Why belief in cancer fatalism can harm your health

Cancer isn't necessarily a death sentence, but it's common to believe that it is.

When Leonora Argate found a lump in her breast, the first thing she felt was fear. She thought, "Cancer doesn't seem to have a cure, right?"

Argate, a 64-year-old grandmother who shares her home with nine other people and a sari-sari (a small convenience shop) in Taguig, the Philippines, was reluctant to visit a health centre to confirm what she suspected.

It took almost a month before she agreed to go for screening. And after she was diagnosed with breast cancer, she didn't turn up for a surgical consultation.

"I really didn't want to get treatment because I was scared," she explains. Her cousin had died of cancer despite undergoing surgery for it.

Argate's neighbour had also experienced cancer and referred her to a patient navigator.

Patient navigators are health or social workers who guide patients through the various steps of dealing with a health condition, which can include connecting them with financial and transport support.

Argate's city, Taguig, has a patient navigator programme for people with breast cancer, in partnership between health officials and the iCanServe Foundation.

Argate's cancer moved through several stages. But following surgery, chemotherapy and medication, she's now in remission.

These physical changes have been accompanied by changes in how she thinks about cancer.

She initially felt hopeless about the disease – as so many people do, all around the world.

Psychologists, health workers and others have been studying this phenomenon, known as cancer fatalism, in order to understand why it's so persistent and to help people take action sooner.

The hope is that one day this research could save lives.  

Fatalism is complicated

Fatalism has been tricky to define.

It's generally thought of as a belief that outcomes cannot be changed and are determined by outside forces.

For Oscar Esparza-Del Villar, a professor of psychology at the Universidad Autónoma de Ciudad Juárez in Mexico, what some people call fatalism can be separated out from related factors like helplessness and a belief in divine control.

The researchers found that of  fatalism and these related factors, it's the helplessness that influences health behaviours the most.

Fatalism can have very different expressions in different cultures, but is seen around the world at varying levels.

Esparza-Del Villar coauthored a six-country study of fatalism.

"To our surprise, the German population was the group with the highest level of fatalism," Esparza-Del Villar explains – more than in Ghana, Kenya, Mexico, Nigeria or Switzerland.

This was contrary to some perceptions that fatalism is more common in low- and middle-income countries.

This suggests that psychological assessments of fatalism should be adjusted to different cultures. Esparza-Del Villar and colleagues created the first fatalism scale to be developed simultaneously in Spanish and English.

Perhaps surprisingly, fatalism can have some benefits.

In research with migrants near the Mexico–US border, "those with higher fatalism reported lower levels of depression and anxiety," Esparza-Del Villar explains.

"It was like a protective factor for them." Indeed, fatalism can provide a sense of wellbeing in the face of hardship.

However, there is a relationship between fatalism and potentially harmful behaviours, notably with cancer.

Fatalism has been linked to lower rates of colorectal cancer screening in Ireland.

In Ghana, some people say that destiny can't be changed when they refuse breast cancer treatment.

In the US, kids use sunscreen less when their parents are both fatalistic and have a family history of melanoma.

In the Philippines, "fatalistic attitudes on health are common," reports Janine Pajimna, an internist at St. Luke's Medical Center in Quezon City, the Philippines.

She and colleagues recently pointed to cancer fatalism as a contributor to the extremely low rates of cervical cancer screening in the Philippines, even though it is diagnosed using a relatively inexpensive visual test.

One representative Filipino phrase is kung oras mo na, oras mo na, which Pajimna translates as "when it is really your time, your time is up." She feels that the sentiment can be harmful.

"This statement is very fallible in a way that some Filipino patients would not even seek consult nor pursue life-saving treatments that can potentially prolong and/or improve their quality of life," Pajimna says.

"It is alike to merely accepting their fates without doing anything because that is the hand they were dealt," she says.

Cancer fatalism is very common

Cancer fatalism has two dimensions, says Laura Marlow, a senior research fellow in the Cancer Behavioural Science Unit at King's College London in the UK.

One is inevitability: the idea that external forces cause cancer and it can't be prevented. The other is incurability: the belief that if someone has cancer they'll die from it.

When it comes to inevitability, one expression of fatalism that Samuel Smith, a professor of behavioural oncology at the University of Leeds in the UK, often sees implied in news stories is the idea that just about everything causes cancer.

This gives the impression that it's nearly impossible to address the causes.

Contrary to this, Smith says, "the message around cancer has been relatively stable with regard to environmental determinants for many years: don't smoke, reduce your alcohol consumption (none is better), maintain a healthy weight, maintain a healthy diet, and get physical exercise."

