Running head: TRANSCULTURAL BARRIERS TO CARE

Transcultural Barriers to Care: The Lia Lee story

Crystal Buck
Dixie State University

TRANSCULTURAL BARRIERS TO CARE

Transcultural Barriers to Care: The Lia Lee story

Providing care to people from different backgrounds create unique challenges for the
healthcare staff. Culture defines who people are and how they perceive disease, death and all
aspects of their life. When people are ill is when they are most vulnerable and will adhere
strongly to their beliefs and cultural traditions. The book The Spirit Catches You and You Fall
Down focus on the history and traditions of the Hmong people. Throughout the book the author
describes the Hmong culture and the traditions and history that drive their culture. The Hmong
are a strong and driven people. They had been driven out of the homes numerous times yet they
thrive where ever they are placed and do not give up their beliefs for ease or assimilation.
Specifically, the author tells the story of the Lee family and their daughter Lia. A summary of the
book will be provided as well as application to our current curriculum and a personal reflection
of what I have learned through this.
Description of Book
The Hmong believe that illness can be caused but a variety of reasons the most agreed
upon is Soul loss. The Hmong believe a person has multiple souls but it is the life-soul, whose
presence is necessary for health and happiness, that tends to get lost (Fadima, pp 3). When Lia
was 3 months old her sister slammed the door and Lia had her first seizure. The Hmong do not
know the name epilepsy and actually perceive seizures as a sort of divine choosing where the
afflicted will often become a Shaman. Through the next months of Lia's life she continued to
have seizure. Some of them concerning enough that they took her to the local hospital, MCMC.
Unfortunately the hospital did not have any interpreters and with no way to communicate with
the Lees ,the residents had to practice veterinary medicine (Fadima, pp 21) with Lia.
Originally she was diagnosed and treated incorrectly with pneumonia. She eventually was

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brought back in having a Grand-Mal seizure. She was correctly diagnosed with epilepsy at that
time and treated inpatient. On release she was prescribed antibiotics for aspiration pneumonia
and an anti-seizure medication.
Over the next couple months and years Lia would continue to have worsening and more
frequent seizures. The doctors tried different cocktails of anticonvulsants, antibiotics, fever
control, and other medications to control symptoms and to stop her seizures. To their frustration,
often when Lia was brought in having a seizure they would find that her blood serum for the
medication was too low. This is where the cultural barriers really began to show. The Lees could
not read or write and did not understand the medications they were giving their daughter or the
proper amounts. Having had very little explained to them by a family member that spoke some
English they decided that the medications were actually contributing to Lia's illness.
MCMC, in particular the pediatrician Neil and Peggy Philp attempted other interventions
to assist with the medication compliance. They sent a home health nurse the the Lee home that
used stickers and made charts in an attempt to direct the Lees on how to use the medications.
There was still such a language barrier and difference in mindset though that all of their attempts
were met with failure. It is not surprising that a child who had seized as frequently and severely
as Lia was beginning to show the first signs of retardation, but Neil and Peggy found the
situation particularly tragic because they considered it preventable (38) had Lia received her
medications consistently.
Eventually Lia came in with status epilepticus that was excessively difficult to stop and
control. Lia had seizure after seizure. Although those that dealt with Lia understood there was a
cultural barrier they perceived the parents as stubborn and non compliant. Over time Neal made
the decision that Lia was unsafe in here current situation and called child protective services. Lia

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was removed from her home and placed in foster care with the Kordas until her blood levels
stabilized with the medications and her parents demonstrated that they would take proper care of
Lia. Through all of this the social worker Jeanine worked with the Lees and became a trusted
ally. Over time the foster family became friends with Foua and saw her as a loving and
competent mother. Lia was allowed to return home for a week visit where she did not receive
her medication and ended up having a severe seizure that caused terrible ischemia to her brain
and Lia's mental faculties deteriorated further. Lia was prescribed one medication by another
pediatric doctor and the foster mother made great efforts to teach Foua how to administer the
medication properly. After approximately 12 months Lia was returned home to her family.
For a while as far as the medical community was concerned Lia's spring and summer
following her return home was uneventful. The doctors believed their medication regime was
working and Lia was finally stable. The Lees were under the impression that the court had
returned Lia to them because foster care had made her sicker, clear evidence that her familys
care was superior (Fadima, pp 70). The Lee's continued to give Lia the medication as prescribed
afraid she would be taken again but they also stepped up the alternative medicine. The sacrificed
animals, washed her with herbs and had a txiv neeb (Hmong Shaman) come regularly to attempt
to find and return her soul to her body.
Despite the medication compliance and alternative medicine Lia began having seizures
again. Her condition was complicated by aspiration and multiple different infections. In 1986 Lia
finally had a seizure that would not stop. She was taken to MCMC where they stabilized her and
sent her to a special pediatric facility. At this hospital Lia became sicker and sicker despite
everything the doctors attempted. Lia ended up having a seizure that resulted in her brain death
and her seizures were at an end for good. Lia's father insisted that the medications be stopped and

