The Spirit Catches You and You Fall Down (33 page)

Once I asked Neil if he wished he had done anything differently. He answered as I expected, focusing not on his relationship with the Lees but on his choice of medication. “I wish we’d used Depakene sooner,” he said. “I wish I’d accepted that it would be easier for the family to comply with one medicine instead of three, even if three seemed medically optimal.”

Then I asked, “Do you wish you had never met Lia?”

“Oh, no, no, no!” His vehemence surprised me. “Once I might have said yes, but not in retrospect. Lia taught me that when there is a very dense cultural barrier, you do the best you can, and if something happens despite that, you have to be satisfied with little successes instead of total successes. You have to give up total control. That is very hard for me, but I do try. I think Lia made me into a less rigid person.”

The next time I saw Foua, I asked her whether she had learned anything from what had happened. “No,” she said. “I haven’t learned. I just feel confused.” She was feeding Lia at the time, making baby noises as she spooned puréed
zaub
, the spinachlike green she grew in the parking lot, into the slack mouth. “I don’t understand how the doctors can say she is going to be like this for the rest of her life, and yet they can’t fix her. How can they know the future but not know how to change it? I don’t understand that.”

“Well, what do
you
think Lia’s future will hold?” I asked.

“I don’t know these things,” said Foua. “I am not a doctor. I am not a
txiv neeb
. But maybe Lia will stay hurt like this, and that makes me cry about what will happen. I gave birth to Lia, so I will always take care of her with all my heart. But when her father and I pass away, who will take care of Lia? Lia’s sisters do love her, but even though they love her, maybe they will not be able to take care of her. Maybe they will need to study too hard and work too hard. I am crying to think that they are just going to give Lia away to the Americans.” Foua wept soundlessly. May Ying embraced her and stroked her hair.

“I know where the Americans put children like Lia,” she continued. “I saw a place like that in Fresno where they took Lia once, a long time ago.” (Foua was recalling a chronic care facility for retarded and disabled children where Lia had been temporarily placed, before her year in foster care, while her medications were monitored and stabilized.) “It was like a house for the dead. The children were so poor and so sad that they just cried. They cried all over. One child had a big head and a really small body. Other children had legs that were all dried up and they just fell on the floor. I have seen this. If the Americans take Lia there she will want to die, but instead she will suffer.”

Foua brushed her tears from her cheeks with the back of her hand, in a quick, brusque gesture. Then she wiped Lia’s mouth, far more gently, and slowly started to rock her. “I am very sad,” she said, “and I think a lot that if we were still in Laos and not in the United States, maybe Lia would never be like this. The doctors are very very knowledgeable, your high doctors, your best doctors, but maybe they made a mistake by giving her the wrong medicine and they made her hurt like this. If it was a
dab
that made Lia sick like this in Laos, we would know how to go to the forest and get herbs to fix her and maybe she could be able to speak. But this happened here in the United States, and Americans have done this to her, and our medicine cannot fix that.”

It was also true that if the Lees were still in Laos, Lia would probably have died before she was out of her infancy, from a prolonged bout of untreated status epilepticus. American medicine had both preserved her life and compromised it. I was unsure which had hurt her family more.

Since that night with Foua, I have replayed the story over and over again, wondering if anything could have made it turn out differently. Despite Dr. Hutchison’s revisionist emendation of the final chapter, no one could deny that if the Lees had given Lia her anticonvulsants from the beginning, she might have had—might still be having—something approaching a normal life. What was not clear was who, if anyone, should be held accountable. What if Neil
had
prescribed Depakene earlier? What if, instead of placing Lia in foster care, he had arranged for a visiting nurse to administer her medications? What if he had sought out Blia Yao Moua or Jonas Vangay or another Hmong leader who straddled both cultures, and had asked him to intervene with the Lees, thus transferring the issue of compliance to a less suspect source? What if MCMC had had better interpreters?

When I presented my “what if” list to Dan Murphy one day in the MCMC cafeteria, he was less interested in the Depakene than in the interpreters. However, he believed that the gulf between the Lees and their doctors was unbridgeable, and that nothing could have been done to change the outcome. “Until I met Lia,” he said, “I thought if you had a problem you could always settle it if you just sat and talked long enough. But we could have talked to the Lees until we were blue in the face—we could have sent the Lees to
medical school
with the world’s greatest translator—and they would still think their way was right and ours was wrong.” Dan slowly stirred his lukewarm cocoa; he had been on all-night call. “Lia’s case ended my idealistic way of looking at the world.”

