The gap between cultural systems can be wide. Openness, curiosity, and humility will improve cross-cultural care.
Usually categorized as an ethnography, Anne Fadiman’s book,”The Spirit Catches You and You Fall Down,” is also an extraordinarily detailed case report of a preventable tragedy.
After enduring unimaginable loss in their home country during the Vietnam War, Lia Lee’s family resettled in Merced, California where they would once again be subject to forces beyond their control. Lia began having seizures at three months old. Her family brought her to medical care—where she received an incorrect diagnosis due to lack of interpretation services.
Ultimately, she was diagnosed with epilepsy and prescribed medications. In Hmong culture, epilepsy is a condition called qaug dab peg, in which the soul becomes separated from the body. Her family began treating her using tvix neebs, or shamans, in order to reunite body and soul. Her parents, seeing value in the traditional treatments and negative side effects from her prescription medications, did not administer the full doses or frequencies of the necessary treatments. Lia’s medical team watched in horror as she suffered repeated grand mal seizures and increasing medical sequelae. Meanwhile, her family doted on her tirelessly, spending hours each day bathing her, administering creams and playing with her. Ultimately, Child Protective Services were called and Lia was taken from her family for a year. Although Lia was eventually reunited with her family, the chasm between Lia’s family and the medical system never closed. Lia continued to medically decline and ultimately suffered a tonic-clonic seizure at the age of four which left her in a vegetative state.
Lia lived until the age of 30. Her family cared for her at home until she died, 26 years after entering a vegetative state. For 26 years, her family washed, carried, stretched, and fed her. Every year, a tvix neeb performed a ceremony for her.
Lia Lee’s story is one of tragedy, and also one of extraordinary love. Lia’s medical team and her family each did the best they could to heal her, yet neither could succeed independently.
Changes in the medical system can improve cross-cultural care. We must always provide full access to interpretative services. We must ask and comprehend our patients understandings and beliefs about their own conditions, and learn what goals they have for their own care. We must acknowledge that patients may use complementary treatments, and work to understand the effects, interactions, and meaning behind those treatments.
Most crucially, Lia’s story calls for humility within the medical system. No one can be an expert on every culture’s beliefs. We must acknowledge when we don’t know the answers and ask for help. The gap between belief systems can be wide, and the bridge lies in openness, curiosity, and humility.