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the lines be removed. The doctors thought they wanted their daughter to die peacefully when in
fact the Lee's believed that the medication was making Lia sicker and they wanted it to stop. The
doctors where sure Lia's time was short and she was sent home with her parents. Despite her
prognosis Lia's body continued to live. Foua took impeccable care of her and Lia still lives to
this day.
Application to Course Content
This book is the perfect example of the difficulties of providing transcultural care. It also
represents the devastating results when the cultural barriers are not addressed appropriately. The
author gives many examples where the doctor and the patient family perceptions were
completely different. Each would have been surprised to know what the other believed. Not only
was there a communication barrier the understanding of each other was completely absent. The
Lee's were never asked what they believed was the cause of Lia's illness or what they believed
was contributing. If the doctors had had some small understanding that the family thought the
medications were what was making Lia sick they could have addressed the situation completely
different. There is a sense in each culture that our way is the best way. Without communication
and respect for the differences, medical care becomes more complicated than it already is.
Culture defines how people perceive illness, death, medications etc. The Hmong believe
illness has to do with soul loss and that one has to make reparations for the soul to return and the
illness to abate. They find western medicine helpful sometimes but because of their belief that
illness is from the soul not a physical function they may or may not be compliant with
medications, most likely not. This is not stubbornness or refusal to care for themselves it is lack
of understanding.
Personal Insights and Feelings

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I find the story of Lia devastating. Every part of it, not just her illness. It is unfortunate
that communication was so lacking. My heart hurts for Lia's parents and the loss they have
experienced. To the doctors Lia's condition is physical, they did all they could, they were not
greatly successful because they couldn't control the parents. To her parents her condition is
because they didn't do what the doctors wanted, the doctors were angry etc (Fadima, 1997). They
were parents that clearly adored their little girl and yet despite everything they tried to do she
was taken from them. They were forced to allow care they didn't believe in or understand. It had
to have been terrifying for them to not know what was going on but to only see their baby getting
worse and worse. As a mother myself I find the lack of control and understanding to be
terrifying. I don't know that I could have been as strong as they were.
In my own practice I realize that there is some of this cultural disparity that I face on a
regular basis. We have a large Hispanic population that comes into the ER and even when we
have an interpreter I find myself dreading these patients. They have a tendency to, what I see as
overreact, and seem unable to focus on their current complaint but instead want to tell you their
entire medical history. The other extreme of that is that they won't really explain anything just
state they hurt and expect you to fix it. For me it can be frustrating because it throws me out of
my normal groove. For them it can be terrifying. They are scared and worried about what is
happening to them. This book really made me reflect on my own interaction with people of
different cultures and I want to do better. I will never understand them the way they understand
themselves but I can make a better effort and take the time to explain and ensure they truly
understand.
Conclusion

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The Spirit Catches you and you fall Down is a perfect example of how deeply entrenched
beliefs systems can be in individuals and how it completely effects the outcome of the patient for
the good or ill. Healthcare personnel have the responsibility to attempt the bridge the gap and
facilitate understanding. The medical field has a lot to offer but is only as strong as those willing
to work inside of its parameters. The patient is the most important factor and they are bigger than
the physical view. Their health involves their family, their religion, their spirituality and their
traditions. Without the ability to communicate and understand eachother there is no way to be
truly successful in transcultural care.

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References
Fadiman, A. (1997). The spirit catches you and you fall down: A Hmong child, her American
doctors, and the collision of two cultures. New York: Farrar, Straus, and Giroux.