Recently I read a very interesting book about a refugee child who had epilepsy, and the way in which her parents and a hospital in California clashed because of cultural differences. As an EMT I was particularly struck by the similarities between that part of my life and the doctors of Merced County Hospital. Anyone in healthcare has the true desire to help patients, but it becomes extremely exasperating when we can’t because of a misunderstanding between you and the patient, or the patient’s family. This book provided an excellent look at the view point of these patients and their doctors. The reader came away questioning what either side could have done to prevent the situation that passed, which resulted in irreparable brain damage in a young child. Even if you didn’t read the book, the following is an understandable dissection of what when wrong and what can be done in the future. I also attempt to aid you in gaining empathy for both the doctors and the family.
Anne Fadiman’s “The Spirit Catches You and You Fall Down,” is the story of a Hmong family’s struggle to navigate the waters of the American health system, and the likewise struggle of the American health system to navigate Hmong culture. We learn that Lia has epilepsy, but for some time the staff at Merced County Hospital were unaware of the nature of her condition. When she was finally diagnosed correctly, she had experienced quite a few devastating seizures. In addition, her family and the medical staff had some serious barriers that were seemingly impossible to get over. The process was long and drawn out, leading to unsurpassable mistrust, in addition to irreparable brain damage for Lia. There were quite a few missed opportunities for everyone in the case, but the biggest was a general misunderstanding of the most effective way to speak to people from a culture different than your own. This goes for the people involved in Lia’s case, as well as Lia’s family. I’m going to attempt to explain the point of view from each side to see if it was even possible to reach a mutual understanding.
America is a country of immigrants; it’s a characteristic that makes our country great. There is an enormous downside though. Whether immigrants, refugees, or illegal aliens, more often than not new arrivals in the US have not taken the time to learn English or explore American customs. We expect that they’ll learn eventually, but this creates a problem for medical emergencies. It is very difficult to treat someone with a language barrier. This can be surpassed with a translator; but for small hospitals like Merced County there isn’t always one available. Then there’s the cultural barrier – there’s no such thing as a cultural translator, at least in hospitals. If your patient has an inherent mistrust in you simply because they come from a different culture, and flat out disregards your medical advice, then not only does the patient suffer, but as a doctor you become frustrated. We saw that Lia’s case proceeded in this way.
The Hmong are a people that are inherently stubborn. In attempts to take over their land, to move them to another location, or to disband their culture have all ended miserably. Hmong people would rather fight to the death than concede to anyone. They are also mistrustful of the American medical system because of horror stories that have been told to them about doctors. To accept an American doctor’s way of healing is to essentially go against the Hmong way of life. This is due to a cultural difference, but also a lack of understanding of the physiology of the human body. The language is highly metaphorical; translations are often difficult to understand if you don’t know the stories of the Hmong people. For instance, the closest term in Hmong for “epilepsy” is “the spirit catches you and you fall down.” So trying to translate medical terminology to a Hmong patient is a losing battle when culture is not taken into account.
Lia’s doctors had all of these factors working against them. For a serious case such as Lia’s, what was more prudent – to attempt to take Lia’s family under their wing and teach them about what was happening to Lia, or to try to fix Lia as best they could? An optimistic person would say that in cases in which the patient and the patient’s family have many of the above barriers working against them, the hospital (the doctors, the nurses, the social workers) have a responsibility to teach them about American medicine. An optimistic person would also say that Lia’s case is rare; unfortunately it is not. In places such as Merced, CA where a recent influx of immigrants had taken place, it is expected that there will be a cultural push back from that community, and people having true medical emergencies may suffer as a result.
In reading Fadiman’s book, I got the impression that the Hmong families that sought asylum in America had the expectation that they had the ability to live life just as they did in Laos. But when they were told that no, America has a completely different culture and it was either taboo or illegal to perform most of their rituals, the Hmong families simply ignored that fact. This is a missed opportunity. A place that will be host to a new population of immigrants should establish an immersion center of sorts; a place that will give new comers the vital information about American culture. According to Fadiman, some attempts at this were made, but it was in no way geared toward the Hmong way of thinking. I believe if Hmong people new to America were obligated to go through an immersion process taught by Hmong people who knew America well, then there would be much less mistrust. The difference though would be the way in which American culture was explained. Because the Hmong language is highly metaphorical, the immersion process must also be highly metaphorical. Using Hmong stories to teach American culture has the potential to be much more effective than hoping they will understand concepts Americans take for granted. For instance, when Lia was having her blood drawn her parents, Foua and Nao Kao, were worried that she would lose all her blood because they had no idea that blood regenerates itself. To simply tell them, “no, she won’t lose all her blood, don’t worry” does nothing. You must explain in a way they will understand – use the stories and legends of the Hmong culture. Not only will this allow you to treat the patient more effectively, but it will show the family you have a respect for them. Respect is key in convincing someone to listen to you and follow your advice. But at the time Lia was sick (which was in the 1980’s) there was no way to do this.
