The DO Book Club, December 2020: The Spirit Catches You and You Fall Down

Welcome back to The DO Book Club!

For December, Joan Naidorf, DO, read The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures by Anne Fadiman. Dr. Naidorf is board-certified in emergency medicine and has practiced at community and military hospitals for over 25 years in Alexandria, Virginia.

If you’ve read this one, please share your thoughts in the comments below. And if you’d like to write a book review for a future month, please email Andy Brown at abrown@osteopathic.org.

Plot summary

Lia Lee was born in central California’s Merced Community Medical Center (MCMC) in July 1982. 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.

At three months old, Lia experienced her first seizure, with the resulting symptoms recognized by her family 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. This clash of cultures resulted in tragic misunderstanding on both sides with a poor result for Lia, who lived in a vegetative state until her death at the age of 30 in 2012.

Anne Fadiman spent years getting to know Lia’s family, the Hmong community, and the Merced doctors and nurses, analyzing both perspectives and treating them both with affection and compassion. Useful questions are raised, but no real blame is laid on either side.

The language and cultural barriers between the two sides feel insurmountable and frustrating. 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.

A prime example is when the medical staff arranges for the Lees to take their daughter home following partial brain damage that had left her in a vegetative state. When Lia’s family is asked to sign a piece of paperwork stating that the child might die after leaving the hospital, they misinterpret it to mean the medical staff believe Lia should die.

This violated a Hmong taboo against foretelling death and led to a tense scene in which Lai’s father attempted, unsuccessfully, to quickly flee with his daughter.

This remarkable book from 1997 feels just as significant today for its commentary on cultural differences, the 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 book’s characters. She also reflects on the lessons she learned and the feedback from readers she received over the years.

Interesting tidbits for DOs

The message here for osteopathic physicians is clear and profound. Most of us have 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.

One of Lia’s treating physicians commented on the attending physician’s actions as he reviewed the circumstances of Lia’s catastrophic admission that was assumed to be 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” (p. 256).

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?

Notable quote

Fadiman goes to the experts, like Arthur Kleinman, MD, a psychiatrist and medical anthropologist at Harvard, to suggest how the immense chasms in understanding between the cultures could be bridged.

Dr. Kleinman has 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.

“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)

Takeaways

This is a heartbreaking and beautifully written work of nonfiction that should absolutely be included in the standard curriculum next to our anatomy and histology texts. The misunderstanding that arose between the Lee family and the doctors at MCMC is a metaphor for every cross-cultural, multi-lingual interaction experienced by medical workers on a daily basis.

Lia’s physicians would not see past the culture and biases of Western medicine and Lia’s parents would not compromise the belief system of the Hmong people. This book serves as a lesson: while cultural barriers may be a behemoth to overcome, we must be ever-vigilant in working to understand one another. Unfortunately, little Lia got caught in the middle of the divide and her story is one you will never forget.

January’s book

For January, The DO Book Club will be reading The Man who Mistook his Wife for a Hat and Other Clinical Tales by Oliver Sacks, MD. We encourage all who are interested to read along (this book club can be followed at any pace)! If you are unable to get out to a local library or bookstore due to COVID-19, we recommend checking out eBook options for rent or purchase.

As a reminder, if you read “The Spirit Catches You and You Fall Down” or any previous Book Club selection and want your reflections to be shared in future posts, or want to write your own book review for a future month, please leave a comment below or email abrown@osteopathic.org.

Happy reading!

Related reading:

The DO Book Club, November 2020: On Immunity: An Inoculation

The DO Book Club, October 2020: The Beauty in Breaking