Lung cancer stigma still runs deep

How anti-smoking campaigning might come back to bite us as lung cancer screening gets underway.

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*Jac Eiffel felt exhausted for years and knew that something was wrong.

An x-ray and blood tests had shown nothing out of the ordinary.

After 60 appointments over two years with five different primary care providers, she was told she had depression and was prescribed antidepressants.

“I said, ‘I’m not feeling depressed or anxious at all. I’m just extremely fatigued and breathless’,” the 76-year-old tells The Medical Republic.

After coming back from an overseas work trip, Ms Eiffel was so out of breath she couldn’t walk and went to her local hospital ER, where doctors thought she could have a blood clot after her long plane trip.

But after a CT scan, the attending doctor told her she had lung cancer and would need to “revise her expectations and aspirations”.

“I am totally alone and the sole carer of three children under five. I do not have expectations nor aspirations, I just have a duty of care to young children who depend on me for everything, that’s all. I was devasted and had no one to talk to.”

Ms Eiffel was immediately discharged and told she would be contacted for a follow up appointment.

Six weeks later, she still hadn’t heard from anyone. After making a call and then waiting another six weeks to see a respiratory specialist who performed a biopsy, she was told her lung cancer was stage IV and terminal.

Back in the GP clinic, Ms Eiffel asked her doctor why he hadn’t ordered a scan and he said, “you never told me you smoked”.

But Ms Eiffel didn’t smoke, and never had. Yet she’d just become one of the thousands of non-smokers in Australia diagnosed with late-stage lung cancer each year.

‘You only have yourself to blame’

“I think people are very uncomfortable when you share that you have lung cancer. Their behaviour changes, as if you are tainted, dirty,” Ms Eifel tells TMR.

The stigma around lung cancer is so deeply entrenched, she says, that it impacts funding, awareness and the way patients are treated.

People with lung cancer are treated differently to those with other types of cancer, suggests Ms Eiffel, experiencing a stigma comparable to people with HIV/AIDS because it too is associated with behaviour that comes with a moral judgment and is “shamed”.

“I’ve seen bias expressed in many ways in a healthcare setting. It’s blaming people and making them feel like they’re not worthy of care or living because they are guilty,” she says.

“Is any woman with breast cancer ever looked at as if they were a second-class citizen? I doubt it. There’s no equity in healthcare, it’s just pretence, but sadly it is nothing but a reflection of society. The stigma is such that most people with lung cancer choose not to disclose their diagnosis.”

Few, if any, cancers come with more baggage than this one.

More than a third of Australians believe people with lung cancer only have themselves to blame, according to the Lung Foundation’s 2022 report The Next Breath: Accelerating Lung Cancer Reform in Australia.

It comes from communities, health providers, employers, and patients themselves, the report says, and it puts distressed patients at higher risk of suicide.

One international study, by the Global Lung Cancer Coalition, found that one in five people had less sympathy for lung cancer than any other form of cancer, while people with other cancers are perceived as blameless and deserving of empathy.

“Patients often feel a sense of stigma associated with lung cancer, which can manifest as guilt, shame, anxiety, and depression,” the Lung Foundation’s report says.

“Stigma can negatively impact on every stage along a patient’s lung cancer journey.”

Stigma hurts more than feelings

Stigma has far-reaching effects, leaving lung cancer under-funded compared to other cancers, says Lung Foundation Australia CEO Mark Brooke.

While lung cancer is the leading cause of cancer mortality in Australia with a burden of disease of around 20%, lung cancer research gets around 5% of funding.

“Compare and contrast that to, say, breast cancer,” he says.

“And I go to great lengths to say we’re not at war with other cancers, and diagnosis of cancer is terrible. But compare that with a cancer which has a burden of disease around 7%, but receives 30% of risk research investment, and they’re almost flipped.”

