In a perfect world, race, ethnicity, and culture would not affect the medical care a person receives. But this is far from a perfect world. All cultures have systems of health beliefs to explain what causes illness, how it can be cured or treated, and who should be involved in the process. The extent to which patients perceive patient education as having cultural relevance for them can have a profound effect on their reception to information and care provided and their willingness to use it. In broader terms, historical heritage influences the medical care people receive. The International Council on Monuments and Sites describes historical heritage as “an expression of the ways of living developed by a community and passed on from generation to generation, including customs, practices, places, objects, artistic expressions and values.”
The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures is a 1997 book by Anne Fadiman that chronicles the struggles of a Hmong refugee family from Laos, the Lees, and their interactions with the health care system in Merced, California. The book tells the story of the family’s daughter, Lia Lee, who was diagnosed with a severe form of epilepsy and the culture conflict that is a barrier to her treatment. There were miscommunications about medical dosages. The parents refused to follow prescribed treatments due to mistrust and misunderstandings. The staff were not able to develop empathy with the traditional Hmong lifestyle or try to learn more about the Hmong culture. The result, throughout a pretty substantial period of time, is Lia’s condition worsens.
As I read the book, I often felt the frustration shared by the staff trying to work with Lia and her family. But as the story, so richly written, progressed I found myself seeing things through the family’s lens. Their culture and traditions were quickly dismissed and considered unimportant. It was appalling that something as simple as an interpreter wasn’t utilized more consistently and that multiple physicians failed to ask the Lee’s what was important to them.
Health literacy, communication, ethics, and health disparities are all potential barriers to receiving quality medical care. Here are examples of how historical heritage affected each of these areas and ultimately deterred the Lee family negotiating the healthcare system.
Health literacy is the degree to which individuals have the capacity to obtain, process, and understand basic health information needed to make appropriate health decisions. If there is a low literacy level, people can’t fully participate in their care.
The book begins with a great example of how literacy, understanding, can affect decisions. Lia was 3 months old when she suffered her first seizure. In the Hmong culture it is known as quag dab peg which means “the spirit catches you and you fall down” and in Hmong-English dictionaries, translates to epilepsy. The Hmong consider qaug dab peg to be an illness of some distinction. Hmong epileptics often become shamans. Their seizures are thought to be evidence that they have the power to perceive things other people cannot see, as well as facilitating their entry into trances, a prerequisite for their journeys into the realm of the unseen. In Western medicine tradition, a parent would immediately seek medical attention for their child. In the Lee’s circumstance, Lia had over 20 seizures in a 2-month period with medical care only sought after twice. (p. 20-22).
In a second example, Jeanine was a social worker at the hospital treating Lia. Believing that Lia’s behavioral problems could be attributed to a lack of daily structure, Jeanine posted a daily schedule on the Lees’ wall. Despite their help in reading it, this schedule never fully worked. The Lee’s were accustomed to the cock-crow system rather than to the clock. Another fruitless effort was a list of instructions about how to administer Tylenol and Valium to prevent febrile seizures when Lia spiked a temperature. Jeanine went to great trouble to have it translated into swirly Lao script, failing to realize that no one in the Lee family spoke or read Lao. (pg. 115-166)
Competing demands, lack of privacy, and background noise are all potential barriers to effective communication between staff and patients. Patients’ ability to communicate effectively may also be affected by their condition, medication, pain and/or anxiety. Now add language differences and misinterpretations stemming from staff and patients’ cultural values and beliefs and it is evident that a significant barrier exists.
We see the first of many communication barriers when Lia is first taken to the hospital on October 24, 1982. By the time that Foua and Nao Kao arrived at the hospital, Lia had stopped seizing. They had no way of telling the doctor what happened. A chest x-ray was completed with showed early signs of bronchopneumonia. The underlying cause, the seizure causing aspiration) was not able to be communicated due to the language barrier. This cycle repeats itself a second time with another missed diagnosis and antibiotics prescribed the second time when Lia presented again to the hospital post seizure on November 11th. Pg. 25-26
Sometimes, the communication barrier might not cause a mistake to be made, but it might just make an already difficult situation horrific. After experiencing a detrimental seizure, Lia was transferred to Valley Children’s Hospital in Fresno. After several days, a physician disconnected the intravenous lines that were connected to Lia. That physician was following orders from Neurologist Terry Hutchison. Hutchison had discontinued the anticonvulsants when Lia’s brain showed no more activity, it wasn’t possible for her to seize any longer. Foua was furious and stated “The doctor seemed liked she was a good doctor, but she wasn’t. She was really mean. She came in and she said that Lia was going to die and then she took out all of the rubber stuff and she said Lia’s brain is all rotted and she is going to die. So she wanted to take Lia’s medicine away from her and give it to someone else.” The communication barriers created a horrific experience. Pg. 150-151
Ethics can become a barrier in healthcare when intersecting with historical heritage. Most clinicians at the local hospital had little understanding of Hmong health-related beliefs, values, and behaviors. Clinicians’ shared habit of thinking of the Hmong as noncompliant made it difficult for them to consider other possible explanations, such as medical error, for bad outcomes. We see this theme throughout the book.
