Lia Lee and Medical Freedom

The Spirit Catches you and you fall down: a book review

Depending on who is asked, Lia Lee was either chosen by the spirits to become a shamanistic healer or diagnosed with severe epilepsy. As her Hmong parent, which are you more likely to believe? Wouldn't any parent rather have a prophetic healer than a severely epileptic child? Putting the Lee family's beliefs into perspective may help to understand their choices regarding Lia's medical treatment, but that does not excuse the consequences. There are several factors that contributed to the Lee family's noncompliance with medications and I was surprised at how easy it was to put myself in their shoes. Let's explore the concept of medical freedom and the impact it had on Lia Lee's health.

While the first year of the Lee's medication noncompliance could be explained by the communication barrier, the subsequent years appeared to result from distrust in western medicine. As Lia's doctors continued to provide treatment and attempted to persuade her parents to continue medications at home, Foua and Nao Kao grew to believe that the physicians were further harming Lia rather than helping her. In their eyes, Lia's epilepsy was not getting any better yet she continued to feel sicker. The treatment was causing more problems than the seizures were. Foua and Nao Kao had no knowledge of how the brain works or the long-term effects of seizures. They had no reason to believe the seizures were harming Lia. Their only understanding came from what they saw with their own eyes. Lia's seizures just made her body shake, but her medications were causing her to vomit, have temper tantrums, and become "a terror", among other things. The treatments were making Lia sicker so it made sense to stop giving her the medications. Although the Lees' eventually refused to medicate Lia with western medicine, they continued to pursue Hmong healing rituals and truly believed that they were helping Lia by doing so. They've relied on Hmong healing for their entire lives and came to the conclusion that western medicine was interrupting with their healing practices. I can sympathize with their reasonings for the noncompliance, but I believe that there should have been a greater effort by all parties involved to improve their medication adherence.

Lia's doctors were, understandably, at their wits' end when trying to convince the Lee family to stick with the treatment plan. Not only was there a large language barrier, there was also a cultural divide when it came to treating Lia's epilepsy. However, they are medical professionals who have surely dealt with other cultures and other languages before. Even as the physicians self-reflected throughout the book, I couldn't help but feel that Lia's doctors could've done more to ensure medical compliance from the Lee family. Western medicine practitioners commonly experience patients who are noncompliant and/or illiterate. Lia's doctors could have applied these experiences to Lia's case in a number of ways:

• Assigning a home health nurse to the Lee family that could have demonstrated and ensured Lia received her medicine. The doctors talked about doing this at one point but decided against it.
• Prescribing fewer medications. One of the reasons for medical noncompliance is being overwhelmed by the amount of medications prescribed. Lia saw significant improvement while on just one medication prescribed by a different hospital. This particular medication was never tried before with Lia (although her doctors did express regret for rejecting this treatment in hindsight).

While I can emphasize with both the Lee family and Lia's doctors, it's important to remember that the only outcome that matters is Lia. Her doctors and her parents were unable to come to an understanding and Lia paid the price. I believe that, regardless of cultural beliefs or value, a child's health must come first. Lia's health outcome was a direct result of her parent's inability/refusal to be compliant with western medicine, but it was not solely their fault. Lia's parents had every right to turn to holistic treatments, but they should have been used in addition with western medicines. Similarly, her physicians should have taken stronger measures to intervene when it became clear that the Lee family was being noncompliant. CPS should have been involved sooner, or different strategies should have been implemented to assist the Lee family in understanding the importance of her treatments. In my opinion, medical freedom is a right to an extent when it involves a child. Calling CPS was a difficult decision for the doctors to make, but it ultimately led to the parents understanding the necessity of medicating Lia. The Lee family was never prevented from seeking Hmong healers, but their medical freedom should have stopped there when it became apparent that their noncompliance with western medicine was further harming Lia. I believe that CPS should have been called sooner only because it proved to be the catalyst needed for Lia's family to begin administering her medications.

"First, get rid of the term 'compliance'... You don't want a command from a general, you want a colloquy. Second, instead of looking at a model of coercion, look at a model of meditation... Decide what's critical and be willing to compromise on everything else. Third, you need to understand that as powerful an influence as the culture of the Hmong patient and her family is on this case, the culture of biomedicine is equally powerful." - Arthur Kleinman, The Spirit Catches You and You Fall Down

As Lia's doctors continued to self-reflect in the chapter "The Eight Questions", I feel it is important to note that as I was reading this book, it seemed so obvious as to what the "correct" thing to do would have been. I would have acquired a translator for every doctor-patient interaction, I would have provided follow-up care in the home setting, I would have prescribed Lia simpler medications, I would have reached out to a shaman. Would any of this made a difference? Would Lia's outcome been better? I have to admit that I'm not sure it would have. I think it's possible that Lia's parents still would not have been compliant because they believed that Lia would have been just fine in Laos, where they had access to healing herbs and powerful shamans. For these reasons, I have empathy for both the Lee family and Lia's team of doctors, whom I'm sure have asked themselves the same questions many times.

If there are only two things that The Spirit Catches You and You Fall Down teaches us, let it be this: cultural understanding and affective communication are necessities for improving understanding of the importance of medical compliance.

• Western medicine practitioners should utilize Hmong translators to appropriately address all patient concerns and explain the purpose of each medication. When possible, collaborations between western healers and shamans should occur so as to satisfy both the Hmong cultural beliefs and also modern day treatment. Biomedical care can be provided alongside the shaman and would be an acceptable compromise to ensure that both patient and doctor are satisfied with the medical care being given.

• Illiteracy should also be taken into account. Home health nurses with translators should be provided when needed to appropriately demonstrate how to administer medications in the home setting. Families who are illiterate should be given videos that demonstrate the medications so they can refer to it when the home health aid leaves.

• Social workers with translators should make weekly check-ins with the families to ensure they're being compliant with medications and to answer any questions that may prevent them from doing so. If a family continues to be noncompliant, home health nursing care should resume until both parties are satisfied with the care being provided.