Chapter 17: The Eight Questions
Lia neither died nor recovered. She grew only a few inches, gained only a little weight, and always looked younger than her age. Her siblings grew up around her, part of a close-knit family, some excelling in sports and others going to university.
Nao Kao gained weight and had high blood pressure, while Foua felt tired a lot of the time. Jeanine persuaded them to send Lia to the Schelby Center for Special Education for a few hours each day, not to educate her, but rather to give her parents some rest. Dee Korda often saw her there, as one of her own children also attended Schelby. She could hardly bear to see her; her entire family had taken Lia's fate hard.
In 1993, Jeanine had an acute asthma attack, went into respiratory failure, and was deprived of so much oxygen that she lost all brain function - the same thing that had happened to Lia. She died three days later. Foua was devastated, feeling that she had lost her American daughter.
Neil Ernst won the first Faculty Teacher of the Year award at MCMC's residency program, and Peggy Philp became Merced's County Health Officer. They continued to share their practice as well as their home lives. Their connection with the Lees deepened when their son Toby was diagnosed with leukemia at the end of third grade. Foua cried with them and always asked how Toby was doing.
After Lia's brain death, the Lees had hardly any trust left in the American medical system. When their daughter May broke her arm, they refused a cast and instead bathed the arm in herbs and wrapped it in a poultice for a week. (She fully recovered.) When a pot of hot oil burned Foua's hip and leg, she sacrificed two chickens and a pig. When Foua got pregnant and had a miscarriage, Nao Kao called an ambulance only after she fell unconscious. Lia received the standard vaccinations before being admitted to Schelby, but when she started developing seizure-like twitches, her parents were sure they were caused by the shots and told Neil they never wanted Lia to be immunized for anything again.
Lia's case confirmed the Hmong community's worst fears about the medical system and may have led to any number of Hmong avoiding the hospital. The nurses at MCMC, for their part, grew angrier each year, wondering why the Lees had been so ungrateful for Lia's free medical care, why they had insisted on doing things their way, and why they had been noncompliant. Their prejudices about the Hmong were strengthened as they blamed the parents for what happened.
Fadiman was surprised to hear from Terry Hutchinson, Lia's pediatric neurologist at Valley Children's Hospital, that lack of medication probably had nothing to do with her final seizure. Her brain was destroyed by septic shock, and it was the septic shock that caused the seizures. It may have been that the Depakene the doctors had prescribed to control Lia's epilepsy compromised her immune system and made her more susceptible to the bacillus which caused the septic shock. Her parents may have been right when they said her illness was caused by too much medicine.
Hearing what Hutchinson had said, Neil and Peggy looked at Lia's records and saw that there were some signs that she already had septic shock at MCMC. Had they realized this at the time, they would have treated her differently. Since Lia's problem had always been her seizure disorder, however, they never thought to check if it could be anything else.
Even though Lia was technically still alive, her physicians spoke of her in the past tense and thought of her as deceased. By doing so, they were admitting defeat: medicine had not been able to save her.
When asked if he would have done anything differently, Neil responded that he wished they had used Depakene sooner, as it was so much easier for the Lees to administer. He learned a lot from Lia - that you have to do the best you can with a dense cultural barrier, and that if something happens anyway, you have to be satisfied with small successes. He felt that Lia made him a less rigid person.
Foua, on the other hand, said she didn't learn anything from what had happened. She just felt confused, because she didn't understand how the doctors could know how Lia would be the rest of her life and yet not be able to fix her. She was worried that nobody would care for Lia once she and Nao Kao were gone, and that her daughter would end up in an institution. She wondered if this would have happened to Lia if she had been in Laos, since she felt it was the doctors who caused the problem by giving her the wrong medicine. She would have known what to do if a dab had hurt Lia, but Hmong medicine could not fix what the American doctors had done to her.
Fadiman wonders if anything could have made the story turn out differently. If the Lees had given Lia her anticonvulsants from the beginning, she might still be living a normal life. However, it wasn't clear who should be held accountable. What if Neil had prescribed Depakene earlier? What if he had arranged a visiting nurse to give her her medications instead of placing her in foster care? What if he had sought out a bilingual Hmong leader to help? What if MCMC had had better interpreters? Dan Murphy felt nothing could have been done, as the gulf between the Lees and Lia's doctors could not be bridged. However, what if the residents who first treated Lia had tried to find out what her family believed and had thus earned their trust?