We also see other examples. “Of all the trials to which Lia’s body was subjected, the spinal tap—a routine and only moderately invasive attempt to find out if the sepsis had passed from her blood into her central nervous system—was the one that most distressed her father, who heard about it after it was performed. “The doctors put a hole in her back before we got to the hospital,” he said. “I don’t know why they did it. I wasn’t there yet and they didn’t give me any paper to sign. They just sucked her backbone like that and it makes me disappointed and sad because that is how Lia was lost.” In other words, Nao Kao attributed Lia’s deteriorating condition to the spinal tap, a procedure many Hmong believe to be potentially crippling both in this life and in future lives.” (pg 148) Was it possible to wait until the family gave consent? Or did the view of the family’s non-compliance lead them to performing the spinal tap before someone had the chance to decline it?
Lia’s physician believed his job was to practice good medicine; the Lees’ job was to comply with his orders.. He believed that the lack of compliance constituted child endangerment, which is a form of child abuse, and Lia was removed from her family by Child Protective Services. He has since considered other options in retrospect, such as arranging for a nurse to visit the Lee house three times every day to give Lia her medicine or enlisting the help of Hmong community leaders to increase parental compliance. (pg 79)
The CDC describes health disparities as “preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health that are experienced by socially disadvantaged populations.” A health disparity exists when specific groups within a population are disadvantaged from a health outcomes perspective, when compared with other groups in the same population.
One example of a health disparity in our story concerns Lia’s medication. Lia’s medications were changed 23 times over the course of four years. Foua and Nao Kao, of course, had no idea what the labels said. Even if a relative or the hospital janitor was on hand to translate when a bottle was handed to the Lees, they had no way of writing down the instructions, since they are illiterate in Hmong as well as English; and because the prescriptions changed so frequently, they often forgot what the doctors told them. Measuring the correct doses posed additional problems. Liquids were difficult because the Lees could not read the markings on medicine droppers or measuring spoons. Pills were often no easier. At one point, when Lia was two, she was supposed to be taking four different medications in tablet form twice a day, but because each of the pills contained an adult dose, her parents were supposed to cut each of the tablets into fractions; and because Lia disliked swallowing the pills, each of those fractions had to be pulverized with a spoon and mixed with food. If she then ate less than a full helping of the adulterated food, there was no way to know how much medicine she had actually consumed. (pg 47) If this medication were taken as prescribed from the beginning, would Lia’s seizures been prevented?
In another example, “once a child is removed from parental custody, Child Protective Services must file an explanatory petition within two days, and a detention hearing is usually scheduled for the day after the petition is filed. Nao Kao Lee appeared in court on June 28, 1985, accompanied by a public defender. No one remembers whether an interpreter was there as well. The judge approved CPS’s petition to detain Lia; Nao Kao, who was unaware that it was permissible to object, is recorded as assenting. The plan detailed in the Disposition of Case #15270 called for Lia to remain in foster care for six months, the minimum time that Neil estimated would be needed to stabilize her seizure disorder. Her parents would be permitted weekly visits, though these did not start until she had been away from home for more than a month. In fact, following a policy, common at the time, that was intended to prevent distraught parents from immediately retrieving their children, CPS did not inform Foua and Nao Kao of their daughter’s whereabouts for several weeks.” (pg 84) While it is very difficult for anyone to navigate the legal system, it was impossible for the Lee’s. If they had been able to communicate their struggles with the pediatrician, would this case even been referred to CPS? If they had had an interpreter present, would Nao Kao have objected to the petition?
As I continue my journey in healthcare, I hope to remember the journey of the Lee family. I will strive to raise my unconscious bias to the surface and and embrace an environment of inclusivity and diversity. There are many resources available for learning about cultural competence and different cultural experiences. Euromedinfo is focused on patient education from a nursing perspective. This website provides a good resource for conducting a cultural assessment with a patient. Instead of having to learn about every culture and tailoring resources for each, it guides you through a process to assess the culture with the patient. https://www.euromedinfo.eu/how-culture-influences-health-beliefs.html/ .
I also found the American Medical Association very useful. The following journal article really spelled out some of the ethical issues that can arise due to historical heritage. It was refreshing to see the expectation of accountability placed on the providers to reduce their biases. Too often I believe we expect our patients to “meet us in the middle”. https://journalofethics.ama-assn.org/sites/journalofethics.ama-assn.org/files/2019-07/msoc1-1706.pdf
