Fatalism, Cynicism, and Preventive Health: Thoughts from Guatemala

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Anita Chary

Anita Chary

Anita Chary, MD PhD, is an anthropologist and resident physician at the Harvard Affiliated Emergency Medicine Residency. She is Research Director of the non-governmental organization Maya Health Alliance | Wuqu' Kawoq, which provides health care and development services in rural indigenous communities of Guatemala.

“The concept of prevention doesn’t exist in Guatemala,” a nurse named Delmi told me during a cervical cancer screening campaign in a rural village.  We had traveled an hour from the nearest town along dusty dirt roads to get to an elementary school, where Delmi set up shop in a small storage room whose walls had been plastered with USAID posters about hygiene.

Delmi, who worked for an NGO contracted by the Guatemalan Ministry of Health, was scheduled to offer Pap smear exams for five hours.  She spent most of the morning waiting; despite the fact that local health promoters and schoolteachers had publicized the campaign for the last several days, only three women showed up to get screened.

The view from the minimally-attended screening campaign with Delmi.

The view from the minimally-attended screening campaign with Delmi.

“This is how it is in many of the communities,” Delmi said, frustrated, and began to relate that she had seen two women with advanced cervical cancer in other villages within the last year.  “Only at the moment that they’re very sick or on the point of death do they seek help.  They don’t get to thinking that all of this could be prevented beforehand.”

Over the last several years, I have been conducting qualitative research about cervical cancer prevention in Guatemala, a country where the disease has become a national priority in the public and NGO health sectors within the last decade.  Whenever I interview health care providers about their work, they always mention the standard barriers to cervical cancer screening in Guatemala, all of which are common in other parts of the world: service inaccessibility, a lack of health education, gender inequalities in health decision-making, and the stigma associated with obtaining a pelvic exam.  Indeed, these are important reasons that screening rates in Guatemala are so low: a large-scale national survey estimates that only 42% of Guatemalan women have ever been screened (MSPAS et al. 2002), and the Ministry of Health reports an annual screening coverage rate of only 18% (Alvarez 2013).  However, a related theme that frequently arose in interviews was the idea that, as Delmi put it, “the concept of prevention doesn’t exist in Guatemala.”  Many health care providers viewed “the mentality of the people”—namely, that impoverished Guatemalans do not think about preventing health problems—as a significant challenge in cervical cancer prevention efforts.

“We’re a country with very little culture of prevention.  We don’t have an awareness of prevention,” a Guatemalan physician who ran a large screening program told me.  “No one has taught us to value it.  To prevent is cheaper than to cure, but in terms of popular consciousness, [prevention] is not valued.”

This idea—that laypeople don’t value, or even think about, preventive health—is something many of us working in medicine, public health, and global health development have likely encountered (or thought to ourselves) at some point.  Whether it’s smoking cessation in the US or healthy eating among diabetics in Samoa, a common complaint is, “They’re just not thinking about the future!”  In general, we are quick to apply this sort of analysis to the poor; it is assumed that when people’s basic needs—food, shelter, and security—are not met, they necessarily live in the present, from paycheck to paycheck or harvest to harvest, and concerns with preventive health take a backseat.

Of course, people engage in preventive health all the time, even if we’re not aware of it.  In the Guatemalan context, for example, people commonly practice standard biomedical preventive behaviors—by vaccinating their children or drinking potable water if it’s available.  There are also many ethnomedical forms of preventive health, such as dietary “hot-cold” restrictions or covering oneself to avoid evil eye or the energies of a lunar eclipse.

So what makes a disease or condition prevention-worthy in the “popular consciousness”?  The psychology of preventive health, both individual and collective, is undoubtedly complex, but to add a little bit to our knowledge on this topic, I’d like to offer some observations about what deters laypeople from valuing preventive health measures.  What follows is derived from ethnographic research about cervical cancer prevention in Guatemala—observations and surveys at screening campaigns, interviews with women and health care providers, and NGO work in community women’s health programs.

 

Women wait at a screening campaign in rural Guatemala.

Women wait at a screening campaign in rural Guatemala.

Cynicism

Theory #1: People will not value preventive health measures unless they are convinced of the quality of health services.

Several women I interviewed in community health programs felt that getting screened for cervical cancer was pointless (“por gusto” or “de valde”) because “the Pap smear lies.”  They offered stories about friends who had gotten a “normal” Pap smear at a Ministry of Health facility or APROFAM, a major NGO with reproductive health clinics across the country, only to start having vaginal hemorrhage and find out they had advanced cancer soon thereafter.  This scenario is likely related to Pap smears’ lower sensitivity when advanced disease is already present, but also undoubtedly related to the fact that there are no programs for cytological quality control in the Ministry of Health and many private labs.

