Compliance, Caricature, and Culturally Aware Care
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《新英格兰医药杂志》
The referrals were always the same. Febrile seizures, noncompliant mother, noncompliant mother, noncompliant mother, noncompliant mother.
So reports a California nurse who visited Lia Lee, the epileptic Hmong girl at the center of Anne Fadiman's 1997 book, The Spirit Catches You and You Fall Down. Most of Lia's U.S. health care providers attributed the worsening of her condition that culminated in brain death largely to parental noncompliance. As Fadiman reveals, Lia's immigrant parents, faced with a constantly changing regimen that was no match for the evil spirit they knew was causing Lia's fits, had neither the ability nor the desire to comply. Tragically, their story became an object lesson in how not to provide cross-cultural care.
Modeling a theoretically ideal approach to such care, Fadiman spent months getting to know Lia's parents, attempting to understand their reality in general and their truth about Lia in particular. Although she began by asking naive "Is the Pope Catholic?" questions — "Did you bury your children's placentas?" "Do you sacrifice pigs?" — Fadiman gradually developed a multidimensional sense of the parents' characters and the Hmong culture that had shaped them. From this position of compassionate comprehension, she recognized their noncompliance as a complex, logical behavior.
Fadiman's empathetic portrayal of both sides of this struggle suggests that some compromise ought to have been possible. Unfortunately, when a child arrives in the emergency room in the throes of a grand mal seizure, doctors don't have time for multiple get-acquainted sessions with her parents. Even if a hospital has competent, culturally acceptable translators on duty 24 hours a day, they can't always glean all the relevant information and broker a compromise in the precious moments between presentation and brain damage.
In care settings where the culture of many patients is foreign to the staff, it seems reasonable to undertake the sort of focused training that occupied the last generation of cultural-competency advocates — learning, for instance, about the spiritual beliefs informing the group's understanding of illness and healing. Fadiman models this effort too, countering the failure of imagination that blinded Lia's care providers to the incompatibility between their own health concepts and those of their Hmong patients. ("If you went down to the rain forest and talked to the Yanomamo," one physician explains, "you'd be surprised if they didn't come up with all sorts of fantastic spirit stories. . . . But if you took them to this setting . . . and they drove a car and came to [your clinic], you wouldn't expect to hear those spirit stories anymore.")
Sometimes, however, Fadiman crosses the line between well-researched ethnography and facile generalization — or even counterproductive caricature. Thus, she builds a case for universal Hmong noncompliance: it is "obvious," she asserts, "that the Hmong do not like to take orders; that they do not like to lose; that they would rather flee, fight, or die than surrender; that they are not intimidated by being outnumbered; [and] that they are rarely persuaded that the customs of other cultures, even those more powerful than their own, are superior." She arrives at such stereotypes by way of symbolism and analogy: "Almost every aspect of the tribe's history and character proceeds from the essential fact that they are montagnards," for "the lowland Lao may have been richer, more numerous, and politically more powerful, but the Hmong, peering down at their putative masters like eagles looking at mice, always managed to maintain an unbudgeable sense of superiority."
Despite, and because of, such lapses, Fadiman's account holds important lessons, including a critique of the notion of "compliance." Err in favor of the particular — individualizing care to the point of reinventing the cultural wheel with every patient — and you render compliance an unattainable luxury: in an emergency, you may have to rely on unfounded assumptions about both the problem and the patient's consent. Lean too far toward the general — pegging whole populations, for example, as innately unmovable — and the demand for compliance may become an impasse foretold by centuries of history. But manage to take the middle ground — building a base of cultural knowledge but refraining from using it as a template for interpreting the values, character, and needs of individual patients — and compliance might become superfluous, as patients and physicians collaborate in pursuing mutually agreeable treatment plans.
Recognizing the paternalistic tone of "compliance," some now speak of "adherence" instead. Sadly, such relabeling would not have solved the fundamental problem in the Lees' case. As the visiting nurse summed it up, "What we really knew about them wouldn't fill the bottom of a cup."(Debra Malina, Ph.D.)
