Chapter 5: Take as Directed
Between the ages of 8 months and four and a half years, the Lees brought Lia to the hospital dozens of times. Her record nearly always noted the communication difficulties brought about by language differences. Foua and Nao Kao learned to recognize the signs signaling the onset of Lia's seizures, such as twitching, staring, or hallucinating. Her seizures became more frequent and severe as she grew, with symptoms including severe arching of her back, thrashing limbs, halting of breathing, foaming at the mouth, vomiting, urinating, or defecating. In the most serious episodes, Lia would remain unconscious for twenty minutes or longer as she seized, a condition labeled "status epilepticus." She would remain in this state until she received large doses of anticonvulsant medication intravenously, which, in her convulsing state, was very challenging to do.
Lia was treated both by residents and by the two supervising pediatricians, Neil Ernst and Peggy Philp, one of whom always came to the hospital when Lia was in the emergency room. The two were highly compassionate, capable, and hard-working physicians who were married to each other, had an excellent reputation with colleagues and residents, and who did whatever they could to provide Lia with good medical care.
Lia was quite overweight, which compounded the problem of administering intravenous medications. Doctors had to cut open and tie off several of her veins in an attempt to place a needle. They would tie the limb with the needle to a board and sometimes even tie Lia to her crib so that the IVs would last longer. Her father didn't understand why the doctors tied her up. He also mistrusted them after Lia fell out of her crib one night and got a large bump on her head, and the nurses responded by caging her inside her crib with a net. His reaction would have been to have her sleep next to him or his wife, where they could comfort her.
Aside from this incident, Lia's parents were nearly always with her when she was at the hospital. The nursing staff came to know her well. She often ran up and down the corridor when she was well enough to walk, barging into rooms and throwing things on the floor. She couldn't be left alone, as she could get out of anything and hurt herself even with tied wrists. At the same time, she was very affectionate and always wanted to be held.
Lia disliked swallowing her medications, and her parents were also uncertain about what they were supposed to give her. Neil and Peggy didn't know if she continued to have seizures because she wasn't taking enough medication or in spite of it, and whether her parents weren't giving her the proper doses because they hadn't understood the directions or because they didn't want to. Therefore, beginning in June 1983, public health nurses accompanied by interpreters began visiting the Lees home to attempt to improve the family's compliance with administrating her medication. They tried a variety of methods to make the regimen easier to understand, including stickers to indicate whether to administer a pill in the morning, afternoon, or evening, charts indicating the proper fraction of pills to give, and a calendar with samples taped next to each sticker. Lia had an appointment nearly every week before which (and sometimes after which) she had her blood drawn, and her medical regimen was constantly changing. The parents were clearly unhappy with Lia's medical care and may not have understood the connection between a seizure and its effect on the brain, nor the necessity of giving the medication. They particularly disliked giving pills with side effects, such as diarrhea or changing Lia's "spirit," and often refused to give particular kinds. Sometimes they also gave too much medication. The nurses concluded that the Lees were being noncompliant for both reasons: they didn't understand the instructions and they didn't want to give the drugs.
The Lees were not incorrect in noting that drugs sometimes have dangerous side effects. Of Lia's medications, phenobarbital can cause hyperactivity and possibly lower I.Q. scores, Dilantin can cause abnormal hair growth and bleeding and puffing of the gums, and too much phenobarbital, Dilantin, or Tegretol can make someone unconscious. By April of 1984, Lia's father believed the medicines were actually causing her seizures and fevers.
While most patients accept the fact that their doctor is doing his or her best to treat them, doctors dealing with the Hmong cannot take this attitude for granted. If they continue to force compliance with a regimen that patients believe to be harmful, they may run up against Hmong stubbornness. In one case, parents threatened to commit suicide if doctors continued drawing their child's blood and backed down only when a Western-educated Hmong leader explained through the family hierarchy that blood regenerates, the tests were necessary, and the child would not be harmed. In another, a young Hmong boy with testicular cancer required chemotherapy, which made him sick. His parents refused to bring him for further treatment, which prompted his doctor to call Child Protective Services. Police came to the house to take the boy away, at which point the mother threatened to kill both herself and her two daughters.