The story of Flori, a 41-year-old single mother I interviewed at Guatemala’s oncology center (INCAN), is a case in point.  When I asked Flori how her illness had begun, she responded:

“Five years ago, when my son was five years old, I went to a campaign (jornada) that was run by Cuban doctors. They did a free Pap smear for me and they told me afterwards that my uterus was in bad shape.  So then I went to other doctors afterwards, but they didn’t find anything wrong with me.”

The Cuban doctors had told Flori she would need a hysterectomy.  Following up, Flori first visited the local government health center, where she had a second Pap smear revealing no abnormalities.  Skeptical, she visited the regional government hospital, where she had another normal Pap smear and an ultrasound with no significant findings.  Thinking the Cuban doctors might have been mistaken, Flori put the matter aside.

Four years later, she developed pain and vaginal hemorrhage.  A doctor at the regional hospital convinced her that she was going through menopause.  However, the pain and hemorrhage grew worse.  “And I began to empty myself of blood (desvaciarme) in the house.  I couldn’t stand,” she recalled.  At the recommendation of a fellow church member, Flori traveled to a national hospital in another department, Quetzaltenango, which had a better reputation for providing quality medical services.

“I was very surprised that when they did the biopsy, it turned out that I had a cancerous tumor…When I talked to the doctor at San Juan de Dios [the hospital], I told her, if my ovaries and my uterus don’t serve me anymore, then just take them out.  But she said no, you have to go to INCAN, we cannot do it here.  But I am poor.”

Although the Guatemalan constitution guarantees citizens free health care, advanced oncology services are not available through public sector health facilities.   Flori delayed going to Guatemala City to visit INCAN because, as a food vendor in a rural village five hours from the oncology center, she did not have the money to pay for chemotherapy, which typically costs thousands of dollars. Instead, over several months of blood loss, Flori was locally hospitalized multiple times to receive blood transfusions.  A social worker at the regional hospital finally sent her straight to INCAN in an ambulance.

By the time Flori made it there, her cancer was too advanced for curative treatment.  When I asked her what her advice for other women was, she responded, “The Pap smear lies.  You don’t find out anything with it…It’s better to go straight to a biopsy.”

Stories like Flori’s circulate at the community level and discourage trust in preventive health services such as Pap smears.  This distrust ends up applying to other types of cervical screening exams, such as visual inspection with acetic acid (VIA), as well, as women tend to refer to both exams as a “Papanicolaou.”  For those who do distinguish between the “regular Pap” and the “rapid test” (VIA), VIA may induce other anxieties.  Some women I interviewed expressed fears about false negatives with the “acid exam,” based on friends’ and family members’ experiences.  Others reported not wanting to get the “acid Pap” because of a widely publicized incident in Guatemala City, in which a group of women were severely burned when non-dilute acetic acid was used in VIA exams (Reyes 2012).

What we see here is a cynicism among laypeople about the quality and accuracy of cervical cancer screening exams, which ultimately deters women from getting screened.  If “the Pap smear lies,” and if you “get burned with an acid Pap,” why bother getting screened?

Fatalism (or realism?)

Theory #2: People will not value preventive health measures until curative services are available and accessible.

“There’s a fatalism here [in Guatemala],” a health care worker told me during a lull at a VIA campaign, explaining why so few women were in attendance.  “Women say, ‘Yes, that’s just how it is.  What can I do?’  Or they say, ‘Some time in my life, I have to experience something [bad]. This is what God wants, and I have to accept divine will.’”

Indeed, when I asked some women participating in community health programs why they did not want to get screened, they responded: “Better that I just die,” “God determines what happens to us,” or “God is the one who decides if we get sick.”

However, with further probing, it often became clear that in addition to religious notions of pre-determination, limited opportunities for follow-up care weighed into women’s decisions to not get screened.  Many women I met who refused screening did so not only because they were afraid of a bad outcome, but also because they felt that nothing could be done if their test “turned out badly.”  If a woman has an abnormal Pap smear result, she needs to get follow-up exams, a biopsy, and potentially a minor surgery to remove pre-cancerous tissues—or even cancer treatment, if the disease is advanced.  In many departments, women who get screened through the Ministry of Health receive no support to obtain follow-up care if their results are abnormal.