So, your community has had an influx of people coming from a culture that is so vastly different from American culture, and it’s almost impossible to gain mutual understanding. Now, say you’re a doctor in an emergency room with a very sick child who needs immediate help. What are you going to do? You’re going to fix her as best as you can, because you don’t have an alternative. You don’t have time to teach the family about American medicine in a way they can understand. What’s worse is that either there is no translator available, or the translation is ineffective. The double edged sword of emergency medicine is pointed in a way such that the doctor almost never wins. Either you help the child and alienate the family; or you try to help the family to understand and waste valuable time in helping the child, which ends up making her sicker and you alienate the family anyway. You want to help, but the patient’s family won’t listen to you.
Now, imagine yourself as a new immigrant in Laos and your child is sick. You take her to txiv neeb (local healer) and you are told your child is sick because she lost her soul because a dab (an evil spirit) took it. You are told you must sacrifice an animal and rub hot coins all over her body to cure her. As an American, what are you going to do? You have no idea what a dab is, you don’t want to purposefully burn your child, and you are certainly not going to kill an animal. You don’t understand how a “lost soul” could cause an illness, and how hot coins and animal sacrifice could help your child. You’re confused because there were no tests run, no samples taken, no prescriptions given. The txiv neeb didn’t even take her temperature. You go home and you give her chicken soup, you put her under a warm blanket, and you give her cold medicine. She gets better because of what you did, not because of a consultation with a txiv neeb. In fact, because the txiv neeb was so unhelpful, you’re never going to go back because you find him incapable of addressing the needs of your child. What’s worse, everyone around you – including the txiv neeb – is offended that you ignored what they thought was sound medical advice. They don’t want to deal with you and your sick child; they even think you’re endangering your child by ignoring them. They think you’re an ignorant foreigner, and they wish you’d just go home. You write home to let your family know what’s been going on in your new home; the news isn’t good. “They don’t like Americans here,” you say. “The doctors wanted me to purposefully burn my daughter, and kill animals. They don’t respect me or my daughter, and they are angry at me for giving her cold medicine.” Invert this situation and it’s exactly how Foua and Nao Kao felt at Merced when Lia got sick.
A general sense of empathy – on both sides – was lacking in Lia’s case. The hospital staff, and Foua and Nao Kao could not appreciate how each other’s lives are run because they had no common ground. As I said before, we should teach new immigrants about American culture through their own language and customs. They need to understand that hospitals and doctors aim to help them, but to benefit from the help they must actively participate in the process. Translators need to be more than verbal subtitles of a situation; they need to balance the very Western language of scientific medicine with the metaphorical bend to Hmong culture. But how can the staff of a hospital be expected to know the ins and outs of every possible culture that could require their assistance? The obvious answer is to staff translators round the clock who know the language and are familiar to the customs – easier said than done.
It is true that medical personnel and social workers are made aware of the “stranger” customs different cultures have. An example is the Eastern tradition of coining – a multitude of circular burns on a child can be alarming to a doctor. It can indicate child abuse if the doctor is not familiar with the practice. To avoid such sticky situations, knowledge of practices such as coining is integrated into medical curriculum. Neil (Lia’s pediatrician) could have avoided the sticky situation of reporting Foua and Nao Kao to Child Services by trying to understand why they weren’t being compliant with medication, and exhausting all resources to help them. However, like Foua and Nao Kao were alienated, Neil was also alienated because his culture was being ignored.
Getting intimately familiar with so many different kinds of cultures is just too much to learn, especially for doctors who need to know so much already. There is no easy answer; it seems like every solution would take too long to implement in emergencies like the ones Lia experienced. In cases of the Hmongs, in which their arrival in Merced was rather unexpected, it becomes even more difficult. Solutions become ways to clean up the mess made by a culture clash as opposed to preventing one.
With the missed opportunity to learn how to talk to a person of a vastly different culture than your own while still remaining respectful, the question then becomes how can you prevent a mess such as Lia’s? Is there a middle ground that can be reached before a catastrophic medical emergency? If there is no integration process in place, as described above, how can a doctor have a better chance of helping a child like Lia? As cliché as it sounds, patience and respect are the most effective tools you have to breach the culture gap. These are traits that exist in all cultures; so if you show that you are calm, willing to help, and listen to the unique needs of a patient and their family, then you’re automatically on the right track. This absolutely is no easy task, but it will prevent future headaches and make cleaning up a cultural clash much easier.
It seems as if the missed opportunity, then, was ultimately a lack of patience and respect shown by the people of the Merced County Hospital. For a situation that could escalate into an allegory for “David and Goliath,” the larger entity needs to take it upon themselves to cater to the minority. In this case, Merced County Hospital needed to work harder than they did to accommodate Foua, Nao Kao, and Lia. When the hospital staff began to show Foua and Nao Kao that they were a nuisance, Foua and Nao Kao felt even more helpless. Good healthcare must integrate good patient relations no matter what. Even if a patient, or their family, is exasperating, they still require help. Lia’s case absolutely could have gone differently if the hospital staff kept that in mind.
Fadiman, Anne. The Spirit Catches You and You Fall Down. New York: Farrar, Straus, and Giroux, 1997.
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