The inevitability is one aspect of cancer fatalism, but "the incurability aspect of it is the bit that we really want to overcome," Marlow says, because in many cases that's no longer the reality.

Still, for many people, "the word cancer means death," Malgorzata Polnik has observed.

Polnik was an oncology nurse before becoming a psychotherapist based in Devon, England, where she continues to see many clients dealing with cancer.

In her experience, many patients tune out of medical consultations as soon as they hear the word cancer.

It can be hard to hear anything else – like the fact that some types of cancer are essentially chronic illnesses, which can be well managed if caught early enough.

"I see that for a patient hearing this powerful word, it leads to a whole process of reflection and maybe they're not ready right away to talk about all of the treatments," Polnik explains.

There are of course many practical and structural barriers to obtaining diagnosis or treatment for cancer.

But depending on the person, cognitive and emotional responses to this health threat may be just as significant, Smith says.

These include cancer worry, fear and fatalism.

 "We all hold these beliefs to some extent," says Smith.

In 2015. he coauthored a US study which found that 66% of participants thought that everything causes cancer, and 58% automatically associated cancer with death.

This is despite cancer survival rates increasing over time, especially in wealthy countries like the US.

Marlow believes that "things like fatalism are really detrimental to that early part of the process," where people avoid thinking about things like cancer screening.

"They don't necessarily trump all of the other stuff that we've got to put in place to support people to be able to participate in these behaviours."

But all those aspects need to be addressed in order to improve health outcomes.

Beyond fatalism

When Polnik works with patients who believe that their cancer is going to kill them, she focuses on asking questions rather than issuing statements.

For instance, she asks how healthy such thoughts are, and whether they have a factual basis.

"Sooner or later, we’re going to come to the conclusion that the belief is not based in fact," Polnik says.

She might then ask if such beliefs are helping her patients resolve their conflicts, or whether they're worsening their anxiety.

This kind of step-by-step approach helps to break down what can feel overwhelming.

Beliefs are powerful but not always well understood.

For example, religious belief is not the main reason that fatalistic people may avoid certain health measures, as is sometimes thought.

In fact, in some cases religious service attendance is associated with more screening against cancer.

Pajimna says that balance is important.

Although some people find that faith is beneficial for their mental health, some people take it to the extremes and view scientific evidence as invalid, she says.

"This attitude serves as a hindrance to vital health seeking behaviours, such as undergoing regular cancer screenings and receiving life-saving vaccinations," says Pajimna.

More than religion, the factor that significantly explains cancer fatalism is education.

Of course, education and health literacy can be entangled with other factors like gender, income, language, migration status and ethnicity, but some research suggests that these factors alone are not sufficient to understand why cancer fatalism is so prevalent in certain groups. 

Where healthcare is unaffordable or inaccessible, cancer fatalism is especially unsurprising, says Smith.

In these environments, cancer really can come with higher mortality rates because it's often diagnosed at a later stage or fewer treatments are available.

Without education, it would be easy to take a fatalistic view, but in reality people can improve their chances of survival with simple behaviours such as going for screening.

"It's about trying to address that and trying to ensure that those people in the community understand that it's not an inevitability," says Smith. And that's where positive stories are especially needed.

Smith comments that fatalism should be addressed not just at an individual level, but also at a community level, to encourage public understanding of cancer.

"Meeting people where they live rather than expecting them to come to you could be one way of addressing this,"  says Smith.

For example, Bowel Cancer UK are running roadshows outside places like supermarkets, where people can walk inside giant inflatable bowels and learn more about bowel cancer.

Marlow says being able to speak with health professionals in a more conversational way at events like roadshows is particularly useful "when people have low health literacy and find it difficult to pull meaning out of text-based communications".

In general, because education levels are the most important factor in cancer fatalism, reducing educational disparities can help to address other inequalities that affect health.

This includes any form of educational attainment, regardless of whether it is directly related to health.

Another approach is to tackle those inequalities in healthcare access head-on.

While reforming entire educational and health systems is an ambitious goal, there are also smaller-scale ways to address differences in education levels, like using visuals and accessible language in educational materials about cancer.

It can also be helpful for patients to share their own stories, as Argate is doing.

She was able to manage her fear with the support of her family as well as her patient navigator, who would call and visit her at home.

All this helped to bridge the emotional, financial and practical realities of living with cancer.

In the Philippines, patients with patient navigators are less likely to abandon cancer treatment.

Now, Argate says, if another person with cancer tells her that they don't want to go to the doctor,

"I will tell them not to be afraid to seek treatment because there is someone helping us."