The Limits of Palliative Cancer Care in 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.

As cancer rates increase around the world, so does the need for palliative care in low- and middle-income countries.  The world’s poorest cancer patients tend to come to medical attention at advanced stages, when pain management represents the only therapeutic option.  The WHO advocates the development of palliative care programs in poor countries, describing that such programs can be established relatively inexpensively. However, even if operational costs are kept low, structural inequalities pose a formidable challenge to the success of these programs.  Palliative care practitioners must often find creative solutions to negotiate infrastructural inadequacies, all the while attentive to local cultural understandings of cancer, pain, and therapeutic utility.

 

INCAN, Guatemala's only hospital equipped to provide cancer care for public-sector patients with solid tumors.  Photo by Rob Tinworth.

INCAN, Guatemala’s only hospital equipped to provide cancer care for public-sector patients with solid tumors. Photo by Rob Tinworth.

 

Palliative care in Guatemala is a case in point.  In Guatemala, which has a population of about 15 million, there is only one oncology hospital that serves the public.  The hospital, INCAN [el Instituto de Cancerología] is located in the nation’s capital, Guatemala City, and getting there alone is a battle for much of the country’s majority rural population.  INCAN is a semi-public/semi-private entity: it receives some funding from the Ministry of Health for patient care, but the majority of hospital support comes from the private sector, due to the fundraising efforts of the Liga Nacional Contra el Cancer, the NGO that founded the hospital in the 1950s.  This mixed-sector administrative set-up requires that patients pay for their consultations, laboratory exams, and treatment. Government funding is used to offer discounts to indigent patients referred from public-sector healthcare facilities, but this financial support cannot be applied to cover the expense of chemotherapy.  This is often the costliest component of treatment and ranges from several hundred to one thousand dollars per cycle—a prohibitive price for members of the working class.  As such, economic barriers to care are the primary reason that patients abandon treatment.  It is not uncommon for cancer patients to show up to INCAN years after receiving an initial diagnosis and/or beginning, but not finishing, their treatment due to lack of funds; by the time they return, these patients’ cancers have typically advanced beyond the point of cure.

 

A patient waits at INCAN to begin her fourth round of chemotherapy.  Photo by Rob Tinworth.

A patient waits at INCAN to begin her fourth round of chemotherapy. Photo by Rob Tinworth.

 

Advanced cancer patients end up as the charges of INCAN’s palliative care unit, which, much to the surprise of many of my colleagues in the United States, is quite sophisticated.  Clinical consultations are conducted by anesthesiologists and psychiatrists, several of whom have completed pain management fellowships abroad.  Determining patients’ Karnofsky scores, eliciting pain ratings with characteristic scales of smiling and frowning faces, and adjusting regimens of opioids and anti-emetics are the daily orders of business.  Oncological psychologists with graduate-level training offer counseling and emotional support to patients and their family members, clarifying doubts about prognoses and guiding people through existential crises.

 

Palliative care providers must improvise.  For example, after an initial visit, patients may stop attending appointments to avoid the challenges of traveling while in pain or bedridden, sending family members in their stead.  In these cases, clinicians conduct proxy interviews to evaluate experiences of pain and patients’ progress towards accepting a difficult prognosis. Medication regimens of opioids, rescue doses, and drugs to counteract the side-effects of the former also prove complicated in a context in which the majority of patients are illiterate. Here, providers use diagrams and involve family members to maximize understanding of prescription instructions.  Palliative care providers must also attempt to retain patients who decide to access non-biomedical systems, which abound in Guatemala. The psychologists gently encourage patients to stick with their INCAN medications and counseling sessions as they seek out natural remedies, ethnomedical practitioners, or faith-healers to deal with pain or as last-ditch efforts for a cure.

 

In the best of cases, patients achieve pain control and spiritual understanding of their situations. While conducting research at INCAN over the last few years, I have witnessed many palliative care patients make statements such as, “I’ve accepted what it is that I have,” “I’m ready now for God to take me,” and “I’m tired all the time, but at least I don’t have the pain anymore.”  However, structural factors more commonly limit patients’ ability to achieve these outcomes.  Obvious among these are the barriers that constrain access to any centralized health facility with service charges.  Poverty limits patients’ ability to pay for bus fare to reach the hospital, the nominal consultation fee of 40 quetzales (about five US dollars, two-thirds of the daily minimum wage), and the repertoire of analgesics and stool softeners available for purchase at the hospital pharmacy. Urban patients sometimes resort to illegally purchasing morphine or heroin at lower prices in the capital’s drug trade zones, while many patients without the means simply go without.

 

In addition to dilemmas of finance, transportation from rural areas to INCAN, when one is confined to a wheelchair or a bed, becomes impossible and is a significant reason for patients to drop out of palliative care. Monolingual indigenous language speakers are also out of luck: all clinical services at INCAN are delivered in Spanish and there is no funding for interpreters. As one Kaqchikel Maya woman recounted to me, after her mother died from cancer in great pain: “They sent us to a place called palliative care.  Who knows what that is?  We didn’t understand what they were telling us.  We stopped going.”

