Watch any health-care debate long enough, and sooner or later the question of the doctor-patient relationship arises as a key issue. The worry is that as various health-care models emerge, the special connection between health-care providers and patients will somehow be lost.
The bond between doctors and their patients can be a complicated one, as we were reminded recently by the death of Lia Lee at age 30.
Lee, the daughter of Hmong refugees who had immigrated to California to escape persecution by the North Vietnamese, was the subject of a widely popular 1997 book by Anne Fadiman, “The Spirit Catches You and You Fall Down,” a story that’s now widely distributed in medical schools across the country.
Lee suffered from epilepsy, a condition sometimes described among the Hmong people by the folk expression that’s the title of Fadiman’s book. Lee’s parents, true to their upbringing, believed that their daughter’s epilepsy was a spiritual condition best addressed by a traditional shaman. Lee’s American physicians prescribed medication for Lee, but cultural and language barriers prevented Lee’s family and her medical team from fully understanding each other. The result was a particularly severe seizure and medical complications that left Lee comatose from the age of 4 until her recent passing.
Lee’s case underscored the need for better medical communication across cultural barriers. Fadiman’s book, which has sold nearly a million copies, is a commonly assigned text for doctors in training.
Fadiman’s beautifully written book, recently reissued in a new edition, offers a narrative in which there are no real villains — only a community of caregivers trying, sometimes imperfectly, to do the right thing.
Although Lee is gone, her legacy lives in Fadiman’s narrative, a cautionary tale about the deeply human — and deeply fallible — practice of healing.