Friday, November 28, 2014

Lia Lee's physical condition worsened despite the efforts of her parents and social/health professionals that tried to save her. How did this tragedy happen? How, if at all, might it have been averted?

In The Spirit Catches You and You Fall Down, four-year-old Hmong American Lia Lee enters a vegetative state following complications of epilepsy. Author Anne Fadiman investigates the complications from the perspectives of both allopathic medical specialists and the traditional Hmong belief system.
According to her doctors in California, Lee’s opportunity for a normal life depends on how compliant her parents will be with her care plan. The doctors suspect that Lee isn’t being given her prescribed anticonvulsants. Because the family doesn’t speak English, the hospital staff doesn’t know if their noncompliance is due to misunderstanding or willful neglect. They dispatch social services and an interpreter to teach the family the importance of regularly administering the proper does of medication. Through a series of increasingly paternalistic decisions, the Western doctors make it clear that their concept of care is the only way to save Lia Lee.
The Lee family, meanwhile, is becoming more distrustful of the doctors. According to their Hmong traditions, symptoms of epilepsy are considered to be manifestations of a powerful spirit and a special life, possibly as a healer. They feel that the medication overly sedates their daughter and undermines her spirit. Eschewing her prescribed treatment, they turn to a tvix neeb, a faith healer, and begin dedicating their resources toward Lee’s often expensive traditional care.
The conflict between the allopathic and faith-based systems leads to tragedy for Lia Lee. Later interviewed by Anne Fadiman, the doctors say they didn’t know the Lee family held such beliefs about epilepsy and the “spirit.” A social worker disagrees. She notes that the Lees, via interpreters, were open with the reasons for their apprehension. In hindsight, Fadiman details the breakdown of intercultural communication. The doctors and the family turn inward toward their own traditions, never engaging in the kind of dialogue that could broaden their perspectives and possibly save Lia Lee’s life.

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