The role of Mayan languages in cancer care and research in Guatemala

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David Flood
David Flood, MD, MSc, is a physician with the Guatemalan NGO Wuqu' Kawoq | Maya Health Alliance and resident in Medicine-Pediatrics at the University of Minnesota. He received his medical degree from Harvard Medical School and an MSc in international health policy from the London School of Economics.
A Maya patient at a national hospital in Guatemala. Photo courtesy of Rob Tinworth and Wuqu' Kawoq.

A Maya patient at a national hospital in Guatemala. Photo courtesy of Rob Tinworth.

One day in January, I helped a Guatemalan staff physician see patients at a Wuqu’ Kawoq clinical site in Guatemala. Wuqu’ Kawoq is a non-governmental organization that provides health care and development services for rural Maya communities in Guatemala.

A young indigenous woman presented to us with a chief complaint of mild stomach pain. However, as we took the woman’s history, we noticed that her young son, Alex, had an enlarged left eye. After attending to his mother, we also asked to evaluate Alex. Three years old, he had never been seen by a doctor, and his mother was not planning on having him seen that day by our physician, either. Alex was just there by casualidad (fortune or luck).

Alex’s exam was very worrisome, and we immediately referred him to a national hospital for an ophthalmologic examination where he was diagnosed with retinoblastoma, the most common pediatric eye cancer. Retinoblastomas are usually fatal if untreated, but, with early diagnosis and management, they have a very good prognosis. Alex was subsequently referred to the country’s major pediatric cancer hospital,  the Unidad Nacional de Oncología Pediátrica (UNOP), in Guatemala City.

Last week,  in the context of this case, a very relevant study came out of the journal Cancer Letters. Entitled “Increased incidence and disparity of diagnosis of retinoblastoma patients in Guatemala,” this paper reviewed a case series of over 300 Guatemalan children with retinoblastomas using data drawn from medical records at UNOP from 2000-2012.

The study concludes that the estimated incidence of retinoblastomas in the Guatemalan capital department is 7.0 cases/million children, which is slightly higher than in the U.S. Additionally, the study shows that indigenous children with retinoblastoma are less likely to access care at the pediatric cancer hospital, more likely to present later in the course of disease, and more likely to die from their cancer.

Apart from the study’s specific relevance to our pediatric patient, this paper is more generalizably relevant in two ways.

First, this research is valuable in helping to further understand the burden of disease in Guatemala and the problem of access for Maya indigenous populations. In general, there are a dearth of prevalence and incidence data for many diseases within Maya populations. From the perspective of a primary care organization that manages cancer cases, it is useful to know that retinoblastomas may be more common in Guatemala than in the U.S. From the perspective of an organization that is also pro-Maya, it is useful to have more good data on the disparities in cancer treatment access between non-indigenous and indigenous patients.

Second, although this study provides data that are helpful for indigenous health advocacy, it also is a subtle example of the linguistic prejudice that permeates Guatemalan medicine. The paper makes the following claim:

Patients (with parental consent for minors) were consented and enrolled by trained investigators in small groups. Nearly all indigenous parents of patients speak and understand Spanish, and Spanish–Mayan interpreters are available when required (emphasis mine).

I find it very difficult to believe that “nearly all” of the 102 self-identified indigenous parents could speak and understand Spanish, even when considering the cohort is self-selected based on ability to access a national hospital. At least 30% of indigenous people do not speak Spanish, and such figures from official survey data are frequently contested as underestimates. Anecdotally, our organization has sent multiple patients to UNOP whose parents speak Mayan languages and lack Spanish-language skills.

Furthermore, language ability does not equal language preference. Indigenous patients may “speak and understand Spanish” thus not “requiring” interpreters. Nevertheless, the same patients often express strong preference for their Mayan language if asked in a culturally and linguistically appropriate manner.

Photo by Rob Tinworth.

Instituto de Cancerología (INCAN), Guatemala’s national adult cancer hospital, Guatemala City; photo by Rob Tinworth.

According to Anita Chary, who has conducted extensive anthropologic fieldwork in Guatemala’s hospitals, UNOP is one of the only national hospitals that employs interpreters. She points out many reasons hospitals eschew or underutilize language and cultural brokers: assumptions on the part of non-indigenous staff about Spanish fluency, asymmetries in power between providers and indigenous patients, and budget constraints.

I do not mean to make a mountain out of a molehill in this post. I am critiquing one sentence in an otherwise useful study. However, language matters. Linguistic discrimination is one reason that, in Wuqu’ Kawoq’s experience, less than one in four adult indigenous Guatemalans ever returns to the national cancer hospital after an initial intake consultation.

Let me return to Alex, the three-year-old boy with retinoblastoma. We accompanied him to UNOP for several rounds of evaluations and examinations. As he had presented late like many other indigenous children with retinoblastoma, Alex needed surgery to remove his entire left eye. Before the surgery could be carried out, Alex’s family suddenly decided that they would no longer seek treatment for his cancer. Exactly why they made this decision is unclear, but it seems to have had something to do with a communication difficulty between doctors and the indigenous family, who speak the Mayan language Kaqchikel in their home.

Thankfully, our indigenous case worker was able to bridge the communication chasm, and, after a one-month delay, the family consented to Alex’s treatment. His surgery was then carried out successfully. Unfortunately, the pathology results showed that the tumor had invaded Alex’s optic nerve, so he will now need chemotherapy and radiation. We are still hopeful for his ultimate cure, but the outcome is uncertain.

Guatemala’s position in the discipline of global health is relatively unique as the country already possesses capable tertiary care services. Global health here is less about constructing a new health system, and more about accompaniment within an existing health system that limits access.

In this context, UNOP is a terrific ally that delivers high-quality cancer treatment, publishes useful research, complements its free care with an impressive support program, and offers interpretive services. However, even with these advantages over other national hospitals in Guatemala, patients and families still may be unable to advocate for their needs due to linguistic isses.

In short, Alex’s case shows why we must not forget the importance of language in carrying out truly sensitive cancer care and research in Guatemala.