by Anne Fadiman
Because neither of the father’s demands endangered the health of the mother or the child, Kris Hartwig complied. But what if a patient (or her husband or father or brother, who was more likely to make the decision) refused an episiotomy that her doctors believed would prevent an imminent fourth-degree laceration—a laceration that the husband or father or brother might then forbid the doctor to stitch up? Or, worse still, what if the fetal monitor indicated that the baby’s heartbeat had dangerously decelerated, and the family refused to sign a consent form for an emergency cesarean section?
I asked Raquel Arias—by common consent, the MCMC obstetrician with the most dazzling combination of skill and empathy—what she did when the wishes of her Hmong patients conflicted with the standard of medical care she was accustomed to providing. “I have the same standard of care for the Hmong as I have for everyone else,” she said. “My hands are just tied to provide it. So I give them suboptimal care. Sometimes you can find middle ground and try to understand where they are coming from, which is hard, but not impossible. Sometimes you can persuade them to do what you want. You keep telling them stuff and if you want it bad enough then maybe it’ll work. It is when the well-being of the fetus is in jeopardy—a fetus that in our perspective is a full person who should have the rights and privileges that all citizens of this country have—and the beliefs and customs of the family seem to be going against what you believe is in the fetus’s best interest, that you have the worst conflict. When that happens, it is an unbelievably terrible situation to be in. It is awful. It is not the kind of tension you feel when you get mad at someone from your own background who is doing something they know is bad, like smoking or drinking while they are pregnant. This is a different kind of tension because they don’t know that they are doing something bad. According to their beliefs and principles, they are trying to protect the mother and the baby and their way of life. And what you think is necessary happens to be exactly the opposite of what they think is appropriate.”
Listening to Raquel, I was struck, as I often was, by the staggering toll of stress that the Hmong exacted from the people who took care of them, particularly the ones who were young, idealistic, and meticulous. During Hmong labors that were going badly, Raquel bit her fingernails (which were impeccably polished with Purple Passion enamel) to the quick. Sukey Waller, a psychologist at Merced Community Outreach Services who was highly regarded in local Hmong circles, went through a period of throwing up before going to work each morning. Benny Douglas, a resident who was known for his imperturbable calm, was so upset by one problematic case (an elderly Hmong woman had gastric cancer, and Benny hadn’t been able to persuade her sons to consent to her surgery) that he developed severe insomnia. I remember seeing Benny slumped forlornly in a chair, alone in the residents’ call room at dusk, dictating his notes about Mrs. Thao into a little tape recorder while he drank cup after Tommee Tippee cup of coffee and reflexively picked at his eyelashes.
When I asked Dan Murphy why he thought caring for the Hmong caused so much stress, he said, “People in the early years of their medical careers have invested an incredible amount of time and energy and pain in their training, and they have been taught that what they’ve learned in medical school is the only legitimate way to approach health problems. I think that is why some young doctors go through the roof when Hmong patients reject what we have to offer them, because it intimates that what Western medicine has to offer is not much.”
The only doctor I met in Merced who seemed untroubled either by his encounters with the Hmong, or by the question of whether he was providing optimal care, was Roger Fife, a family physician who served his residency at MCMC in the early eighties and then joined the staff of a local private hospital. Dr. Fife estimated that seventy percent of his clientele was Hmong, a fraction unequaled in any other practice in town. When I asked him why he was so popular, he was able to offer no explanation other than “Maybe I talk slower than the other doctors.” His patients have no problem explaining. Every Hmong I asked said exactly the same thing: “Dr. Fife doesn’t cut.” On the whole, that was true. Dr. Fife generally did not perform episiotomies on Hmong women, though he did not know why they didn’t want them, never having asked. He avoided cesarean sections whenever possible, and he had particularly endeared himself to his Hmong patients by handing them their babies’ placentas in plastic bags whenever they requested them, though he had no idea what they did with them and said he had never been curious. Roger Fife is not held in high esteem at MCMC. “He’s a little thick,” one resident told me. “He’s not the most intelligent graduate our program has ever had,” said another. “He’s an adequate physician,” said a third, choosing his words carefully. Though I doubt that even the most ecumenical of Merced’s doctors would wish to have more Hmong patients, still it must have been galling for these residents to realize that the Hmong community overwhelmingly preferred a doctor whose standard of care they believed to be inferior to their own. Roger Fife happened to espouse a philosophy that carried more weight with the Hmong than any degree of knowledge, intelligence, or technical skill. When I asked him why he didn’t usually force his Hmong patients to comply with conventional American medical practices, he shrugged and said, “It’s their body.”
7
Government Property
Neil Ernst was a doctor of a different breed. It would have gone completely against his grain to apply two different standards of care to his patients: a higher one for the Americans, a lower one for the Hmong. But might Lia Lee have been better off if her family had brought her to Roger Fife? Might Neil actually have compromised Lia’s health by being so uncompromising? That latter question still bothers him. For example, if Lia’s prescriptions hadn’t been changed so often, her parents might have been more likely to give her her medications, since they would have been less confused and more confident that the doctors knew what they were doing. Neil was pretty sure, however, that because Lia’s condition was progressive and unpredictable, he could treat it best by constantly fine-tuning her drug regimen. If he had chosen a single pretty-good anticonvulsant and stuck with it, he would have had to decide that Lia wasn’t going to get the same care he would have given the daughter of a middle-class American family who would have been willing and able to comply with a complex course of treatment. Which would have been more discriminatory, to deprive Lia of the optimal care that another child would have received, or to fail to tailor her treatment in such a way that her family would be most likely to comply with it?
