What events lead to this lack of communication and misunderstanding between the doctors and a refugee family from Loas, whose infant daughter was diagnosed with severe epilepsy? Lia Lee’s seizures started at 3 months of age, right after her older sister slammed the front door of the apartment. The parents believed that the noise from the door slamming frightened the infant’s soul out of her body. During the next four and a half years she had over 100 emergency department visits and 17 hospital admissions. A number of anticonvulsants were used to try to control her seizures. In spite of this, Lia continued to have seizures, and there was great consternation and concern among her doctors about her parent's inability and unwillingness to correctly give the medications.
According to the Hmong culture, Lia had qaug dab peg (the spirit catches you and you fall down), which makes her a special child with a healing spirit, or an anointed one. The parents thought the doctor’s treatment wasn’t working, and they were concerned about the side effects of the drugs. There was a good reason to stop the medicine and use traditional spiritual medicine involving the soul to treat the condition. Over the next several years, Lia continued to have seizures and complications. The parents only sporadically gave her the medications, because too much medicine decreases the neeb or healing spirit. They used a number of traditional healing techniques, such as coin-rubbing on her body. Then when Lia was four, she fell off a swing, hit her head, and developed status epilepticus. At the hospital she went into septic shock and eventually had no brain activity, which brings us to the mother’s statements made above about discontinuing life support measures.
Lia did not die, nor did she recover. Her parents took her home in a vegetative state to care for her. Ann Fadiman believes that Lia’s life was “ruined not by septic shock or noncompliant parents but by cross-cultural misunderstanding.” (p. 262) In her chapter “The Eight Questions,” she describes a conversation with Arthur Kleinman, who developed the explanatory model of illness, designed to elicit a patient’s perspective of illness. Fadiman discusses how asking Lia’s parents Kleinman’s Questions might have provided important cultural perceptions that would have made a difference in Lia’s care. Check out how Fadiman believes the Lees’ might have answered these questions.
Kleinman’s Eight Questions for Cultural Assessment
- What do you call your illness? What name does it have?
- What do you think caused your illness?
- Why and when did it start?
- What do you think the illness does? How does it work?
- How severe is it? Will it have a short or long course?
- What kind of treatment do you think the patients should receive? What are the most important results you hope the patient receives from this treatment?
- What are the chief problems the illness has caused?
- What do you fear most about the illness?