The Most Important Factor
This spring the HPPR readers’ book club is reading Anne Fadiman’s “The Spirit Catches You and You Fall Down”. I am Phillip Periman in Amarillo here to give you a little background on this narrative, non-fiction book which was published in 1997 and is the story of the cross-cultural conflict between modern American medicine and a family of refugee Hmong whose baby daughter Lia had a seizure disorder. The child had 17 admissions and over 100 clinic visits to the Merced medical community between the ages of three months and four year.
Unfortunately, Lia’s disease resulted in her being in a vegetative state. Lia was sent home to die, but through the family’s devoted care she lived 26 years longer. Both the family and the doctors felt frustrated with the course of her care and its results which were caused in part by a lack of understanding by both the family and the medical personnel.
I had the good fortune to hear Fadiman talk about this book in December 2019. The making of this book took eight years. It was Fadiman’s first. She learned of this tragedy in 1987 thru a school friend who was the family practice chief resident in the Merced Hospital.
Fadiman came to California on a New Yorker assignment. She interviewed the house staff and the physicians who care for Lia. She became friends, one might say, a member of the Lee family. A crucial role in her process was played by her interpreter who gradually taught Fadiman about the Hmong culture, what was acceptable to ask and to do and how to relate to these people still animist, still making animal sacrifices of pigs and cows as treatment for their illnesses.
Fadiman begin to see how there were two different realities: western and Hmong. She has no illusion about her reality---modern, scientific(her daughter is now a medical student). Fadiman noted that she would not be able to write this book in 2019. When she worked on the book, Fadiman had permission from Lia’s family to review her medical record. She spent many hours, alone in the hospital’s record department reviewing the doctor’s notes.
She discovered that the prescriptions for Lia had changed 23 times. The chart weighed 18 pounds and 11ounces! The records were made when doctors actually wrote in the chart and left a narrative of what had happened. Today’s electronic medical record by contrast is a set of check list designed more for billing purposes than for documenting medical thinking. In addition, the HIPPA law is now in effect; it would be unheard of for a writer to have hours of unsupervised access to the medical records.
Lia’s family reality was the animistic spiritual reality and the extended close knit clan culture of the Hmong who had maintained their ethnic identity for thousands of years in China and SE Asia without ever having their own country. By 1990 Hmong refugees made up 20% of the population of Merced.
A few social workers finally became acquainted with and understood the Hmong culture, especially the role of their thinking that good and evil spirits lived among them and determined their well-being. A telling moment for me was an extended discussion Fadiman arranged between a social worker and a doctor, neither of whom had met each other, but both had worked with the Hmong.
After some general discussion, the talk turned to Lia’s case particularly and the episode where Child Protective Services took her away from the family for not administering the proper medicines. The doctor argued that the most pressing demand was to sustain the life of the child regardless of the parent’s belief. The social worker noted that the Hmong believed the child’s soul would be forever damned if the child died during modern medical care. For the doctor, life was the most important factor. For the social worker, the soul.
This has been Phillip Periman in Amarillo for the Readers’ Book Club.