While Lia remained a “lifeless husk”, Dr. Hutchinson accused MCMC of putting Lia in that position, as he believed that a hospital acquired bacteria may have caused her big seizure. While Dr. Neil insisted that he would have considered the possibility and performed a diagnostic test on Lia had he known, Hutchinson says that it is not Neil but rather all the staff who treated the seizures and not Lia, who are to blame. The author wondered IF there were any scenarios where Lia could come out on top, with a better overall outcome and only settled on one: communicate with the parents to find their beliefs and their expectations.
With Nao Kao and Foua getting weaker with age, and the unexpected death of Jeanine Hilt, Foua was concerned that Lia would soon have no one to take care of her, and that she would be institutionalized, which would be equivalent to death. She did not trust the medical field, and neither did the rest of the Hmong who had witnessed Lia’s downfall, and blamed them for saying they can no longer help to fix her. The author explored the ‘patient’s explanatory model’ developed by Dr. Kleinman, who said that Foua was in the right, and it is necessary to get rid of the term compliance, instead of looking at a model of coercion, look at a model of mediation; and understand that as powerful as the culture of the Hmong patient and her family is on this case, the culture of biomedicine has its own set of interests, emotions, and biases.
Chapter 18 reiterated the need for choosing the patient over a set of symptoms, as, at least for the Hmong, patients wanted doctors who would treat with compassion. Using the Hmong like cultural brokers rather than not utilizing the available resources, one could potentially prevent another disaster like Lia’s because of cultural misunderstanding.
I feel like we keep coming back to the same notion of why the hospital did not take the initiative to communicate with the parents. I am of the opinion, that with the resources available, that is, the few number of Hmong who spoke both languages, the doctors did try. With no way to verify what was being translated, there was only so much that could be done. It has been established that even when the Lees understood the message, they often refused to administer the right medication based on their discretion, and when the government tried to do check ins with a Hmong translator whom the Lees did not like, they refused to listen due to their own biases. The Lees would often bring in Lia while she was actively seizing and that point, I can sympathize with the doctors when they say they have to treat a seizure and not a person. This is why I am skeptical of Hutchinson’s point: Neil had predicted that there would a huge seizure at some point due to the progression of Lia’s illness, so to claim that Lia would have been fine had it not been for the bacteria, should be met with some resistance. Perhaps it would not have happened that night, but could her seizures have proceeded to that point some time in the future? If Depakane caused it, why was Lia prescribed the same medication by Hutchinson as well? Did he prescribe that no medication and just compassion would have saved Lia instead?
I think it is easy to reflect on a situation later and say that patience is key, or cultural understanding is a necessity. While I cannot deny that it would have been helpful, almost all of Lia’s hospitalizations were extremely dire conditions, one for active medical interventions, not a moment of “what are your expectations”. I am assuming the answer to the latter would be to save their child, which is what the doctors were doing to the best of their capacity, as were the parents in their own techniques.
I have maintained the Lees had the choice to not go to the hospital and only seek out their own medication if they would have so preferred. The author says that had Lia not gone to a hospital, then she would not have survived infancy, and that MCMC had left her vegetative, but she had lived longer than she otherwise would have in a relatively healthy state before that. While the septic shock added fuel to the fire, the original oxygen deprivation as a result of the big seizure whether it came then or later, would have left her in a similar state.