So reports a California nurse who visited Lia Lee, the epileptic Hmong girl at the center of Anne Fadiman's 1997 book, The Spirit Catches You and You Fall Down. Most of Lia's U.S. health care providers attributed the worsening of her condition that culminated in brain death largely to parental noncompliance. As Fadiman reveals, Lia's immigrant parents, faced with a constantly changing regimen that was no match for the evil spirit they knew was causing Lia's fits, had neither the ability nor the desire to comply. Tragically, their story became an object lesson in how not to provide cross-cultural care.
Modeling a theoretically ideal approach to such care, Fadiman spent months getting to know Lia's parents, attempting to understand their reality in general and their truth about Lia in particular. Although she began by asking naive "Is the Pope Catholic?" questions — "Did you bury your children's placentas?" "Do you sacrifice pigs?" — Fadiman gradually developed a multidimensional sense of the parents' characters and the Hmong culture that had shaped them. From this position of compassionate comprehension, she recognized their noncompliance as a complex, logical behavior.
Fadiman's empathetic portrayal of both sides of this struggle suggests that some compromise ought to have been possible. Unfortunately, when a child arrives in the emergency room in the throes of a grand mal seizure, doctors don't have time for multiple get-acquainted sessions with her parents. Even if a hospital has competent, culturally acceptable translators on duty 24 hours a day, they can't always glean all the relevant information and broker a compromise in the precious moments between presentation and brain damage.
In care settings where the culture of many patients is foreign to the staff, it seems reasonable to undertake the sort of focused training that occupied the last generation of cultural-competency advocates — learning, for instance, about the spiritual beliefs informing the group's understanding of illness and healing. Fadiman models this effort too, countering the failure of imagination that blinded Lia's care providers to the incompatibility between their own health concepts and those of their Hmong patients. ("If you went down to the rain forest and talked to the Yanomamo," one physician explains, "you'd be surprised if they didn't come up with all sorts of fantastic spirit stories. . . . But if you took them to this setting . . . and they drove a car and came to [your clinic], you wouldn't expect to hear those spirit stories anymore.")
Sometimes, however, Fadiman crosses the line between well-researched ethnography and facile generalization — or even counterproductive caricature. Thus, she builds a case for universal Hmong noncompliance: it is "obvious," she asserts, "that the Hmong do not like to take orders; that they do not like to lose; that they would rather flee, fight, or die than surrender; that they are not intimidated by being outnumbered; [and] that they are rarely persuaded that the customs of other cultures, even those more powerful than their own, are superior." She arrives at such stereotypes by way of symbolism and analogy: "Almost every aspect of the tribe's history and character proceeds from the essential fact that they are montagnards," for "the lowland Lao may have been richer, more numerous, and politically more powerful, but the Hmong, peering down at their putative masters like eagles looking at mice, always managed to maintain an unbudgeable sense of superiority."
Despite, and because of, such lapses, Fadiman's account holds important lessons, including a critique of the notion of "compliance." Err in favor of the particular — individualizing care to the point of reinventing the cultural wheel with every patient — and you render compliance an unattainable luxury: in an emergency, you may have to rely on unfounded assumptions about both the problem and the patient's consent. Lean too far toward the general — pegging whole populations, for example, as innately unmovable — and the demand for compliance may become an impasse foretold by centuries of history. But manage to take the middle ground — building a base of cultural knowledge but refraining from using it as a template for interpreting the values, character, and needs of individual patients — and compliance might become superfluous, as patients and physicians collaborate in pursuing mutually agreeable treatment plans.
Recognizing the paternalistic tone of "compliance," some now speak of "adherence" instead. Sadly, such relabeling would not have solved the fundamental problem in the Lees' case. As the visiting nurse summed it up, "What we really knew about them wouldn't fill the bottom of a cup."(Debra Malina, Ph.D.)