I caught in the middle of an

I feel that Anne
Fadiman wrote the story of Lia Lee and her family’s life in both the most
intimate and tragic of details. The Spirit Catches You and You Fall Down is a
poignant depiction of both the struggle between loving parents, hard-working
medical professionals, and a child caught in the middle of an unfortunate
cultural tug-of-war. I commend Anne Fadiman on her ability to distinctly
illustrate and capture how the collision of two cultures indirectly led to the
demise of a seven-year old girl. I did not expect this story to end with Lia
Lee in a persistent vegetative state.

When
I began reading this book I remembered being very excited to learn about the
Hmong culture. I found it very interesting to learn that the Hmong protect
their babies’ souls from dabs by swaddling them in handmade cloth carriers,
called nyias. They believed that a baby’s soul could be drawn away by sweet
sounds, bright colors, or loud noises. They also believed that the soul could
leave a child if a child was sad, lonely, or was not loved enough. Lia’s
epilepsy, or quag dab peg, to the Hmong represented a fleeing of the soul from
her body. Seizures in the Hmong culture are believed to be evidence that a
person has the power to perceive things that others cannot see, and is a
pre-requisite for their journey into the realm of the unseen (pg. 100).

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As
I continued reading, I remembered becoming very upset with the lack of
compassion people demonstrated towards the Hmong in general throughout the
book. I did some self-reflecting of my own during my time reading this book and
even thought about my experiences with other cultures and how I have even felt
when traveling to other countries. I asked myself had I been rude and
inconsiderate to people of other cultures? I have always tried to be someone
who is very culturally aware and respectful of other cultures. While reading
this book I became aware of multiple themes prevalent within the book; cultural
collison, lack of cultural competence, lack of patient safety, power and
spirituality. When the Hmong’s immigrated to the US and the Lee’s in
particular, there was a major cultural collision that took place. Certain
aspects of Hmong culture, such as taboos against medical procedures, beliefs
about the origins of diseases, and power structures within the family posed a
huge conflict with the culture of western medicine. This resulted in
misunderstandings between doctors and Lia’s family. Other aspects, of Hmong
culture such as the utilization of animal sacrifice in shamanic ceremonies,
lead to conflicts between the Hmong and their American neighbors; for instance,
some Americans believed the Hmong were kidnapping and killing neighborhood
dogs. Lia’s tragedy is presented as the result of this cultural collision and
ultimately highlights the need for a new model of cultural understanding and
cooperation.

As
a nursing professional and an advocate for patients and family, there were many
instances in which I was appalled by the failure in the Western medicine
portrayed in the book. In an effect to promote a culture of patient safety and
cultural competency the appropriate thing to have done would have been to ask
the Lee’s if they had any spiritual beliefs early on during Lia’s hospital
stays. It would have been extremely important and helpful, considering the fact
that Lia was so seriously ill and frequently in the hospital, to have staff
education on the Hmong culture which should have consisted of the special needs
of this population including their inability to read, write, drive, and their
spiritual beliefs.

Western
medicine is so grounded in science yet the Hmong’s are so spiritual. They
believe that if the soul is not well it can be manifested in physical ailments.

This would be very important for medical professionals to understand in terms
of interdisciplinary collaboration with the parents and the medical team in the
care of Lia. It is important to remember that all patients and their families
come into the healthcare field with their own worldviews, and seeking to take
part in their own care. I believe that for modern medicine to be truly
effective in most cases a cooperation or balance must be struck between
technology-based Western medicine and the spiritual and cultural beliefs of the
patient and family. Doctors should consider their patients’ stories about their
disease and to try to use a model of cooperation rather than coercion. An
example from the book I remember is when Foua explained to Fadiman that she
felt it was important to use both western medicine and neeb, or shamanic
ritual. The Hmong believe that sometimes people get sick due to something that
happens to their soul, or because they encounter an evil spirit called a dab.

Such illnesses require spiritual healing, which can be rendered less effective
by medication. Foua felt that the doctors wouldn’t let them give just a little
medication because they didn’t understand about the soul. Had the doctors let
Lia’s family do so, they might have been able to engage in cultural compromise.