The Lees' noncompliance had devastating effects. After they stopped giving her medication for three months, Lia had a seizure so severe that the phenobarbital given in treatment caused her to stop breathing. The resident on duty, Dan Murphy, had to place a breathing tube down her throat and have her transferred to a better-equipped facility 65 miles away. Lia was able to breathe on her own only after 24 hours on a respirator. By the age of 20 months, Lia also began to show signs of mental retardation, although testing her intelligence was difficult due to her hyperactivity and the challenges of translation.
Neil and Peggy felt a lot of anger at the parents for their noncompliance, even though they recognized that what they really needed was compassion. It was difficult to work so hard and to face resentment rather than appreciation. Furthermore, the Lees hadn't paid for any of Lia's medical care, yet they didn't seem to appreciate the generosity either of the state insurance program, Medi-Cal, nor of Neil and Peggy's services, which Medi-Cal reimbursed at a very low rate. Lia's parents showed no deference to the doctors' many years of schooling, their awards, or even the hours they spent educating themselves about the Hmong. It was also agonizing for them to watch Lia fail to receive the treatment they believed would let her live a normal life.
In November 1984, when Lia was two, Foua gave birth to her fifteenth child. Neil and Peggy were concerned the child would be born with health problems, but she was fortunately a healthy baby girl. At the same time, the birth strained the parents' already taxed energy.
In April 1985, after receiving word that the Lees were once again modifying Lia's medical treatment, Neil sent a note to Child Protective Services recommending foster home placement to ensure compliance with medication. CPS subsequently ordered Lia’s removal from her parents' custody.
Chapter 6: High-Velocity Transcortical Lead Therapy
For the Hmong, everything is connected: medicine, religion, society, even economics and music. Their view seems to be the opposite of the prevailing American view, in which medicine has been divided into ever-smaller sub-specialties. It was thus no wonder that American doctors failed to satisfy Hmong patients, not understanding their beliefs that diseases are caused by lost souls and cured by sacrificing chickens or respecting their taboos against blood tests, spinal taps, surgery, anesthesia, and autopsies as guardians of their souls, for none of the doctors had had any instruction in cross-cultural medicine.
When asked their opinions of medical care in Merced, educated Hmong expressed their beliefs that you must let doctors examine your body in order to stay in the United States, that the rich are treated right away while the poor have to wait, that they will get sent to jail if they change their mind about having surgery, and that the doctors look down on refugees, want to study them rather than cure them, and ignore their wishes. Some even believe the student doctors kill the poor. None of these beliefs are true, of course. Most of the doctors went into family medicine for altruistic reasons. They know the Hmong don't like them, though, and this upsets them - enough that some doctors jokingly suggested treating the Hmong with ‘high-velocity transcortical lead therapy’ -- i.e., shooting the patient in the head.
When Hmong refugees from Laos began arriving in Merced County in the early 1980s, doctors didn't know what to think of them. They wore strange clothes, amulets around their necks and cotton strings around their wrists, and smelled of herbs. They brought their own food and medicines to the hospital, played loud musical instruments, and sometimes wanted to slaughter animals. Children sometimes had quarter-sized lesions on their arms and abdomens from dermal treatments, a traditional form of healing that involved rubbing the skin with coins or creating a vacuum by igniting cotton soaked in alcohol under a tiny cup.
Doctors had many ways to make errors. They could insult a family by addressing an Americanized teenager rather than her non English-speaking father, trying to maintain friendly eye contact, touching an adult on the head without permission, or beckoning with a crooked finger. They could also lose their patients' respect by not acting like authority figures, as the young residents did when wearing jeans under their coats, carrying their medical charts in backpacks, or introducing themselves by their first names. They could also get in trouble by failing to consider Hmong religious beliefs. For example, it was important not to comment out loud on a baby's beauty in case a dab overheard and tried to snatch the baby's soul. At the same time, trying to be culturally sensitive didn't always work, as one doctor discovered when he recommended a patient see a tvix neeb and was met with reluctance.