A decade ago, that is not the way Neil looked at the situation. He never seriously considered lowering his standard of care. His job, as he saw it, was to practice good medicine; the Lees’ job was to comply. Lack of compliance constituted child endangerment, which is a form of child abuse. He postponed calling Child Protective Services for as long as he could, giving Lia’s parents every possible chance to reform, talking the case over with his wife nearly every night, worrying that “what happened in Fresno” might happen in Merced. (He and Peggy had both heard, and believed, the rumor about the Hmong father in Fresno who hanged himself in his prison cell after being unjustly arrested for child abuse.) Neil finally decided that he had no choice but to request that Lia be placed in foster care. Other options he has considered 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, either seemed at the time to have insuperable bureaucratic obstacles or simply didn’t occur to him. When I asked Neil whether, once he had made up his mind, he continued to brood about the effect his decision would have on the Lee family, he said, “Yeah, sure. I mean, you always do. But you get so single-minded about the child’s welfare that you can pretty effectively suppress any kind of bad feelings you have about what you do to the parents. And there was another part—and here I am speaking for myself, not for Peggy—which is that I felt that there was a lesson that needed to be learned. I don’
t know if this is a bigoted statement, but I am going to say it anyway. I felt it was important for these Hmongs to understand that there were certain elements of medicine that we understood better than they did and that there were certain rules they had to follow with their kids’ lives. I wanted the word to get out in the community that if they deviated from that, it was not acceptable behavior.”
Once he had determined that Lia’s parents were endangering her health, it was fully within Neil’s legal rights to file a report with Child Protective Services. In fact, he might have committed a crime if he hadn’t filed a report. Failure to report child abuse is a prosecutable offense in forty-four states, including California. Because physicians —along with other health care workers, teachers, day-care employees, and police officers—are especially likely to come across evidence of abuse, all fifty states have immunity clauses in their child welfare laws that protect these groups from civil or criminal charges after they file abuse reports, even if they are found to be wrong.
The fact that Lia’s parents refused to give her the medications at least in part because of cultural or religious reasons (of which Neil was only hazily aware) would probably have cut little ice in court, even if the Lees had been savvy enough to try to defend their actions. If a child had not been involved, things would have been different. In cases involving competent adults, the principle of autonomy almost always takes legal precedence over the principle of beneficence, which means, for example, that a Jehovah’s Witness has a right to refuse a blood transfusion, or a Christian Scientist a course of chemotherapy, even if he or she dies as a result. But with a minor, the state has the right— indeed, the obligation—to force the patient to comply with a life-saving treatment, even if it is forbidden by the family’s religion. “Parents may be free to become martyrs themselves,” wrote Justice Robert Jackson in a 1943 Supreme Court decision. “But it does not follow that they are free, in identical circumstances, to make martyrs of their children.” Several parents who belong to fundamentalist sects have been jailed after the deaths of children whom they had attempted to cure with faith healing; no Christian Scientist has yet been imprisoned, though several have been convicted of involuntary manslaughter or child endangerment and sentenced to a combination of fines, probation, and community service.* If parents who practice these relatively mainstream religions have so consistently failed to sway the courts, it is doubtful that a judge would have been favorably impressed had the Lees informed him that they were shamanistic animists who believed their daughter’s illness was caused by the loss of her soul and could be treated most effectively by animal sacrifice.
Neil never had any desire to have Lia’s parents prosecuted, and no legal action was ever taken against them. All he wanted was to get Lia out of their hands and into the stewardship of someone who would administer her medications exactly as he prescribed them. On May 2, 1985, she was placed temporarily in a foster home run by two Mennonite sisters who, whenever she became hyperactive, strapped her into an infant car-seat on the living room floor. After two weeks, she was returned home and her parents were given one last chance. Blood tests continued to show that they were giving her less than the prescribed dose of Tegretol. At this point, the Merced Department of Child Protective Services filed Petition #15270 with the Superior Court of the State of California, “In the Matter of LIA LEE, a Person coming within the Provisions of the Juvenile Court Law.” The petition began:
Your petitioner is informed, believes and therefore alleges,
(1) That the above named minor resides at: 37 East 12th St., Apt. A, Merced, California.
(2) That said minor is two years 11 months of age, having been born on the 19th day of July, 1982.
(3) That said minor comes within the provisions of section 300 Subdivision A of the Juvenile Court Law of the State of California, as follows: Said minor is in need of proper and effective parental care and has no parent willing to or capable of exercising such care and control. Said minor is an epileptic with a complex seizure disorder, and the parents are administering sub-therapeutic medication levels. As a result of the parents’ failure to comply with medication instructions, said minor has had multiple hospitalizations and severe seizures which have been life-threatening. The doctor states that said minor needs to be removed from the parental home at this time to preserve the life of said minor. There is a substantial danger to the physical health of said minor and there are no reasonable means by which said minor’s physical health can be protected without removing the minor from her parents’ physical custody.
