latter in important ways. A 2023 Central Queensland University (CQU) evaluation of the Queensland system highlighted that it is the navigators’ “ability to provide unbiased advocacy [that] establishes a key point of difference to other nursing positions”.
From the patient perspective, Queensland Health cites positive experiences with the nurse navigator program, including one patient who reported that their navigator helped them “re-engage with healthcare because she understood that I am a whole person”.
By putting the patient’s experience at the centre of clinical attention, a program such as the nurse navigator might help rebuild trust between the patient and the system. That trust, the Victorian inquiry suggests, has been a casualty of the underlying failure to hear the voices of women experiencing pain.
Patients in the CQU study told of their relief at knowing their calls for help were going to be heard. “The navigator,” said one patient, “was always there at the end of the phone, ready to respond.”
Over and again, the structural provision of an attentive and responsive practitioner – “someone paying attention and someone with clinical wisdom”, as Hoskin describes it – is identified as critical to effective care.
In the morning after Toni’s long night, there was no mucking about. She went to hospital early and was admitted for treatment as a matter of urgency. Ultimately, it was the measurable fever, rather than the pain she reported, that made the difference. By now, though, the infection had taken hold. It was two months before she was able to go home again.
Toni passed away in January of last year. She was deeply grateful for the attentive and even loving care she received in and out of hospitals during her illness. However, the failure to understand her pain over those two days in September robbed just a little more beauty than was right from what had already been a remarkably unbeautiful year.
It’s not always useful to dwell in counterfactuals. But I’ve often wondered, since then, whether one key person, an agent of authoritative clinical wisdom, someone who was willing in good faith to hear her pain, might have been able to find a way to steal just a moment of that beauty back.
This article was first published in the print edition of The Saturday Paper on April 26, 2025 as "Pain belief".
For almost a decade, The Saturday Paper has published Australia’s leading writers and thinkers. We have pursued stories that are ignored elsewhere, covering them with sensitivity and depth. We have done this on refugee policy, on government integrity, on robo-debt, on aged care, on climate change, on the pandemic.
All our journalism is fiercely independent. It relies on the support of readers. By subscribing to The Saturday Paper, you are ensuring that we can continue to produce essential, issue-defining coverage, to dig out stories that take time, to doggedly hold to account politicians and the political class.
There are very few titles that have the freedom and the space to produce journalism like this. In a country with a concentration of media ownership unlike anything else in the world, it is vitally important. Your subscription helps make it possible.
Subscriber exclusive
Send this article to a friend for free.
Share this subscriber exclusive article with a friend or family member using share credits.
