“Is it usually like this?”
“Oh yes. This is a normal day,” Merida explained as we stood pressed up against the wall at Roosevelt Hospital waiting for her patient to have blood work done. Barely six in the morning and a line of patients extended down the hallway.
“Permiso, permiso,” yelled men in white scrubs pushing a patient prepped for surgery through the sea of people.
As the director for complex cases, Merida acts as a bureaucratic navigator for patients requiring treatment and care in the Capital. Cases range from people going in for cataracts surgery to those needing continual cancer treatment.
“If a patient does not understand what the doctor said, I explain it to them again. Some of the doctors are understanding, but some will only explain once. Or if a patient needs paperwork done, I run to do that” Merida shared.
Having dropped off the first patient for blood work, Merida and I strided our way along the forested path from Roosevelt to INCAN (semi-private cancer hospital) to meet with another patient awaiting her colposcopy results. Since making weekly visits to these hospitals is part of the job, Merida is an expert at navigating through the labyrinth of cars, people and vendors that extend between Roosevelt and INCAN.
“Most of the guards don’t give me trouble anymore. However, they haven’t let me accompany patients before when I was wearing a corte. There is still discrimination against indigenous people and indigenous dress here at hospitals in Guatemala,” Merida commented after we passed a security guard at the entrance of INCAN.
Similar to Roosevelt, INCAN is swarming with people – patients, family members, security, and medical staff. With overcrowded waiting rooms, lines extend beyond the actual clinic facility. Some patients and family members remain curled up, sleeping on the outside steps waiting for their appointment.
After scanning the crowd, Merida spotted her patient. The three of us now weaved our way through the masses and dashed down winding hallways. Barely having caught my breath, we were called into the doctor’s office.
“I have good news, your results were negative. We will schedule a pap smear for next year and I will prescribe this medication for you to take over the next couple of weeks,” the doctor said as he continued to explain the procedure to take the medication.
Hardly out the door, Merida broke out into a smile and mini celebratory dance.
“This is great news. Did you understand all of the doctor’s instructions?,” Merida asked as she embraced her patient.
“Yes, yes. Thank you,” Merida’s patient expressed as we made our way back to the INCAN entrance to find her family.
“I live for these cases. They make me so happy. It is always good news when a patient no longer needs me,” Merida shared on our brisk walk headed again towards Roosevelt.
Unfortunately, as I was soon to learn, not all cases are like that. Not all cases are that simple or end happily. They are after all complex cases.
Back at Roosevelt, we met up again with the patient who had finished her blood work. We waited with her now to be seen by the doctor. As a terminal breast cancer patient with metastasis to the lungs, she was waiting for another round of chemotherapy.
“Chemo has not been helping. It is very sad. She comes from very far and came to our organization already like this,” Merida lamented as the two of us waited in line and her patient rested on a nearby bench.
With the doctor’s confirmation that chemo was doing little to stop the growth, the recommendation was to be transferred to INCAN to begin radiation therapy. Just on a bureaucratic level, however, this is not an easy feat. This process requires another set of paperwork to be filed and a series of photocopies to be completed in order to transfer everything appropriately. Only then can treatment commence.
“They (hospital bureaucracy) makes it impossible for patients to receive the care they deserve. There is so much paperwork required and for what?,” Merida frustratingly remarked as we marched yet again to INCAN to speak about the transfer of paperwork.
Merida is so right. What about the patients that cannot communicate or do not have someone to communicate for them in Spanish? What about the patients without the financial resources to pay for transportation on a regular basis to receive treatment? What about patients that lack the emotional support to overcome barriers of racism in the hospitals? Although I have only been in Guatemala for a few weeks, I know that complex care navigators like Merida and many others at Maya Health Alliance | Wuqu’ Kawoq are the hidden superheroes working to break down the inequality that still exists when it comes to accessing health care. They are the superheroes battling against bureaucracy and discrimination to ensure that their patients receive the care they need, but more importantly deserve.
Complex Care Fellow