The doctors had tried every strategy they could think of to persuade young Lia Lee’s Hmong family to comply with her prescribed drug regimen. If left uncontrolled, Lia’s severe epileptic seizures could cause serious neurological damage, even death.
Hmong interpreters were brought in. Nurses were dispatched for weekly home visits. Special pill charts were devised because the Hmong count and mark time differently than do other cultures. Still, frequent testing showed that the Lees varied wildly in compliance from month to month, sometimes deliberately doubling the dose of one drug while discontinuing a second. At one point, the physicians orchestrated Lia’s placement in foster care.
Each time the Lees rushed Lia to the emergency room over the years, these same doctors pulled Lia back from the brink of death. Didn’t the Lees love their daughter, the doctors wondered. Heroic in their efforts to help Lia, they were left angry, frustrated, and fearful for Lia’s outcome.
In celebration of National Minority Health Month, I urge you to read “The Spirit Catches You and You Fall Down: A Hmong Child, her American Doctors and the Collision of Two Cultures’ by Anne Fadiman. It’s a fascinating account of the influence of culture on health behavior—and how health care providers can partner more effectively with patients with different worldviews than their own. Winner of the National Book Critics Circle Award, the book is available in paperback.
Toward the end of the account, Fadiman introduces a strategy developed by Arthur Kleinman, a psychiatrist and medical anthropologist. His diagnostic set of eight questions helps reveal a patient’s world view. As Fadiman notes, the questions seem obvious. Yet when she considers how the Lees might have answered, given a skilled translator, their power is revealed:
1. What do you call the problem?
Quag dab peg. That means the spirit catches you and you fall down.
2. What do you think has caused the problem?
3. Why do you think it started when it did?
Lia’s sister Yer slammed the door and Lia’s soul was frightened out of her body.
When Fadiman presented the hypothetical answers to Lia’s physicians, they were dumbfounded. Kleinman’s question series, if asked at the outset—before physicians and the family gave in to anger, mistrust, and disappointment—might have altered the course of Lia’s treatment. In understanding a little more about the Lee’s world view, physicians may have been able to negotiate, making adjustments and compromises for the benefit of the patient.
4. What do you think the sickness does? How does it work?
5. How severe is the sickness? Will it have a short or long course?
6. What kind of treatment do you think the patient should receive? What are the most important results you hope she receives from this treatment?
7. What are the chief problems the sickness has caused?
8. What do you fear most about the sickness?
If the Lees had been asked these questions early on, tragedy might have been averted. Because in this fascinating account of the influence exerted by the patient’s worldview, we must recognize that the culture of Western medicine is also powerful. As Kleinman told Fadiman, ‘if you can’t see that your own culture has its own set of interests, emotions, and biases, how can you expect to deal successfully with someone else’s culture?”
Note: The Hmong are from Laos; many came to the U.S. as war refugees.
Alison Koop is a Seattle-based PR and marketing communications professional with 20 years’ experience in the publishing, education, and nonprofit sectors. She is a Master of Science candidate in Health Communication, Boston University. www.linkedin.com/in/alisonkoop