The Hmong were not only trickier than other patients; they were also sicker. Many had acquired injuries or illnesses during the war in Laos or its aftermath. While the Hmong (like other refugees) were supposed to be screened for eight contagious diseases and eight mental conditions before being allowed to migrate to the United States, the testing was very brief, it was possible to purchase a clear X ray on the black market to prove absence of TB, and despite regulations, there was no screening for "mental conditions." While most states have refugee health programs, many Hmong chose not to be screened after arrival, so they first encounter the medical system when they have an emergency.
Merced's public health department provides voluntary screening for tuberculosis and intestinal parasites for new arrivals and refers patients who are pregnant or who have obvious health issues to the hospital. They have also dealt with issues such as persuading a family to raise rabbits instead of rats for food or investigating the reason sixty Hmong arrived at the emergency room with diarrhea - they had all partaken in a feast of pig infected with salmonella.
While most of the regulars had become familiar with the Hmong by the mid-eighties, every year there were new residents who had to start from scratch. They grew to dread the diagnostic interview, for even if an interpreter were present, there were often no direct translations for medical terms and the interviews took an enormously long time. The Hmong also did not possess the same conceptual background knowledge as most other patients. They couldn't understand that diabetes was caused by a faulty pancreas, for instance, because they didn't have any idea what a pancreas was. The Hmong, for their part, wanted to be told something was wrong and be given something - preferably a fast-acting antibiotic - to make their pain go away. The doctors wanted to know more about the pain; the Hmong would just say that it hurts. Many Hmong have physical ailments that are the result of emotional problems, caused by the psychological traumas they suffered. This pain was real, but doctors could do little about it since it didn't have a physical cause. Some doctors prescribed a "Hmong cocktail" of anti-inflammatories, antidepressants, and vitamin B12, but the patients rarely got better.
Hmong families sometimes felt cheated if they left the clinic without a prescription, but if they did receive one, nobody knew if they would follow it. Patients have failed to understand measurements, refused to swallow a pill because they didn't like the color, cut dosage in half because they thought medicines designed for large Americans would be too much for them, or taken double the dose in order to get well faster. In one case, a family unintentionally killed their infant by administering too much motion sickness medicine on an airplane.
When Hmong were admitted to the hospital, there were often a dozen or more relative who would visit. Decisions took hours, particularly for procedures such as surgery that violated Hmong taboos. Wives had to ask their husbands, husbands had to ask their elder brothers, elder brothers had to ask clan leaders, and so on, and often permission would be refused. They take time to think things over and won't do something simply because a doctor tells them to. One woman nearly didn't get life-saving surgery to remove a Fallopian tube because her relatives didn't want her to risk something that would keep her from having more children; another insisted on giving birth at home despite requiring a cesarean section. (The mother survived, but the baby died from oxygen deprivation.)
Most Hmong women did go to the hospital to give birth, as they erroneously believed that babies born at home would not become U.S. citizens. Doctors were more likely to see Hmong in this context than anywhere else, simply because the Hmong had so many children. In the mid-eighties, the average fertility rate of Hmong women in the U.S. was 9.5 children, compared to 1.9 for white Americans and 2.2 for black Americans. There are many reasons for this high rate: Hmong women usually marry in their teens, they are skeptical of contraception, and they value children highly, both out of love and because children were traditionally needed to till the fields and perform religious rites. Having many children also helped to counteract the high number of deaths from the war and the high childhood mortality rate in Laos, and some Hmong harbored hopes that their people would return to Laos one day to defeat the communists. This high birth rate did not endear the Hmong to medical staff members who had strong ideas about family planning. The Hmong, no more fond of doctors than the doctors were of them, tended to avoid prenatal care and usually arrived at the hospital at the last minute. They made so little noise during labor that staff often failed to bring them to the delivery tables. They were different in other ways as well, such as squatting during delivery and refusing to allow incisions to enlarge the vaginal opening. Most of their doctors felt horribly when they were forced to provide suboptimal care because of the Hmong's refusal to consent to certain procedures, and many suffered from high levels of stress.