“The evidence over many years is that stigma has really impacted not just the quality of care that patients receive, but also the amount of funds invested in research, and, importantly, the community’s empathy towards people diagnosed with lung cancer.”

As the practicalities of Australia’s lung cancer screening program are still being finalised, there are concerns that stigma could deter people from signing up to the program that’s scheduled to start by July 2025.

Nathan Harrison, who is undertaking a PhD on smoking cessation, lung cancer screening and stigma, says international research shows that stigma and fear of diagnosis deter patients from taking part.  

“It’s very much hoped that that will not be the case,” he tells The Medical Republic.

“Making sure that our program is seen as accessible and not seen as further stigmatising will be really important.”

“On the other hand, it’s hoped that introducing a lung cancer screening program, as well as other recent advancements like improved therapies that improve lung cancer survival, might play a part in decreasing the stigma associated with lung cancer,” says Mr Harrison.

“This changing landscape, and improved survival outcomes, may help to shift perceptions that the disease is ‘untreatable’.” 

Why is lung cancer singled out?

There is strong evidence linking many other cancers to lifestyle factors, but they don’t come with the same judgments, says Lung Foundation Australia CEO Mark Brooke.

“When someone tells me they’ve got breast cancer, I don’t say to them ‘I didn’t know you’re a smoker. I didn’t know you drank too much red wine.’ Both are contributing factors, but we just don’t do that.

“Sadly, the first question many people will tell someone after a diagnosis of lung cancer is ‘I didn’t know you’re a smoker’, rather than ‘oh my God, how can I help you?

Chair of the RACGP cancer and palliative care network, Dr Joel Rhee, says smoking has almost become a “moral issue”.

“There are so many examples of other conditions that are associated heavily with certain lifestyle choices. Lifestyle plays a significant role in diabetes and heart disease development, and there are other lots of cancer subtypes which are associated with smoking, like bladder cancer. Yet I don’t think there’s a lot of stigma around bladder cancer and smoking.”

Not everyone who develops lung cancer is a smoker. According to the Lung Foundation’s 2022 report The Next Breath: Accelerating Lung Cancer Reform in Australia, one in three women and one in 10 men diagnosed with lung cancer (one in five people overall) have no history of smoking. But when it comes to stigma, they are tarred with the same brush.

“Many patients who have never smoked feel that a lot of people are judging them for developing lung cancer and making assumptions around their smoking status,” says Dr Rhee.

Ironically, Australia’s highly successful anti-tobacco public health campaigns have cemented the equation in our collective psyche that smoking equals lung cancer, with the unintended consequences of “both therapeutic nihilism and a lack of community empathy,” says Mr Brooke.

The authors of a review of the issues that could affect lung cancer screening uptake in Australia, published in Respirology, agree: “Anti-smoking campaigns reinforce the perception of ‘self-inflicted’ disease felt by lung cancer patients. These measures, highly successful in reducing smoking prevalence, perpetuate stigma by decreasing empathy for smokers.”

They say that the roots of smoking and lung cancer-related stigma can be traced to the tobacco industry’s successful counter-litigation strategies since the 1970s, which framed smoking as a “freedom of choice” issue.

“Using this argument, smokers, well aware of the health risks of smoking and able to exercise free choice, are to blame for their own illnesses, and industry, compliant with tobacco control legislation, is not responsible.

“This strategy became the mantra of the industry’s public relations campaigns, conveniently ignoring the highly addictive and harmful nature of smoking and the aggressive marketing tactics of the tobacco industry.”

Fortunately, public health messaging around tobacco is now changing to focus on airway diseases rather than lung cancer alone, but “decades of campaigning has unwittingly created this belief that if you smoke, you brought it upon yourself,” says Mr Brooke.

“What we’ve been trying to do for several years now is to change that conversation to acknowledge that smoking is an addiction like any other addiction, that individuals were preyed upon by tobacco corporations for generations.

“It’s the fault of those tobacco corporations, not the individual, that they’re addicted to this product.”

