Daniel Palazuelos, MD writes about his experiences conducting research on attitudes towards death in Mexico.
An experience I had that best exemplifies my initial thoughts on health care and equity in the world occurred during a year that I took to conduct original research in Mexico. Previously, I had become interested in why I was seeing so many of the new Hispanic immigrants in the US choosing aggressive medical care. Be it in the ICU or on the floor with a clinically decorticate patient, I more than once saw my Hispanic patients’ families asking us never to give up hope, to try everything possible to help prevent what we as doctors felt was inevitable: death. Having been born in Mexico, though raised in a suburban outpost of Manhattan, I naively presumed that that the famed spirituality, the culture of the dead (e.g. Dia de los Muertos) of the Latin-American world would have led these patients to choose a more accepting route.
With this question in mind, I used some contacts I have through family members to sequester a space in the Social Security hospital system in Mexico City and Ciudad Guzman, Jalisco to petition a cohort of around 500 Mexican patients over the age of 18 on their ideas of health care, end-of-life care and on their personal experiences with the death of a loved one. For me, it was fascinating to be able to have this sheltered time to ask a few open-ended questions and to then just listen to what they so generously offered me. Some conversations lasted over 3 hours, some ended in tears, both theirs and mine, but almost all led me to a growing understanding of how the process of dying is a complex interaction of culture, race, class and history. One conversation in particular impressed this on me the most.
I entered the room of yet another hospitalized patient, introduced myself and began my prescribed questions. How old are you? Why are you here? How do you feel about…? Something, however, seemed strange about this situation. The patient was an 18-year-old boy with a peculiar affect and a cervical collar around his neck. His father, a middle aged man who looked as old as the sun that had deeply wrinkled his skin and as tired as the fruitless desert that he worked, stood nearby and answered all the questions in a tearful, yet dutiful fashion. Suddenly more interested in this dynamic than the questionnaire, I broke from my set interview and asked what was wrong. The father looked at his son, who now was blossoming an even stranger affect than before, and began to recount how this young man had been hospitalized in a private psychiatric hospital for his refractory schizophrenia. The bills had practically bankrupted the family, but they felt that treating his condition was more important than avoiding the poverty that they'd already assumed inevitable. The treatments were working for awhile, however only recently the patient had been found one morning in an unconscious and bloodied state on the psychiatric hospital's common room floor. Word from the nurses was that the other inmates had beaten the patient mercilessly. When the family quickly rushed to see what had happened, they were greeted with the news that their son had fractured a number of his cervical vertebrae and would need to be transferred to a medical hospital for further care. Since they had little money left over, the patient could not go to another private hospital and was instead sent to a government hospital. Upon arrival, he was told that since resources were scarce, they could provide little for the patient but a neck collar and some Paracetamol and Naproxyn. Most importantly, they could not give him any psychiatric medicines. The father was scared, not only for the physical health of his son, but more for the inevitable schizophrenic breakdown that would occur off of neuroleptics. Confused, he called the psychiatric hospital and asked what had happened, how he could be discharged so abruptly and in so much need. The psychiatrist then reportedly told him that the hospital was not responsible for the accident as no one had attacked his son, but rather his son had nodded off, bobbing his head up and down, before sleeping awkwardly in a chair, thereby breaking his own neck!
After hearing the story I instantly felt a rage rise within me. Not knowing who to believe, what to feel, having no way to confirm or disprove the facts, I stomped out into the hallway, looking for answers. I spoke to nurses, nurse managers, doctors, residents, until all the shoulder-shrugs began to make me realize that perhaps this was an anonymous and unsolvable crime, that no one would be held responsible. I began to ferment a desire for justicia unlike I had ever felt, and in classic New Yorker fashion, I was prepared to use forceful language, solid body posture, abrupt interruptions and a staunch demeanor to get my way-- or was it his way? Indeed, standing alone, fuming, I realized that this had suddenly become my crusade. Was this New York style really fair? What was the best way to comport myself? What damage could I cause? Embarrassed by my overwhelming emotions, I went back to speak to my new friends to ask them what they wanted. What would make things better? The father explained that he understood that situations in hospitals are complex and that he didn't necessarily blame anyone for the cervical fractures. Instead, he just wanted someone to help him find the neuroleptics that would keep his son connected to reality. I quieted down, took his hand in mine, and told him I would try my hardest to help.
Luckily, over the course of the next week, I was able to track down a social worker who knew someone in pharmacy who lived next to someone else who could approve the use of the neuroleptics. One of the most incredible sights of my entire trip to Mexico was that of the patient and his father coming to a meeting between the social worker, the family and a legal advisory. The patient walked into the room speaking coherently and logically, followed by his father dressed up in his cleanest shirt, his hair clean, combed and jelled. He squeezed my hand in return when the meeting was over and whispered to me "hay que luchar, hay que buscar la justicia, como me ha enseñado." And I responded, "no, eso es lo que me ha enseñado usted."
The lessons for me were many. What began as a desire to understand a culture, as expressed by individual stories and experiences, so as to better provide care for sick and dying Hispanics all over the world, soon erupted into a realization that what was truly needed was far greater. In turn, however, it wasn't until I came back to speak to the patient that I really heard what would help him most. This led to a tighter, more trustworthy relationship between me and the family and therefore a more human accomplishment over all. My research ultimately suggested that one of the reasons that Hispanics in the US choose aggressive care is because of, what I call, the immigrant effect. Coming from poor nations that often don't have financial means, they immigrate to a system where options suddenly appear unlimited. Coupling that with an intense devotion to always be there for La Familia, it is little surprise that these patients are then seen asking their physicians never to give up hope, to try everything possible. This is an oversimplification, of course, but I generalize to illustrate how I have begun to internalize the interconnection between economics, culture, race, nationalism and the practice of medicine.
As I only begin to work in international health, my intention has therefore evolved into a desire to foster real partnerships with international colleagues so as to work in conjunction with them on isolating issues that truly affect the quality of life and human rights of those living there. This will likely include conducting research that combines a sociologic and anthropologic intuition with a desire to discover ways to use both the science and industry of medicine to best serve the most people in culturally sensitive ways. I want to listen first, offer what I can and then fight for what we all, as a team of invested individuals, define as justice. But justice is not simple, neither in definition nor achievement. If done well, I envision it including patient and practitioner alike. We need to find our true global village- one based on evidence, understanding and compassion. The skills I will learn through the Brigham Global Health Residency are only more tools that will lead me to this goal, not for myself, but for my patients, for global justice. In turn, this will hopefully lead to an opportunity to address the infinitude of wrong that exists today in the world and threatens us all.
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