On November 26, 1986, the Lees were eating dinner with Lia, who had had a mild runny nose for several days. She normally had a voracious appetite, but that day, she could eat only a little rice and water. When she finished, her face took on the strange, frightened expression that always preceded a seizure. She ran to her parents, hugged them, and began seizing. Previously, Foua and Nao Kao had carried Lia to the hospital. This time, they called an ambulance because the staff would pay more attention to Lia when she reached the hospital. Lia seized continuously for two hours. When she stopped, she was unconscious, though breathing. Because MCMC does not have a children's ICU, Lia had to be transferred to Valley Children's Hospital in Fresno. No one explained to the Lees what was happening. Instead, Nao Kao had the impression that Lia was being sent to Fresno because Lia's doctors, Neil Ernst and Peggy Philp, were (coincidentally) going on vacation the following day. According to Foua, Lia's doctor could make her better in a couple of days when she was sick. They believed that Lia would have recovered had she remained at MCMC under the care of Neil Ernst.
On arrival at Fresno, doctors performed a spinal tap on Lia, without the Lees' consent. As Nao Kao said, "they just sucked her backbone like that and it makes me disappointed and sad because that is how Lia was lost." Foua added that the doctors took Lia to the hospital and did not fix her. She was convinced that too much medicine was the cause of Lia's worsening condition.
Lia was returned to MCMC on December 5, 1986. Foua stayed with her around the clock, preferring to care for Lia herself. Both parents attempted to feed her herbal remedies through the nasogastric tube. On the second day, Nao Kao demanded that the subclavian line be removed and that all medications be discontinued. They believed that Lia was so sick that she might die and that the medicines were killing her. They were very angry with the doctors for being specific about when Lia would die after her IV was removed. They were afraid that such bold statements would make the dab come closer to Lia. Nao Kao attempted to run away from the hospital with Lia to prevent such an occurrence, causing a security breach. He was caught and asked to return Lia to her room.
Lia was discharged.
Let's consider for a moment how the Lia Lee situation could have gone better. What could her doctors have done differently?
Discussion: Perhaps the tragic outcome in the Lia Lee case could have been averted if the Lees had administered the prescribed medication appropriately. What could the providers have done to help?
First, the Lees were ambivalent about her seizure disorder and were ambivalent about treating it completely. They believed that there were many traditional ways to treat Lia's illness that did not require the drugs that doctors wanted Lia to take. The Lees were concerned about the side effects of the drugs and their long-term use.
In retrospect, it also appears that the multidrug regimen that was prescribed was too complicated for the Lees to follow. It may have been preferable to have a somewhat less effective, but easier-to-follow drug regimen.
Finally, the providers needed to create a sense of partnership with the Lees by taking more time to understand the Lee's perception of Lia's illness.
The providers needed to establish a relationship with the Lees that would allow for open dialogue with the Lees. |
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