Fatalistic attitudes as a barrier to healthcare

Barbara Powe5 was one of the first researchers interested in the role of fatalism in healthcare. She correlated fatalism with certain cancer screening behaviours among older African American adults using a 15-item questionnaire and unidimensional measureⁱ for fatalism that became known as the Powe Fatalism Inventory (PFI). By these measures, African American research participants were significantly more fatalistic than white participants. Participants who were more fatalistic participated less in faecal occult blood testing (FOBT),ⁱⁱ that is, a negative correlation became apparent between fatalism and FOBT use. The PFI measures were the only significant predictor for FOBT use when compared with age, income and education: evidence that fatalism inhibits health-seeking behaviours.

This study was the first of many to establish consistent differences between racial and socio-economic groups in how fatalism features in cancer-related behaviours. Chavez et al 2 found that Latina women who responded positively to questions derived from the PFI were less likely to report having a pap smear. The authors concluded that fatalistic beliefs were higher in the Latina study population than in the non-Hispanic Caucasian control group and additionally that fatalistic beliefs negatively influenced Latina immigrants’ use of pap smears.

Similar connections have been made that negatively correlate fatalism with other health behaviours. Egede and Bonadonna11 used a qualitative approach to investigate fatalistic beliefs in African Americans with type 2 diabetes. They conclude that fatalism in this population was prominent and aligned with the definition put forth by Powe.5 Schnoll et al 12 linked fatalistic attitudes with continuing smoking behaviour after cancer diagnosis. Powe also advanced her own findings, demonstrating that viewing an educational video decreased PFI scores and increased cancer knowledge. The takeaway was that fatalistic attitudes can be ‘overcome’ through health messages, further evidence that fatalism should be an issue of public health concern as a barrier to care.13 14 Research on fatalism in the 21st century has continued much in the same vein, associating fatalism with various delays, lapses and absences in treatment and prevention and advocating for more aggressive health education campaigns.15

Complicating the picture: fatalism in context

Not all researchers have found a clear negative correlation between fatalism and health-seeking behaviours. Franklin et al 16 included a ‘Helpless Inevitability Subscale’ to further explore ‘fatalism’ as measured by a religious health fatalism questionnaire. Fatalistic beliefs were not found to be a predictor for any healthcare utilisation variables, and they had inconsistent impacts on other domains. For example, while fatalism and chronic illness were significantly associated, participants with fatalistic beliefs also reported that they were more physically active than their non-fatalistic counterparts and fatalism was associated with both fat-increasing and fat-decreasing behaviours. The authors conclude, ‘the strongest relationships were found between health outcomes/chronic illness rather than healthcare utilisation. Thus, fatalism may, rather than inhibit health behaviours, be a reaction to poor health or chronic illness’ (emphasis added).16 Franklin et al suggest that there is a lot more to take into account than originally thought.

Following this call to reconsider fatalism, Drew and Schoenberg17 undertook two qualitative studies on fatalism, both based in American Appalachia. The first involved 18 months of ethnographic fieldwork in rural Kentucky, and the second comprised of interviews with middle-aged women in Kentucky and West Virginia. Appalachian populations have endured stereotyping as ‘backward’ and poverty-stricken, taking up a role in popular imaginaries as the ‘other America’ since the mid-19th century. They are predominantly white, unlike the populations of concern for Powe and others. These ethnographic accounts show that, in this context, expressions of fatalistic beliefs did not necessarily indicate powerlessness or hopelessness, rather were a culturally acceptable way of talking about challenge and constraint. Women’s fear of learning bad news about their cancer status was dealt with through fatalism as a cognitive and rhetorical device, without actual belief in an unchangeable outcome. This study shows that it is important to consider the context in which fatalism arises in order to understand its role in cancer experiences, rather than the content of fatalistic articulations alone. The study furthermore suggests that fatalistic statements might be an exercise of individual agency, rather than an irrational response to poor health.

Other ethnographic and qualitative studies have similarly illustrated the importance of context. Balshem18 showed how rejection of health messaging was a form of resistance for an urban, white, working-class community in Philadelphia. Individuals in this community used fatalistic expression as a counter-discourse to resist the power relations that denied them the ability to defend the value of local traditions. In this case, fatalism was posited against scientific authority within a structure of power and legitimacy. With this new understanding, we might interrogate the ability of measures such as the PFI to identify causative factors underlying patients’ inadherence to screening recommendations. The ‘cause’ of inadherence in this case may be much more related to social group, working-class ethos and local politics than a genuine belief that an individual does not have control over their own health.