Was
the gulf unbridgeable? I kept returning, obsessively, to the Lees’ earliest encounters with MCMC during Lia’s infancy, when no interpreters were present and her epilepsy was misdiagnosed as pneumonia. Instead of practicing “veterinary medicine,” what if the residents in the emergency room had managed to elicit the Lees’ trust at the outset—or at least managed not to crush it—by finding out what
they
believed, feared, and hoped? Jeanine Hilt had asked them for their version of the story, but no doctor ever had. Martin Kilgore had tried, but by then it was years too late.

Of course, the Lees’ perspective might have been as unfathomable to the doctors as the doctors’ perspective was to the Lees. Hmong culture, as Blia Yao Moua observed to me, is not Cartesian. Nothing could be more Cartesian than Western medicine. Trying to understand Lia and her family by reading her medical chart (something I spent hundreds of hours doing) was like deconstructing a love sonnet by reducing it to a series of syllogisms. Yet to the residents and pediatricians who had cared for her since she was three months old, there was no guide to Lia’s world
except
her chart. As each of them struggled to make sense of a set of problems that were not expressible in the language they knew, the chart simply grew longer and longer, until it contained more than 400,000 words. Every one of those words reflected its author’s intelligence, training, and good intentions, but not a single one dealt with the Lees’ perception of their daughter’s illness. Almost every discussion of cross-cultural medicine that I had ever read quoted a set of eight questions, designed to elicit a patient’s “explanatory model,” which were developed by Arthur Kleinman, a psychiatrist and medical anthropologist who chairs the department of social medicine at Harvard Medical School. The first few times I read these questions they seemed so obvious I hardly noticed them; around the fiftieth time, I began to think that, like many obvious things, they might actually be a work of genius. I recently decided to call Kleinman to tell him how I thought the Lees might have answered his questions after Lia’s earliest seizures, before any medications had been administered, resisted, or blamed, if they had had a good interpreter and had felt sufficiently at ease to tell the truth. To wit:

I thought Kleinman would consider these responses so bizarre that he would be at a loss for words. (When I had presented this same material, more or less, to Neil and Peggy, they had said, “Mr. and Mrs. Lee thought
what?
”) But after each answer, he said, with great enthusiasm, “Right!” Nothing surprised him; everything delighted him. From his vantage point, a physician could encounter no more captivating a patient than Lia, no finer a set of parents than the Lees.

Then I told him what had happened later—the Lees’ noncompliance with Lia’s anticonvulsant regimen, the foster home, the neurological catastrophe—and asked him if he had any retroactive suggestions for her pediatricians.

“I have three,” he said briskly. “First, get rid of the term ‘compliance.’ It’s a lousy term. It implies moral hegemony. You don’t want a command from a general, you want a colloquy. Second, instead of looking at a model of coercion, look at a model of mediation. Go find a member of the Hmong community, or go find a medical anthropologist, who can help you negotiate. Remember that a stance of mediation, like a divorce proceeding, requires compromise on both sides. Decide what’s critical and be willing to compromise on everything else. Third, you need to understand that as powerful an influence as the culture of the Hmong patient and her family is on this case, the culture of biomedicine is equally powerful. If you can’t see that your own culture has its own set of interests, emotions, and biases, how can you expect to deal successfully with someone else’s culture?”

I do not know if Lia would be able to walk and talk today had she been treated by Arthur Kleinman instead of by Neil Ernst and Peggy Philp. However, I have come to believe that her life was ruined not by septic shock or noncompliant parents but by cross-cultural misunderstanding.

Lia’s case—or “narrative,” as Kleinman would put it, since he believes every illness is not a set of pathologies but a personal story—was one of perhaps a hundred Hmong medical cases I heard about over the years. Most turned out badly. The sample is probably skewed, since doctors and patients remember calamities—their own and others’—more vividly than they remember successes. Still, the imbalance is disquieting.

A child in San Diego was born with a harelip. Her doctors asked the parents’ permission to repair it surgically. They cited the ease of the operation, the social ostracism to which the child would otherwise be condemned. Instead, the parents fled the hospital with their baby. Several years earlier, while the family was escaping from Laos to Thailand, the father had killed a bird with a stone, but he had not done so cleanly, and the bird had suffered. The spirit of that bird had caused the harelip. To refuse to accept the punishment would be a grave insult.

A child in Michigan had a retinoblastoma, a malignant tumor of the eye. His doctors asked the parents’ permission to remove his eye in order to prevent metastasis. His parents fled the state, certain that if their son had the surgery he would be reincarnated, over and over again, with an incomplete body.

