Map of life expectancy at birth from Global Education Project.

Wednesday, April 13, 2005

Exploitation of Children

True story.

Rosa was frightened. Her little boy Diego was sick again. Diego had asthma, he’d had a positive TB test, he had recurrent ear infections and had been operated on twice to have tubes placed to drain his ears. Two months ago a doctor told her Diego had salmonella, and the clinic had mailed her a letter about it, but she couldn’t read it because it was in English. Now Diego had been up all night with a fever and vomiting, and his ear hurt again. When they came to the clinic, there was no-one to interpret, so Diego’s twelve year old sister Juanita had to do it.

Juanita did her best, but when she tried to translate her mother’s questions, the doctor just ignored her, or wouldn’t even let her speak. Juanita tried to tell the doctor that Rosa was worried about a lump on the baby’s lip, that she wanted to know what the letter said about the salmonella, that Diego had had diarrhea and fever. But the doctor just said the letter was too old to worry about. Then the doctor tried to ask Rosa what Diego took for his asthma, but Juanita didn’t translate the question correctly. The doctor tried to ask how long ago Diego had his last asthma attack but Rosa thought she had asked how often he took medicine for his asthma, and the doctor’s question was never answered. Rosa tried to ask what was wrong with Diego’s ears, and what she should do if he kept vomiting, but her questions were never translated. Then the doctor said to give him Tylenol or Advil, but Juanita told her mother to give him both.

When my colleague Irma Rodriguez interviewed Rosa after the visit, she asked if the family had been back to Puerto Rico to visit. No, said Rosa, nor can we. Why not? “Because the father of the children is hunting us to kill us.” Rosa said she was going to keep on living and fighting for her children, but now they were staying in a homeless shelter. Juanita had seen her father repeatedly beating her mother, and was in psychiatric treatment for post-traumatic stress. But the doctor never learned any of this.

Communication is the most fundamental requirement of medical practice. Taking care of people is not just about biomedical science, although technically precise communication is essential. It depends on mutual trust, rapport, and the exchange of experiences, beliefs and feelings. Facilitating communication across a language barrier is a demanding professional skill. An interpreter must be truly fluent in both languages, but much more than that is required. Interpreters must be conversant with medical concepts and terminology. They must possess special skills for mediating the structural differences among languages and the deeply embedded differences in world view. For example, Spanish grammar is more complex than English, while English has a larger vocabulary. There are nuances of meaning in each language that are difficult to represent in the other. Interpreters must also have skills to mediate culturally determined expectations about interactions, the physician and patient role, and theories of physiology and disease. Interpreters must meet high ethical standards. They must scrupulously respect confidentiality and avoid injecting their own judgments into an interaction that properly belongs to physician and patient.

Obviously, children can never meet these requirements. Furthermore, having children interpret places demands on them that may be overwhelming and frightening, and may expose them to inappropriate or upsetting information. A 15 year old girl told me that she was serving as interpreter for her mother, when she found she didn’t understand what the doctor was saying, so they called for a Spanish-speaking secretary to help. “Don’t you understand what they’re telling you?” the secretary asked her. The girl went on, “’No, I said.’ She tells me, ‘They’re telling you’re your mother has,’ some sort of thing, cancer, I don’t know, I was like, ‘No, I don’t understand what you’re saying’ . .. and the lady was just so rude.”

But it is not only children who should not be acting as interpreters. In another case, a social worker doubled as interpreter. The mother asked for a prescription for her baby’s cough, and the social worker told the doctor that she had asked for a vaporizer. The mother said that her husband sometimes smoked in the house, and the social worker said the mother had asked the doctor to write a letter to the husband telling him not to do that.

In another case, a nurse interpreted. The mother said her baby’s appetite was “regular,” which in Spanish means only fair, but the nurse interpreted this as “normal.” A different nurse interpreted for a mother whose baby was not nursing well. The doctor thought that the problem was probably nipple confusion, because the mother was mixing breast feeding and bottle feeding, and advised breast feeding only. But the nurse had decided that the baby had milk intolerance, and instructed the mother to buy soy-based formula, rather than translate the doctor’s instructions.

Some have argued that requiring trained, professional interpreters would cost too much. But misdiagnosis and mistreatment are even more costly in the long run, and the potential human costs are not measurable in dollars. Having non-professionals interpret, except in emergencies where there is no alternative, is unethical, because it represents a violation of patient confidentiality and results in inferior medical care, which is discriminatory. Having children interpret is doubly unethical because it is exploitive and harmful to the child.

The Office for Civil Rights of the U.S. Department of Health and Human Services has for many years interpreted the Civil Rights Act of 1994 as requiring that hospitals provide professional interpretation when necessary. But the law is not enforced in this country. The result -- misdiagnosis, wrong treatment decisions, traumatized children, family relationships damaged, even fatal misunderstanding.

1 comment:

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