#15 Reading a Classic
The Spirit Catches You and You Fall Down: A Hmong child, Her American Doctors, and the Collision of Two Cultures by Anne Fadiman
Lia Lee was born in central California's Merced Community Medical Center, or MCMC, in July of 1982 to mother Foua and father Nao Kao. Her parents were newly arrived Hmong immigrants from Laos. The Hmong were originally high land farmers in central China who clung to their unique language and culture after centuries of attempted assimilation and migration. An army of Hmong guerrilla fighters were recruited, trained, and armed by the CIA in the 1960s to fight against communist forces in Laos.
At 3 months old, Lia experienced her first seizure, the resulting symptoms recognized as quag dab peg, translating literally to "the spirit catches you and you fall down." In the culture of Western medicine, this is epilepsy. For the Hmong people, treatment of quag dab peg would involve shamanism and animal sacrifices to bring back a lost soul. For American doctors, treatment of epilepsy would involve a cocktail of anticonvulsant medications, antibiotics, and sedatives. The clash of cultures resulted in tragic misunderstanding on both sides with a poor result for Lia.
Anne Fadiman analyzes both perspectives—Lia's family and the community of Hmong on one side and the Merced doctors and nurses on the other. She spent years getting to know the both the family and the caregivers and treats them both with affection and compassion. Useful questions are raised but no real blame is laid on either side.
Published in 1997, The Spirit Catches You and You Fall Down is a remarkable masterpiece that feels just as significant today, more than 20 years after being published, for its commentary on cultural differences, social construction of illness, and most important of all, empathy. The 2012 edition contains an afterword by the author that updates the readers on all the characters they get to know and love in the book. She also reflects on the lessons that she learned and the feedback from readers that she received over the years.
This is a heartbreaking and beautifully written work of non-fiction that should absolutely be placed in the standard curriculum next to our anatomy and histology texts. The fundamental misunderstanding that arose between the Lee family and the doctors at the Merced Community Medical Center serve as a metaphor for every cross-cultural multi-lingual interaction experienced by nurses and physicians on a daily basis. Invariably, the instructions and intentions conveyed by the English-speaking social workers, doctors, and nurses were interpreted with the precise opposite meaning by the Hmong-speaking family.
The language and cultural barriers encountered by the family and medical staff felt insurmountable and frustrating. Near the time that the medical staff was arranging for the Lee’s to take their daughter Lia home after she suffered partial brain damage that left her in a vegetative state, Fadiman describes the agonizing reaction of the family, when asked to sign a piece of paperwork stating that the child might die after leaving the hospital. The family perceived that the physicians and nurses thought Lia should die. This violated a Hmong taboo against foretelling a death.
“When Nao Kao thought he was being forced to sign a paper that said his daughter was going to die in two hours, he did what any Hmong in an impossible corner… might consider doing: he fled. He grabbed Lia who was dressed in her funeral clothes, from her bed in the third-floor pediatric unit and started running down the stairs.” (P. 178) Security guards had to bring the two back.
The message here for physicians and nurses is clear and profound. I dare say every one of us has encountered a patient from another background or culture so different from our own that we can hardly get through to them. With much guilt and self-reflection, the following paragraph punched me right in the gut. Another of Lia’s treating physicians commented on the Attending physician’s actions as he reviewed the circumstances of Lia’s catastrophic admission seemingly one more time with status epilepticus. The diagnosis of septic shock was totally missed.
“If it had been a brand-new kid walking off the street, I guarantee you Neil would have done a septic work-up and he would have caught it. But this was Lia. No one at MCMC would have noticed anything but her seizures. Lia was her seizures.”
This hit me hard. How many times had I and perhaps every one of us reduced our patients to a diagnosis or a symptom? What signs and symptoms do we miss from this callous habit of confirmation bias? How many times has this sort of cold-hearted categorization robbed our precious patients of their humanity and the correct diagnosis?
Fadiman goes to the experts to suggest how the immense chasms in understanding between the cultures could be bridged. She includes the work of Arthur Kleinman, a psychiatrist and medical anthropologist at Harvard who chairs the department of Social Medicine at Harvard Medical School. He developed a useful set of eight questions designed to elicit a patient’s “explanatory model” in cases of cross-cultural medicine. (p. 260).
The author quotes Dr. Kleinman’s three retroactive and retrospective suggestions for the physicians caring for patients like Lia whose parents could or would not comply with giving their daughter anti-seizure medications because of a totally different belief system regarding illness and treatments.
Dr. Kleinman says, “First, get rid of the term ‘compliance.’ It’s a lousy term. It implies moral hegemony. You don’t want a command from a general, you want colloquy. Second, instead of looking at a model of coercion, look at a model of mediation. Go find a member of the Hmong community, or go find a medical anthropologist who can help you negotiate. Remember that a stance of mediation… requires compromise on both sides. Decide what’s critical and be willing to compromise on everything else. Third, you need to understand that as powerful an influence as the culture of the Hmong patient and her family is on this case, the culture of biomedicine is equally powerful. If you can’t see that your own culture has its own set of interests, emotions, and biases, how can you expect to deal successfully with someone else’s culture?” (p. 261)
So there you have it. Lia’s physicians could not release the culture and biases of Western medicine and Lia’s parents could not or would not compromise the belief system of the Hmong people. Fadiman tells the story of truly good-hearted people from all sides who did everything they could to save Lia. This book serves as a lesson: as much as cultural barriers may be a behemoth to overcome, they are never insurmountable. Little Lia got caught in the middle of this tragic story and I daresay, her story is one you will never forget.
This review first appeared in The DO magazine 12/2021.