In an ideal world, the single-visit screening approach with VIA-cryotherapy obviates these problems.  However, in reality, cryotherapy is not always immediately available at Ministry of Health and NGO clinics that offer VIA in Guatemala, and women with large lesions must be referred to colposcopy.  This means that women must often seek out follow-up care for a positive VIA exam, as well.  Again, follow-up services are not widely available and they tend to be economically or logistically inaccessible.

Sixty-year-old Juana’s response to my question, “Have you ever gotten a Pap smear?” encapsulates many of these issues:

“I have never done a Pap smear.  Only God knows how we are [whether we are well]; I don’t want to know.  It’s better that I die.”

When I asked Juana why she did not want to know, she launched into the trials and tribulations of three women from her village whose screening exams had “turned out badly.”  One of them had struggled to travel to the regional hospital for follow-up care, but the waiting line for hysterectomies was so long that she ended up selling her livestock and household possessions to afford the surgery at a private clinic.  Two others had bankrupted their families to travel to Guatemala City to seek out treatment for cervical cancer, but had ultimately died.  “I don’t have that money.  Why would I get the exam?”

Concerns about these issues came up at screening campaigns I visited.  For example, at an NGO-sponsored campaign in eastern Guatemala, a woman stood up during the pre-screening educational session and asked, “Are you going to help us if the test turns out badly?  If they’re not going to help us if something bad comes up, then why should we do the test?”  Similarly, at a Ministry of Health campaign I visited in the western highlands, a woman who was picking up her Pap smear results reported that her friends decided not to come back for theirs because they wouldn’t be able to afford treatment if they needed it.

While these sorts of attitudes are often labeled as fatalistic, they are based in real experiences of health care inaccessibility and poor health outcomes.  The bottom line is that women may see no point in getting screened unless there’s a structure in place to obtain follow-up care.  As one NGO director who managed a cervical cancer screening program put it:

“If a woman is diagnosed with cancer, cannot get treatment, and dies, this can scare and discourage other women from getting screened, because cervical cancer screening can be perceived as possibly learning you have a death sentence.  Clearly, the reality of screening is more nuanced than that, but it’s a common issue in many contexts, that a big reason people do not get testing for a variety of illnesses—including HIV, for example—is that they’d rather not find out bad news that they fear they can’t do anything about.  Access to treatment changes perceptions of the value of screening.”

 

Harvard medical student Sarah Messmer trains Sandy Mux, a nurse working for Maya Health Alliance/Wuqu' Kawoq, in cervical cancer screening at a campaign in rural Guatemala.

Harvard medical student Sarah Messmer trains Sandy Mux, a nurse working for Maya Health Alliance/Wuqu’ Kawoq, in cervical cancer screening at a campaign in rural Guatemala.

 

Concluding Thoughts

There are many personal, cultural, and structural factors that influence a how an individual values and practices preventive health.  Here, I’ve touched on only two themes, which I’ve broadly (and somewhat ironically) labeled as “cynicism” and “fatalism,” but both point to urgent agendas in the context of global health development: improving the quality and the accessibility of health services.

In the case of cervical cancer screening, the implementation of quality control programs—for cytology, VIA, and HPV DNA testing alike—is imperative, as is ensuring adequate training of service providers offering screening.  Developing and strengthening infrastructure and referral systems for follow-up care is also recommendable.  These long-term goals may seem ambitious, especially for low-resource settings like Guatemala, and especially when we as global health practitioners are under pressure to show immediate results.  However, women are more likely to get screened if they trust in the quality of the service and know there is a possibility for support if something goes wrong.  If we want to encourage a “culture” or “popular consciousness” of prevention, we must be prepared to transform the structural inequalities and systemic deficiencies that contribute to local devaluation of preventive health.

 

 

 

 

 

References

Alvarez E.  Prevencion de Cancer Cervicouterino en Guatemala.  Presented at: Consortium for the National Program for Cervical Cancer Prevention and Treatment; 2013 May 8; Guatemala City.

Ministerio de Salud Pública y Asistencia Social (MSPAS), Instituto Nacional de Estadística, (INE), Universidad del Valle de Guatemala (UVG), Centros para el Control y Prevención de Enfermedades (CDC), Agencia de los Estados Unidos para el Desarrollo Internacional (USAID), Agencia Sueca de Cooperación para el Desarrollo Internacional (ASDI) et al.  Guatemala City: MSPAS et al; 2003.  Available from: http://stacks.cdc.gov/view/cdc/8263

Reyes E. La Vida les Cambió después de un Papanicolaou. La Hora. 2012 Jan 3.  Available from: http://www.lahora.com.gt/index.php/nacional/guatemala/reportajes-y-entrevistas/150474-la-vida-les-cambio-despues-de-un-papanicolaou