A child in Minnesota had a spinal deformity. His doctors asked his parents for permission to perform corrective surgery. After his birth in a Thai refugee camp, a
txiv neeb
had told the parents that the boy was destined for greatness as a Hmong leader. The
txiv neeb
had also warned that if the boy’s body were ever altered, his parents would die. A few days after his parents reluctantly acceded to the operation, but before it was performed, his father died. His mother fled the state with her son.

A woman in Merced, who had delivered five children without complications, arrived at the hospital in the final stage of labor with her sixth child. Observing that the umbilical cord had prolapsed—a potentially fatal problem if the cord is compressed by the baby’s head—the nurses attempted to relieve pressure on the cord by forcing the woman to crouch on her hands and knees and pushing the head back inside the birth canal, while screaming at the husband to sign a consent form for a cesarean section. He did so, under duress, but while his wife was being prepared for the surgery, the baby was born vaginally. No interpreter was present. The parents believed that the nurses wished to harm the baby because they thought Hmong refugees had too many children, and that the doctor wished to perform surgery in order to make a larger profit. Accordingly, the mother decided to give birth to all her future children at home.

There were, of course, some good outcomes, mostly not in pediatric cases. Here are three.

A young combat veteran who had just arrived in the United States attempted to hang himself in the shower room of the California transit facility in which he had been temporarily placed. During the next several days, he was isolated in a hospital room, offered American food, and forced to submit to a comprehensive medical workup, including blood tests. He neither ate nor slept. Finally, his doctors discontinued the blood work. They gave him Hmong food, and he ate. They let a Hmong man stay with him overnight, and he slept. Learning that he had feared he would be unable to feed his children, they explained the mechanics of Refugee Cash Assistance and showed him photographs of his future home. He and his family resettled successfully in Iowa.

A middle-aged man in Merced, hospitalized for an infection, was asked by an interpreter who was filling out a routine nursing admission form whether he wished, in case of death, to donate his organs. The man, believing that his doctors planned to let him die and take his heart, became highly agitated and announced that he was leaving the hospital immediately. The interpreter managed to calm him and assured him that the doctors’ intentions were honorable. The man stayed until his recovery a few days later, and a sympathetic hospital administrator, anticipating similar misunderstandings with other Hmong patients, fought successfully to have the organ donor box removed from the admission form.

A hospital social worker in San Francisco, accompanied by an interpreter, was sent by the public health department to visit a woman with tuberculosis who had refused to take her isoniazid tablets. The social worker, whose name was Francesca Farr, began to talk to the patient, who was in her eighth month of pregnancy. “No, no,” said the interpreter. “You should talk to her
husband
.” So Farr asked the husband why he didn’t want his wife to take the medicine. “No, no,” said the interpreter. “Don’t ask him that yet. First, you should wish him some things.” Farr told the husband she wished that his children would never be sick, that their rice bowls would never be empty, that his family would always stay together, and that his people would never be in another war. As she spoke, the husband’s hands, which had been clenched, relaxed. “Now,” said the interpreter, “you can ask him why his wife isn’t taking the medicine.” Farr did. The husband answered that if she took the medicine, their baby would be born without arms or legs. Farr touched the patient’s abdomen, and told the husband that if the baby didn’t already have arms and legs, the woman wouldn’t be so big, and the baby wouldn’t be kicking. The husband nodded, walked into the other room, returned with a giant bottle, dumped the contents into Farr’s hands, and said that his wife would take the pills.

This last case warrants particular scrutiny, because Francesca Farr did a number of things that generally weren’t done at MCMC, and certainly weren’t done with Lia. She made a house call. She took along a capable and assertive interpreter whom she treated as a cultural broker (by definition her equal, and in this case her superior), not a translator (her inferior). She worked within the family’s belief system. She did not carry
her
belief system—which included a feminist distaste for being forced to deal with the husband instead of the wife—into the negotiations. She never threatened, criticized, or patronized. She said hardly anything about Western medicine. She flew completely by the seat of her pants.

Also, Francesca Farr
liked
the Hmong. Loved them, I should say. That was something she had in common with everyone I knew who had ever worked successfully with Hmong patients, clients, or research subjects. Dan Murphy once said that of the ten most admirable people he had met in the last decade, seven or eight were Hmong. Jeanine Hilt told me that if her house caught on fire, the first thing she would grab was a framed
paj ntaub
that Foua had stitched for her. (It still hangs in a position of honor over her partner’s dining table.) Sukey Waller said that after she spent time with her Hmong clients, Americans, by comparison, seemed dry. The anthropologists Eric Crystal and Dwight Conquergood were so intoxicated by Hmong culture that their ethnographic commentaries, while academically unimpeachable, sometimes sounded like mash notes.

