The basic premise of this book is simple enough: a Hmong family brings their infant daughter, Lia, in to the emergency room of a hospital in Merced, California. She is having an epileptic seizure. The doctors do what they can to treat the child, then and in subsequent visits, but the parents do not follow through on the requested regimen. Lia’s condition continues to deteriorate; after several years of treatment, Lia arrives at the hospital in the throes of a particularly bad seizure, and despite medical efforts, she ends up brain-dead as the result of oxygen deprivation.
What lifts this above a mere “he said, she said” medical account is Fadiman’s delving both into the Hmong culture and her access to the Lee family’s home life. Her book thereby ends up being as much socio-cultural documentary as it does description of medical treatment; the parents allowed Fadiman considerable insight into their own background, and she did what appears to be a creditable amount of research into the Hmong culture as a whole. One thing to keep in mind, when reading this book now, is that not only was it written fifteen years ago but also the author is describing events that took place fifteen years before that. I don’t know how hospitals’ policies have changed in regards having translators available, at least for the major languages spoken in the specific community (and Hmong were a significant portion of Merced’s minority population even then. Think immigrants from Mexico and Central and South America.)
Like a few other reviewers on Goodreads, I am not convinced that the cultural gulf between the doctors and the parents was the only cause of Lia’s death. Contributing factor, to be sure. That lack of communication affected her health and well-being while she was alive, certainly. None of us will ever know, however, whether a child of acculturated American parents with a similar condition would have lived or died; epilepsy, like many conditions, comes in a range from mildly discommoding to untreatably entrenched. If the child’s epilepsy falls at the severe end, or the patient does not respond to treatment despite following it scrupulously…what do you think would happen?
I do, however, come away from this book with a sympathy for the parents. If the situation were reversed—I were in a town outside Luang Namtha and non-English-speaking doctors kept insisting on treating me with acupuncture but never explained WHY they chose this modality over that one—I’d respond much as the parents here did. Differences in treatment methods aside, how can you possibly give informed consent when you cannot comprehend the doctor’s explanation? In fairness to the parents, too, there are more than a few “non-compliant” patients who’re of the same culture as their physicians, and who speak the same language as the hospital staff; we ought not to lay the blame for the parents’ choice not to medicate their child purely on the doorstep of ‘cultural misunderstanding’. Drugs’ effects can sometimes seem worse than the condition they’re supposed to be alleviating.
Overall, I think it’s still worth reading, not least for the background into the Hmong culture. I’d hope, however, that if there was sufficient interest in the community, the library would respond by getting more recent books on the subject, whether medical or cultural.