Pill and Stott19 also showed how fatalism is embedded in context; in this case, the context was a larger ontological debate about the role of individual responsibility in maintaining good health. Among a sample of working-class women in South Wales, many did not identify individual life choices as a cause of illness. The women only ascribed blame to the individual in specific circumstances, for example, if one neglects to visit the doctor for a problem. The results show how different loci of control shape perceptions of health, just as they may shape decisions to purchase or rent homes. Indeed, the study found that homebuyers were more likely than tenants to believe that their behaviour shaped their health. In short, willingness to accept responsibility depended on perceptions of the aetiology of illness. This study introduced a notion that, in addition to social and political context, the operation of fatalism within larger belief systems is important for understanding fatalism’s impact on health behaviour.

A critical look at quantitative approaches and epidemiological paradigms

Clearly, fatalism is complexly entangled in lives and difficult to reduce to a measurable variable. With this in mind, a return to the earlier studies that established negative correlations between fatalism and health-seeking behaviours seems necessary. Studies have concretely shown that there are some groups of people (particularly ethnic minority populations) who consistently respond to illness in more fatalistic ways.2 5 There is a relationship between PFI measurements and a pattern of health behaviours. However, none of the authors established a distinct, causative relationship between these factors. We are left with the question: what does the PFI really measure?

Several researchers have criticised the PFI for its shaky content and construct validity, as well as the problematic unidimensionality of the scale. Drew and Schoenberg17 contend that Powe’s formulation was riddled with ‘inconsistencies, overly general statements, and questionable validity and assumptions’. Many questions included in the PFI and other scales were leading or double-barreled, for example, ‘as a result of the AIDS threat, I have resolved to be more responsible in my approach to sex’.20 This question touches on more than one issue but demands only one ‘yes’ or ‘no’ answer. Drew and Schoenberg17 also criticise the dichotomisation of ‘fatalistic’ and ‘non-fatalistic’ people, a radical simplification of a very abstract belief. A good example of haphazard classification can be found in Harris et al,21 when the author categorises women who believe that their chances of surviving breast cancer are ‘fair’ or ‘poor’ (as opposed to ‘good,’ etc) as ‘fatalistic.’ There are perhaps many other compelling reasons for projecting survival chances as less than good.

Taking into account these criticisms, Shen et al 22 developed a new scale, which showed a positive correlation between healthy behavioural intention and fatalism: fatalistic people want to do healthy things. This finding completely contradicts the idea that fatalism causes people choose health inaction. The authors explained this by pointing to a discrepancy between intention and actual behaviour: people may not always act in accordance with what they believe. In addition, there is an ephemeral nature of intention to begin with, as well as potential effects of an ‘optimism bias’ (fatalistic beliefs may concern others more than the self). The authors argue that low response-efficacy could be the main cause of health inaction, rather than fatalism itself.22 Keeley et al,23 provided support for this claim by showing that articulations of fatalism always came alongside statements endorsing the importance of healthy behaviours for protecting well-being. This complexity went unaccounted for in many previous quantitative studies.

While methodology certainly limits any research inquiry, the more impactful limitations on health behaviour research are the enduring epidemiological paradigms built on oversimplified models of health behaviour and belief. Predominantly, this is the popular ‘multiple causation’ model, which identifies ‘factors’ in disease causation that exist per se without any theoretical framework to understand their origins. This model relies on assumptions of biomedical individualism and that ‘factors’ such as ‘the economy’ and ‘treatment at the clinic’ have no hierarchy in determining disease distribution and health outcomes. It also makes no distinction between population and individual health.24 The early studies by Powe and others rely on similar assumptions and paradigms by viewing fatalism as a ‘factor,’ without seriously considering its origins or various entanglements with social, political and economic contexts.

Culture or structure?