What can be done?

While there have been advocacy efforts to reduce stigma and increase empathy around lung cancer, “these are societal attitudes that can be quite tough to break down”, Mr Harrison says.

“Addressing this sort of issue often requires changes in societal attitudes and an understanding that historically, many people … might have started smoking at a time when the harms of tobacco smoking were not fully appreciated in the way they are now.”

The RACGP’s Dr Rhee says GPs will have a key part to play in encouraging people who are at higher risk – through smoking or family history – to “step up and get tested”.

“We’ve got a very important role to play in steering the social discourse to focus more on the disease as a problem and highlight that smoking is a dependence and addiction issue.

Mr Brooke says the Lung Foundation’s “great hope” for the lung cancer screening program is that it will normalise lung screening, just like breast and bowel checks.

GPs will be critical to presenting the nuances around lung cancer screening, to reduce stigma and avoid blame, he says.

“I think it’s a win-win for everybody for us to support smokers – and non-smokers – in feeling that they can access and trust the healthcare system, in ensuring that they don’t feel judged when they seek help for any respiratory related conditions or symptoms,” says Dr Rhee.

Dr Rhee says GPs are particularly good at discussing issues in a judgment-free manner in the context of long-term continuity of care with their patients.

“I think we’re pretty cognizant of the fact that we do have to approach these conversations carefully and sensitively, but at the same time, we do have to approach it.

“We do have to speak honestly with our patients about the harms of things like smoking, but not pass judgment on it.

“For smokers stepping forward for lung cancer screening I think we need to be really careful in making sure that it’s a value-free environment.”

At the same time, screening is a perfect opportunity to offer smoking cessation help, says Dr Rhee.

“Even if they get an all-clear from the lung cancer screening test, it’s a good opportunity for us to try to help these patients to quit smoking, but we need to make sure that’s done sensitively.

“We know from the drug and alcohol space that judgment-free treatment doesn’t lead to an increase in the prevalence of substance use, so I think having a judgment-free approach to lung cancer screening and diagnostic testing is going to add value.”

Research in reducing lung cancer stigma shows that language matters, says Mr Harrison.

“Avoiding blaming statements, or doubting patients’ self-reported smoking status, can help to increase patient comfort and avoid the stigma that is sometimes felt in lung cancer.

“Inclusive phrasing can help, and this is something being recommended by professional organisations, particularly in scientific and clinical communications.”

For example, use language that avoids referring to people as “smokers”, or defining patients by whether or not they have smoked, he says.

“Using person-centred language can help to reduce stigma in smoking, smoking cessation and in lung cancer. Keep in mind that people are not defined by whether they have a smoking history, but they might be a person who has smoked.”

Mr Harrison cites the lung cancer screening program in the UK as a good example of a model that uses language that doesn’t exacerbate the stigma associated with lung cancer, in part thanks to the language it uses.

England and Wales use a service called a “lung health check” – although it does include a broader screening program than Australia’s, he says.

“Notably, it doesn’t use the word cancer, it doesn’t talk about screening, and that’s been suggested as something that can help to maximise stigma reduction and make the program to be seen as quite accessible to the people likely to be eligible.”

No time to leave a legacy

Stigma is at the epicentre of the lack of equity in the care of people with lung cancer, says Ms Eiffel. But lung cancer prognosis is so poor that patients don’t have time to raise social awareness, educate doctors, campaign to change policy or even organise support groups for each other. They’re just getting their lives sorted in the time they have left, she says.

“We die fast. People who are diagnosed with small cell lung cancer on average die within nine months. It’s really short. It’s hard to keep the hope going. It’s not for the faint-hearted.

“And it’s not for the faint-hearted within the industry as well. Only once healthcare professionals have the courage to become more aware of their unconscious bias and become more educated on the issue, will we have a better chance of survival.”

* Note: Jac Eiffel is not her real name