Most discussions of cross-cultural medicine contain eight questions, designed to elicit a patient's "explanatory model," developed by psychiatrist and medical anthropologist Arthur Kleinman. Fadiman went through each question and answered it as she believed the Lees would have, explaining how they thought Lia's epilepsy was caused by soul loss when her sister slammed the door, that a dab was shaking her, and that she should be treated her with Hmong medicines and with ritual animal sacrifices. Neil and Peggy were shocked by the responses, but Kleinman was delighted. His retroactive advice to Lia's physicians: get rid of the term "compliance," as it implies moral hegemony; try to negotiate with rather than coerce the family; and realize that your own culture of biomedicine also has its interests and biases.
Chapter 18: The Life or the Soul
In Fadiman's opinion, Lia's life was ruined not by septic shock or by noncompliant parents, but by cross-cultural misunderstanding. Her story is one of around a hundred that Fadiman heard about Hmong medical cases, and most turned out badly. Parents had refused surgery to remove a harelip and a tumor of the eye, believing they had been caused by something they had done and that it would be insulting to refuse to accept a punishment. Others had refused to correct a spinal deformity, thinking that surgery could condemn a person to be reincarnated with an incomplete body. Still others would not give birth at the hospital, believing that doctors recommended certain procedures (such as cesarean sections) simply to make a larger profit.
There were some success stories, in which medical staff successfully communicated with Hmong patients and changed their minds. In one case, a woman with tuberculosis refused to take her medication. The social worker was able to change her mind by following the advice of her interpreter: speaking to the husband, wishing him good things first, and reassuring him that his fears that the medication would cause his wife's child to be born without limbs could not come to fruition, as the baby already had arms and legs. This social worker worked within the family's belief system, said little about Western medicine, and never criticized or patronized the Hmong. Like others who had good relationships with the Hmong, she loved her clients.
Neil and Peggy liked the Hmong, but they didn't love them. They chose to work in a culturally diverse area, but they were not very good at considering the psychosocial and cultural aspects of disease. They became frustrated when patients were noncompliant and hindered them from doing their best work.
Love cannot be taught, but there are some ways in which doctors can take better care of Hmong patients. It is best if doctors can treat patients of the same sex. Families should be involved in all decisions, and doctors should use interpreters who are both bilingual and bicultural. To persuade the Hmong to undergo surgery, it is best to enlist the support of family and community leaders. Minimize the drawing of blood, allow family members and shamans in the hospital, encourage traditional arts, and acknowledge the Hmong military contributions in Laos. Allow clans to reunite through secondary resettlement, avoid undercutting the father's authority, and give refugees more opportunities to be self-sufficient. Most importantly, integrate Western medicine with traditional healing arts. Kleinman believes that doing so not only promotes trust, but also actually improves the outcome, since illness is affected so strongly by psychosocial factors.
Shamans are particularly good collaborators in the healing process. While some Hmong folk remedies contain harmful ingredients such as arsenic, lead, or opium, shamanic treatment is always safe. A tvix neeb provides an explanation of the illness that avoids blaming the victim, so there is no guilt associated with suffering. The Hmong tend to react to threats or blame by fleeing, which in the medical arena translates to noncompliance; the tvix neeb eliminates such feelings and reactions. During the mid-eighties, a short-term grant funded a project in which Hmong healers and Western mental health providers worked in tandem. The project was incredibly successful. At times the ceremony caused the patient to be more amenable to medical procedures, as he or she accepted that the pain was not a spiritual problem. At other times, the ceremony alone was enough to alleviate the pain.
While the grant expired after fourteen months, there have been other signs of improvements. The 1992 edition of the Merck Manual of Diagnosis and Therapy, the most widely used medical text, included for the first time a section on cross-cultural issues. In 1995, national guidelines for psychiatry resident training stipulated for the first time that residents learn to assess cultural influences on patients' problems. In 1996, the American Academy of Family Physicians endorsed a set of guidelines on culturally sensitive health care. Most medical students now study cross-cultural issues, and some residency programs are adopting similar practices.