Some authors have argued that health fatalism is tied to economic means. Freeman25 described a ‘poverty-cancer spiral,’ wherein poverty interacts with medical care and creates fatalism and a ‘self-fulfilling prophesy’ of ill-health. Day-to-day stressors inhibit a focus on health prevention in the absence of symptoms. By the time that cancer symptoms are present, it may be too late for a good prognosis. These poor outcomes reinforce fatalistic perspectives.25 This cycle emerges in studies that forefront patient narratives.18 26–28 In other words, fatalism is neither cause nor effect entirely but accompanies the experiences of individuals that are shaped by structural limitations.

Extensive literature in medical anthropology and sociology on reflexive biography and illness narratives address similar issues of structure and agency. These works acknowledge both a patient’s constraint, as they are expected to seek treatment and comply with medical advice,29 and their agency within these limits. In illness narratives, patients can assert their own stories, challenging medical meta-narratives and reclaiming more autonomous conditions.30 Balshem’s18 study of fatalistic expression as a rejection of medical hegemony suggests that fatalism may be mobilised within patient narratives as a way of reasserting individual autonomy.

The studies by Freeman19 and Balshem18 suggest an influence of various structures on fatalistic belief. ‘Structure,’ specifically structural violence, describes inequality of power, wealth, privilege and health within a single system, attaching ‘difference’ of many forms to particular, causative events and relationships. ‘Culture,’ on the other hand, describes how various elements fit together to form a coherent way of life. If Powe5 and those who followed started with a question of inequality, then structure, rather than culture, is a better starting point from which to understand fatalism. ‘Culture’ has somewhat limited explanatory power in these circumstances (a detailed review of the shortcomings of ‘culture’ in explaining health belief systems can be found in Currer31 and many others). Even if it is the case that ‘culture’ is at fault, one must navigate the ethical quagmire of changing lay belief, which raises questions about privileging medical knowledge and prioritising health, the role of the state, the ‘prevention paradox’ⁱⁱⁱ and intolerance of ‘lay’ cultures among them.32

Yet, this is where we find the discussion of fatalism largely located in medical literature today and problematically so. Cultural explanations for health behaviour reinforce notions of immutable, essential difference between the goals of biomedicine and those unfamiliar, ethnic or ‘lagging behind’ (yesterday’s ‘primitive’). This is not to say that culture is uninvolved, but it is important to tease culture and structure apart. Mistaking structural for cultural explanations obfuscates the influences of history and power relations, bypassing uncomfortable questions of accountability. There is a notable absence of literature addressing the structural components of fatalism, save some of the anthropological studies mentioned previously.17 18 It is notable that fatalistic beliefs did not appear to predict pap smear use among non-Hispanic Caucasian women.2 While this could have been an indicator that racial histories should be considered seriously in explorations of fatalistic beliefs, this finding was unelaborated. Few studies of fatalism mention the legacy of slavery, which is surprising, given that, for 245 years, Africans in North America quite literally had no control over their fate. These studies neglect to take into account how fatalism interacts with race and class to produce a multiple, tapestried illness experience.

If fatalism has to do with structure, then simplistic refrains about ‘bad,’ fatalistic patients have nefarious implications. Especially given that fatalism has largely been attached to ethnic minority patients, a close examination of what type of person becomes the ‘bad’ patient reveals a close connection to racial tropes about belief and behaviour. Orientalists have long used stereotypes about the ‘fatalism’ of Muslims to perpetuate an image of the Middle East as an underdeveloped backwater. ‘‘Fatalism,’ in short, is a simplistic reduction of a complex Muslim reality’.33 In fact, the views that many authors have identified as ‘fatalistic’ in healthcare are quite common among different demographic groups.17 While African Americans are often portrayed as not ‘well-behaved’ in healthcare and beyond, the partial attachment of fatalism to minority patients raises questions and concerns.34

Most studies of fatalism in health focus on the harms of fatalistic attitudes. However, fatalistic statements have useful functions for people suffering from illness. Keeley et al 23 examined how individuals’ expressions of fatalism represented an understanding of limiting factors for health efficacy, including genes, spiritual agents, prior behaviours and personality. Fatalism functioned as a source of stress relief by removing the burden of worry as people accepted their vision of the future. It helped individuals ‘save face’ by removing self-blame. Fatalistic statements expressed and managed the uncertainty inherent in disease risk. Finally, when people referenced someone they knew who had suffered from an illness, they made sense of their suffering by explaining that the time in which preventative actions could be taken had passed, so they inevitably fell ill. Too few studies have considered how fatalistic attitudes actually may be useful to patients in this way.