It concluded:
WHEREFORE, your petitioner prays that this Court declare said minor to be a Dependent Child of the Juvenile Court.
On June 26, Lia was removed from her home again, this time for a placement of at least six months. Her parents were not notified in advance that she was going to be taken. When the CPS workers arrived, Foua was out of the house, visiting relatives. Several years later, Nao Kao told me, through an interpreter, what had happened. (He was under the impression that the social workers, who were accompanied by a Hmong interpreter named Sue Xiong, were police officers.) “The police came to take Lia away. Sue told the doctor that we didn’t give Lia any medicine and that is why the doctors got mad and they came to take Lia away. I was very angry. I almost killed the translator. I said, This is my child and I love her. The police said for six months Lia is government property.”
Foua told me, “When I came home my husband told me that they took the baby and he said that they didn’t tell them where they took the baby. I didn’t know any English so I didn’t know what to think or what to say. I told my elder relatives, but they said, Well, if those people came to take her, then you can’t do anything. I cried so much that I thought my eyes would go blind.”
It was interesting to me that almost none of the MCMC residents—even those who had taken care of Lia many times in the emergency room and, years later, could recall the medical aspects of her case in minute detail—were aware, until I told them, that Neil had arranged to have Lia removed from her family. When they heard about it, every one of them disagreed with his decision, though none of them could suggest a better alternative. Neil had not deliberately concealed what had happened. It was simply not his habit to discuss emotionally charged topics, especially ones about which he felt apprehensive or ambivalent, with anyone but his wife. When I told Dan Murphy about Lia’s placement in foster care, he was astounded. “Neil must have been just desperate to do something like that,” he said. “That’s the first time I’ve ever heard of a child being taken away from good caretakers. You know, it’s usually somebody who is willfully harming their child, either through extreme neglect or through actually doing them damage, but Lia’s parents really loved their kid. If I was in another country and somebody took my kid for reasons that I couldn’t understand, I would at least start considering violent alternatives, I really would.”
In Merced’s Hmong community, especially among the Lee and Yang clans, everyone knew about what had happened. The news of Lia’s disappearance confirmed what many people had already suspected, that doctors were not to be trusted and that they were in league with other coercive authorities—a lesson of sorts, but not the one Neil had in mind. Long after the event, I asked Kia Lee and Koua Her, two Hmong interpreters who worked for the public health department, what they had thought of the matter. (Kia is a woman and Koua a man.) They both remembered it well. “Maybe they should not take Lia away,” said Kia diplomatically. “Maybe this was not right. The parents not want to hurt the child. They try very hard to be good parents. They lost many child in Laos and they love this child very very much. In Laos, the parent have one hundred percent responsibility over the child. How can you say you can take it away unless it is orphan?” Koua said more sharply, “It was not necessary for CPS to take the kid. If they don’t care about the kid, okay, but parents love the kid more than others in the house. The mother was crying and crying all the time. The father he was not crying, he was v
ery angry. Hmong men do not cry even if you feel sad. In Laos, I never heard of this happening in my life.”
In a master’s thesis in anthropology called “Analysis of Cultural Beliefs and Power Dynamics in Disagreements About Health Care of Hmong Children,” a Minnesota physician named Kathleen Ann Culhane-Pera summarized the Hmong attitude toward responsibility in pediatric medical cases:
Hmong parents believe parents are responsible for the child’s welfare and for deciding the child’s medical treatment. Since parents gave birth to the child, provide for the child’s physical needs, and love the child, they are the ones who decide the treatment approach for the child. Because family members love the child and are part of the family, they can assist the parents in making decisions about the optimal actions. Respected family lineage leaders also assist parents in making difficult decisions about serious conditions. But as physicians are not family members, they cannot make decisions for the child…. If doctors take over the parents’ responsibility, and decide to treat without parental permission, then doctors are responsible for the consequences. If the child dies, it is their fault; and how will they repay the parents? Indeed, how will they pay for the life?
As long as doctors and parents continue to negotiate, even if they disagree, the conflict is confined to differences in belief systems. “Once the police are called and court orders are obtained, however, the difficulties escalate to another level,” wrote Culhane-Pera. “The differences are no longer about beliefs. The differences are about power. Doctors have power to call the police and to access state power which Hmong parents do not have.” Because the Hmong have historically been so resistant to authority, they are especially confused and enraged when they are stripped of their power in a country to which they have fled because of its reputation for freedom. As one parent, whose sick child was forced to have a spinal tap after the doctor obtained a court order, told Culhane-Pera, “The way we feel, the United States is more communist than our country is.” Another angry parent who had had a similar experience told her, “No matter how much we don’t know about technology, about human health, physical, but we have seen a lot in experience too. I don’t want any doctor to treat any human being like an animal. Animals, they don’t understand, but human beings do, we do know how to talk. We do understand like anyone who is a human being. We are just refugees but we are human beings like any doctor too.”