Health care in Merced has been evolving as well. In 1996, the Merced County Health Department invited a cross-cultural education program to train its nurses, administrators, and interpreters in "cultural competence." The health department now produces a segment for the Hmong TV channel that features a tour of MCMC and provides answers to commonly asked questions. After treating a Hmong man for several months, MCMC staff began wondering whether tvix neebs could be certified to visit patients, if Hmong could serve as cultural brokers, and if MCMC could actually reduce its costs by employing certified interpreters.
At the same time, it has been challenging to actually put this knowledge into use. Doctors eagerly embrace new drugs, technologies, and procedures, but their overreliance on the "culture of biomedicine" may blind them to the merits of cross-cultural medicine. Caught up in their work, doctors can become so myopic that there is even an article that explains to them how to recognize that they are having feelings, based on the physical counterparts of those feelings. This article may be amusing, but it points out that medical school does do an excellent job of separating students from their emotions. Dissociation is necessary, as otherwise doctors would be overwhelmed by their constant exposure to suffering.
Some schools are trying to bring back a "whole doctor-whole patient" model, where the doctor brings his entire humanity to the hospital, and the patient is seen as a complete person and not just a disease. Reflecting this trend, between 1992 and 1995 the percentage of medical students choosing to become generalists nearly doubled.
Despite these changes, Western medicine is still one-sided. Doctors attend medical school and residency in order to acquire knowledge that their patients don't have, and it would be a lot to ask them to consider that their view of reality was only one of many. However, it may not be too much to ask that doctors at least acknowledge their patients' realities.
The difficulty of crossing between medical and spiritual viewpoints was illustrated when Fadiman invited Bill Selvidge, a doctor, and Sukey Waller, a psychotherapist, to have dinner together. In their discussion, Bill argued that the child's welfare is more important than the parents' belief, since if the child dies, he or she won't have the opportunity to accept or reject those beliefs twenty years later. Sukey, on the other hand, empathized with parents who might believe that having their child die from surgery would condemn him or her to eternal damnation. Bill saw the life as most important, and Sukey, the soul.
Chapter 17 summarizes what happened to the story's main characters and what they learned from the ordeal. It also reveals that ironically, Lia's parents may have been right all along - that it may really have been medicine that made her sick, as her anticonvulsive medication may have weakened her immune system enough to allow the bacterium which caused the septic shock to take hold.
There are additional ironies as well. Jeanine Hilt, who loved Lia and her family and did her best for them, ended up suffering the same fate as Lia after having a severe asthma attack. Foua also suggested that Lia's tragedy might not have occurred had the family still lived in Laos, where they could have treated her illness with herbs they found in the forest.
In both chapters, Fadiman posits solutions to improve health care for the Hmong: for example, get rid of the term "compliance," as it implies moral hegemony; try to negotiate with rather than coerce the family; use interpreters who are both bilingual and bicultural; enlist community leaders to persuade patients to undergo surgery; and integrate Western medicine with traditional healing arts. She cites examples of successful programs, such as a project in which Hmong healers and Western mental health providers worked together to treat patients, and notes the increase in education among medical staff on cross-cultural issues. These solutions give a hopeful tone to the book and imply that Lia and her family did not suffer in vain, as their story may positively influence medical training and practice.
Despite these signs of improvement, Fadiman acknowledges an underlying difference in world view: doctors believe that protecting a child's life is paramount, while families may believe it is more important to save the child's soul. Moreover, doctors are equipped with "scientific" knowledge that the Hmong do not have. Thus, medicine cannot entirely become a practice of cultural compromise.
The question is raised as to whether Lia's outcome would have been different had she been treated by a doctor such as Arthur Kleinman instead of Neil Ernst, who was unwilling to compromise his medical standards to earn the Lees' full cooperation. If this were true, Lia's story would not be as much of a tragedy in the literary sense, as her fate could have been avoided. However, Neil acted as he did not only because of his personality, but also because his medical knowledge and training compelled him to act in a way that contradicted the Lees' wishes. In this view, it is not only cross-cultural misunderstanding, but also the collision between culture and science, which caused Lia's tragic demise.