Inviting a tvix neeb to work alongside the doctors who might have been able to
convince the family that the amount of medication prescribed was beneficial.

Throughout
the story Lia Lee struggles with epilepsy, her first seizure occurring at just
three months of age. The violent progression of Lia’s disease, the destruction
of her brain, as well as, the lack of appropriate treatment and break down in
cultures are the foundation of a constant tug-of-war between her doctors and
parents. While reading this book the prevalence of patient safety weighed
heavily on me. Having a culture consistent with patient safety starts at the highest level in a healthcare
organization, and the commitment must be evident to the rest of the
organization. Another section in particular when reading that stood out to me
was when Lia was lying comatose in a hospital bed at Valley Children’s
Hospital. Foua and Nao Kao were able to see her only a few minutes every hour
over the course of nine days. There was a particular critical care doctor that
that was working on Lia, and told Foua that she was removing Lia’s intravenous lines
because she was going to die, her brain was rotten, and she wanted to give Lia’s
medicine to someone else (pg. 151). When I read this, I was at a loss for
words, completely in shock. The use of such language from a medical
professional to the parents of a dying child is just completely insensitive.

Another
theme I noticed while reading this book was power. It was the lack of power
afforded to Hmong refugees yet the amount of power there was here in the United
States. In Laos the Lees had been free to follow their culture and to live
independently, in the United States their freedom was curtailed. Welfare made
them dependent upon others for sustenance, with few jobs available that did not
require English proficiency and other skills they didn’t have. The Lees were no
longer considered the ultimate decision makers for their children and the
doctors had the power to call the police and to access state power which Hmong
parents did not have.

In
an effort to connect the events surrounding Lia’s medical disparities that Anne
addressed in her book into future practice I have to address the reoccurring
themes of patient safety and spirituality again. As a healthcare provider in
general I truly believe that a call to
include basic spiritual concepts in the assessment and treatment of patients is
necessary in order to provide care that truly honors the whole person. For
medical personnel who are not religious or spiritual themselves they should
still be aware of the impact of spiritual issues on health as it relates to
their patient’s particular views on their illness or healthcare needs.

In
September 2011, in recognition of National Wellness Week, the Center for
Integrated Health Solutions published a list of 10 recommended domains for
promoting “whole health, wellness and resiliency.” This list included
“spiritual beliefs and practices” as an important aspect of health
(Wyatt, 2011). Much like the what happened with the Lee family and even other
individuals of other cultures at one time spirituality had become less and less
a consideration for nursing and medical practitioners when working with ill
patients. In some settings addressing spiritual issues had even been looked
upon as inappropriate. With new substantial scientific evidence supporting the
important role of spirituality in health and illness we can see that some
medical providers might be actually causing harm to their patients by
overlooking these spiritual factors. As a way to form more interdisciplinary
healthcare approaches we are also able to utilize the use of Chaplains in
providing spiritual support for our patients.

As
I stated earlier another important theme occurring in this book was cultural
competence, or lack thereof. I was bothered the whole time while reading by the
failure of Western medicine to halt the progression of Lia Lee’s epilepsy. I
understand that because of the lack of interpreters Lia’s medical care was
complicated and her parents were either unable to follow the doctors’
instructions, unwilling to do so, or both. Lia’s parents were unhappy with the
side effects of the medication and did not understand the connection between a
seizure and its effect on the brain, nor the necessity of giving
anticonvulsants.  Once again due in part to their cultural background, lack
of education, and spiritual beliefs to their daughter’s illness. In healthcare,
today the lack of interpreters is still somewhat of an issue. We do have the
availability to iPads, and individuals who are multilingual, however often
times these resources are even more limited in rural settings. There have been
times when family members have been called upon to interpret for their loved
ones, which is not the best medical practice.

Anna
did a great job in writing her book and immersing herself in the Hmong culture
to shed light into what Lia and her family went through. I agree with Anna in
her suggestion that healthcare providers acknowledge other belief systems. This
could go a long way in improving the outcomes for patients from different
cultures. Cross-cultural programs, and integrating individuals to work
alongside western health care providers could have a tremendous impact on
patient’s healthcare and spiritual wellbeing during sickness.

 

 

 

 

 

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