Tensions build as Lia's health declines and the conflicts between her parents and doctors become more pronounced. Chapter 5 outlines Foua and Nao Kao's noncompliance with Lia's medical regimen, while Chapter 6 explains more generally Hmong medical beliefs and practices and the ways in which these have caused difficulties for medical staff. Fadiman shares both parties' point of view, presenting both the frustrations the Hmong feel with American medicine and the terrible stress felt by physicians who view their patients as both noncompliant and non-appreciative. She tries hard to be objective yet maintains a western bias, assuming that readers understand why physicians try to indoctrinate patients into the medical model but need an explanation for why the Hmong behave as they do.
In Chapter 5 we meet Neil Ernst and Peggy Philp, Lia's primary doctors. While some physicians are willing to compromise their own standards in order to secure their patients' cooperation, Neil is uncompromising by nature and would never consider applying a lower standard of care for his Hmong patients. If we continue to view the story as a tragedy, this inability to compromise can be considered to be Neil's hamartia, or "fatal flaw" (see Analysis, Ch. 1-2). His idealism makes him a conscientious and excellent doctor; however, it also causes him to insist Lia receive the complicated regime of medications that he would have prescribed for anyone else, despite the fact that her parents cannot read or understand English, don't use clocks, and have a very different "explanatory model" of Lia's illness. It also leads him to take Lia from her parents and place her in foster care. In this interpretation both the Lees and their doctor share the same "fatal flaw" - an inability to compromise - which exacerbates the conflict between them, although the Lees' trait is cultural, while Neil's is an aspect of his personality (albeit one which is valued by the medical profession).
To their credit, Neil and Peggy do their best to try and understand the Lees, learning what they can about the Hmong by reading old National Geographic articles. However, at least one reviewer argues that this magazine represents a Western anthropological view of the "other," overlooking the other's intellectual input about them and instead reflecting white values and judgments. Thus, their research may ironically help Neil and Peggy to adopt fixed narratives about the Hmong.
The theme of power runs through these chapters, as doctors are assumed to be more powerful than their patients. Resident Dan Murphy explains that "[the Hmong] won't do something just because somebody more powerful says do it" (71), vocalizing this view. He justifies this power imbalance by noting the immense amount of time and effort doctors have invested in their training. However, one could argue that it is instead a kind of racism endemic in the United States. Starting in the 1880s, for example, Asians were seen as bringing disease and pollution; this idea was given its own name, the "Yellow Peril," and eventually led to the curtailing of rights for many Asian immigrants. In the doctors' eyes, the Lees, too, pose a danger to health and welfare, even if only those of their daughter Lia. To eliminate the threat, they, along with other Hmong, need to be "socialized" and taught Western norms. The knowledge the Hmong have already acquired through their own experiences is ignored.
These chapters bring up a second aspect of power: the traditional power structure among the Hmong community, in which wives defer to husbands, who defer to elder brothers, who defer to clan leaders, and so on. Doctors complain that the requirement to consult with so many people serves as an obstacle for good medical care when decisions need to be made quickly. However, physicians who have acquiesced to working with this power structure instead of trying to fight it have had far more success. For example, parents who were upset at the frequent drawing of blood of their child backed down when a Western-educated Hmong leader explained the necessity and safety of the blood tests, communicating this information through the family hierarchy. There is a clear lesson to be learned: if doctors wish for Hmong patients to respect their expertise and accept their instructions, they must be willing to respect the Hmong hierarchy.