From the Field: “I’d rather die at home, than go to the hospital.”

Indigenous Guatemalans routinely face extreme discrimination in the public health care system. One of our doctors shares her experience with a patient, who unfortunately made the not-so-uncommon choice to refuse hospitalization.

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Kirsten with our two nurses, Sandy (right) and Carol (left).

Dr. Kirsten Austad delivers clinical care, conducts staff training, and carries out health services research with Maya Health Alliance | Wuqu’ Kawoq. She received her MD degree in 2013 from Harvard Medical School and is currently a resident in the family medicine program at Boston Medical Center. While she has previously focused her research on conflict of interest in medical education, Kirsten’s current interests include access to comprehensive family planning and strategies to make childbirth safer in low-resource settings. She has also worked in West Africa, Dominican Republic, Chile, and Chiapas, Mexico. She speaks Spanish and is learning Kaqchikel.

Most of the time I prefer my role as a doctor in Guatemala to my residency. In Boston I am always under time pressure, I spend more time documenting my encounter with the patient than actually caring for her, and I’m often limited in what I can provide to patients by insurance issues or bureaucracy. In Guatemala I have more freedom to practice medicine. But not every day as a doctor can be happy, so today I write about my sadness at losing Ana. If she had been one of my patients in Boston she would be alive right now. Instead, she is my first maternal death.  

A Kaqchikel-speaking Maya woman, Ana came to us in May during the first trimester of her pregnancy. She had a stomach infection that made it difficult to eat, but with our treatment she slowly gained weight and was doing well, until in the 7th month of her pregnancy she developed preeclampsia—a high blood pressure disease that can be potentially fatal for the patient and baby. Despite our best efforts both Ana and her baby died from complications of preeclampsia.  

Most women in Guatemala deliver their babies at home with traditional birth attendants. These midwives are often the only available health providers in rural indigenous areas, and so we at Maya Health Alliance support this practice and train them to make these births as safe as possible. Too often the medical profession incorrectly conceives of pregnancy and childbirth as “sickness” akin to diabetes or cancer. While this over-medicalization can lead to negative consequences for mom and baby, there are high risk-cases in which medical intervention is necessary. When Ana developed preeclampsia—a disease of high blood pressure that arises only during pregnancy, leading to neonatal problems such as poor growth and stillbirth, and maternal ramifications including seizures and even death—she became one of these high-risk cases. She would need to have her labor induced well before her due date to prevent these complications that often develop if we wait for the “normal” onset of labor.

Ana understood this because her last pregnancy had also been complicated by preeclampsia (luckily both her and her daughter were fine). When we asked her to stay in a hotel close to our main office in Tecpán so we could closely monitor her blood pressure, she was amazingly compliant. However when it became necessary to take her to the hospital to induce delivery, she refused. She said no because she was convinced if she went there she would die there.

One of our patients waiting to be seen at one of the public hospitals.

Despite multiple conversations and home visits by our team and her traditional birth attendant, Ana stayed at home. She refused until a few nights later when she became very ill and her husband brought her to one of the national hospitals where both she and her baby would pass away. While her prediction of dying there likely came true because she waited so long to present for care, to say this outcome was due to “patient noncompliance” would be tragic.  

Her resistance to going to the hospital was not crazy, nor was her decision a rare one. I have accompanied patients to the public hospitals in Guatemala City, to try and uphold their universal right to health care as promised by the Guatemalan Constitution. Despite being an MD from Harvard Medical School and with white privilege, I often cannot successfully navigate the system for our patients. The list of reasons for Ana NOT to go to the hospital is extensive: transportation to the hospital is difficult and costly, her three kids need her at home, the doctors won’t speak her language, she could be turned away at the front door regardless of her medical need, if admitted she would not have any control over what happens to her or her baby, etc. She and other indigenous Guatemalans suffer indignities small and large at the hospitals: being asked repeatedly to buy sanitary pads for herself though she does not have the money, receiving snide comments from nurses that she should get a tubal ligation because she has “too many kids,” being told she should have come to the hospital sooner, enduring hunger because relatives cannot endure to trip to the capital to bring her food. I could keep going but it pains me to think about how, while I sit in Boston writing this post, at least one of Maya Health Alliance’s patients are living through these indignities in the government hospitals. While our work is to prevent or mitigate these factors that lead our patients to not seek care, we are not always 100% successful. Even the possibility of these events is often a barrier for our patients.

And this is the appalling reality of health care in Guatemala: the Maya people often prefer to die at home than receive life-saving care in these government hospitals. What is the point of saving a life if it creates a life that is not worth living? The true cause of Ana and her baby’s deaths is the failure of the public health system to serve the indigenous citizens of Guatemala.

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A typical home, similar to Ana’s, in rural Guatemala.

I will always remember standing in the dirt road to Ana’s house trying to convince her to go to the hospital. Her 4-year-old daughter standing by her side, listening intently, let out a brief cry when I said it would be necessary to stay in the hospital in Guatemala City for at least a few days. Ana hugged her and explained that when she was in the hotel for close monitoring over the weekend, her daughter cried at home, begging to see her mother. When I finally processed the news of Ana’s death, my first cohesive thought was how horrible it would be for the father to return home. In addition to his own emotional burden he now had the task of explaining to his 4-year-old and the other two children that both their sibling and mother did not survive their trip to the public hospital. These are the experiences not captured in aggregate statistics of improvement in maternal mortality rates over the past 10 years.

A last thought- When I look back on all the things we tried to do for Ana, something odd comes to the forefront of my mind. While she was staying in the hotel in Tecpán I visited her multiple times a day. She was clearly not comfortable in this hotel and would have preferred to be home. When I asked her why she wasn’t drinking water as we had stressed (to treat her dehydration from nausea and diarrhea), she explained that at home she only drinks hot water, which she could not get in the hotel. This is likely because the water in her village in not potable, and so she must boil water to prevent contracting a parasitic disease. I remember being a little annoyed at the time, because I was overloaded with work and just wanted to go back to the office and starting checking things off of my to-do list. But in the spirit of trying to make her more comfortable in the setting we told her was necessary for her and her baby to stay safe, I went to multiple stores in Tecpán before I found a large thermos. I went to the office to boil water and returned an hour later with the hot water. The patient smiled as I handed it to her, the first smile I had seen from her.

Bringing patients something to drink is something I do frequently on our inpatient service in Boston. When visiting patients on rounds they often see any contact with hospital staff as the only chances to ask for the typical human privileges that we take away when we mandate hospital stays even in the U.S. These include the freedom to eat, drink, and use the bathroom without pushing your call bell 3 times or waiting 15 minutes for an aid to be free.  And when this happens on rounds my brain screams “That’s not my job!  Seeing the other 20 patients on my service is my job!” But when I am my best self, I take 2 minutes and go fill up a water jug for my patient. I think these little gestures of caring are important. They acknowledge that patients sacrifice autonomy and comfort to follow my medical recommendations, and I should compensate by making that sacrifice as minimal as possible. All I know is the day Ana asked me for water I’m glad I was my best self. If it was one of the days I was overtired, or dwelling on the small sacrifices I make to be a doctor, I could have easily told her to tough it out and drink the room temperature bottled water. I would now not only have to deal with her death, but also that small indignity I caused. It sounds moronic but every time I think about her death I think “at least I brought her water.”

It’s funny how the tables turn, and what I thought was an act of kindness to my patient actually ends up being my only comfort.