 

INCAN’s lack of resources also contributes to losing palliative care patients to follow up.  Due to budget constraints, all outpatient clinics of INCAN—including palliative care—operate only during the morning. Most INCAN physicians work in private practices during the afternoon, where they earn the majority of their wages, as the salaries they make at INCAN are comparably much lower.  Rather than attempting to make a living through their work at INCAN, physicians tend to see it as a training opportunity, an act of social service, or a way to establish oneself as a reputable cancer physician. As such, the palliative care service attends patients only from 8:30 AM to 12 PM each day. Furthermore, because physicians must attend to so many patients in such a short time, not all patients who are eligible for palliative care end up being referred.

 

Fatigue is common as patients wait for appointments and wade through bureaucracy at each of multiple visits to INCAN.  Photo by Rob Tinworth.

Fatigue is common as patients wait for appointments and wade through bureaucracy at each of multiple visits to INCAN. Photo by Rob Tinworth.

 

Consider the story of Herlinda, a 60-year-old monolingual Kaqchikel speaker who grew up on a coastal coffee plantation. After enduring vaginal hemorrhage for several months, Herlinda made the four-hour journey to INCAN against all odds. Her children, all coffee plantation laborers with minimal wages from seasonal harvesting (~$5 US/day), pooled together their limited savings to send their widowed mother to the hospital.  After a series of trips and exams, Herlinda was diagnosed with very advanced cervical cancer, and palliative chemotherapy and radiation therapy were recommended. However, Herlinda was not told that she had cancer, nor was she told that her therapy was not curative.  These types of communication failures are unfortunately common practices in overburdened, under-resourced hospitals with no translators, and additionally align with a local biomedical culture in which revealing a difficult prognosis is thought to take away hope and scare a patient away from accessing further therapy.  Herlinda was not offered palliative care services; language barriers inhibited discussion of her pain.  After a few visits, Herlinda grew so frustrated at the amount of money she had spent at INCAN without feeling relief that she burned all of her radiograph plaques and exam papers and vowed not to return to the hospital.  When her pain became unbearable, months later, she reached out to a network of health promoters.  These promoters created a pain medication regimen for her with the assistance of foreign volunteer physicians.   Herlinda now knows that she has cancer and accepts that she is dying.  “At first, they didn’t tell me [that I had cancer] because they say that some people can bear to hear it, and others cannot. Now, I know, and I endured it,” she said.  Now that her pain is relatively well-controlled, she is trying to make the most of her remaining days, participating in community events and spending time with her children and grandchildren.

 

Even when patients are offered palliative care at INCAN, limited service hours and confusion about what the service entails can have tragic consequences.  I met Reina, a 33-year-old ladina (mixed) woman with stage IV cervical cancer, through a faith-based NGO that had supported her through several rounds of chemotherapy and radiation therapy at INCAN.  After physicians determined that her cancer was unresponsive to therapy, she was referred to the palliative care unit, where she was prescribed a regimen of pain medications. “They prescribed me morphine, and I was taking it, but I stopped buying it, I don’t take it much anymore,” she told me in an interview.  Reina is a single mother with several young children, and she receives no economic support from her husband who left her years ago. Money is tight, and she and her children recently moved in with a relative to make ends meet.  On multiple occasions, Reina had acute pain crises and made the four-hour journey from her hometown to the capital, desperately seeking some sort of pain relief. Sometimes, palliative care physicians were able to squeeze her in to the schedule and administer morphine on the spot.  In other instances, Reina showed up on weekends or in the afternoon hoping to be admitted, but was sent away as the hospital is technically closed to new and non-admitted patients at those times.

 

“I figured they didn’t want to attend to me anymore,” Reina told me, explaining how she interpreted these events as a denial of care.  Henceforth, she began to seek out alternative medical practitioners and private doctors for pain control, encounters that resulted in costly surgeries and renewed recommendations for chemotherapy in the private sector. “I almost can’t bear the pain.  I feel that the surgery that they [the private doctors] did hurt me,” she related, stating that she felt more pain now than she had before the operation. “I’m not sure I can endure more chemotherapy now.”

 

Herlinda’s and Reina’s stories speak to the need for high quality palliative care services for the world’s poor.  INCAN has taken laudable steps in this direction, but structural barriers to care and the constrained hospital system restrict the accessibility of pain management to the most vulnerable members of society. Palliative care providers will continue to improvise in this setting of great scarcity, but there are limits to creativity in the clinic.

 

 

 

 

Photos by Rob Tinworth and posted with permission.

 

The above draws on thirteen months of ethnographic research at INCAN and in NGO cancer treatment programs in Guatemala, conducted from June 2011 to present.  Herlinda’s and Reina’s stories are shared with their permission; all names are pseudonyms.