Neil and Peggy liked the Hmong, too, but they did not love them. They could have had a practice full of white middle-class patients who always took their medicine and whose insurance companies always paid on time. Instead, because they were altruists, they had the antithesis. Their choice was morally satisfying, but whenever a patient crossed the compliance line, thus sabotaging their ability to be optimally effective doctors, cultural diversity ceased being a delicious spice and became a disagreeable obstacle. Neil and Peggy were excellent physicians, but by Kleinman’s definition—a concern for the psychosocial and cultural facets that give illness context and meaning—they were, at least during their early years with Lia, imperfect healers.

But love, unlike the etiology and diagnosis of pediatric seizures, cannot be taught. It can only be granted. (I believe that Neil and Peggy now love Foua.) In its absence, is there anything else that doctors can do to take better care of their Hmong patients?

Bruce Thowpaou Bliatout, the Hmong medical administrator who wrote about mental health problems as traditional ailments of the liver, has some suggestions. Not surprisingly, almost all of them are cultural, not medical. To improve Hmong health care in general, arrange for female doctors to treat female patients, and male doctors to treat male patients. Involve the patients’ families in all decisions. Use interpreters who are both bilingual and bicultural.
^*
To persuade Hmong people to undergo necessary surgery, and to improve the outcomes if they consent, enlist the support of family and community leaders. Minimize blood-drawing. Allow relatives or friends in the hospital room around the clock. Allow shamanic ceremonies in the hospital. To improve mental health, encourage traditional arts such as weaving, music, dance, and silversmithing. Acknowledge Hmong contributions to U.S. military operations in Laos. Promote clan reunification through secondary resettlement. Be careful not to undercut the father’s authority in Hmong families. Give refugees more opportunities to help themselves. Fuss over them less.

Most important, says Bliatout (and many others as well), practice conjoint treatment—that is, integrate Western allopathic medicine with traditional healing arts, or, as Nao Kao Lee put it, use “a little medicine and a little
neeb
.” Kleinman, who has commented that the doctor cures the disease but the indigenous healer heals the illness, believes that conjoint treatment does more than promote trust between the doctor and the patient; because illness is so profoundly affected by psychosocial factors, it actually improves the outcome. Although the Lees did treat Lia with herbs, dermal therapies, and animal sacrifices, their regimen ran parallel to Lia’s medical course rather than intertwining with it. Neil and Peggy were dimly aware of some of these remedies (for example, when Lia had marks on her chest from coin rubbing), but they never asked about them, and they certainly never recommended them. It would never have occurred to them to emulate Luis Estevez, a pediatrician at Lincoln Hospital in the Bronx, who has referred Puerto Rican and Dominican patients to a Santería high priest as he might refer them to an ophthalmologist, or Yasmin Collazo, a psychiatrist at Elmhurst Hospital Center in Queens, who has allowed a Mexican
curandero
, or folk healer, to perform a cleansing ceremony in the hospital for a schizophrenic patient. Dr. Collazo said that after the visit, the patient was far more compliant in taking her antipsychotic medications, which she believed the
curandero
had sanctified.

Bliatout wrote, “Since Hmong health treatments never hurt anyone, but could possibly help a patient, [they] should be seriously considered as part of a client’s course of treatment.” Unfortunately, his first premise is not always true. Some Hmong folk remedies contain arsenic, lead, and opium. However, intervention by a
txiv neeb
, whose work is conducted entirely on a metaphysical plane, is always safe, and many people (including Bliatout, Sukey Waller, Dwight Conquergood, and the French anthropologist Jacques Lemoine) believe that because the mind-body dichotomy does not exist in Hmong culture and because so much illness among Hmong refugees has a psychogenic element, the
txiv neeb
is an ideal collaborator in the healing process. Indeed, according to Conquergood, no one is better qualified to span the gap between the medical and the spiritual:

Conquergood should know, having been a
txiv neeb
’s patient himself when he had dengue fever. He has described his soul-calling ceremony, which was attended by most of his friends at Ban Vinai—and which he claims was truly restorative—as a festive and affectionate drama that was “saturated with care and humankindness.”

Lemoine has commented that a
txiv neeb
is far more like a psychiatrist than like a priest. However, there is a crucial distinction:

When I read this, I thought of how often the Hmong react to threat or blame by fighting or fleeing, which in the medical arena translate to various forms of noncompliance. The
txiv neeb
’s exclusion of guilt from the transaction dovetails perfectly with the Hmong temperament. The doctor’s standard message (“If you don’t take these pills/have this operation/see me again next Tuesday, you’ll be sorry!”) does not.
^*